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Topamax side effects

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?
42 Responses
Avatar universal
I have been taking topamax for 6 years for miagraines and seizures.I went up on the topamax slowly ( I take 100mg but I started out at 25mg). I will tell you that I was groggy so make sure you take it at night. I also had some problems with concentrating and that lasted about a month. I will say that not having the migraines was wonderful so ifyou can hang for a month you will feel better. The really great thing about topamax is that over 4-6 months of being on the med I lost about 50 lbs.
Overall topamax has been great for me once I got over the side effects.  
Good Luck and Let me know how you are doing.
Christy  
Avatar universal
i'm glad you posted this. hopefully someone will answer. i am going to probably start taking topamax this week after i see my headache specialist but i also get pvcs and worry about how that will affect them if it does cause mineral imbalances. i know the big side effects are kidney stones and vision problems. if i lose more than ten pounds i'll disappear. i'm a little worried about the weight loss side effect. please update me to let me know how it is going for you!
Avatar universal
Being on topamax for 6 years, I have not had any problems with kidney stones. Now that you mention the vision problems, i did experince the vision problems but that was due to increasing to fast.
Good luck and let me know how things turn out.
Avatar universal
The doctor on the forum mentioned in another post that Topamax can cause electrolyte imbalances, especially low calcium. Can these be counteracted by taking supplements?
Avatar universal
I took Topamax for a few months for nueropathy caused by chemo. The reason I felt I lost weight was the food just didn't taste that good while I was taking Topamax. It really cut my appetite. It helped my pain for a while then the pain returned double. TG
Avatar universal
My wife (37yrs old) has been on Topamax for a month because of a seizure (First seizure ever was one month ago) Her dosage was increased to 200mg a day.  She has all the side effects listed.   My question for anyone on this drug is #1 Do the side effects ever go away (Level Off ) or will she remain tired and sluggish all the time. #2 Is your memory always effected?  Having two small kids makes this a very hard time.  Your input would help Thanks
Avatar universal
My wife (37yrs old) has been on Topamax for a month because of a seizure (First seizure ever was one month ago) Her dosage was increased to 200mg a day.  She has all the side effects listed.   My question for anyone on this drug is #1 Do the side effects ever go away (Level Off ) or will she remain tired and sluggish all the time. #2 Is your memory always effected?  Having two small kids makes this a very hard time.  Your input would help Thanks
Avatar universal
I feel for your situation. I have been on and off Topamax 2x and I know what you are going thru. I mourned the loss of my memory. I recall my Neurologist telling me to begin carrying a pen and paper as a "compensatory strategy" and to begin taking B vitamins and folic acid.  I remember what I went thru to regain my self esteem and find my footing again as things changed around me and as I changed. I remember how very very hard it was. When things get tough, hang onto the ones you love, and know that you are more than the sum of your parts, ok? There are always different drugs than Topamax. Ask your Neurologist for Keppra; perhaps that will be better suited for you. If you take Keppra, take Calcium. Good luck and God bless!
Avatar universal
I have just stopped Topamax after becoming dysfunctional while on it.  I, too, have two small children and I had a very hard time keeping up with all I needed to do.  My husband took over the cooking and cleaning as I could hardly eat and I had no energy.  Beware, I only took Topamax for 12 weeks, but I lost 14% of my body weight while drinking 3 cans of Ensure a day, could hardly do my job, had cognitive problems, and became fatigued.  In the end, I was in respiratory distress from metabolic acidosis, my hair fell out, my period got ridiculously heavy, I got acne, my fingers turned blue, and I developed an irregular heartbeat.  I had a lot of side effects upfront that went away within six weeks so I thought it was all going just fine.  I was only taking 100mg/day.  My neuro kept telling me all of this was normal.  I asked about metabolic acidosis and he told me that was extremely rare.  He ran a regular metabolic panel every six weeks that came back normal.  My condition wasn't diagnosed until I was in the cardiac unit of hospital for testing and an arterial blood gas was drawn.  I felt 100% better within 24 hours of stopping Topamax.  However, after 1 week off the drug I am still having  heart problems, low blood pressure, and blue fingers.  I don't feel as mentally sharp as I used to.  I am easily fatigued and wondering if I have permanently damaged my kidneys.  I wouldn't recommend this drug to anyone now that I know what it does.  Read medlineplus.com before you decide to have your wife stay on this drug.  There is a lot more to it than the manufacturer is admitting.  I feel lucky to be alive and my kids are very glad to have their old mom mostly back.
422104 tn?1209763904
Went to a neuro for an MRI read ( possible MS)  I've never had migranes let alone headaches and he said "want to lose some weight?) gave me the Topamax.  I honestly cant remember the side effects as I was going thru alot at the time, but I stopped taking it rather quickly.  The nuero was giving it to me as a weight loss tool.   Dont use the drug or that doc anymore.  Best of luck to you.
Avatar universal
So are the neuros gaining anything from "selling" these drugs?  Seriously, I feel like I was sold something.
422104 tn?1209763904
Not sure why some doc's push certain meds.  I work for doctors and the drug reps come in 3 days a week and buy us lunches etc.  I could open up a pen store!   They leave samples that the doc's pass on to patients, they don't even like taking the time to talk to these drug reps but like taking the samples.  For people who can't afford their meds it's a great thing but when they start giving them out without knowing patient history etc I think it's highly irresponsible.  The neuro I saw spent all of 10 min with me, said I might have early MS, gave me the Topamax and left the room.   I'm sorry I can't remember the side effects, I just know I didnt tolerate it at all.
456562 tn?1206328746
Im epileptic I have been on every anticonvulsant med there is almost but when i went on topamax  my morning headaches mirgranes and sieuzeres went away. but if I was working i think I would be a trouble. i have memory loss and cant remember names well. this is the side effects for me. I feel sluggish too kinda. im multy disabled so topamax fits into my life style for me Im only on 175 a day. I wouldnt increase this med. I was on dilantin for 38 years it worked very well for me but the side effects were startting to harm me that is why I had to change anticonvulsants it wasnt easy after all those years.
I would say have good contact with your doctor and you will be okay. and read. I think Topamax can affect the side vision of those under the age of 50. I get my pressure check. Topamax has a print out you can hand to your optomotrist and they will check your eyes for you the warning signs of Topamax. I had this done at Walmart they were very helpful in the their optical department just take the print out with you from Topamax. Also Drink lots of water to prevent kidney stones they warn you. I dont like seizures or migranes.
Avatar universal
For migraines, I took only 25-75 mg of Topamax for several weeks and felt incredibly jittery and "amped up" towards the end.  I couldn't take it anymore and stopped the drug. I feel it had the odd effect of a stimulant on me.  And since I don't even like drinking coffee to do drug sensitivities, it was not a good fit.

What is concerning me now, is that over a month after stopping the drug, I get these odd adrenaline rushes out of nowhere. I've also had sleep problems, waking up at 3 a.m. totally awake and finding difficulty falling back asleep. Has anyone out there had a similar reaction after stopping Topamax?  Be very careful about taking this drug.  Had I really understood what a small dose could do, I would have never taken it.


Avatar universal
For migraines, I only took 25-100 for a week before I had to stop.  I became extremely anxious and jittery...to the point where I was having muscle spasms all over my body and became extremely paranoid (normally I am very outgoing).  Friends and family noticed a marked change in me.  I also had night terrors and trouble fallowing sleeping.  Did I mention facing numbing and weird taste sensations in my mouth?  I have nothing good to say about this drug and have been off of it for a week...still waiting for it to leave my system.  I still feel jittery, uneasy, and get muscle spasms but the anxiety has significantly reduced.  No migraine relief is worth the side-effects of this drug.  Be very careful before using.
Avatar universal
I was on 75mg for headache for 2+ years.  Weaned off a month or so ago..very slowly. It was difficult for me to get used to initially..sort of felt worse before feeling better.  Tapered off at the same rate I got on..25mg increments over a month period.  I did not notice a significant improvement in headaches while on Topamax..most noticeable help was stopping sugar substitutes and changing my hormone stuff to patch rather than oral.  THAT made a significant improvement both in decreasing the amount of headaches as well as the severity. Good luck and give yourself time to get used to the drug.  It may do wonders for you.
Avatar universal
I just started taking Topamax.  I'm into my 3rd week and I'm up tp 100mg a day.  I started at 105lbs and weigh 98lbs now.  I lost the first 7 lbs in 11 days and now sit at 98 lbs currently.  I feel jittery and wirey. I feel like I just drank 10 cups of coffee even though I don't drink caffeine. I feel like my heart is beating really fast.  I have intense joint pain, a UTI, stomach pain occasionally and cannot think clearly at times and find it difficult to focus.  I have also had vision problems... kind of like a feeling of possible highness... if I drag my hand across my face it will drag slowly and leave a slow drag as I move it across.  This is only since I have gone up to 100 mg recently... I actually went back to 75 mg because I don't think I can handle the higher dose yet.  I have had not one headache even in the past 3 weeks. Before I started this medicine I would wake up every morning with a headache that would turn to a migraine.  Do these side effects ware off?  Is it worth a few more weeks of this torture...? Any advice is much appreciated. Thanks!
Avatar universal
I have been on topamax for over a year now and it has been a lifesaver.  I have 2 young children and was getting up to 9 migraines a month.  I couldn't take it anymore.  My doctor put me on topamax and I got my life back.  The only side effect that I struggle with is the short term memory loss.  But like anything else, you adapt.  I've figured out ways to make sure things don't fall through the cracks. (well as few as possible anyway).  There were side effects in the beginning but they soon went away.  To be free of headaches...I would have done anything!  I am on 100mg a day, take 50mg in the morning and 50mg at night.  I couldn't say enough about this drug.  I am concerned about long term side effects but I am glad to read about those that have been on it for 6+ years and are doing okay so there's hope for me!  Best of luck to you all.
Avatar universal
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.
1709366 tn?1308063574
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.
Avatar universal
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.
1812044 tn?1316571238
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??
Avatar universal
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.
620923 tn?1452915648

  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
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