Topamax and weight loss

[bobbiek]

I have digenerative disc disease and my neirologist just prescribed topamax,
he said it would help with the pain and tingling but could result in weight loss.
  I am wondering if prescribing topamax for ddd is common among neurologists? I can't seem to find any other information related to topamax as a pain med, only information I have is that it's a powerful drug with lots of side effects, most not so good.
The weight loss aspect is the only plus...also could this drug alter my brain function since I know it is used for bi-polar and seizure disorder... I'd like to know more about this med both from a neurologists view and from a weight loss specialists view. before I make a decision to take this medication
Thanks in advance for any/all responses

[chelley581]

hi.
I am not a specialist or a doctor of any kind but i am bi -polar,
and i have been on Topamax(200mg) for over 2 years now.I take it along with Wellbutrin.
I just wanted to tell you my experience with this drug.I have struggled with my weight all of my life . I am now 35,  3  children
and when i was diagnosed manic-depressive i was on prozac, wellbutrin and taking hi levels of prescription weight loss pills.
I was losing my mind but i wasn't losing any weight!
When my Psychatrist decided to try me on Topamax it was because of my anieity over my weight gain with the standard mood stabilizers.
Within these past two years I have lost 38 pounds taking this medicine. I will say that I have done low- carb about 8 of those months but ashamed to say no exercise.I have suffered with migrane headaches for about 10 years - they are gone . I think i have had one mild one .
Now I am not saying it is the greatest drug in the whole wide world
I have some trouble with word retrieval but not much.But other than that I am okay with it . I hope this helps.

[Ataraxia]

I was prescribed Topamax along with an appetite suppressant (Adipex) for weight loss a bit over a year ago and stopped taking them after two and a half months.  I did not lose all of the weight I had wanted to, but most of it.  I had gained 55 pounds while on Paxil over the course of two and a half years.  By taking a combination of the two medicines, I lost 22 pounds the first month, 10 pounds the second month, and 8 pounds the first half of the third month.  I did not like the other effects of taking the medicine, though.  The Adipex made my mouth extremely dry, which nothing helped, and the Topamax made me extremely high-strung and when it was getting close to the time for me to take more, I would get very agitated at anything.  Sometimes I feel weird in my head--I can't really describe it, but just odd and I wonder if it has anything to do with the Topamax, but I am not for sure.  I looked it up a month or so ago and it seems some people hear a radio-like voice in their head after taking it and it seems to get better after they are off for some people, but not everyone.

As long as you have a good doctor though, they are probably prescribing what you need, maybe medicines won't have the same affect on you as it does some people.  There are probably many people who take it and have no problems.  Good luck whatever you decide with your health issues!

[Ataraxia]

Oops!  I forgot to mention that I do have a friend that took Topamax for migraines.  She said it helped her immensely, but she did lose weight with it.  I don't think she had any of the bad side effects, but I am not for sure.

[MissBubba]

My name is Lianne and I am 18 years old. I have suffered from migranes for years, and couln't find the source. I was put on depakote, but it made me sleep all the time (literally) so my doctor put me on topamax. I haven't had any migranes, I'm not dreadfully tired and as an added bonus, it is already helping me to lose weight. I have struggled with weight all of my life, so knowing that this can help is wonderful. I eat smart and exercise, but before, I slept all the time. Now I don't eat as much and I have more energy. It is great hope for anyone with epilepsy, migranes, maia, but I don't think it should be prescribed for people as a weight loss pill. Their are other not so wonderful side  effects, such as mind blocks, tingly hands and dry mouth. Plus, I don't think people should be given a pill just for weight loss. It is a good benefit, but exercise and diet are a better way. It's fair to us because we need the medication to aid other needs.

[Julie101301]

Hi I just wanted to tell my story, I went back to the doctor today and they have to wean me off the Topamax I was on it for Migraines. I am also on Wellbutrin for depression and have been for years. They put me on the Topamax about 3 weeks ago I have notice some weight lost however I went "crazy" lol. The doctor said that with doing what it was supposed to by getting rid of the headaches It also had a adverse reaction on me that that sent me into the worst bout of depression I have every had. It almost seemed liked a bi-polar episode and I have never been diagnosed with that. I just wanted to share my story cause I truly thought I was going "crazy" and it was just one of the side effects.

[gtarman]

I went to my doctor for a weight issue and he prescribed me Topamax. The first time I didnt really think it was working I took it for the first four weeks and lost about 20lbs. The problem is I was taking it with a few other medication for a nerve disorder due to  nerve damage during a surgery i had. The one thing I did notice Is that I started these meds at the same time. Peculiar side effect of one of these meds was that it made sodas taste horrible, now it was hard to tell which one it was. I wasnt giving up my sodas so i struggled through the bad taste when i would drink on. The thing is I very seldom drank one because of that. So I attributed that to one of my reasons for loosing the weight. I was so busy with doctors that I didnt think about eating was another excuse I made up for not finding time to eat. But what I didnt realize until I stopped taking the Topamax after the 4th week was that the Topamax had not only been the cause of the nasty tasting soda, which was the only true negative side effect i have had, lol, It took away that need for me to be putting things in my mouth, not necessarily the hunger, because I was never really hungry. I never had a chance to be hungry. I was always eating something, and topomax (topamax) took away that habit.

Im on my second try with Topamax. By itself 5th week, minus 25lbs. I havent had a soda in 5 weeks, and as far as the side effects go. Remember the side effects are possible side effects. The could happen to some, all or none. Its the chance we all take to get well. Good Luck, and God Bless You

[ravenfar]

Julie101301 -- You could have written my comment.  I thought I was going nuts.  My poor husband.  I was put on Topamax four weeks ago and have been building up to 100mg.  I have been suicidal this week and that is so unlike me.  We got a puppy six weeks ago and there have been times that I could drop kick her out the door.  My mood swings have been horrendous.  My husband said that I've been like Jeckyl and Hyde.  The first action at my follow up visit with my Neurosurgeon next week will be to wean me off this ****.  I can lose weight through Weightwatchers.  My brain is too important to fry through whatever this drug is doing to it!  I'll suffer thru the migraines.  Give me imitrex any day.

[Suzzette]

My name is Suzzette. I am new to the web site.

I was prescribed Topamax about a year ago by my Pain Doctor. I stopped taking it because it made me feel confused.

I am about to try it again for the pain, but most of all... for me... THE WEIGHT GAIN.

I had a 3 level spinal cord decompression and loads of steroid injections for the bone graft and the pain. That translates into 50 pounds I gained.

I am so desperate to get this weight off, I'm just about willing to do anything. It is causing huge problems in my marriage. My hubby has pretty much said he isn't attracted to me any more.

Anyone out there have any feed back on Topamax... or anything that'll help me shed the pounds?

Suzzette

[Cessy]

I am a 28/female prescribed Topamax in June to help with meningitis headaches but have remained on Topamax for severe chronic headache treatment as well.  I also take Wellbutrin for depression so I was nervous when trying Topamax knowing it could effect my treatment for depression.  At first the depression seemed to get worse for a couple of weeks but my doctor encouraged me to try and stick out the side effects as most side effects subside after several weeks of introducing a new medication to your body. He also explained that Topamax is a mood stabalizer and I really needed to give it a fair chance before throwing in the towel.  He had a hunch it may help with my depression as well...  I am so happy I was able to be patient.  With the encouragement of family and friends I made it through the initial onset of the side effects and they've subsided. My headaches are minimal and my depression is under control and I haven't been able to say that in 3 years!  I too have struggled with my weight due to all of the anti-depressants I've been on and off, and on again.... but this combination works for me.  Each time I increased my dosage I experienced tingling in my hands and a little fatigue but now I take my medication before I go to bed and I feel great during the day.  The tingling has also stopped.  I've gone from 142lbs to 115lbs without changing my habits.  I have less of an appetite now so I make sure I'm eating enough so I don't lose anymore.  In my experience/opinion, Topamax is worth trying.  Give it a fair chance. There were times when the side effects tested my patience, but I would do it over and over again even if it were only a 50/50 chance I'd have the same result!  If you are one of us suffering from and living with a condition that is life altering, it's a crappy hand to have been delt.  But it is managable and there is a better way to live!!.  If Topamax ISN'T your solution, please please don't give up.  Keep pushing on.  There is a solution for you too!

[Holly Noelle]

I am trying Topamax for the 3rd time for my occipital neuralgia.  I have been on Neurontin for many years and am now piggy backed with 100mg of Topamax.  I quit before because of nausea and a very upset stomach with constant burning, loud burping (sorry) and over all queezy feeling.  I really want the weight loss benefit but can't take this too long.  The only reason I am able to make it this time is I stopped a few other meds-Previcid,Zocor and Celebrex. That makes it easier.  I also have difficulty with soda or any carbonated drink.  They all taste yucky and taste flat.  Some foods feel odd to chew.  Has anyone else had gastric problems?  Will this pass or should I give it up before I further tear up my stomach?  Thanks if you have any tips for me.

[draggonflygirl]

I was in a car accident nearly a year ago that had left me suffering from excruciating backpain and headaches. Only frequent visits to the chiropractor (3 x week) or Darvocet seemed to help. 3 days ago I saw a neurologist after a headache that had lasted for 2 whole days. He recognized the headaches I'd been having as being migrains and prescribed Topamax. He told me to be careful, that weightloss was a side effect. I took the first dose the day of my appointment, and the next day I woke up thankfully without a migrain, but to my suprise without any backpain. I had researched the drug before taking it and didn't see anything about pain, so I went on the internet and finally found some information regarding Topamax being used for neuropathic pain, simularly to Neurontin. Well needless to say I'm thrilled. I haven't been without pain in a year:) The only thing bad I have to say about Topamax so far, you all have seemed to experience, it makes carbonated drinks taste terrible!

[Chantelle127]

Hi!
I just started taking topamax 2 days ago! I was pleased to hear that most of you have had a good experience with it!  This is the 4th seizure med that I have tried since finding out that I was epileptic a few years ago!  I tried Lamictal but it made me literally stupid and gave me horrible acne, then I tried Depakote but it made me like the living dead I was miserable and tired and I gained 20lbs and started losing my hair (i didnt appreciate that), currently I'm on trileptal which is great because my hair came back and my depakote weight went away but i dont think it is getting rid of my seizures so its basically useless, so now I am slowly adding topamax to my regime! This week i'm starting 25mg at bedtime and working my way up week my week til i'm at 100mg twice a day.  It should take about 2 months to get to that dosage but I'm getting kinda excited hearing about the benefit of weight loss especially since it was weight loss pills (metabolife and xenedrine) that caused me to find out that I was epileptic in the first place! The doctor told me that i might get tingling in my fingers and i might feel a little dopy but happy dopy he described it as, so I figure i can deal with that!  If I start losing weight at a rapid pace i'll definitely post again! And I'm gonna just give up soda now even though im kinda curious to see how bad its gonna taste! Thats all for now! Keep posting I find this soooo interesting!

[AnnieP]

I am worried and want some other opinions before I start taking topomax (topamax).  I have been on Buspar for several months now.  When the Dr. increased my buspar to 1/2 a tablet each day I experiences sleeplessness, and a really bad headache.  Now the Dr. wants me to start topomax (topamax) with the buspar.  I have read all the different things I can find on Topomax (topamax) and wonder if anyone has taken both Buspar and topomax (topamax).  I would appreciate anyone would tell me of the experiences.

Thanks
Annie

[dubbogod]

I was on Topamax 100 mg previously and lost 20 lbs.  I went off it due to the cost, but would like to go back on again, as my migraines are back with a vengeance.  I also gained back about 10 lbs.  Did anyone who went back on it continue to lose weight?  I was told it didn't work the second time around for weight loss.  Also, if I am refilling my prescription after being off it for 2 months, should I titrate up?  Thanks.

[barksdale]

Hello all,
I visited the Dr. again today and brought up the topic of weight loss.  I have been eating better the last 2 years than I ever had in my life.  I work out 3 times a week and have a crazy busy schedule.  I am 38 and extremely healthy except for occasional headaches, but I am depressed daily about these extra pounds I just can't lose.  I love my Dr. and trust her completely, but would love to hear your comments.  I have taken most all prescription wieght lose drugs with little or no real results, and am considering her suggestion to use Topamax.  Please send any comments to aid me in my decision.

[MiddleAgeGradStudent]

Greetings all!
I had headaches for over a year, went through sinus surgery, Imitrex, Relapax, and every acendingly agressive treatment my super primary care doc and I negotiated.  Finally, I gave in to him, and tried Topomax (topamax).  I started with 5omg a day (and at a weight of 198 pound).  I was already on Wellbutrin 150 mg twice a day and a diet, by the way,and struggling with depression over my weight.  

Two years later, I am at 200 mg per day of Topomax (topamax), headache free with no change in the flavor that I can apprciate.  I am also wearing a size 6 working to a size 4.  

One caution.  If you have anorexic tendencies, as I do, be very careful.  I forget to eat, don't want to eat, strive for that smaller size, although everyone tells me that that is enough weight loss.  I will be 50 years old next year, and look all of .... well, lets say no one guesses I am 50.  I did an extremem makeover on myself without surgery, I tell everyone (hair, makeup, body and attitude...)

Topomax (topamax) works for many things.  Just be careful.  I am dropping the WElbutrin to see if that picks my appetite back up a little so I can maintain a size 4.  Size 22 to size 4 in 3 years...  Ya gotta love it...

Oh, even my EX-husband doesn't recognize me... :-)

Live well, all....

[MiddleAgeGradStudent]

Somehow I managed to booger up some of my sentences there.  There is no change in the flavor of my beloved DIET COKE!

[standingstone]

I have DDS and Fybromyalgia and have been chronically depressed and in pain for many years. 3 months ago I was diagnosed with bipolar which now makes complete sense to me although I am quite angry as enough is enough already. well the mood stabilizer put 12 lbs on in 3 months partly beause I spent most of the time in bed not wanting to move because i couldn't believe the confirmed diagnosis. I am relieved and angry . My neurologist has me on neurontin for pain and it works like magic. I begged her for topamax after researching it for 2 minutes lol. at this pont in time I am not afraid of anything. Possible side effects don't scare me any more. weight gain does lol slight BDD going on also along with OCD and all the other initials out there. Talk to your Dr. but try anything once If it doesn't help you you can stop!

[Keba5]

HI,

I am wondering if someone could answer a question for me. I am about 200 pounds....50 years old...5 foot 7. I have struggled with weight for the past 10 years. My doctor suggested that I take a low dose of Topamax. I resisted as i was concerned about the side effects. However, I started taking 25 milligrams and was thrilled by my immediate lack of interest in food. It was miraculous...as though an addiction was suddenly broken. However, after 2 months---it suddenly stopped working! So..my question...does one build up a tolerance or do I need to increase the dosage? Can anyone tell me what dosages they are on when the Topamax is sole for weight loss in conjunction with depression? (I also take Wellbutrin). Thankyou for any information you might give me.

Keba

[Chantelle127]

Hi again!
Well its been 2 weeks and I dont think I've lost any weight yet but I kinda feel thinner so it might be all in my head which is fine! Tonight I up my dosage again to 50mg at bedtime so i'll be 25 in the morning and 50 at night this week and then 50 and 50 and so on so we will see how it goes!  So far I noticed that I do seem to be having less seizures so I guess thats the part that really matters but I am also very queasy, I lose my train of thought (i did that a lot before thought too), and slightly at a loss for words a lot of the time.  For example the other day I was trying to tell my friend something about six flags but all I could get out was "you know...that fun place..." luckily he knew what I meant or I'd go mental!  and I was with my boyfriend a week or so ago and we had been hangin out for about an hour and I said "you haven't even kissed me yet tonight" and he was like...."uhhh yeah I did" I was like oops! so my memory is going but I have read that once your dosage stabalizes that goes away so I'm gonna push through it.  So other than mild nausea and memory issues it seems to be going alright! I can't even imagine what my memory is going to be like when I get up to 200mg a day! I think the fact that we are moving up slowly is agood though because it gives u a whole week to settle into the dose.  We'll see what happens!

[standingstone]

Hi I was told by the neurologist to take 50 mg. at night and it has only been 3 weeks. I haven't noticed any appetite suppression and thank god my hair is falling out so I can get off the depakote. Maybe the appetite will go away too. wow I didn't feel like doing anything except eating. it's no wonder 10 lbs. flew onto me out of nowhere. I'm hoping for Trileptal in place of the depakote. I have a hat on and I will be wearing it until spring lol p.s. my hair was thin to begin with and losing 10 hairs would have been too many and I probably lost 10 a day for 3 months shoot! Good luck :-)

[gagirl02]

I just started taking Topamax 4 days ago for migraines, 25 mg once a day, then I'll start another 25 mg in 3 days,  I read alot about it being used for weight loss but I'm starving.  I laid in bed all night last night with a burning hunger.  About an hour after I eat I want to eat again.  Has anyone else experienced this?  I don't want to gain weight but at this rate I will.  It also says it caused drowsiness - I couldn't sleep at all.  I don't take anything for depression or anything like that - I just have migraines.

[SewCreative]

Hi I have Lupus, Fibromyalgia, Sjogren's, Hypothyroid, Raynaud's, Migrains, all of which have caused me to gain extreme amounts of weight from being confined to a bed for several years and being put on medications such as steroids and Paxil to treat the pain.  I am a 35 year old woman who is 5' 8" who was always very thin until I got sick and then went from 145 lbs to 313 lbs in one year!  I lost 50 pounds on my own when I got better and was no longer confined to bed and a wheelchair but since my metabolism has turned off I am now seeing a Dr. who speacializes in treating patients with Topamax for weight loss.  He started me at 25mg for the first week then 50mg the second week and now I am on 100 mg.  I have been doing this for 10 weeks and have lost 36 pounds.  The first week I started the Topamax my brain was really foggy but my body adjusted.  I have the dry mouth and the occasional tingling in the hands but if you drink water the tingling goes away.  Some of my hair is getting thinner but that is also a symptom of the Lupus and the thyroid.  All in all dry mouth, tingling once in a while and a little thinner hair so far is worth it and absolutely no more migraines not even so much as a hint of a headache.

[Pea.]

Hi,I have found the Topamax works very well for me.I have suffered with migrains for 35 yrs,I have just turned 50 . I take 50 mg.2 x a day @ 100mg .This is the second time I am trying the med. I have lost 20 pounds in two months ,but my activity has increased . I work with special needs kid's, Don't give up ,side effects will go away energy will increase. Good Luck To All.  Diane.

[horsewoman]

I am very new to this forum. Today is the first I have been on it. I have been reading the comments regarding Topamax for weight loss. I am a 66 year old, very active horsewoman. Who, after quitting the disgusting habit of smoking for the past 45 years, quit 10 years ago and I continue to eat,eat,eat and gain weight. I have thought about starting the bad habit of smoking again, but am now reading a lot about Topamax for weight loss.
My husband developed migraine headaches after a sever stroke about 5 years ago. He went thru all the depakote, etc. for depression, and then in early 2005 had another stroke. He was then started on Topamax. He has lost 40 lbs, and he cannot afford to lose any more.
But, I am seriously contemplating asking my MD to prescribe Topamax for me for weight loss. I think maybe my blood pressure will also decrease, and I am sure my feet and joints won't hurt anymore if I can get this extra 60 lbs off me. As I said, I am 66 years young, and am interested if any other young seniors are in my shoes. Any comments for the older group will be greatly appreciated.

[Rowergirl]

I was diagnosised with sever migranes several years ago. They wer so bad, that I was in the hospital quite a bit. I am a competitive Master Rower, so my weight, muscule, and cardio are extremely important to me. When I started on the Topamax, I did get immediate relief of the migrane pain. However, I was not told of all the side effects that I would deal with. The tingling in fingers, the mood swings, the stomach issues, and yes the weight loss and FATIGUE.

I am only on 50 mg, and will not take more. I am surprised that so many people want to use this drug as a weight loss product. This is not a weight loss product, it is a serious drug, with serious side effects that you have to live with for the rest of your life. If I did not have to take it, I would not.

Furthermore, the weight loss is temporary, you will put the weight back on unless you chnage your habits. I put the fifteen pounds back on that I lost, Thank God.

Please lose weight another way. You can do it. I did. I lost Forty Pounds and went from 33% body fat to 21% body fat without Topamax.

[MoodStruck]

I am bipolar II and just started Topomax (topamax) 25 mg. for mood stability.  Taking this along with Lithium 600 mg.  I will get dose up to 100 mg. but am concerned about side effects.  Those using Topomax (topamax) need to be especially mindful about drinking plenty of fluids due to increased chances of kidney stones.  Stoney will likely develop if fluid intake is not maintained.   Looking forward to weight loss benefit as I gained 30# over the past 4 years on anti-depressents.  Has anyone used this for bipolar?

[brie1]

I've been on topomax (topamax) for about a week and a half, up to .50 and no real unbearable side affects.  Kind of cranky, and a little tingle, but never really a soda drinker so no biggy there.  BUT, I am concerned with the weight loss.  I gained 30 pounds a month ago from my last trip with prozac and I feel like a cow.  Any comments on how long it takes before everything may kick in?  I think I've lost like 2 pounds, but stress has been through the roof for holiday.  I know it should'nt be my biggest concern, but it somewhat is.

[missyr]

Has any one has the side effects of foot or other excessive body odors? I have experience this in addition to dry mouth, finger and feet tingling, and confusion. The weight loss is great but... Both husband and self are on 100 mg per evening. He has lost 10 pounds in a month and I am down 18 in 2 months.

[ThroughWithSuffering]

I am new to this site and new to Topamax.  I have suffered from migraines all my life, but in the last year, the severity has become unbearable. I would find myself literally in "hell" for days with a migraine that would not quit. God forgive me, but in the last few months the pain was so severe that I wished that I would die just to relive it.  It was that bad.  Yes, I did seek help.  I went to the best Doctors.  I saw specialists.  I had MRI's and CAT scans and even a test that measurs the pressure in the brain.  I have more exray film in my closet then you could believe.  I was prescribed Imetrix, but I was the rare bird that was allergic to it.  It wasn't till I went back to my primary that she mentioned Topamx. I never heard of it before.  Well within a week I couldn't believe the change.  I was waking in the night with migraines and now it's been three weeks with not a hint of one.  I have read and understand all the side effects.  The hair loss, the confussion, the tingling, the weight loss (for me this is not a good thing, I am thin to begin with) But I would rather deal with any of these side effects then deal with a minute of what of was prescribed Topamax for....MIGRAINES!!!!  Horrible, Painful, Migraines, a pain so bad that it makes one want to curl up and die.

[brie1]

Anyone out there know about how long it takes for weight loss?

[kaseykahnesredneckgrl]

Hi I just started taking Topamax and I am 16 years old and i know it says you have to be 18 to use this board but i really wanted to talk with you all.  I was just wondering if you all think with me being younger the weight will come off quicker?

Thanks
Ashley

[Dizzynomore]

Hello everyone,

Day 7 for me on Topomax (topamax) 100mgs twice daily. Feeling exhausted. After years of being miss diaganosed. I finally have a dr who thinks I've been having seisures. My sister has Epilepsy. I am 39 years old and have had dizziness so bad I have not been able to function. my dizziness is gone. I feel a little stupid from the meds. The dr assures me that will go away. I've lost 7 pounds which is okay since I packed on weight while the other doctors treated me as crazy. My last diagnosis was MS and I was so relieved not to have MS. I live in a small town and I went from each doctor for 19 years till I began to feel like I was just a hypochondriac... sorry my spelling is bad... medication is affecting me more today than I can manage and I'm crying...We have one hospital and they never did an EEG on me in all the times I went in through the ER. I would know when it was going to happen. A smell, tingling in my face twitching in my eye sometimes I thought I was having a stroke. I was told panic attacks... I once heard a doctor in the ER say she just wants drugs! God I just wanted to be home with my kids playing with them. Lights and ceiling fans trigger me. With the Topomax (topamax) I can actually stand to have the ceiling fan going. Which will be nice since we live in Arizona. I am sorry to just vent. I don't really feel like there is anyone who I can do this with. They've been listening to me for so many years. No one complains but they are bound to be tired of me! Good luck to you all and God bless!

[Dizzynomore]

I have tingling in my heels when I lay down which is differnt than my old tingling. I am also confusing reality and dreams! Only upon awakening. Bummer woke up looking for a new room with new furniture in it! LOL! Good luck!

[SRBCT]

I am in tritation period with topamax for migraines. Just started 100mg.per day.-  tingling in hands- some in feet. I do get confused and very frustrated at times with my kids. I also am having the usual word finding difficulty.  I am hoping this will all subside when my body gets used to this medicine.  It all gets very annoying at tines, and I feel very stupid.  I was looking forward to the weight loss, I have lost maybe a few- very few 3-5 pounds.  -  Does anyone know- Do you need to be on this longer to shed the pounds??     I really  want this to work, I was in the hospital with migraines and sick as a dog.-  Tired of all of it.-  I have had them since I was 9.
Thanks for your input.

[Shelbee]

I have Topomax (topamax)...and everyone seems to be getting great results with it - but I'm not getting the kind of guidance from my doctor regarding dosage increases to see any result.

My 20lb weight issue has turned into an out of control eating compulsion - compounded the recent addition of waking up every two or three hours and feeling compelled to sedate myself with raisin bread and cream cheese sandwiches. It was insane!

I had already gone from 145 to 190 before my nocturnal binging kicked in - and was beyond depressed and could not focus on work. Procrastination has always been a problem, and antideprecents only made me crazier. Adderall (adderrall) seems to at least let me get my work done, but while my appetite was under control during the day - the nights were uncontrolable.

My doctor perscibed Topomax (topamax), mentioned that it weight loss was a side effect. I took one a day for a few days, it didn't work -so I stopped. A few month's later I wa amazed to find  info online saying it was effective for exactly what I was experience - nite eating. While it has improves somewhat,I've been taking 50 mg of Topomax (topamax) forever, which is probably why I haven't had any real success.

It seems 200mg is the magic number. CAN SOME ONE TELL ME HOW WHAT DOSAGE THEY WENT TO FROM 50MG? DID THEY ADD 50MG  EACH WEEK...OR GO SLOWER? ALSO, I'VE READ THAT THE TOPOMAX (topamax) CAN MAKE YOU TIRED.
DO YOU TAKE IT TOWARDS EVENING? BREAK UP THE DOSAGE DURING THE DAY?

My doctor us no Huff- A few questions, asks for his co-pay and leads me to the door.

I'd appreciate any info you can share.

Thanks,
Shelbee

[maceeman]

This is my 2nd time on topamax, and I found (after trail and error with many other bipolar meds)this works the best. Side efects...I SMELL-FEET TINGLE-SLOWER WEIGHT LOSS-  but the good outweighs the bad. My mood is great at 200 ml, and I am feeling great!

[maceeman]

Topamax is still a medication.If you do want to increase your dose and if you feel like you want to give it another try YOU NEED TO TALK TO A MEDICAL PROFESSIONAL. I can answer all those questions for you, but that would be irresposible to your mental health. Read the earlier posts, some paitents have had severe mood changes on this drug, no matter how thin you may get, your mind is more important. Call your doctor and please be careful.

[Robert353]

Hello everyone, just a warning about the use of this drug. I am sure that it has its uses but weight loss in my opinion is not one of them. In Febraury of 2005 I went to the doctor comlaining that I was eating to much and my memory was poor. With no hesitation or questioning he mentioned that I should try topamax. I took the pescription but did not get it filled. About two weeks later I went to see him about something else and he asked me how the topamax was going. I told him that I really did not want to take a drug for the problem. He told me again of how good he thought the drug was and how well anouther patient of his was doing so I agreed to try it. I really trusted him.

So I started to take it (three 25mg tabs three times a day for ten days and then two 25mg tabs three times a day for ten days. Please do not use this information for your own use it is only mentioned for acuracy. Consult your own doctor if you want to take this drug). In the first week I noticed that I was feeling really quite good. By day ten the first unusual symptom happened to me. While I was reading my bible I started to cry. Now I must mention here that that has never happened to me before. It was just that everything I was reading seemed to have so much more meaning than before. The same thing happened on day 16 and 20. For some reason I thought that I was being touched by God and it did not dawn on me that it was the medication. I felt blessed to understand the bible so well. My doctor never mentioned anywhere close to what was happening to me to be a side effect. He also did not mention that my brain chemistry was going to be played with.

Just over five weeks after taking the medication I found myself in a mental institute certified mentally ill (I like to say insane). My whole family tried to tell the psychiatrists there that up to then I was perfectly sane up until I had started to take Topamax. They did not believe my family even though their own journals say that drugs must be ruled out before they can diagnose someone with the condition they believed me to have. Their reasoning was that they use Topamax themselves without this type of reaction and that i was not just a little crazy but RIGHT OFF MY ROCKER CRAZY. They simply would not listen to me or my family it was hell.

When my symptoms lessened and all I was was clinically depressed they let me out (no danger to myself or others just feeling like I would rather be dead). I spent six months in a  depression so bad I could hardly move all while being under a psychiatrists care. She just could not figure out what was wrong with me or should I say that she already knew what was wrong, her colueges had already diagnosed me. It got so bad that I had to do something. So I went to google and typed in the key words of how I was feeling. The funny thing is is that most of my syptoms (symptoms) resembled what I felt like ten months ago and went to my original doctor. A miricle happened for me!!!!! In the ten months that I had been sitting in hell at least seven doctors had either talked to me or been responsible for my care. Not one of them could figure it out. But God did send me my own answer. I was Hypoglycemic and always have been.

Right away I started to eat properly. That means fruit, vegetables, meat, and limited dairy and complex carbohydrates. I said limited not excluded they are also very important for brain health. The first five days I lost seven pounds. I had blimped up thirty pounds while I was sick. I now feel great. I am even contemplating going to the gym before the next week is up (something that just two weeks ago seemed like a nightmare)

I should also mention that while sick I lost my house because I could not afford the mortgage payments (of course I was not working). I also had to give up other possessions some of which I loved very much (a horse). But now that I have my brain health back it resonates in my head that your health is everything.

I only post this as a warning, if I can help one person not to have to go threw what I did that would be great. So take your topamax if you must but I will not look for the easy way or quik fix ever again. I also have lost my trust in doctors, I am not saying to never use them just use a little common sense to.

If anyone has experienced the same sort of reaction to this drug I would love to hear from you. You can email me at
***@**** post your message urgent topamax. Thank you everyone I am sorry this message was so long it was as short as I could make it. God bless everyone of you especially those of you who so desperatly want to loose weight, I hope I helped.

[Barneys Mom]

My doctor started me on one a day for a week.  I'm on week two taking two a day, 50mg.  Next week I go up to three a day, 75mg  then the 4th week I go up to 100mg and stay at that.  So far I feel great.  No big side effects.  Some fatique.  Diet soda tastes weird, but my appetite seems to decrease at the onset of the upped dosage then it levels off.  Has anyone had that affect?  I need to lose weight.  Didn't know Topomax (topamax) was a side effect until I found this message board.  Any comments would be helpful.

[meli*]

I'm a migraine suffer, my fourth week tonight I up to the full 100 mg. I still feel alittle tingling sensation but its not as bad as the beginning its hardly there. my appeitte has decrease...which is good because I do want to lose the extra weight....the third week of topamax was really bad for me I was so naseaous I thought I was pregnant for a minute....but it went away. I sometimes do feel like food is the most disgusting thing in the world...I think Ive lost about 6 pounds not much but theres a difference in the the pants....haha! i HAVEN'T HAD ONE MIGRAINE YET! thank god...

[imprsvdsgn]

I started taking Topamax 8 months ago. I weighed 122 at the time. The first week I took it I had my normal Migraine for two days. I remember feeling really sick over the weekend as well. By the next week I had lost 10 pounds. I had been eating normally (we were in the process of moving and having to stop at fast food places for every meal). Within the first two weeks of starting Topamax I had lost a total of 14 pounds, I was down to 108. I didn't really notice the 10 pounds the first week until I went to put on my regular work clothes the next week and they didn't fit anymore! I had stepped on the scale, but thought it was broken! By the second week, nothing fit. I would walk by the mirror and not recognize myself. My face was really withdrawn looking. I did have a lot more energy, getting up at 4:00 or 4:30am every morning. The tingling in my hands and feet went away after the first month, eating a banana every morning helped with that. My hair thinned out quite a bit. I couldn't really afford for that to happen, I'm only 42. But the worst was the 'fog' I felt like I was in when it came to remembering anything. I used to give speeches in front of 80+ people every week. Now I had to bring up my 'speech' and read it word for word just to get through it. I couldn't remember any part of it.

It took my Migraines away completely, which was a relief.

After the first few months I noticed weight started to creep back on, which was okay by me. I didn't like my bones sticking out. I finally decided to go off of Topamax, and noticed that I have regained about 10 pounds altogether. I have heard about the weight being put back on once you stop the medication.

I guess you have to ask yourself if you're taking Topamax mainly for weight loss, do you plan on taking it forever, because most likely, the weight may come back. I'm pretty 'active' and try and eat right, and it still didn't help the weight from slowly coming back on. It defintely feels like something you can't control, just like the weight 'loss'. Also, is it worth it to have your hair start to fall out, and the constant confusion, loss of words, generally feeling, and sounding 'stupid'? For me, it wasn't. Even though I lost the weight, I felt drained and weak when I tried to ride a bike, or go up stairs. I had 'energy' meaning I didn't have to sleep as much and was up bright and early ready to go, but when it came to using that 'energy' to do something 'athletic', energy certainly didn't mean 'strength'. I felt like an old lady.

If you're taking it, I hope you have somebody looking after you in case you don't notice yourself 'going downhill'. When I first dropped the 14 pounds, I was excited at how easy it was, but my family, friends and coworkers were almost horrified. Skinny doesn't necessarily mean 'healthy'. You still have to work extra hard to build back up the 'strength' and muscle, and take lots of extra vitamin supplements as well. By the way, I was only up to 100mg per day.

[migrianes nomore]

Well I  guess my story will shock you all I am currently taking 800mg a day of Topamax. 400mg in the am and 400mg in the pm. My migrianes were so life stopping that I could not get through the week without one. I would usally land myself in the hospital on the verge of a stroke on time it had gotten so bad that they admitted me for a swollen brain. Topamax has saved my life!!!

At first though I did feel as if I was going insane they side effects were dreadful. food didnot taste right, depression, waking all hours of the night, weight loss, the list goes on and on. The weight loss had to be the a blessing and a cruse I went from 168 on a womens 5' 7 frame to 136 and still loosing about 2 to 3 pounds a week. I did enjoy it the first 15lbs but now I am too thin and want to stop. However it does not matter what I eat or how much I cannot gain. Ohh well it is the price I am willing to pay to be migriane free, and live again!!!

The best thing to do with Topamax is fight through the first 5 to 6 weeks of side effects your body will leval and you will be pleased with the end results. I almost gave up on Topamax and I am so glad that I did not!

[MIGRAINES2LONG]

I am taking Toprimate for migraines.  I am currently on my third week, 75 mgs.  So, far so good no migraines yet.  Normally, I have about three very bad migraines a month.  And on a good month two.  I have been suffering with these headaches for the past five years.  I decided to talk with my doctor regarding a preventive drug in which she suggested Toprimate.  I will still be taking Imtrex injection if I experience a migraine episode.  I will be increasing my dosage of topamax to 100 mg next week.  I feel ok using topamax.  I am not sure if I have lost any weight, but I know I eat a little less.  Therefore, I may have lost a pound or two.  Which is okay for me.   Should I expect for  my appettite to decrease using a higher dose of topamax/toprimate?  Anyone response required!

[cohalu]

I just started taking Topamax last week for epilepsy.  I was taking keppra but my seizures were uncontrolled.  I am up to 100 mg of Topamax a day.  So far I have the foggy head and pins and needles in my hands and feet.  So far no weight loss.  I am hoping that will be one of my side effects, I could stand to lose a few pounds.

[grannydeb]

I am an epileptic and have been since early 1990's. I am 49 and have been on several medications for my seizures. It seemed that Depakote worked great for me. I was in the medical field for 20 years until my seizures caused me to become disabled in 2001 and therefore, I had to go on Medicare and due to my pre-exsisting condition, I could not get no secondary insurance and did not qualify for part D Medicare (prescription coverage) so I had to go on the Patient Prescription Assistance Program in order to get my Depakote medication. During this time, the Depakote did make me gain weight and I had other stress come up on me starting in the year 2000 such as: 2000 - husband had cancer of kidney but survived, 2001- husband's dad died and I had to go on disability due to my seizures, 2003 - my mother at a young age of 66 suddenly died of a massive heart attack and and  husband had his bad semi-truck wreck where another semi-truck ran upon top of his semi-truck and did not get his disability going until 2005. Anyway, the government stopped paying for my medicine due to both of us drawing too much and I could not afford the Depakote ($400.00 a month)  so my neurologist got me on Topamax through the government. In the last 3 months, I have been taking it but again have been under alot of stress as in April, I lost my beloved dad to a massive heart attack and he was 70 so again I got stressed out and what weight I lost, (40 lbs.), i gained 20 back from stress and I was taking 200 mg Topamax a day so my neurologist due to my seizures and weight gain doubled my dosage to 400 mg a day this week and I already can tell a difference in my appetite so I hope it don't make me lose too much weight plus I found out Saturday from my medical doctor that I have a heart problem myself and he put me on nitros, oh me, what a world!

[armywife4ever]

I am a 33 yr old female. I was put on topamax for migraines. It has helped considerably for my migraines. Thank God!! As for weight loss, yes I have have lost weight also. I lost 6 pounds just in the first month. I take 75mg a day. I don't have any of side effects either. If you're nervous about taking Topamax start out on a low doseage like 25 mg a day. I started out 25mg one in the morning and one at night. Now I take one in the morning and 2 at night. Good luck!!

[xxtami]

I have been on Topamax now for about 6 months I started out at 50 mg and am now up to 100 mg 3 times a day I no longer have migranes thank God!! But my head does get fuzzy at times and I have memory blocks at times I have lost about 47 pounds I havent changed the way I eat I just eat alot less because Im just not hungry anymore.I do worry about the side affects I read about but I havent had anything that would make me quit taking it...

[kayru11]

this information has been really helpful, i just started topamax today and couldn't understand why certain things taste so awful. does the side effect of nt feeling hungry and the way things taste get any better over time?

kayru11

[mickeymouse42]

I started Topamax last week for migrains and cronic back pain. I think that I may be eating more than I was before, has anyone had this happen?  I just started on 50 mg one in the morning and one at night. Yesterday my head hurt from the time I got out of bed untill the time I fell asleep at 1 am. I don't have a migraine this morning thank God!! Oh, I should probably mention that the first week I started on 25 mg at night.  One other thing I do notice that I feel really full alot faster and with less food at a sitting, it just seems that I'm sitting more.

[grannydeb]

just to let u know, i had a stress test yesterday and found out i have no heart problem, have a healthy heart, thank god, don't need the nitros. Also since my neurologist increased my topamax from 200 mg a day to 400 mg a day, my daily meals have went down to a sandwich in the morning to a salad at supper and thats if i can eat it all, my weight is falling off of me. I guess i will have to buy me a new wardrobe for the fall and winter but at least i will look and feel better.

[Nanajane]

I just started on Topamax last week. I only take 25mg at bedtime.  My head feels foggy at times and I am more sleepy during the day but my appetite has deminished.  I need to lose 30 lbs. before I can have ByPass surgery so Topamax will definately help. I have had no appetite today and have to force myself to eat something - protein is my first choice with veggies and/or salad.  I have had no headaches just the foggginess which I hope will subside as time goes on.

[grannydeb]

let me know if anyone  taking topamax if they are going to the bathroom alot while on topamax. i drink alot of water as it says on the prescription to do but i should do have to go to the bathroom alot since the doctor upped my dosage from 200 mg a day to 400 mg.

[kayru11]

ok, guess i need to read all the rules,
can you not put you email in here?
kathy

[kayru11]

hi,

i have struggled with horrific head and neck pain for a long time, i have had migraines on and off, i was bitten by a tick in 1989 and unfortunatley i went 5 years without a diagnosis. i tried, but the rash was gone, i did not know to keep the tick, and was just told i couldn't get lyme in Kentucky. well i am living to tell everyone you can get lyme disease anywhere,
i had several neck operations because it got in my bone marrow and weakened it. 2 of my discs crumbled, we tried exercises and therapy on the first, but the second went fast, anyway, i have a lot of chronic pain and head aches that are not necessariely migraines but i am with a new pain clinic and he wants to try because i have horrible head and neck pain 4-5 days a week.

i am on my 2nd week, we took 25mg the first week, i now take 50 and will work up to 75 by the tim i see him next and we can see where we are. her is a wonderful foctor and without over medicating he makes sure you are comforatable. i am nervous...i am doing a lidocaine drip august 9. it could change my life!!!! that woudl be awesome, i happen to suffer from bad pain all over and at different times, hopefully the lidocane will deaden the nerves so they won't hurt. i really don't underwstand it yet, but i trust my doctor and if i can get a month or so pain free,,,it is worth it, he said some goe a month some 2 and some it actually lingers si months, everyone is different, i will try and remember to come back here and let you know how it goes and how the topamax is doing.
if i forget
please, anyone feel free to email me at ***@****
it is our busiest time of the year for showing our horses and if i am free of pain or anywhere close i will be going!!!!! i love my new doc, he wants people to be well enough to enjoy life, but not do drugged they can't and he seems to care....we will see......as i am sure most of you have,,,i have had some real bad experiences.

peace out
kathy

[kayru11]

man i had some bad typos

my email is ***@****

i think the rest you could figure out. i better get to bed!!

kathy

[AmyV]

My experience with Topamax:  I suffer chronic migraines.  For the first 3 months topamax seemed to be working great, I still got an occasional migraine but it was treatable with tylenol or advil.  I did lose about 7 solid pounds - although I would say not pounds of FAT, just pounds overall, including muscle mass, so although I felt skinnier, I also felt sort of weak and flabby!
After a few months my migraines started to come back with FULL FORCE.  So I looked for an alternative treatment and started taking 100 mg of progesterone per day, on days 15 - 28 of my cycle... a miracle is happening and I think that my hormones were the cause of my migraines.  I still take the topamax, just 25 mg a day to wean myself off of it.  I used to get ovarian cysts but since I started to progesterone regimen I don't anymore.  Think about it ladies, pharma companies can't get rich off of selling natural progesterone - there's nothing to patent - so of course they are going to promote these outlandishly expensive drugs instead of looking at the ROOT of our migraine problem.

Other side effects:  Seltzer water tasted horrible and sort of sweet.  And carbonated drinks in general taste flatter.  Also my taste is changed, I don't like certain flavors anymore, like lime and chocolate.  And I do feel once in a while like I am leaving my body (!!!) kind of floating over my own head.  Its a very real feeling that lasts for a few minutes, usually when I am driving.  I don't suffer from depression and am not on any other meds, so for those of y ou who are trying to pinpoint which side effects came with which drugs, there you go!  Also you can go to the Topamax website, although I know there is so much research they still need to do on this drug.

[AmyV]

GrannyDeb, I am noit a Dr. but I have read on the topamax website and on the drug info that Topamax does have some sort of effects on the bladder, possibly negative ones.  Also there was just an article in Men's Health that topamax can lead to kidney stones in people taking high doses for a year or more... so definitely go talk to your Dr. and make sure he she knows what he/she is doing... I know my doc, god bless her soul, doesn't know much about topamax, she just put me on it aftert I asked for it... I had to find out months later from my pharmacist that topamax was causing my birth control to be ineffective!!

[Libbylu743]

Hi !! I am Libby and I am taking my first dose of Topamax tonight. I would love to find people to chat about side effects etc... I see Kathy was not able to post her e-mail address. Is this the way to have daily chats and lend each other support? I am feeling nervous about starting this tonight not knowing which side effects may come my way.

Thanks, Libby  

[grannydeb]

i am aware that this med can cause kidney stones if u don't drink alot of water but it just seems i spend more time going to the bathroom than i did before and i drink alot of water anyway cause i drink a lot of  soda also. i was in the medical field for 20 years. i have been going to the my neurologist since 1990 so i do trust in him. i was just wondering if anyone else was going to the bathroom alot also. as for my weight, it looks like i am going to have to go clothes shopping as my weight is falling off and this is the 3rd week today since my neurologist doubled my dosage of topamax

[momoftwogirlsandaheadache]

Hey my name is Tonia I am starting my first dose tonight and i to am so nervous i have a daily headache not migraines but a daily headache one time a day that last for hours so my doc wanted to try me on this and i to need to lose weight so....... anyones support i would love. i have to girls a two year old and 7 month old please feel free to email me at ***@****

[Linda_K]

I have been on topamax for chronic migraines for a month now where I am taking 75 mg twice a day.  No side effects EXCEPT EXTREME FATIGUE, TIREDNESS, and SLEEPINESS.  I have a hard time staying focused and awake at work.  I feel doped up.   When I come home from work, I have to sleep for at least 2-3 hours.  Is anyone experiencing these side effects?  The doc has told me my body might build a tolerance to it in 2 weeks to a month...

[Linda_K]

Libby,
I just registered tonight.  I am available if you would like to chat some time.  :)

Linda

[jillreneeprice]

Has any one ever had a migraine that caused them to look like they were having a stroke for about 3 hours or more??? I have had several episodes of these which symptoms looked like my head falling to the side as I would stare at something- usually a person I wished I could speak to, then I would finally speak like I had Down syndrome- if they would help me get up I would have to hold on to them and shake terribly- the crazziness goes on and on... I am also epileptic.  I thought these episodes were TIA's ("little strokes")  At the Comprehensive Epilepsy Center at UCSF I was diagnosed with having migraines.  This is so bizzarre to me! I am changing over to Topamax from Lamictal.  I just wonder if anyone has a story or has heard of one like mine?

Thing I'm most scared about with Topamax is that on its official website it stated it could cause glaucoma- (I am ashamed to say) I am most excited about...  in this "Every one has to be thin driven" culture- Weight loss!

[Libbyluu743]

Hi !! Today is my day #2 and all seems ok. I seem less nauseaus then yesterday. That is a good. thing. I seem to feel much better the first half of the day. I am thinking that as I increase my dose, it will help more at night. Does anyone know if there is an "average" dose?

I started an e-mail group though yahoo groups. I figured between this board and that we can find lots of support and information. The name of it is Topamaxfriends. I know we can't give contact info, but if anyone wants help finding it, I use Yahoo as my provider : )

Libby

[momoftwogirlsandaheadache]

i took my second pill tonight and i am so nervous taking this med ONE QUESTION  i have seemed to break out around my hair line did anyone do this it may not even be related to the med because i think i noticed it before i started the med. but to make sure????  i also worry about doing permant damage to my body or my brain can anything be permant?

[Linda_K]

Hi there
Didn't have any breakouts and don't remember reading anything about it; no permanent damage to the brain, one side affect is short term memory lost.
Linda

[Linda_K]

Hi Amy!  I am very interested in hearing about your hormone therapy because I think I am in the same boat. Without going into too much detail here is a little background on my headaches.  I'm 33; I have had migraines all my life.  In June, I had headaches if not everyday 2-3 times a day.  At the time, I was taking maxalt.  I finally, saw a neurologist and he said I was taking so much maxalt I was developing rebound headaches.  He started me on the topamax.  June was not a typical month for me, on top of the rebound headaches, we had so much rain that the barometric pressure was also causing excessive amounts of headaches.  In a typical month, I get stress related headaches and then I develop menstrual headaches a week prior and the week of my menstrual cycle.  Well, since I have been on topamax which has been a month, it has not helped my headaches during my menstrual cycle.  My doctor said that it would not help.  He has prescribed another preventative medication named frova to take a few days before and into the cycle (A preventative on top of a preventative!!!).  He is also recommending I see a OB GYN that specializes in hormone therapy.  I can deal with my stress induced headaches with over the counter or with accute medication, but my main problem is the menstrual headaches, so I don't think it's worth taking the topamax if it's not fixing the root problem .  I would love to hear about your experience with the hormone therapy.  Sorry I wrote so long :(  Thanks, Linda  

[momoftwogirlsandaheadache]

well i found out i had poison oak not a reaction i have took 4 pills and i am doin good so far i went back to me neurologist today i told him i was very nervous taking this med. he encouraged me to try it and said at any point that i felt uncomfortable on it we would ween me off so.......... the only symptom i have had is soda does taste different i usually have one soda a day with lunch and they do have a flat taste so no more soda for me!

[grannydeb]

i am happy that the duramine is helping u with ur weight but the topamax is helping me keep my seizures under control and helping me with my weight also tremendously. i am very well satisifield with it 100% with it and i am taking 400 mg a day, i am losing weight fast and am going on my 4th week.

[cindylynnsmith]

been on topamax now about almost 3 weeks for migraines.  Had one migraine about a weeks ago but it wasn't too bad.  I felt REALLY crazy for about a week.  My husband thought I was going to kill him and end up on the front page of the LA times! But I'm feeling much more normal now.  I'm TOTALLY not interested in food.  In fact dinner time comes and goes and then about 8pm I finally eat something just because I'm supposed to.  I had to switch to diet tea because all sodas both diet and regular taste flat and not matter how cold they ard they tast hot.  Its the wierdest thing!  I read all this stuff about the sodas and thought it was weird but its true.  I'm happy its true because soda''s, especially regular soda's were my downfall!  I've lost about 10 lbs in 3 weeks and at least 3 people have mentioned to me at work today how great I look.  Its crazy because the appetite suppressed feeling is so much differenent than a diet pill.  I've taken them all. Adipex and similar.  Its not the same type of nervous-not-hungry-feeling....its just a not-interested-in-food-not-hungry-feeling.....completely different.  I'm really happy with Topamax and plan and sticking with it.  I don't care about the tingling in the feet or the tired feeling that will hopefully go away.  My doctor put me staight on the 50mg twice a day because my headaches were getting worse.

[grannydeb]

everyone talks about the sodas taste being bad but i have been drinking diet coke for almost 30 years so i still drink my diet coke and have gotten use to the taste but not drinking them as much so i have taken up drinking tea with my meals and drinking coffee in the morning, i am still still doing great with my weight, just dont have no summer clothes to wear having to wear my old clothes even though they are big on me waiting to buy new clothes for fall and winter but topamax is helping me with my seizures, have had no grandmal seizures sinse being on the topamax

[mchipalla]

Hi everyone.  I am on my second day of Topamax.  I have to get up to 100 mg and then decrease my tegratol until I am down to 0mg.  I was dx'd on June 10 with epilepsy.  I have partial simple seizures in the Left Temperal Lobe.  I have read and re-read all of your posts and am very excited to have some support here.  I gained 10 pounds and my hair began falling out from the Tegratol.  I see that Topamax also has the side effect of hair loss.  Has anyone had that?  I have had some indigestion and some burping.  I am a self proclaimed beer expert and that does not sit very well.  I am not sure if that is the medication, but if the carbonation is a thing, that could be it.  Does anyone have any suggestions for birth control since topamax reduces the effectiveness?  Any recommendations and information is much appreciated!

[EileenR]

Is this Topamax available in Canada?  Are Canadian Dr.s prescribing this for weight loss?  I beleive I am addicted to food/eating and really need something that will help psychologically with my weight.  I find that I eat all the time or think mostly about eating, am I fighting a losing battle or can this drug help me?

thanks

[mchipalla]

Do you have Epilepsy, Eileen?  This is not a medicaiton to be taken lightly.  There are some crazy side effects and for the most part it is not prescribed just so you don't eat.  I do think some drs rx it in conjunction with other seizure medications b/c of the propensity to gain weight with them, but that is just from what I can gather.  I have not lost any weight so I don't think this is a side effect that happens to everyone.  Good luck!

[grannydeb]

i can not believe the people who wants to take this med for just losing weight. i was in the medical field for 20 years and developed epilepsy and had to go on  disablity, was on several medications before being put on topamax. i gained alot of weight when i was put on depakote and it caused me to have some liver problems and my hair was thinning out. yes the topamax is making me lose weight like crazy and i have been on it for 6 weeks. but there is other side effects such as u can have kidney stones with this med also so i have to make sure i drink lots of water while on this medication and make myself eat even when i am not hungry so it is a serious medication and not to be taken lightly as mchipalla said. i take it because i am an epileptic. u may need to talk to your doctor about a better option if u have a eating disorder not a easy way out cause this is a very serious drug.

[mchipalla]

Are you having any memory problems as a side effect?  I called my friend this morning then called again this afternoon.  He told me that I already called him today and I was surprised b/c I barely even remembered the conversation.  More like it could have been a dream.  I am hoping that will level out after I have been on this for a few more weeks and after the tegratol is out of my system.  My hair is still falling out but again, I am only decreasing the tegretol right now...................

[Tules72]

Good Evening Everyone,

I have been on Topomax (topamax) for over 10 months for severe migranes.  My original dosage was 75mg/day  and was increased to 150mg/day.  I would like to warn everyone who is thinking about going on this medictaion or has already begun their "therapy".  This is an extremely potent drug that should NOT be taken lightly, especially for its "weight loss" side effect/benefit. I am a medical professional who has experience the powerful side effects of this medication and I feel compelled to warn others.  Please use caution and research other medications prior to consenting administration of Topomax (topamax).  Weight loss may be a rewarding side effect to some, but the effect eventualy tapers off and plateaus. Hair loss is another  tramautic side effect that is usually not "verbally" mentioned but experienced by the majority of users. One usually finds out once the hair starts coming out in "bagfuls".  Sometimes, not until after months of mediation usage. I read others accounts of the taste of soda and how unappealing it becomes upon beginning Topomax (topamax).  I can concur 100%. This one side effect, at least many can live with....However, memory can become "foggy" ,as some have previously described, and mood swings do occur at random times.   I am currently seeking an alternative substitute.  I am not suggesting you follow suit as you need to consult your own medical professional/physician/specialist.  Not everyone will  experience the same side effects as mentioned above, and Topomax (topamax) apparently works well for some.  I am not an expert on Topomax (topamax).  I am speaking purely from experience and wish to impart my knowledge of the side effects I've encountered on to others.  I am disappointed in my choice of Topomax (topamax) and in hindsight wish I had not taken so lightly the "side effects" warning.  I too was enchanted by the "weight loss" promise and elimination of migranes benefits.  However, the side effects have outnumbered the benefits and I am moving forward.  Hopefully, my words have offered some help to those seeking confirmation that "it's not just your imagination".  Take care.

[Migrainessuck]

Hello forum.  Today is my firsxt day on this forum.  I have been trying to do as much research as possible about Topamax.  I am 20 years old and I have been suffering from sever migraines since I was six years old.  I have tried Imatrex, Zomig, Midrin and now I am currently taking Relpax if I expeience a migraine.  My primary care physician just refered me to a neurologists who perscribed Topamax.  I got the perscription filled and have been debating on taking it for over a week now.  Thursday night I had another one of my terrible migrines that as always made me feel as if I was gonna die because the pain was so unbareable.  So last night I decided that I would start Topamax (25mg).  I am suppose to start with this low doseage and work my way up to 100mg over a 4 week period increasing 25mg each week.  I am worried about the side effects but the way these migraines feel it doesn't seem as though it will be that bad.  The thing that worries me the most is the possible memory problem.  I start my junior year in college on Tuesday and I can't really afford not to be able to recall things.  Then again not everyone experiences the same side effects.  I also remember myself saying everytime my migraines are so bad that I will try anything that works to get rid of the pain (migraine sufferes no what I mean).  So I am going to try it.  Last night (my first dosage of topamax) I couldn't sleep....but I don't think it was from the medicine I think it is because I am so nervous about taking it.  

[jennomomigraines]

I got moody and tingly feet.  Lost the weith, bt gained it all back. Migraines are back too.
Ugh!  What else will work?  I get hormonal migraines and the other day calculated (aftre 2 more lost days due to migraine headaches) that over my 37 year life I have lost about 3 solid years give or take a month to migraine headaches.  So, when Topamax was working and the headaches were gone, I loved it.  I also loved the 20 pounds of weight I had lost.  I got the tingly hands and feet and was afraid of permanent neuropathy.  Any documentauion on that?
I don't wan these headaches to steal any more days/weeks/months/years of my life and of my childrens' time with their mommy.
I also became very emotional on the drug.  I cried all of the time at the drop of the hat and even ruined my book club group because I was acting paranoid.  
I was seriously considering going back on Topamax, will the side effects be the same?  I don't want to feel so emotional again.

[grannydeb]

u ask me about memory loss, i had the memory loss before i started on the topamax. u see, in the early 1990s when i was working in the medical field, was involved with the wrong crowd, and got the hell beat out of me and due to that i have a soft spot on the top of my head which has caused an abnormality on the left side of my brain which is why i am an epileptic. i have lost my driver license and according to the government am considered imcompent in dealing with money matters so someone has to be over my disablity, which i think is unfair when i am pretty much intelligent in many things, i just have epilepsy but this is the law in kentucky. i do have memory lapses at times due to this at times but i don't think it has to do with the medicine but i feel the tingling and have the moods but i just lost my dad not too long ago and other things have happened so i think that may have something to do with some of my moods. i always try to look on the bright side and try to make the best of everything but no one needs to take lightly of this medication.

[grannydeb]

the side effects is going to be there, they may not be the same but they will be there, i do not know anyone who has not had no side effects from taking this med. i was 29 years old when i started having seizures and i have been going to the same neurologist for 20 years and i am 49 now and did not go on disability until i was 43 and i was forced to go on disability then on account i was having seizures at work. i loved my job working with people in various hospitals.

[mchipalla]

Another weekend discovery.  I play volleyball on the weekends and usually we enjoy a couple of beers after the game.  Much to my disappointment, beer had no flaver (exactly like pop).  Everyone thinks I'm kidding, but you would all pass out if you knew what a huge beer fan I am.  I join world beer tours just to try them all.  Not that it's a huge deal, but just a hobby that has been taken away.  Down to 300 mg of Tegratol now.  Anyone know what would happen if you just stop it instead of tapering it?  I won't do it regardless, but since I am up to 50mg of Topamax (Dopamax) two times a day, I can't imagine seizures would be an issue.

[grannydeb]

i take 400 mg of topamax a day and xanax .5 mg qid (4 times a day) so i do not drink alcohol so i don't know about the seizures but i would not mix alcohol with my seizure medication but thats me and i am probably older that you.

[grannydeb]

i forgot to tell u in case u have not read i am an epileptic and that is not why i do not drink alcohol with my seizure medication.

[mchipalla]

I am also an epileptic, but I have simple-partial seizures.  More likened to dropping down the rabbit hole.  When I first began having them, they were pretty compelling, almost enjoyable.  However, after the 40 second experience passed, I would feel very nausous.  The dr said they would begin to get worse and the type of seizure could worsen too.  Not worth the risk.  However the meds are not so great either!!  I am 37, single mother of two young children, school social worker, pretty active, blah, blah, blah, somewhat bitter and trying to sort out my "new" lifestyle.

[luckycat]

I start topamax last night had the best nights sleep I have had since i was in my 20's I'm 45 how. felt slight tingling in feet nad hands but not enough to bother me. I feel more focused and with more energy than usual not hunger and have a weird tast in my mouth. I'm taking the medication for migraines and would like to lose some weight

[[e-mail]]

ok. i have grand mal seizures and simple partial seizures. i also lost my driver license due to my seizures so i guess my seizures are more serious than yours and that is why i dont drink alcohol with my medication. i also have 2 grandchildren and i just want to take the best care of  myself that i can and still have fun. did not mean to pry.

[grannydeb2]

hey

[TherapistJen]

hey to all. tonight is my fifth night on topamax. i am aking it for severe migraines. i usually have headaches everyday and 5ish migraines a month. a couple weeks ago i had three consecutive migraines in 3 days...urgh. classic. one sided. feel em coming on. might mean to say i ate a banana and say i ate a grape, then i get the aura and light sensitivity, slur my speech a little, nausea and vommiting, then dont bother me and put me in a cold dark room for like 3 hours. after that i have a lingering headache for a couple days and im fine. have tried several different meds with no success. anyway, i am wondering if anyone has had their dosage the way mine is. it seems most of what i am reading is administered in smaller dosages than mine. my neurologist started me at 25mg for 3 nights and then added 25mg for 3 mornings and 3 nights and starting tomorrow i will be taking 25mg in the morning and 50 in the evening. so far i am doing okay. have had a little tingling in my heels, which is no big deal. i dont drink soda, so havent noticed anything different with that. did have one time earlier today where i couldnt recall a word, but thats not really new to me....it happens every now and then.....only real difference is that i am sleeping much better at night. i also had a really good workout yesterday. i think i am finally starting to feel more energy...maybe its because im finally feeling like i dont have a constant throbbing and knocking in my head!!!!!!!!! well lemme know what you all think about my dosage.......thanks jenni

[TherapistJen]

just realize i typed my dosages wrong in the previous post......... it was:
days 1-3 50mg pm
days 3-6 50mg am 50mg pm
day 7+ 50mg am 100mg pm

ok lemme know what you think. i was typing 25mg pills previously and they are actually 50 mg each

[mchipalla]

I started on 25mg in the am and 25 mg in pm for 1 week and then 25 mg in the am and 75 mg in the pm for a week and then 100 mg in the am and pm.  then I am supposed to start decreasing the Tegratol but I started doing that at the same time b/c I am not a patient person and my hair has been falling out with the Tegratol.  Each dr is different.   and if you feel you are increasing too quickly, call you dr and increase more slowly.

[mchipalla]

I didn't think you were being to invasive at all.  That's why I'm here and why I figured everyone else was too.  To support one another and @#$%   and moan once and awhile too.  Margaritas taste okay still! :)

[kittkat]

I started back on topamax 100 mg today. I have been off of it for a couple of years due to no ins. I'm currently on 3 wellbutrins a day along with ocd meds (I feel super crazy) I really don't have a social life any more because of my lack of energy and my lack of self confidence. I am 33 years old and I should be active and having the time of my life. I know that when I was on topamax previously it helped me out tremendously sane and weight wise.

Stay tuned for more updates

I am glad that I am not alone because sometimes I feel that way!

[mchipalla]

I attempted to post earlier but it didn't work.  I had a seizure on Thursday.  My first since June.  A friend who is a nurse said it was probably b/c I was decreasing the Tegretol before I was up to the full dose of the Topamax.  I am now up to my full prescribed dose of the Topamax and now only have 300 mg of Tegratol to get off of.  No real weight loss to speak of.  I certainly see changes in my appetite and certain drinks taste bad (any thing with carbonation) but that's it.  I'll keep plugging away.  Still fighting with the insurance company over the birth control issue (trying to get them to pay for an IUD)  Everyone pray for me.  That's all for now.  Hope every one else is doing well too

[Breakers1997]

Hi, I started taking Symbyax 2 months ago and have gained noticable weight. My Dr has prescribed Topomax (topamax) . I am takeing 25mg for a week then 50mg the second and so on to 100mg. I am really hopeing this works. The Symbyax has been working for my Bi-Polar. I haven't seen any effects from the Topomax (topamax) yet. I will keep you updated.

[jamiesmedstad]

Hi!  I just started Topamax yesterday for migraines and weight loss. (Trying to kill two birds with one stone. ;-)  I tried the Nurontin (sp?) and it literally made me insane, so I am hoping the same doesn't happen with this.  I am in desperate need to lose the weight because I am in the military and I just had my third baby 12 weeks ago.  Needless to say, I have a good 80 pounds of excess from all three babes (gestational diabetes) that needs to go, soon and I only have about 9 months to do it, so hopefully I can.  Is there anyone on here that gained weight from taking Topamax?  I hope that doesn't happen to me, I would be so very upset!  Also, how long did you need to "fight it out" with getting use to the drug and all the side effects...3-4 weeks?

[TuffScooter]

I have been taking Topamax now for about three weeks.  I have expereinced the following side effects:  Tingling of my hands (especially in the shower), tingling of my feet, tingling around my mouth, short term memory loss, loss for words, loss of appetite, sleppiness, mood swings, I also get out of breath very easily, I get headaches in the evenings (not migraines though).  All sodas taste awful!!!!!!  My doctor also told me that my body cannot cool itself off and to stay out of the heat.  That is another side effect.

I really hope this will all pass once I get used to this medicine.

[TuffScooter]

One more thing....My husband told me that I always have a look of on my face as if I am scared to death.

[jamiesmedstad]

Well 2.5 days into the Land of Topamax and I woke up today for the first time with NO BACK PAIN!  I have been suffering with nerve pain in my back for 15 years and have been on every med, doc, physical thereapy, medicine man, you name it...nothing has worked.  I didn't even know Topamax would do that!  Has this happened to anyone else?  I have been crying in excitment all day.  Now, I don't have quite the loss of appetite I had hoped for but maybe it's supposed to take more time??  Migranes are okay for the moment too.  I am however very moody...VERY moody, but I am trying to wait it out and take deep breaths, little things are really getting to me.  My patentence is about 0 at the moment.  How long until this goes away?  Moodiness and a little "medicine head" (space cadet) feeling is the only real downfall so far.  How is everyone else doing today?

[mchipalla]

I was VERY emotional at first with topamax too.  I felt like crying all the time.  Near  or at tears at any little thing.  That still happens.  I still feel a bit scattered and have problems with word retrieval.  I have 200 more mg of Tegretol to get off of.  Anyone else losing their hair?  Or is that still only happening to me?  It does seem to be tapering off.  I have lost a few pounds but not much to speak of.  AGAIN, I caution you ladies out there, your oral or vaginal birth control is not as effective so use back up or risk unplanned pregnancy!!  I have tingles still in the morning.  Pop and beer are terrible.  Ice tea and coffee are the only thing that tastes good.  I have the headaches in the evening too, but I almost wonder if it's from the lack of appetite and calories.  I am still tired a lot--the opposite of Tuff!  I've been on this for about 6 weeks and don't see the side effects decreasing.  Good luck to everyone.

[capenyc]

In a previous posting (months ago) someone wrote that some side effects were irreversible.  Why? What is the science behind that? Will the hair loss reverse itself once I taper off topamax?  What about short term memory loss and word recall?  Any thoughts are appreciated-particularly from medical professionals.

[plus521]

I am new to this site and have a question. Have been on topomax (topamax) for a year for daily head aches. topomax (topamax) has worked great. decreaseing them by 90%. I went from 132 lbs on my 5'2" frame to 106lbs. I am wondering will the weight loss slow down? I would hate to go off the med because I can't stop loseing weight.... I don't want to get too skinny and be unhealthy looking.  I do work out 3 days a week at the gym cardio/weight lifting, so it's not all the topomax (topamax).

[mhbelle]

I tried topamax last year for 11 days then quit due to being very tired, foggy, and a consant dull headache plus nausea.  But my migraines have gotten worse and am considering taking it again.  Althought kinda scared to get the same feeling again.  Any advice.  I know 11 days was not long enough to even know if it would help my migraines.  Plue I gain 20 lbs that I can't lose so was hoping topamax would do 2 things for me.

[beth7171]

Is anyone taking their dose at night I work nights so I have found it easier for me to take my dose one time either at the end of my shift before I go to bed or when Im home and not going to work the next day Im working up slowly to 200mg right now im on 75mg at night and its been good for me ( cross my fingers) I mean my thinking fast has gone out the window I was a whiz at adding things in my head now I tell my family you just better do the math but Im not popping Excedrin like they are candy anymore so that is a plus soda was my favorite drink I said good bye to that I do miss my coke cola the weight loss is too early only been on it 3 weeks

[TherapistJen]

hey all,
well thursday will be three weeks for me on topamax. i take 50 mg in the morning and 100 mg in the evening. i was concened with being titrated up so quickly, but i guess i haven't really had anything major to be worried about, and i see my neurologist soon. i was having daily headaches along with  frequent migraines. i have had no migraines and only two headaches! i have lost some weight, which could be from the topomax (topamax). i also workout though and have noticed that my workouts are much more productive now that i don't have this constant "pounding" in my head! so that could be why as well. my appetite did seem to decrease in the beginning, but now i'm eating pretty much the same. i do drink water like crazy....think its the fear of getting stones! i was drinking a lot before an now its like a gallon!!! so someone was asking about the effects of topamax.....without getting too technical....imagine a tree with branches and a bunch of roots. your brain has a bunch of branches and with nerves that synapse and fire.....basically connects and transmits...constantly connecting and finding different ways to branch off to get to a thought. so when you are searching for a word and cant find it, it may branch off to another section to look for it there....well topamax blocks these synapses from happening when used as an anti seizure medication. i'm not that familiar with how seizure activity works, but i believe there is too much activity and neurotransmission, and that is why they try to slow down the firing and synaptic activity......hope this helps....should i put a medical disclaimer in here? ?? lol seriously though, ask a doc. i'm in the medical field, and some of my education has included neurology, but i'm not a doctor. alright well keep posting. i love to hear how things are going for everyone. its encouraging for me! happy labor day!

[TherapistJen]

oh yeah i wanted to say two additional things.....topamax doesnt make me tired, but when i finally do lay down to go to sleep.....i actually fall asleep when i hit the pillow and sleep through the night. then i wake up rested and not groggy. even if it takes me forever to get to sleep and i only sleep 3 hours (or 7) i still wake up feeling rested and never groggy. and i also wake up feeling painfree for the first time in forever!!!!! is anyone else taking synthroid? do you take it with your topamax or space it out? and in the am or pm?

[derbytime]

Does the memory loss come back? How long do you feel tired during the day? I thought that any weight lost on a medication comes back on when you discontinue...HELP! Cannot decide if the side effects or the migraines are harder to deal with!

[Charlotte E]

Hi Amy,

I also would be interested to hear more of your comments on your hormone therapy. I have had migraines all my life, and I have gotten rid of the ones I can control such as diet and cutting out alcohol etc. I will still get one if I am under added stress or barometric pressure, but those thank goodness are few. What I can not get rid of are my hormonal migraines. I get them every month - I have tried every medicine out there. The only thing that helps is Imitrex injections and then I will get a rebound headache. I live on shots for days out of the month. I have always thought of trying a hormone therapy, but never have. I just started Topomax (topamax) 3 weeks ago just taking 25 mg at night. The side effects I have seen are tingling in my left hand and arm.

[melcat]

I was prescribed Topamax about a month ago for treatment of my Binge Eating Disorder.  I take Celexa as well.  I have lost some weight - however that was not my reason for taking the drug.  I have literally been addicted to food for years and have had intensive group counseling to try to battle the disorder and still didn't feel as though I could get a grip.  My last resort was Topamax.  It has been working.  I haven't binged since I started taking it.  It has kind of made me forget about food and I have to remind myself to eat now.  So far my only side effects have been the tiredness (so, started taking the pill before bed), word loss at first and excessive sweating.  I am nervous though for when I am weaned off of it in a year --- will I resort back to my old habits?

[RebeccaMT]

Hi,

After reading the pro's and con's I have to admit I am feeling a little bit scared. I started taking Topamax yesterday.

I was diagnosed with Bi Polar 2 disorder.

I am certainly looking forward to the weight loss aspect but have a very demanding and highly responsible job and am worried about the side effects affecting that.

[dawniangl]

Hi,

I have been on Topamax since July and it has been an interesting ride.  I am on it for migraines and daily headaches that I have had since I was 19 (I am now 41).  My neuro started me very slowly on the Topa increasing my dose a little each week until I was at 100 mg taken 50mg in am and 50 in pm.  At that dose I was having some daily headache relief but no migraine relief and I was not having any weight loss unfortunately.  My dr increased my evening dose to 75 mg just last month and that has seemed to help my migraines - so far no migraine this month - woo hoo!!!!!   And I finally started to notice some effect on my appetite and I lost maybe 4lbs, but that effect is already going away.  And I can tell you I barely ate anything, but the weight just doesnt come off.    I am so amazed when I read how much weight people have lost.  I too struggle with my weight and I too have spendt endless hours in the gym working out, have joined weight watchers, la weight loss, jenny craig, etc with no results.  I also have  a thyroid condition which is the main cause of my weight issue.  I was praying topa would be my answer to both my migraine and my weight issues but I guess I will have to be content to have it at least get rid of my migraines and keep working on my weight myself.  Unless someone else has some other ideas for me.  A friend of mine is on topamax and also takes wellbutrin and she seems to think that combo helps the weight loss and suggests I ask my  doc to put me on that too.  Any thoughts on that????  Thanks Dawn

[derbytime]

I understand your concerns...I'm afraid to start back on it to. I was on it years ago and had to discontinue use due to side effects (I run a day care business). I did lose about 10 lbs. but don't remember the dosage I was on. I'm thinking it was pretty high...my sister is on Topamax (200 mg./day) and she's lost a TON of weight. It seems the higher the dose, the higher the weight loss effect. Can anyone tell me if this is true?

[RebeccaMT]

Hi derbytime and everyone,

I have been taking Topamax for 3 days and I have been eating a lot (I am no sure if this is just psychological). Soda is now tasting flat, which is a little weird, but other than that, nothing much to report.
Yesterday I felt a little "foggy" and kept fumbling for words but I am hoping that was from being tired.
I would love to be able to check in with people who are taking this med and daily (or at some regular interval) talk about what is going on). Anyone interested?

[derbytime]

Hey there...I would like to touch base with anyone interested if I start back on Topamax. I go to my Neuro. on Friday and I'm pretty sure that is what she will suggest. I'll need all the support I can get!! Good luck to you all! Getting meds stabalized is a long process.

[topamax rules]

I've been on topamax for 6 monthes now,I love it,I've had no side effects other than the weight loss which is awesome!I had migraines and i'm bi-poler my moods have been 85% better and i havent had a migraine in 51/2 monthes!Also i don't drink so much mountain dew so my dentist is happier!It's been great!thanks topamax!

[RebeccaMT]

Good luck to you too Derby

[Breakers1997]

How long did it take for the weightloss to start? I am 3 weeks into this up to 75mg and stil hungry all the time. I really hope it kicks in soon :-(

[derbytime]

Any weight loss yet? Do you feel "out of it" at all? I did last time I was on it (3 years ago). I'm thinking I only stayed on it a couple of months b/c of the side effects. How do you feel this morning? Any short term memory loss?

[mchipalla]

I am finally off all of the Tegratol.  It took about 5 weeks to do it and I probaby did it a bit faster than I should have.  I am up to the full dose of the Topamax, 100mg a.m and p.m.  I have noticed that the memory problems that I was having earlier are getting better (either that or I'm forgetting that I'm having the--heehee) and my recall is better.  I still have the tingling in my feet, especially in the morning and my lips feel funny most of the time.  Not tingly but a bit numb.  Other than that, I feel pretty good and have not had any seizures.  I have lost about 8 pounds and since my appetite is still affected, I anticipate that will continue to happen.  If anyone is concerned about losing too much, you could probably ask dr to combine with Tegratol, b/c my appetite was a bit increased when the meds were combined.  Right now I could still stand to lose some more so I'm not ready to make any changes.  My hair is still falling out by the brush full and the insurance company will not cover an IUD.  Life keeps rolling by.  My energy is  a bit low, but I guess it probably always has been.  I was looking at the other posts and the one who posted said she feels so rested in the morning.  I would like to feel energized.  Maybe exercise would help, but that would take energy!!

Good luck to everyone!

[derbytime]

Hi! How long have you been taking the Topamax? Good for you with the weight loss! Does your hair really fall out alot? I think my hair is too thin to make it through that!  ;-)
Keep in touch and I'll let everyone know what my Dr. decides on Friday. Do you ever have trouble falling and staying asleep on this med?

[mchipalla]

I have been on Topamax for 6 weeks.  My hair started falling out with the Tegratol and is continuing with the Topamax!  Even the hair dresser is noticing.  I have tried a multivitamin, fish oil tablets, special shampoo, the works.  I have no trouble falling asleep, but I do have trouble staying asleep.  I drink water like a fish.  My great love affair with beer is over without a goodbye.................................My biggest problem is the efficacy of the contraception though!!  I do think the short term memory loss gets better.  It was much worse when I first started.  (and I know when it's happening, so I just kind of tell people that I just lost my train of thought and it usually comes back to me in a few seconds).  Good luck to you!

[kimmie2290]

I am getting ready to start Topamax next week,I get headaches that put me in the bed for at least a day.I work full time and also have teenage twin daughters,i am hoping it wont interfere with my work and taking care of my family.I am also about 80 pounds over weight so the weightloss part of sounds really good!My twins weighed 8 pounds each at birth and ever since I just cant lose the weight.Its to the point that I am getting really depressed.I dont go to family functions anymore or ball-games,im ashamed to be in public.Does anyone have any suggestions as to what your mental statis is when you first start the Topamax?

[RebeccaMT]

Hi Everyone,

Have been taking Topamax for one week (50mg at bedtime). Tomorrow my dose will up to 50mg morning and 50mgat bedtime, I am a little nervous. No weightloss for me, on the contrary, I have still been quite hungry. Soda tastes really flat and icky and I keep losing words in sentences while I am talking (which is difficult because I am an educator). I have to say though, that my mood has improved and I am feeling a lot better.

Kind regards,

Rebecca

[derbytime]

Good morning...glad to hear you are feeling better. Give it time on the weight loss. I have heard of very few people that don't lose at least a LITTLE weight while taking this drug. Maybe it just takes some time to kick in. The first time I was on Topamax I did lose some weight...not 30+ lbs. some are talking about but 10 or 15. I have read in other posts that taking the drug a second time doesn't have the same effect. I'm hoping this is not the case for me. I could stand to lose 20-30 pounds myself.
Happy Day!  ;-)

[jb222]

I was on Topamax for about 2-3 weeks for depression/weight loss and it almost cost me my job! I am a disc jockey and it fried my brain to the point where I couldn't speak fluently on the radio...my brain would freeze or even worse I would ramble trying to articulate my thoughts...it was AWFUL and HUMILIATING. It also sent me into hibernation...I would get home and literally sleep from 3:30pm to 5:15am. My life was just a blur. My memory was terrible too. All it did was put me in a haze and waste a few weeks of my life. P.S. Brown and clear pops did taste bad but yellow pops like Mountain Dew and Mello Yellow tasted normal. I lost 6 pounds in those few weeks too. However I would rather be fat, sane, and employed then skinny, crazy, and out of a job! Good luck!

[RebeccaMT]

Hi jb,

I am so glad you posted, I am so tired when I get home from work that I want to just fall asleep but when I finally get to bed at night I can't.

I am supposed to up my dose tomorrow and I am really worried. As I said above, I talk all day as part of my job, but, since starting this medication (I realized today) I just talk ALL the time... almost manic? I am concerned because I could be just being over sensitive and I know my mood has improved but I do not want to go in the complete opposite direction either. See... I am doing it right now lol!

Thanks for your post

[derbytime]

What jb said is exactly what I'm worried about!! I think back to when I was taking Topamax and can't remember birthdays, holidays, events, etc. I am scared to death to start up again!!! However, this was the only drug that really helped with my headaches. It seems I have to pick the lesser of two evils. Anyone else feel this way?

[TuffScooter]

On 9-11-2007, I had to call 911.  It was my fourth week on Topamax.  I had just started my final dosage that I would remain on for here on out.  It was 200mg.  First, I woke up around 4am from having a nightmare that I died from a heart attack.  Around 9am that morning my chest actually started hurting really bad and I could not breath.  I had to call 911.  When the paramedics got to me, I had no color to me.  They had to rush me to the ER.  The ER doctor checked both my heart and my lungs out.  Thank God they were both okay.  He said that the Topamax caused me to have an Anxiety Attack.  He also told me that I was having a severe reacting to the Topamax and to get off of it ASAP.  He felt it caused my nightmares as well.  I went to see my regular doctor and he did take me off the topamax, but I have to come off it slowly.  I am going to try the Lamictal.  Does anybody know anything about that?  

[lct1900]

Hi all, been on Topa since june. Side effects are not bad...some tingling, some decrease in appetite and the migs are mangeable with a maxalt, aleve or somethin stronger. lol! Still waiting for that weight loss! I was on Zonegran (the sister drug of topamax) for several years and it was a WONDER after a couple months. I lost 45lbs and could even drink red wine!!! but then it started to make me have horrible adult acne (topamax can do that too I know, am praying it does not!), then that went away and so did my hair. not all of it! lol. just enough to freak me out. After a few years, I was gaining weight back and when it started not to even work as well on the migraines (I was on 300-400mg daily) I decided to try topamax. So here I am - just up to 175 a day. Its helping, but not a miracle yet. I hope I dont have to go higher than 200 to get relief. I am not as "dumb" on topamax as I was on zonegran. Its true when they say the cure is worse  than the disease! Think I need to up my wellbutrin too. this %$#&& makes me depressed!! :}

[derbytime]

As I suspected, my Dr. put my back on Topamax beginning tonight. I will start with 25 mg. for one week, then 50 the second week and so on till I get to 100 mg./day. Hoping I will do well on 100 but may need to go up to 200 mg. I'm nervous and can already feel the side effects kicking in!!! I haven't had my first dose!!  ;-)  Happy Friday!

[RebeccaMT]

Hi Derby,

I am up to 100 and feeling fine. Actually, I am feeling so much better. The side effects have diminished and I am feeling really good. I up the dose again to 150 on Wednesday.If you are interested, we can continue to keep checking in with each other?

Good luck, I am sending you positive vibes

Rebecca

[derbytime]

Thank you for the vibes...I'm praying hard! Any weight loss yet for you? What is your proposed final dose? 200 mg? I'll check in again soon. While I was at the Dr. today, she looked back at my chart and I lost had 17 lbs. over about 4 months when I was on Topa before...it seems people on this post and others have lost MUCH more than that. Like all other side effects, I'm sure it is different for everyone. Have a great weekend!

[RebeccaMT]

No weight loss yet. Will keep you posted.

have a good one

[derbytime]

Day 2...so far so good...25 mg. at night for a week. I've had no side effects yet but don't expect any at such a low dose. How are you all doing?

[mchipalla]

10 pounds so far.  Seems like I'm doing okay.  Just wondering for anyone who takes this for seizures, is the typical dosage 100 mg two times a day and do drs ever want blood draws like they do for tegratol?  thanks in advance for any advice.

[melimel]

I took my first dose of Topamx last night 25 mg. It was terrible, I got so sick to my stomach. Was up all night, throwing up. (Dry Heaves). When I did finally fall asleep, I remember waking up and before opening my eyes, I could feel them moving rapidly from side to side and my legs would jolt by them selves, and I was breathing rapidly as if I had just ran a marathon. It was a terrible experience. I am lucky if I got 2 hours sleep. I have heard good things about this drug, but for me it had some side affects from the onset. I phoned my doctor this morning and was instructed not to take it anymore.

[derbytime]

It looks like this site is not very active...does anyone know of one that is? I am doing pretty well this time around. I'm up to 25 mg. am and 25 mg. pm. and making an assumption that my body is handling the side effects better this time since I've been on Topamax before. I plan to ask my Dr. about this but it may be like pregnancy...your body just "remembers" and recognizes the intrusion. Make sense? I am having VERY light tingling, no nausea, no weight loss (bummer), no memory loss (yet) but realize these things may come later. I don't plan to go up to as high a dose this time though.

melimel...I'm so sorry about your experience...that sounds really scary.

[krout]

Hey...I am totally new at this-I just took my 2nd dose of 25mg last night of Topamax. So far so good-my throat is a little sore and my beloved diet coke taste weird but other than that I am ok. I am really, really, hoping this will help me lose weight-I have gained 30 pounds in the past 2 years on Effexor...great right? Can anyone let me know how long it was before that noticed they were losing weight? I would really appriciate it!

[derbytime]

How is everybody? I am doing well...a noted change the second time around I thought I would report...side effects are much decreased!!! I am up to 50 mg. at night at 25 mg. in the morning and side effects are minimal. I feel really good and am in the middle of week 2. Weight loss may come later but before I started back on Topamax, I was beginning a diet so it will be hard to tell which is actually effecting my weight loss.
Happy Friday!

[Topotrip]

Hi all!  I just took my first dose about....mmm....two hours ago.  All of a sudden, within twenty minutes of taking my one little teensy 25mg pill, my hand (only the left one) felt like ICE, and tingled.  It last for maybe 15 minutes, then went away.  I do feel a little space cadet-ish, though.  I'm exicted for the weight loss side effects, but I am taking the medication as prevention for migraines.  My doc also gave me nasal Imitrex to deal with the intermittent migraines until the meds take effect.  I'm a little worried about the word finding issues that go along with this drug; i tend to stumble a little bit over some of the thoughts that I have in the first place.  Who knows, maybe it will help! Anyway, I was just interested in trading stories and weight loss poundage lost if I have any...I am assuming that there will be, because I am one of those people who lives to eat rather than eats to live, you know?!  So the decrease in appetite will be awesome.  I am also looking forward to waking up easily after only a few hours of sleep.  I am also one of those people who sleeps A LOT, naturally, and waking up before 9am is really difficult regardless of the time that I went to bed the night before.  SO here's to trying something new, and it being a success!!! -Meg

[mchipalla]

Still curious what everyones dosage is and what the ultimate dosage will be.  I am at 100 mg am and pm and as far as I know I think this is where I will stay as long as I don't have an more seizures.  I have been on the meds for about 8 weeks and have lost 10 pounds.  I need to losse about 15 more to be in a  comfortable size.  It's coming off at about 2 a week which is a healthy time frame.  I don't feel hungry but I still have cravings for certain things.  I get tingly in my feel and hands and often times my lips feel funny.  I feel great about the first 10 pounds getting back into old cloths, but for me, this medicine hasn't done a thing for me with the sleep.  I still feel tired.  I can sleep 10=12 hours a night and take a nap during the day.  Pop and beer are horrible.  shoot me a quick email about what the final dosage will be for everyone and why you are prescribed this medicine.  THANKS!  100 mg am, 100 mg. p,m. Prescribed for epilepsy-simple partial seizures.

[derbytime]

I am working up to hopefully only 75 mg. a.m. and 75 mg. p.m. but possibly 100 each as I was on before. I take it for migraines and did lose weight before but not this time yet. My side effects are minimal now but were really bad when I took Topamax 3 years ago. Good luck!! It sounds like you are doing well so far!!

[mchipalla]

Thanks for answering.  ANYONE ELSE OUT THERE?  

[Topotrip]

No other instances of side effects yet, and no weird soda tastes.  I am going to take two pills tonight, to start ramping up to my destination of 100mg a day (50mg in the am, 50mg in the pm).  Also I haven't started losing any weight.  My interest in food has diminished a bit, but I still eat normally I would say.  

[M&M CHICK]

I have had mirgrians since I was little I would bang my head on the walls.then a few years passed and they went away.Ive alawys been sick off and on.but when I turned 15yr my mirgrians came back.then,went away.then at age 30 they came back at first they were mild and then they were every day.I couldn't function.I was getting shots in the back of my head. my doctor has sent me to 2 nurlogist and one said I was just one of those people to get them and there was nothing to do for them.I am heavy now.I have been up and down in my weight as a kid and an adlut.I have stress in my life I take tones of meds.for my other health problems and I saw a new nurlogist and he order me topamax .he started me on 50mg,but I also take elavil 75 mg. and durdin as needed. he wants me to countion them too. but I work out three days a week and see a chricapractor 3 days a week and this new doc. says he thinks its something in my spine.has anyone else had this same thing with them?I also suffer from dibities and deppersion and menapause.and I have already had a full historectom and Im only 35 yrs old now.

[opus5]

I 53 and started on Topamax (50 mg am & pm) for weight loss over a year ago. I had some of the usual problems - soda tasting flat, feeling like a space cadet, adult acne, -  but nothing serious. I also discovered that I could fall asleep sitting up. When we'd drive to visit the in-laws, I'd keep nodding off.  I lost 55 pounds in a year mainly due to the Topamax taking away my need to snack. I was also on Weight Watchers, but I really wasn't hungry at all. As others have, I would forget to eat. That was ok, I could stand to miss a few meals!

But in June I started noticing my hair was falling out. The amount that came out in the shower was shocking, but not as shocking as the floor of my bathroom. Since I have thick hair, the hair loss was not noticeable until August. When I saw some bare spots (not really big), I freaked, so I stopped taking the Topamax. My friend who had been on Topamax for migraines told me she had the same problem, but it stopped when she stopped taking the medicine. (She now gets shots - around 100 - of Botox in her head every 3-4 months, which works better for her than medicine.) Well, it's October and my hair is still falling out, not as much as when I was on Topamax, but still falling out. Since I'm also on Synthroid, I really don't know if it's the Topamax, the Synthroid or maybe a thyroid imbalance, so I have a doctor appointment next week to ascertain the cause.

I've noticed that since being off Topamax, my mind is back to normal and I can now drink sodas, although I have no desire to. My need to snack is back but less than before, and since being on WWs for over a year, I don't crave junk food anymore. Thanks to Topamax, I've got my eating under control and don't feel the need to go back on it. And if it is responsible for my hair loss, I definitely won't.

All tolled, my only really bad reaction to Topamax was the hair loss, if that truly is the cause. Good luck to everyone.

[Topotrip]

My hair already falls out a bunch, because I have SUPER thick hair, but I haven't noticed a change.  I have noticed a drastic difference in my eating habits this last two weeks.  The bump from 50mg a day to 75 mg a day really did me in....the tingling in my extremities got worse (but is still not any worse than feeling a limb go to "sleep", and eating bananas- taking in more potassium- helps A LOT) and the urge to eat is WAYYY supressed. I've always had acne, even as an adult, so I don't notice a difference in that either.  I'm not having any really space cadet-ish feelings either....not to the extent of feeling "stupid" as other have attested to, nor am I experiencing any word recall issues.  So far, so good :)

[sky74]

I started  topamax back in Dec of  05. I take 100mg in the am. & 100mg in the pm.I'v lost 3/4 of my hair it was so thick now it is just so thin .I'm scared to go off the topamax ,I dont need the migraines back.

[Fere]

I have been suffering from migraines for many years.  I have been prescribed 100mg of Topamax to help prevent my migraine attacks.  The only problem is, I have been scared to take it.  I hear so many negative things about this medicine,but I also want some relief.  I guess you can say what worries me the most is the memory recall and possible hair loss.  I would not mind the weight loss side effect, I wouldn't mind losing 10-20 pounds.  The Topamax is filled at ready at my pharmacy and I am scared to get it.  How common for Topamax users is it to loose your hair or have thinning hair?  I know the memory side effect is really common.  I would like to think I am not so vain, but the thought of losing my hair scares me.  Also, what is your typical weight loss?  I would not want to lose too much weight and look sickly (and bald).  Plus, any tricks to help with the side effects?

Thank you for your responses.

[mchipalla]

I have only lost about 10 pounds.  I could stand to lose about 10 more but nothing seems to be  happening!  Too bad for me!  I have lost quite a bit of hair but that started with the Tegratol and kept going with the Topamax.  Nobody but me notices.  My friends say they can see a difference at all.  I can tell the most in my brush and in the shower.  Also when I put my hair in a ponytail.  The memory loss and word recall gets better after about a month to 6 weeks.  I have been on the meds for about 3 months.  I dont feel like it is an issue that holds me back like it was in the beginning.  My goodness, I was such a dope when I first started it I considered going off of it.  I warned my friends and coworkers when I first started it of the side effects and they were very supportive.  I still have the tingling in the morning and about an hour after I take the evening dose.  My lips usually feel funny for awhile too but its better than it used to be.  For the most part I think the side effects do go away if you can bare with it for awhile.  I am on 100 mg am. and pm for epilepsy.  Good luck toyou.  

[Fere]

I am thinking that maybe the hair loss some experience is due to rapid weight loss and/or vitamin deficiency due to not eating properly.  I am thinking of taking vitamin supplements along with my medicine to prevent this from happening.  I read that folic acid, B vitamins (along with other vitamins cans help).  ONE NOTE: I know too much of certain vitamins can actually cause hair loss so I would be sure not to exceed the recommended amounts.  This is only a suggestion for those of you who have problems with hair loss, maybe it will help.  Be sure to not exceed the maximum dosage for any vitamin.  I think I will just take a multi-vitamin like Centrum or something similar.  I have no had any hair loss yet, but I am hoping that this will help prevent it.  Several other medical factors could also induce hair loss, like thyroid problems for example.

[sky74]

I have had my thyroid checked that was ok .I did start taking biotin ,zinc, b-12,& centrum every day Dr .recomended amounts because of the hair loss.It has not helped any.Good luck!

[mchipalla]

I also take a multi vitamin and like I said, no rapid weight loss, and I eat very properly.  I was also taking the fish oil tablets b/c I thought that may help.  Had the thyroid checked as well.  I like your theory though and it was worth a try (wink wink).  I wish I could find some other reason to blame it on other than the topamax, but there really is nothing.  Hope it prevents it for you.  Some people don't have that particular side effect so maybe you won't.

[sky74]

I went to the dr. today he now checked my hormone levels and said to take prenatl vitamin vs.multi vitamin.

[derbytime]

Hey everyone...anybody have problems with acne on Topamax? Never in my whole life have I had pimples...now at age 39 I have them for the first time!! Migraines are gone, pimples have appeared! This stinks!! Anybody else?

[AnnieHall666]

Hello fellow Topamax swallowers!

I'm 26, female, 5'9, 155 lbs, recently diagnosed as epileptic.  I'm starting Topamax tonight - 25 mgs in the evening, working up from there.

I've done quite a bit of research (both online and with various neurologists) and would love to correspond with some of you and discuss how this drug is working.

Some of the side effects scare the living sh*t out of me (hair loss, acne, stupidity), while other side effects, not so much (weight loss, no seizures, ability to drive..)

So if you are game - lets email!  ***@****

Talk soon!

[pulledcurtain]

I started taking Topamax 4 days ago at 25 mgs at night time. Since then I have been having weird feelings in my stomach. It's almost like my stomach is hungry....but nothing sounds good to eat. I take the pill at bed time, and a few hours later I am lying there with what feels like terrible hunger pangs. And then I wake up starving. During the day though, my stomach feels almost nervous...like there is a rock in it....still almost like it is hungry...but still nothing sounds that great to eat. I DO eat...some things taste bad (pop and mac and cheese for sure) but other things are fine. I was hoping that since this pill was an appetite supressant, it would do just that...or at least not affect my appetite at all...not make me hungrier!!! I'm confused and I'm hoping that when my does goes up, the side effect of appetite loss will appear OR increased hunger will DISAPPEAR!! Any help would be GREATLY appreciated!!

[abauers1]

I know what you mean about the stomach issues, I've had the same.  I've been taking 25 in the morning and 25 at night and have love 9 lbs so far.  I love the weight loss.  I have had no side effects
other than a dry mouth.  I don't count the weight loss as a side effect hehe.  Carbonated drinks do tastes like hell but the only thing that affected was my beer drinking.  So I gave that up.  Now I stick to Red Bull and Vodka.  Have you experienced any other side effects?

[abauers1]

In restrospect I guess I have had some side effects.

[tiegs]

hi abauers,
i am on the same dosage. i just started this week. how long have you been on that dosage and when would you say the carbonated drinks started to taste bad?
i drink 2, 2 litre bottles of diet coke a day and would love for it to taste like **** so i can kick the habit!
also, when did weight start to change and appetite decrease?

[pulledcurtain]

I haven't tried drinking my beer yet....I hope it doesnt taste bad!! But I'm with you...I will drink Red Bull and Vodka instead also! Have you had any appetite changes at all? I see you've lost weight, but has your appetite changed? I moved up to 50 mg at night (been 2 nights so far) My appetite is still like a rollercoaster....I dont weigh myself often so not sure if I've lost any weight yet. We'll have to keep eachother updated since we're all newbies. Pop tastes funny, but I still drink it (habit) It's diet pop, so I dont worry anyway. I have had some seriously vivid dreams lately and tingling hands and feet.....some pretty "zoned out" moments, but other than that....not much else. I've been in a  bit of a better mood too lately. Just REALLY wish I'd lose my appetite like eveyrone else. Hoping that is at higher dosage. Keep me updated!! And any advice from anyone would be awesome!!

[abauers1]

I have been on the 25 in the am and the 25 in the pm for a week and a half.  I don't know if I'm going to be bumped up or not, I will find out when I see my doc again.  I think I will ask her to though because I am not having the appetite suppressant effect I was the first week.  The drinks started totasad alsmost immediately.  I drink the sugarfree RedBull so it doesn't hinder any weightloss I might have.  Pulledcurtain- weigh yourself so you can track it.  I'm curious to see if you are losing as well as you Tiegs.  I have only had sporadic tingling in my hands and feet.  But the dry mouth is terrible!!!  Do you have that?

[tiegs]

hi, thanks for your reply. i have had no side effects whatsoever. i have been a bit tired and more mellowed out (mild sedation) but then again it is only 50mg. I am hoping a higher dosage and I will see some more benefit (including decrease in binges)

[pulledcurtain]

abuers- I haven't had any appetite suppressant effects at all...but eventually after slowly moving up, I will be up to 100mg....I have read that the higher doses is where the appetite suppressent effect usually begins...so fingers crossed!! Yes I have terrible dry mouth!!! I find that I am always thirsty! And if I don't drink anything for a while....I start to feel hungry, which I think is actually my body being thirsty! So far, it appears I may have lost 2 pounds....but I fluctuate a LOT!!
I have my foggy zoned out moments still...but find when I want to be focused....I sure can be!!
Keep me up to date!! Also...I see you  are from Pinconning....I am from Ann Arbor!! I go through Pinnconning all the time on my way up north!!

Tiegs- I am also hoping for decrease in binges with higher doses....I tend to do that a lot on weekends, so hoping it will help...let me know how you do when you go up in dosage!

I want the appetite suppression everyone keeps talking about so bad!! Anyone else out there....is it the higher dosage that really counts??

[abauers1]

I'm going to have to ask for a higher dose because I am having hunger pains all over again.  Just like I'm not on anything at times.  I am foggy as well, and sometimes lose my train of thought or a word I'm looking for.  That's embarrassing.... lol.  
Ann Arbor eh?  It's a small world.  I'm orginally from Madison Heights but moved up here after I had my child.  
Well, keep me posted and I will do the same.
Happy Turkey Day!!  

[Valerie24]

Just want to post a quick comment here on the Topamax. I was prescribed Topamax for headaches which I experience everyday as a result from breaking my neck (C2) in a car accident. It worked really well at first; however, the side-effects I experienced were horrible. I had to have everything orgainzed kind of like obsessive-compulsive. This wasn't because I wanted it that way, it was because I NEEDED it that way. I forgot EVERYTHING, literally. Along with forgetting everything I also experienced feeling stupid. I couldn't talk or organize my words when i spoke and often said things completely backwards, my grammar skills lessened a lot, and there were the others like tingly hands and a fuzzy feeling in my head. I don't remember how long I was on it until I experienced another headache, but it was so wonderful to not have the headaches. It also did help me lose weight which was post-baby weight, but I got to the point where I was starting to look way too thin. The neurologist kept upping the dosage and upping it more until I was on 100mg 2x a day. This didn't work. I kept on experiencing headaches after that. I have been giving it some serious though to trying this medicine again, though. I have been through many different types of treatment and Topamax is the only one that helped my headaches. If anyone has any other questions on the side-effects or anything else pertaining to the Topamax I will be more than willing to help as best as I can. E-mail me at: ***@****

[abauers1]

Valerie24, did you have any of the other side effects mentioned above such as hair loss or worse migraines?  Also, how much weight did you lose and how long did it take?  I am also postbaby right now and would love to lose the last ton of weight that I put on.  How long have you been on it?  And how long did the symptoms last?  Like the fuzzy head and such.  I certainly have that.  Sometimes I'll lose all the words I was about to say.  It's truly amazing how such a small pill can cause such powerful side effects.  Anyways any feedback would be appreciated.  

[pulledcurtain]

Well, so far, same as far as side effects go. The bottoms of my feet are always tingling and the palms of my hands tingle at times...but nothing I can't deal with. Haven't had any headaches...so I'd say it's helping. I'm not having much help with appetite yet, but I go up to 75 mg on Sunday, so maybe that will help, who knows! The "stupids" are getting better....still have moments of "what was I just gonna do......?" But I had those before taking Topamax! I'm hoping the weight loss side effect will be an added bonus for me during the holiday feasting season!! Was curious though as far as if the weight loss side effect is ONLY due to the loss of appetite side effect or if it is it's own side effect....if anyone knows the answer to that.....???

[mchipalla]

I have been on this medication for about 5 months now and although I felt the dopiness too, it is a side effect that goes away, I would say after about 8-12 weeks.  I thought about going off of it too, but since I have seizures that was not really an option.  I gained 10 pounds on Tegratol and got off of that asap!  I lost the weight pretty quickly on the Topamax and have just coasted ever since (no more weight loss) until about 3 weeks ago.  Suddenly I am losing again.  About 2 pounds a week.  I go through a case and a half of bottled water a week with the dry mouth.  The tingly feet and hands  have gone away too.  I seldomly have tingles in my fingertips for just a bit about an hour after I take the medication but it does not last too long.  I get a buzz much faster from red wine and my alcohol intake has had to drop tremendously (which is a good thing--b/c it decreases the efficacy of the Topamax and increases the potentcy of alcohol)  also girls beware, Topamax reduces the efficacy of vaginal or oral birth control and just increasing the dosage of your birth control will NOT make a difference!  You must use condoms!! (OR IUD or the shots or patch---actually I'm not sure about the patch)  But I am sure that the PILL is not effective with Topamax nor is the Nuva Ring.

Overall, I am thrilled with Topamax after waiting out the side effects.  I will try to keep you posted on the weight loss.  One of the things my neuro told me about the weight loss is that after a year  people are talking about a 15-20% loss, you have to be patient, not expect it all at once so I am guessing it is a slow process.

My hair is very thing compared to when I started these meds but  I have had no problems with acne.  That's just a side comment from some other postings I saw.

[pulledcurtain]

What dosage are you on? Did you lose the weight because of any loss of appetite? Just curious!!

[mchipalla]

I am on 100mg bid prescribed for epilepsy.  I initially did not feel a loss of appetite but the weight I put on from the tegretol just seemed to drop off.  Now, I've been on the meds since July (at this dose) and I do feel like I've just seemed to have had a loss of appetite all of a sudden.  Just in the past two to three weeks or so.  I am 5'7 and went from 148 to 144 without changing my diet at all.  I can't really say what is happening or why, but I'm not complaining.  Are you on this just as an appetite suppressant?  I have a student who is on this solely to lose weight which is very strange to me--there is no way I could have put up with the side effects just to lose weight (then again I'm not so much over weight although I can stand to lose some) plus I miss beer sooooooo much.  Keep me posted and I'll do the same.

[mchipalla]

I guess I never actually answered  your question and I looked back to find your first post to see if  you mentioned why you are on this medication so it looks like you are on it for weight loss so I wanted to let you know that I never felt like I ever "lost" my appetite.  Like I said I took off the weight from the the tegratol which was a side effect from that medication and that may have come off just b/c it was a side effect from that certain med.  But I have never actually never lost weight being on Topamax.  I am just starting to lose some now (after 5 months) so I don't know if it is related to Topamax or not.  I know it is a side effect for a lot of people, it just hasn't actually been one for me.  I think I took off about 4 pounds in addition to the 10 from the Tegratol and now about 5-6 more, so it it something and maybe it is and maybe it isn't.  

I sound like I'm rambling.  I'm so sorry and this probably is not helpful at all.  I hope you find what you are looking for with a weight loss solution.  I'm starting to lose some now, so stick with it, and see.  I just haven't ever really felt the loss of appetite, but I don't really have huge cravings like I used to have.  Good luck!

[pulledcurtain]

Thanks for your reply! Actually, I am on it for migraines! I was just pretty darn excited about the possibilty of weight loss side effects. I'm not overweight by any means...just very weight conscious...always have been.  And whenever I am put on a new medication, the possibilty of weight GAIN is always my first worry....so the thought of this one actually causing loss was just pretty surprising....and sounded like a bonus. I'm also a worrier, so I always put myself in that category in the <1% of people that would probably gain weight on a drug that made everyone else lose weight....so I was just looking for everyone else's experiences! I am up to 75 mg today....ending up at 100mg next week. So far, no headaches...thats the best part!!!

[mchipalla]

you sound like me.  I'm on the scale every morning!  I ballooned up on that tegratol and was so disgusted I about went ape @#$%^!!  Very weight concious to say the least.  I had great hopes that I would lose on this too, but it didn't happen, but like I said, now all of a sudden I am seeing some small differences that hopefully may mean......(dare I say it out loud?)  No, I won't jinx myself.  This website has been dead for so long, I'm glad to see it becoming more active.  I was down another half pound today so I will keep you posted on here if you promise to do the same.  Have you seen any other changes yet?  Keep drinking your water, the stupids go away after awhile as does the tingling sensation.  I'm glad your headaches are going away, I have been seizure free since starting this medication too and no blood draws are required!

[pulledcurtain]

Another I noticed recently too...though this could be due to having to drink more water....but I have been having to pee a LOT lately...and I feel like I am retaining a lot less water than normal (which I definitely like!) I have read somewhere before that Topamax acts like a diuretic...have you heard that before?? I only weigh myself once a week (and since this is right after Thanksgiving...I'm giving myself an extra week before I do!) I will keep you updated on my progress as long as you do too!!!

[mchipalla]

I have never heard that it acts as diuretic and it may have more to do with how much water you are drinking.  I do know that in the summer months the warning info says it keeps you from sweating as much so you have to be careful.  I weighed myself before and after turkey day and it didn't make any difference.  This sounds gross but you need to be pooping more to be losing weight.  (you probably knew that already).    Good for you to only weigh yourself once a week.  I wish I could do that, but getting on the scale is like brushing my teeth or putting on my socks.  Do  you have a weight goal?  Maybe we could help support each other on here.  I would really like to lose 10 pounds.  I would feel great at 136 and I think if I stuck to it every day and had someone doing it with me I could get there.  Maybe I should throw away my scale.......

How are you feeling with the side effects?  Tingly?  drinking pop?  Yuck!  I still miss beer so much!  Take care.

[pulledcurtain]

LOL it's funny you said that about pooping....becuause I was going to mention that I seem to be doing a LOT of that lately...and I usually have a lot of problems with that.....

To be honest about having a weight goal....my weight goal is not a healthy one, I am already pretty close to being underweight...so I guess in reality my goal is to maintain. (For now anyway...unless I gain!!!)

When I went up to 75 mg the other night, my whole body got this really weird feeling...like every part of my body was HUGE...liike my fingers were balloons....it was a really weird feeling...along with the usual tingling....only lasted a little bit, it was just strange! Pop still tastes flat, but I still drink it..just out of habit, and just to kill off any temptation to snack. I miss the way beer tastes so bad....but now I'm starting to kinda like having vodka drinks. We'll see!!!!

[Abauers]

Well, I'm still here but I have stopped losing weight.  I have lost the initial 9 lbs but that's it.  My appetite is back but i am continuing to take it.  Today I'm calling my doc to have her bump up the medication so I can get back on the weight loss bus....
The beer still tastes like **** so I'm sticking to the sugarfree Redbull and vodka.  That seems to do the trick.
It doesn't help that it's winter now and everything is slowing down including me.  The last thing I want to do is get outside and do something.  It's too damned cold.  
I haven't had any other side effects so I guess I should be okay going up another 25 or 50 mils.  What are you on now?

[pulledcurtain]

I am on 75mg....no appetite changes....I dont feel those weird hunger like pangs anymore thankfully...but haven't lost my appetite. I have been sleeping SOOOOOOO great, it has been wonderful!!! And haven't had any nasty headaches!! No bad side effects either except maybe a little extra fatigue during the day (nothing a little caffeine cant fix though!)
Beer tastes HORRIBLE....that was pretty disappointing.....but drinking vodka and juice will work just fine. My tolerance to alcohol has been pretty much cut in half though...kinda good....kinda bad (could mean an early night if I'm not careful) I think I am losing weight...my clothes are looser...will be weighing in tomorrow morning. (I probably just jinxed myself)
I hear you....this cold is absolutely miserable...especially the wind!! Let me know if you get a higher dose!!

[mchipalla]

I love it when my stomach growls and I don't feel hungry.  I think sometimes I just eat b/c I know it's time or something.  My b/f gets so mad at me b/c he says you only lose weight when you eat right.  The only way I lose weight is to not eat.  Men lose weight in a completely different way.  I was very disappointed to read that you are close to being at an unhealthy weight already and you still want to lose weight.  I'm looking for a partner on here and your looking for I don't know what.  Good luck to you anyway, you seem to know where you are at , so keep a solid head on your shoulders b/c you sound like you could get to the "danger" zone at some point, and fairly quicky.  I'm not judging, just doing my therapist routine.  Take care!

[Abauers]

My doc bumped me up to 100 mil's a day yesterday so we'll see how that goes,  I have a lot of weight to lose since having my baby so I'm looking forward to that.  Mchipalla, I agree about the men losing wieght differently and they're always saying you have to eat.  But I don't need to eat.  That's how I'm going to lose my weight.  PC, that'sawesome about the headaches!  I'm starting to have extra tingling in my hands and feet but nothing I can't handle. I haven't had any problems with drinking alcohol, I can still drink the same amount...lol...Anywho, hope all is well write when you get a chance.  Autumn

[derbytime]

I've been busy for a while...doing well on the Topamax. Side effects are under control. Weight loss has slowed a bit...only lost 10 lbs. in 12 weeks this time around. I do have to say that being on this med the second time, side effects are minimal which is GREAT!! How are you all? My Dr. said your body recognizes the med. and accepts it or something like that. Anyone else? I miss beer and Coke Zero!!! Sadness!

[mchipalla]

I desparately miss beer.  But that was probably the weight that was lost!  10 pounds in 12 weeks is great.  I'm glad to hear that your side effects are minimal this time around, what dosage are you up to?  Anyone looking to only lose about 10 pounds?  I'm looking for a weight loss buddy on here to help keep me going maybe 15 if I can stand it.  The dreaded period water weight this week, I'm a bloated mess.  How much are you looking to lose Abauers?  I wasn't saying I don't need to eat, b/c obviously I need to eat, but I don't need to eat 6 times a day and especially 1st thing in the morning.  He (b/f) says that jumpstarts your metabolism but I find if I eat when I first get up in the morning then I am hungry all day.  I prefer to have coffee when I first get up and eat when I feel  hungry around 9:30-10:00 a.m.  Anyone else have tips they want to share?

[derbytime]

I am with you on everything you said...still would like to lose 10, don't eat in the a.m., only drink coffee, like to have an early lunch when my 4 year old eats ;-).  I am up to 200 mgs. where I will stay. 100 am and 100 pm. I feel really good...an occassional tingle and grasping for the right word feeling but that's it. I have only had one pretty bad migraine since I started back on topa in Sept. I'll take that compared to 2x per week anyday!! I have ditched the diet coke (I actually liked coke zero) and switched to water. I still drink beer even though it doesn't taste as good. Margaritas are fabulous but make me puffy! Vodka makes me a little crazed...can't drink it.
What dose are you on?

[tiegs]

derby - hi, been following your posts for a while now. several months ago i believe you posted you didn't quit the soda because you didn't want to even though it tasted funky.
i am hooked big time on Diet coke (a few 2 litre bottles/day). I am only on 75 mg Topa and finding my dosage - not sure where that will be yet. Now I see you HAVE quit your Coke Zero. Did you quit due to taste or what?
I really REALLY want it to taste nasty so I can quit - I have tried cold turkey and cutting down but nothing seems to help. I quit a 2 pack a day cig habit 2 yrs ago cold turkey, you'd think i'd be able to give up soda but it is way harder for me.
any thoughts on when you quit the soda (about how much topa you were on when you quit and why you quit)
Thanks
Jay

[mchipalla]

I'm also on 100 mg bid.  But for seizures.  I haven't had a diet coke since about the third day of topamax.  Same with beer.  Anything with carbonation tastes so different than it used to and beer has a sweet taste that I never noticed before.  I'm glad to hear that you don't have the migraines anymore.  I used to suffer from migraines long ago, before the seizures started and actually in some weird way they are both related to these cavernous angiomas that are located in the left frontal lobe of my brain.  The migraines have been gone for years but I developed epilepsy last year (at age 37--how insane is that?)  I've not lost anymore weight, but am feeling pretty good and not having any huge gain either.  That's good, I guess, especially with all the temptation with all the holiday goodies everywhere.  Keep drinking the water and if you think of any other tips let me know. I guess another big one I live by is not eating after dinner.

[derbytime]

I don't think it was me with the diet coke addiction...I always liked it but could usually take it or leave it. Read back through...it may be someone else you're thinking of. I have found that I am more thirsty on this med and really need something that quenches like iced tea or water. In the beginning, it was hard to really quench my thirst no matter how much water I drank; now, that is better too. My body is adjusting. I am getting an occassional bad headache...not really a migraine but bad headache. I'll tell my Dr. when I go back next month and see what she says.
How are you all doing out there?

[JNJesquire]

I am just curious.  Has anyone received any feedback that their cholesterol has gone dramatically up while on Topamax.  Mine has, although, admitedly, it may have been from other reasons/medications that pre-dated the Topamax.  Thanks.  JNJesquire

[mchipalla]

Mine continues to be fine.  No problems.  Still have very low blood pressure too.

[derbytime]

What dose are you on and how long have you been on it? Do you have any lasting side effects besides the bad tastes? I haven't read all the way back in a while. How do you feel now? Are you on for migraines or seizures?

[mchipalla]

Looke back to my 12-4 post.  I've been on this since July but was weening off the tegratol at the same time.  I feel good for the most part.  I get down sometimes just knowing that I will have to be on medication for the rest of my life--that really stinks but I guess it's also not the worst thing in the world.  At first the medication was terrible, but Tegratol was much worse.  My hair was falling out in huge masses and I gained 10 pounds in about 2 weeks.  I couldn't keep my head up for I was falling asleep all the time and had zero energy.  Topamax, I was just a complete dumbass for about 6 weeks, tingly in my hands, feet and lips, word recall was bad and couldn't remember how to spell anything.  If you hang in there long enough it's okay.  I had a few seizures while I was getting off the tegratol but that was my own fault b/c I was supposed to get up to the full script of topamax and then decrease the tegratol but I was so miserable that while I was increasing the topamax I was decreasing the tegretol.  It all worked in the end though and I was the only one who knew the difference.  I lost the weight almost as soon as I was off the tegratol.  about 15 pounds in all (5 more than I anticipated)

[luxy594]

hi guys.. this is my first day on topamax. im starting off on 25mg, soft drinks taste awful, im just curious...how much weight do most people lose in the first month? this is also my first day on vyvanse for add so i have no appetite at all but im not complaining!

[JNJesquire]

     The answer to your dosage question is 200 m.g.s.  for the past 7 months.  However, as previously planned, I am reducing that dosage immediately to 150 m.g.s and then down to 100 m.g.s in about 2 weeks.  
     By way of some background:  I was taking it for weight reduction, said weight gain having occured when I was involved in a second automobile occurence on 4/27/04 taking my previous PTSD from simple to complex and I had to go on Effexor --- as in known for its weight gain side-effects.  The first time I was hit by a Ford F-150 was as a pedestrian, while lawfully crossing the street, on 1/14/03.  As of the first accident I had only sustained "simple" PTSD and Traumatic Brain Injury and was not on any synthetic medication.
     I planned to taper off the Topamax anyway, because I need to try and start working again and that will require as many cognitive resources as I can muster and, Topamax certainly has not been particularly helpful with my intellectual acuity.
     For whatever it is worth, my research revealed one study at "rxlist.com" which indicated that hyperlipemia is an infrequent, but, nevertheless, noted, side effect of Topamax.  
     I thought it would be helpful to throw the question out to see if there is any anectdotal evidence out there about increased cholesterol.  
     Thank you, everyone, for your time and attention.
                                                                                                               JNJ

By the way, for those who are in/on this for the weight loss --- and because of the potential side-effects I seriously recommend very careful medical supervision --- I have lost 16 pounds over the past seven months --- so it can work.  For some reason, though, the loss tapered off/virtually plateaued in September, which is why I am discontinuing it.  Hope that helps.  But please, please, please be careful with this stuff, it can have very potent side effects, incuding, but not limited to depression.

    

[derbytime]

For what it's worth, I have heard from several people who happen to be taking Topamax for migraines (but like the added weight loss effect) it is absolutely temporary. I took the drug years ago and lost over 20 pounds...it came right back on. This time I've lost 10 and already plateaued. I take 200 mgs. per day for migraines. This is not a drug to be taken soley for weight loss...very foolish

[LindaItaly]

My name is Linda and I came to this webpage because I am considering going back on Topamax for weight loss, but I have wondered about others taking it. I was all the way up to 100 mg and that seemed to work for me, in conjunction with Effexor, which is how I gained the weight. All I can think about is Anna Nicole Smith abusing them for weight loss, and it has stayed on my mind ever since then and scared me a little. Please know that I realize abuse of any drug is the choice you make, but I wondered about what other people take on Topamax as a regime, and so far this site has been very helpful. I hear all of your concerns and victories . . . a lot to think about.

So, THANK YOU! to all of you for your thoughts and information . . . it has been very helpful.