Topamax side effects

[fearfactor]

I am supposed to start taking Topamax for migraines.  I hear the side effects are bad.  The one I'm worried about most is the possible problems with electrolyte disturbances.  Is anyone on Topamax?  Have you experienced the electrolyte disturbance or any other problems?

[Blueowl14]

I've had migraines nearly all my life. I'm a 52 yr old female. We thought it was due to PMS, so we started playing with serotonin levels and depression. That didn't work, but I kept using or trying different types of migraine medication. Right now I use 100 mg imitrex (sumatriptan) I finally stopped using meds for anything with exception of the migraine itself and went to a more holistic view. My headaches like to start in the early a.m. one doc said try for aga try 200mg COQ10. That began to help, but it didn't take them away. Recently I picked up and moved my life from Denver to Maryland, outside of Baltimore. Which brought about a whole new show of things, allergys, bringing the sinus headaches going into migraines back in full force. I'm getting them 4-6 times a month. Some of it can probably be attributed to depression and then allergies. I found a primary doc, who says, let's try Topamax. I'm extremely susceptible to things. I started the week off with a migraine, had my apt on Wednesday, started 25mg on wed night, Thursday morning, the migraine was worse. hot shower, tylenol, eat, get to work. cold pack, hot pack. work, do what I can go home. eat. ice pac, migraine med - imitrex. ice pack bed. Friday morning - worse yet again - rinse repeat....show of humor. tried to have a decent mothers day at moms's. didn't happen. By Monday I was to begin taking 25mg twice daily. Took the one in the morning and then emailed the doc and said I couldn't do it, I can't work in constant pain. I took a migraine pill at about 9am, no change. She said stop for 3 days and see what happens. So I spent the rest of the day on my couch with my ice pack and dozing in and out and small meals all day long.  I don't know whether migraines does this to anyone else, but I have to eat every 2 hours, other wise the headache doubles it's intensity. A full meal, not a snack. The other thing that I had to contend with was my intestines were locked up so much my whole body hurt. I could pee, but nothing else. I ate fruit, I had a laxative pill. nothing was moving. Around 5pm Monday, the headache started going away.  Went to bed, up and down with a sore body, because of my intestines and besides that only my allergies seemed to be an issue. Tuesday morning, passing gas and things are moving a little bit. Still no headache and just the pressure on the face from allergies.

I'll be telling the doc, No more on the Topamax. You couldn't pay me to take it again.

[allensgirl]

Exercise has nothing to do with weight loss. www.intensivedietarymanagement.com

[Kentuckybluegraa]

Yes this is well put.  I lost the one I love.  My husband left me after 33 years of marriage.  We are both on Topamax.  We both changed.  I cannot explain it.  We argued more because our short term memory became horrible.  Our patience with each other was short.  The need to keep talking over each other became a must.  The quality of our conversations was no more.  It makes me so sad what has happened. We both changed drastically in the course of  3 years on this drug and did not see it until it was too late.   I love him so much. I am now trying to wean off of this drug with the hope of regaining part of what was lost.

[Annmcarr]

I recently was put on topamax as an appetite surpressant to help me lose weight . I have been eating healthier foods lately but my doctor thought this might help me a little because I have type 2 diabetes .  I had asked the doctor who put me on this if it caused any stomach issues and I was told no. It has been day 5 for me and I feel like crap . I take 25 mg before dinner and late at night while in bed when I go to roll over from one side to my other I start to feel dizzy and my heart starts beating rapidly , when I get up to use the bathroom in the middle of the night I am so disoriented that I feel like I am going to throw up ,luckily I don't but just feel that way. The next morning when I wake up I feel like I have a hang over and want to sleep all day .  anyone else experience this on this medication.?

[SundayFunday76]

I've been taking Topamax for about 15 years, for two reasons. The first as a migraine prevention medication and the second for seizure disorder. I wanted to give you my opinion because I love this medication and it only took about a month and a half before the side effects to go away & I would tell anybody that I believe in this medication fully. They never found out why I was having seizures, until possibly later in life and even now they don't know if what's wrong with me now I made the seizures happens I have a cyst in my brain which could have caused these seizures, However I'm afraid I won't ever really know due to the technology changing over the years and a cyst was found a quite a few years later via MRI. I had seizures many years ago, but no matter I had about four to seven seizures over course of 2 years, the Topomax  controls seizures care as I have had none since I started taking Topamax  I take 200 milligrams of Topamax 3 times a day and that's Actually a very high dosage. But it is also helping prevent migraines and I would normally get five to seven migraines per week. Now my side effects including loss of appetite and it actually was really nice forgetting to eat wasn't that I was hungry I just forgot to eat so I had to remind myself family members would remind me at cetera. I did lose weight because of it. Also the first couple weeks tingling of the scalp and it wasn't horrible but at the time I lived in Michigan so when it was cold outside the tingling on the scalp was worse but it wasn't so bad it was unbearable it was just strange feelings and sometimes the tips of my fingers and that was when I was called out. The third thing I really noticed was I call it pop but soda like Coca Cola I couldn't drink it anymore it tasted like I don't know how to explain it maybe well it just bad. I want to say it tastes like iron or some kind of a chemical any type of a dark soda anything carbonated tasted strange. Now this many years later I can sometimes drink it but I don't drink soda or pop as I call it anyways these days so that doesn't bother me. Lastly I want to say that a short term memory. Something for the first a little wild is hard I had to have a certain place to always keep my keys which I already did so losing my keys wasn't something that really bother me but I know that that is a key side effect and I was warned but I have to take the actual brand topamax I cannot take the generic and my neurologist when the generic came out told me she did not want me to try it the trials I guess showed a lot of patience even though the similarities between generic and brand we're so similar there were a lot of strange things that happened within the patient's I get big rash of rashes on my arms of the tingling itching well everything so I have to take the brand of Topamax and I would suggest talking to the doctor about this, I kind of read about it and it's not unusual for most patients to have to take the brand name of Topamax. Not since I've been on it for so long I needed to let you know these issues I felt it was my duty to tell you that these were the real big issues as far as side effects but the drug itself is amazing and if you're taking it for migraine prevention it works if you're taking it for seizure disorder it is one of the best on the market and I promise you will be happy you just have to give it a couple months. I have had a couple of friends over the years have to take the medication also for migraine prevention and/or a seizure disorder themselves and most of the side effects I've mentioned have been the same for them. Maybe not all of them but quite a few of them and they also had to take the brand name. Please if u have questions ask!! No my doctor wanted to put me on another medication for the short term memory loss but let me tell you that I said no I didn't want to correct my a side effect problem with another medication. And my body got used to it and within 6 months there wasn't a problem so don't feel like you need to do that because of something they may ask you ok please feel like you can ask me anything and I will do what I can the best I can to answer any other questions

[Ardnach0703]

t  have been on Topomax for 7-8 years now gradually increasing fm 50mg to 250 a day.  Yes I lost some weight, but at the time I could afford to. I have complex migraines since my 20s (I'm 46) but was never diagnosed w/ epilepsy. I thought Tompomax was the answer-the headaches didnt go away completely but definitely were less frequent and less intense.  I can really relate to what you are describing with low blood sugar feeling. I too would try to compensate w/ food or drink.-to the point that I now need to watch my sugar levels bc I'm now pre-diabetic. My vision has also changed and I was given an ablation to stop the heavy periods.  I also suffer from frequent UTIs.  All this I'm now reading could be a side effect from what I once though was a miracle drug.  After being hospitalized, I switched neurologists who began lowering my dosage gradually.  I feel better but have  suffered many of the side effects like stuttering, memory loss and the headaches are back, but so tar are tolerable. I've tried so many other meds I'm not sure what the other options are.   So  how long does it take to get completely out of your system and does your memory ever come back?

[LeffureLeflure]

My most adverse side effect was this and it's a BIG ONE!!
I get pneumonia nearly every year, I received the pneumonia shots every other year .. however this medication topomax if you have issues/susceptible with bronchitis or colds in general you will fight them CONSTANTLY!!  
I love everything about this med when gradually increased is the key..
But for me my immune system is at Zero and I get gravely ill .. FYI
Hope this helps someone fighting colds, sever colds, bronchitis or pneumonia.

[Jolenebeth]

Be very careful with Topomax if you have experience vision changes.  After one week on Topomax for migraines, I suffered a glaucoma attack with eye pressure of 52 in left eye and 45 in right eye.  I have permanent loss of sight in large portions of my peripheral vision. If not for a very proactive ophthalmologist, I would be blind.  I know that Topomax helps some, but its side effects gave me the greatest scare in my life. ANY blurriness is cause for concern.  Get your eye pressure checked after a few days when you start the medication.  I've been there...Don't wish it on anyone.

[brick424]

well for me personally, I will take it again. I had a very bad experience on it and would never have thought a doctor prescribed drug could do that to me or any one else.
I was to start it in 25mg portions meaning every week I went up 25 until reaching 100mg and at the same time I was decreasing my old med. when I got 50mg into it I was off the charts tripping. I couldn't remember words and could talk in whole sentences. I studdered and felt like a rere. I was given this by my head dr. and he couldn't see me when well during these events so I went to my regular one and he knew exactly what it was when I mentioned the big trem.

needless to say I quit and all is well once again. just my normal crazy is enough for me.

[criss55]

I started Topamax 1 week ago and in the 2nd week of increase had extremely bad reaction to med. Memory loss, physical shakes, and emotional breakdown, and with all of this I could remember all of this but couldn't do anything about. With this occurring, only thing I could do was go back to bed and sleep for 10 hours, and I had slept for 9 hours the night before.

[Krissygirl333]

I've been in Topamax for Chronic Migraines . I get 12-15 a month. It doesn't help with frequency , but does help me with intensity .
Mine was just increased to 300 mg. I've been on it about 7 or 8 yrs.
take as directed. Drink plenty of water, because that is what you are directed to do, and try it. I have no problems to complain about.
Sometimes, ppl read things and you think you have a problem bigger than what it is.

[coletrain57]

My neurologist put me on Topamax two weeks ago for back pain and because I've gained so much weight because I haven't been able to exercise due to the back issue.  After two weeks at 25mg, I am still very fatigued and dizzy, my vision seems to be getting worse, and I have GAINED 6 pounds, not to mention the fact that I haven't experienced any pain relief.  Has anyone else gained weight on this?  It just doesn't seem worth all the side effects.

[cat_85]

I am on 100mg of topamam twice daily for migraines, this is now my four full week on this dose..trust me the side effects don't go away. My doctor has told me that it could take up to 6 MONTHS for this dose to take effect on my migraines as this is the highest dose lisenced in UK for migraine use.. Hands tingling, taste disturbance, haven't worked in months due to the pain i am in.. My appetite is completely gone, I am lucky if I can stomach one thing to eat per day at the minute and that is no joke plus with the sickness of the migraine on top of the appetite loss, I dunno how much longer I can cope on this medication. My mood changes are awful and it is mostly due to this medication as I am not eating or feeling any better after so long taking it..I also have the sensation in my face when I rub my finger along it that it's still there..my sleep pattern is disturbed and memory has disappeared. I hope others have better experiences than us !!!!

[tayz_j]

Hi there, i'm in a really similar situation to you. I am scared to up the dose from 25mg twice a day though. i'm taking the meds for severe headaches, not migraines. I have a cerebral AVM... i have had severe weight loss and have hardly any appetite, and am really tired, i'm only 29 as well and have a full time job. so it is a struggle but i'm trying. I haven't been able to find if the side effects eventually where off? i'm more than happy to ride out the pain of side effects if it will benefit my headaches in the long term... Do you know at all?

[muffn43]

I am on my second week. I started at 25mg at night  now at 25mg twice a day for migraines. I have suffered for years 2 weeks out of the month with migraines.
So far my side effects are tingling, the first few days I was wound up, I wasn't sure I could stay on it because I have anxiety. Now I feel a bit groggy thru the day.  I'm not sure If I will want to increase dose, but I do still have slight headaches. Can't complain yet because my hubby says I am happier now. I almost feel like it is helping with depression too. I would like to lose weight but won't chance messing with the dosing just for that. I will increase to 75mg a day and if the headaches totally go away I will stop there. Knowing this drug could be dangerous it scares me but I will do just about anything to get rid of the migraines. This might be my miracle pill :)

[achilles2]

My "brilliant" neurologist also prescribed topomax. If he had read my chart he would not have since I cannot have dairy and lactose monohydrate is an inactive ingredient.The capsules have sodium laural(th) sulfate-- also another ingredient I cannot have. I had other issues with him prescribing meds and not looking at my chart. I am thankful that I looked the meds up ahead of time on rxlist.com so I did not have to experience any allergic reactions. Now he is no longer my doctor.

[selmaS]

  Not all on the med r on it for weight loss, I am not...if I did lose that would have been an added benefit, but it is not the case.

I had brain surgery and am on it to regulate my HA's post op.....

I agree, meds to lose weight is not the right way to go, we have to modify our lifestyle and diet on order to do that.

Hoping u r doing better now : )

[Jenaly]

I've been on Topamax for 6 years now since my old neurologists put me on it and I was taking 1800 mg everyday for weight lost. trust me it's not worth it.
I've had so many different side effects. I'v e been in and out of ER.  I've even had to have surgery because of being on it twice. and I'm only 26.
I was sent there for migraine headaches and instead got put on a medication that almost killed me. There are a lot healthier ways of losing weight. and I wouldn't recommend this one.

[selmaS]

  Hi...I am too am on TOPAMAX, and when I first started on it I had side effects...mine were more I was extremely fatigued, and loopy feeling....I was on it for 2 weeks and felt like this, and I thought my Dr would take me off it as a result of how I felt as I also got new HA's I did not have b4 taking it.

My Dr said that was what he wanted???

It changes the pain....and the side effects r temp, to continue, and he was right about the side effects, they went away....

And I also found out just how this med was working for me when I ran out, I was in more pain then I thought it was helping,...so now I know it is helping me.

U do have to look at ur individual side effects and see how ur Dr want to proceed but side effects r normal the first 2 to 3 weeks as u adjust to the meds.

Good luck

[cade13]

I just started taking topamax, i have only taken it for 3 nights so far at 25mgs, and i have had several of the side effects.  Today i finally called my doctor and was told to stop taking it untill she can call me back and we can discuss it more indepth.  Yesterday i had a terrible anxiety attack an my entire face went numb, today my fingers are numb and tingly.  My stomache hurts and i don't feel like i could eat anything all day.  My heart feels like it is racing.  I have been so groggy the last two mornings to the point of barely being able to function.  I was put on this medication for my terrible migraines and i would like to think it could help but right now just typing this the feeling in my fingers and hands has gone even more and my hands hurt alot.  I know it has only been three days and thank god atleast i have not had any of the really severe side effects such as vision problems and memory loss but i dont know if i would want to stay on this medication any longer and take the chance of getting there.

[boverbee]

I just started on topamax today is day 2... 25mg twice a day for a week then 50 mg twice a day for my headaches. I have felt like I'm in such a fog! I go to the gym 6 days a week and run 4 miles a day and do weights since I have been on this I can't even walk a mile! all I wanna do is sleep and that's no joke I feel like I could sleep 20 hours a day! I have lost 2 pounds. Does anyone know how long it takes my body to adjust to the meds??

[momoftwo1963]

Hi.  I new here but not to migraines or topamax and have developed a problem.  I have been taking T for about 4 years for severe migraines and sometimes cluster headaches/migraines.  I have been fortunate in that I only take 25 mg daily to control my migraines and only had the usual begining side effects, i.e. tingling in the extremeties and fogginess with short term memory problems.  All went away except the short term memory problems, but I adjusted.  T was a great reliever of my headaches, with only an occassional breakthrough for which I have imitrex or maxalt.  
Recently I started a weight loss plan that recommended taking T to supress appetite.  I told the Dr. that I was already on T and didn't want to increase.  After about 3 months I had almost reached my goal but plateaud and decided to increase my T dose.  Big mistake!  I have been a wreck.  At first it was only about 3 a.m.  I would wake up and feel like my blood sugar was low, so I would go have a couple bites of a banana or a 1/2 of a nutrition bar.  After a few days, I realized the jittery, low blood sugar feeling wasn't going away at all during the day and I was VERY anxioius.  I still didn't connect the T with the feeling of jitteriness since I hadn't had that problem before.  Finally I couldn't stand it and started trolling the internet and discovered that it could be a side effect of the T.  I immediately stopped taking it, which is disppointing in regards to the headaches.  I haven't had one yet.  ~~My biggest problem is that the jitteriness is still there after 5 days!  Will this go away???  Please someone, tell me it will.  I can't stand this feeling!  I go to bed everynight at 11:30, take 1/2 an ambien (which is usually enough for me)  and am wide awake at 3 a.m.  I have also had muscle spasms at night.  I can't take a nap during the day, it feels like there is ice in my veins and my stomach does flip flops when I lie down.  ~~~~Any advice??  I really just want to know that this feeling will go away.  Thanks everyone and good luck!
P.S.  I think everyone should be aware of METABOLIC ACIDOCIS (not what I have).  I came across it in my research on side effects of Topamax.  It can cause permanent damage.

[KiKi0086]

I have been on Topamax for just over a year, 100mg BD (twice daily) and just a month ago I started to get sever muscle spasms and heart palpitations. Combined with the paresthisia (pins and needles) all over my body and the severe fatigue and memory problems it has made this medication unbareable for me. I take it as an anti-convulsive for epilepsy but I cannot bear the side effects. I am down to 25mg OD (once day) and the spasms still have not gone and in fact have spread to my face. I will be weened off completely in week and a half and am praying that the side effects will go and I can feel normal again. For those out there who are considering taking this as a weight loss aid, PLEASE DONT. I have read so many posts from people who are already using it for weight loss reasons at a dose of 200mg OD. Side effects can take up to a year (possibly more, I'm only speaking from my experience) to reach a scary level and can seriously out weigh any benefits. This medication has been a nightmare for me.

[ausmcmom]

I have been on topomax for about 7 yrs. I had migraines for 10 yrs. so bad my neurologists had tried everything else with me but this was the only thing that worked. I take 300 mg. a day. I tried a smaller dose but nothing lower worked for me.I was hit on the side of the head with a baseball causing a concusion making my migraines even worse about 7 yrs. ago. That happened twice in 2 wks. time. The migraines went to 2 to 3 a week. Thats when I started the topomax. I went through all the side effects at the beginning including my face feeling like it was tingling. That scared me the most but that went away shortly. I do have some short term memory loss but I am disabled and don't work so I spend most of my time at home. I haven't had any trouble with kidney stones but I drink lots of water. My vision has changed quite a bit but I can't tell if it is this or other meds I am on. This medicine changed my life. My children had their mom back! Everyone is different and not all meds work for all people. If it does work and you can wait it out the side effects will get better. Even the weight loss part! Good luck to all of you.