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Topamax Support

Coping with the Side Effects of Topamax

10/5/08 12:19 am - tonyb_ishere - No stranger to side effects of Topamax


Folks, after having read a number of posts on this forum, I have come to realize that, 1) I am an antique in age as compared to all others listed here, but, 2) it also appears everyone taking this one medication seems to be experiencing similar symptoms and side effects.  This has compelled me to submit this entry.

I have been off work for a number of months with cluster migraines being one of the culprits.  My neurologist chose to change my medication regimen the first of August to discontinue all prescriptions targeting migraine control and start only Topamax.  The first week was to start at 25mg and continue to titrate at 25mg dosages until I reached 100mg and maintain such dosage through a 3-month trial period and return for re-evaluation in December.

It was not until after having been prescribed this medication that I started my research on the internet .... and as well, experiencing some extremely wild and bizarre side effects.  I must say that I had some of the most horrific dreams I have ever experienced in my lifetime.  Two times awaking from the most vivid dreams of having a stroke that the veins in my neck were protruding, I was sweating profusely, extremely nauseated and completely out of breath.  To say I was frightened would be putting it lightly.

The side effects that many of you have shared of tingling extremities, forgetfulness, fatigue and restlessness are all symptoms I have experienced too.  Uncontrolled nausea was absolutely unbearable for well over the first month.  It is still an everyday issue but not near as severe as when I first started the medication.  Carbonated drinks taste flat, many foods taste different, and as one person mentioned, in most instances, I now prefer room temperature or cool bottled water as opposed to iced tea which I was never without prior to taking this medication.

I have realize that this medication causes mood swings and extreme depression.  At times, however, I find myself unable to combat the power of the depressive moods it seems to create.  So be prepared for that.  On the flip-side, high-stress issues will cause anxiety almost immediately.  I did go to the local health food store and purchase a product named "Valerian", also called "Valerian Root", that can be used for anxiety, but can be used as well as a sleep aide.  So, with Topamax,  you're bombarded on both fronts with either depression or anxiety mood swings.

As of this date I have been taking this medication for approximately two months total.  I can honestly say that headaches, moreover migraines, have been reduced.  So in that regard, the medication has done its job.  However, with the side effects that I've mentioned and those that many of you have recalled, I am not willing to go through the rest of my life dealing with the plethora of these issues just to ward away a headache. 

I have chosen to wean myself from this medication by 25mg increments per week until I am completely Topamax free. At such time, or even before, I will deal with headaches and migraines as I did before and will, if I must, seek another physician who will assist me with a different medication regimen for the future.

I have no idea if this entry has or will help anyone, but I do appreciate those who were willing to share their time as it certainly helped me.  As a new member of this forum I plan to monitor it regularly and if in anyway I can help anyone, please let me know.  Take care and God bless,


9/29/08 10:18 pm - vasedelalune - blurry vision

I've been on topamax for a month now, I started out on 25 mg, since last week, I've been on 50 mg. Since Saturday, whenever I wake up in the middle night my vision is blurred but only if the room is dark or dimly lit, my vision is fine when the room is brightly lit. Today, I called my psych about it and she told me the blurry vision is a common side effect and not to worry about it, so I was just wondering if anyone ever experienced any blurry vision? I'm still kind of worried about it....

9/24/08 10:19 am - ballytivnan - weaning off 100mgs after only a few weeks

I was upped to 100mg about 3 weeks ago after having been on 25 mg for a week, then 50 mgs for a week then 75 mgs for a week.  Soda tastes strange.  i have tingling in my feet especially my heels & my face.  I have a weird sinus infection-like thing going on.  no food tastes right.  I can't sleep.  Sex isn't enjoyable.  i'm forgetting words.  i'm listless & exhausted.  The long list of side effects & permanent damage is not worth keeping away a few migraines a month.  Any advice on weaning myself off?  I would rather keep my brain function intact!

10/5/08 08:20 am - rna2007 - New to topamax..

Hey my name is Robin and I am 19 years old. I started taking topamax about a 20 days ago. I have high blood pressure which causes me to have servere migraines I started out taking 25 mg a day , and now  I am only taking 50mg a day. But I have noticed quite a few sideffects.

-tingling in bottom of both of my feet
-all soda's taste flat
-cheese(which i love) is now nasty
-a weird taste in my mouth that I can't put a name too
-i sometimes feel very distant..almost a drunk feeling..
-I am very forgetful
-and tend to get very moody..one minute I am happy go lucky and the next I am a total monster..

I know that one of the side affects of topamax is missed period. But in the 20 days that I have been on topamax, 17 out of those 20 days, I have had my period.  Serverely, and it isn't showing any signs of going away. Is this a normal side affect or is there something I should be concerend about?
...are any of these normal..I have read about some of them, but they all seem kinda weird to me.

-thanks much Robn

1/27/08 04:26 pm - laurab12

Im 21, Im having brain surgery in 3 weeks. Its a long story full of the most painful headaches ive ever encountered. My life has been a roller coaster ever since i was diagnosed with a chiari brain malformation 8 months ago. Its a condition where your cerebellum is enlarged. Sometimes my pain gets so bad i want to scream, but mostly i just cry. I am on lots of medications including 50mg of twice a day topmax. My doctor wanted me to increase my dose but when i tried my face felt like pins and needles, it was very frustrating because topamax has helped me a lot. In the past 8 months my long term memory has been bad. I try to ask some one a question and i wont be able to remember what i was going to ask. Ill sit for 2 or 3 mins before i can remember. Ill sit with my boyfriend talking and be stumped on an easy word i wont be able to remember . I get fumbled and jumbled so easily. A lot of the memory loss has to do with the chiari and pain, but some may be with the topamax. I have also have small seizures while i sleep.im aware of them happening but they start in my head with a hard shake and travel down to my limbs shaking uncontrollably. im not sure what i can even do about them except hope the surgery works.going into surgery for me is like bungee jumping,something i would never do, i just have to let go and trust everything will work out. trusting is hard when your scared. Ive learned a lot from this journey.for anyone who is sick and in pain, be as strong as you can even when your weak. when you are scared know that you are loved and trust that every thing will work out.:)

1/23/08 04:16 pm - imjustvalerie - Is anyone here?

Hi.  I'm Valerie.  

I'm 28.  I was diagnosed with epilepsy about 2 years ago in addition to migraines.  I was originally diagnosed with complex partial seizures, and put on Topamax which helped to stop them but had serious side effects including short memory impairment.  

In February of last year I lost my medical insurance and went off of the Topamax.  Over the last year I have continued to have the complex partial seizures and migraines and have also had at least four episodes of fainting where I believe to have had a more complex seizure (but I was by myself every time so I'm not sure).

My  main issue now is that I am experience long term memory loss.  I have noticed within the past 3-4 months that there are periods of time from the past 2 years that I cannot remember.  I didn't realize that this was a problem until my family would be talking about things we all did together and I didn't remember being there, or until I was looking through family photographs and didn't remember events from pictures I was in.  I also forget directions to places I have been dozens of times since I was a teenager.  I also forget words, sentence structure, and things like that.  

I just got medical insurance again, so I'm scheduled for an MRI this Saturday and I'm very scared.

My neurologist has doubled my Topamax so the short term memory issues are sure to increase again as well.

Does anyone else have memory issues like this? 

11/9/07 08:03 am - sillyd - Topamax and Doxepin

Hi all!!

I just went to the neuro. yesterday who lowered me back down to 25mg of Topamax but added 10mg of Doxepin. I was reading on the website one of the side effects is massive weight gain. Does anyone know anything about this? I finally lost all of the Paxil weight when I started with the Topamax and I really do not want that to come back.
One reason is because oh I am getting married in a year.

I am really freaking out here. Anyone know anything??

Also he gave me Frova? As anyone tried that? Is it any good?



10/25/07 10:46 pm - cherrybomb319 - Side Effects

Hey Everyone!

I'm new to this community, but I'm pretty excited it's on here.

I've had epilepsy (tonic-clonic) for 5 years now, and I started out on Lamictal but had way too many break through seizures and was put on Keppra last year. Keppra caused a deep threw me into a deeper depression than I was already in, and I was still having too many break through seizures. I gained a ton of weight on these meds (about 40 lbs).

My neurologist finally put me on Topomax after my last seizure in May...I was pretty excited. So far I've lost about 20 lbs, and my depression is long gone (for the first time in years!). But, I still get the pins and needles feeling. I've tried eating foods with lots of potassium, taking supplements, and just plain ignoring it...but it won't go away. I must admit that it does get pretty annoying at times, and my friends don't understand why I get randomly jumpy. Oh well, I guess I'll have to live with it.  Overall, I'm very happy with Topomax.

Oh, and before I go: one side effect I have had with all my seizure meds is memory loss.  It's annoying, but after 5 years I am totally used to it by now.  Yuck.

10/25/07 08:25 pm - ann_hurts - No tapper

Hi.  I'm new here, not new to head pain though...I  stumbled  across this journal during my search for some help to answer my questions....
I'm wondering if anyone knows what would happen if I suddenly stopped taking my regular dosage (400mg a day).  I'm being treated for migraines/ chronic headache.  I order Topamax from Canada (it's cheaper) and I ran out sooner than I thought...I'm waiting now for it to arrive in the mail.  I know that I can call my nuero to get me by until then, but I'm sick of still hurting.  Anyhow, that has nothing to do with my question.....

I am not being treated for seizures....stopping Topamax without a tapper will not cause a seizure in a person that does not have them right????  At worst I'll just get sick.  Right???  Does anyone know???  I didn't find much help on their web site.  I do not want to consult my doctor at this point because I am already aware that what I am doing is not smart.

Thank you in advance....Ann

8/15/07 06:56 pm - tmaxbraindamage - My short term memory is shot from Topamax

I was put on Topamax about 2 years ago for epilepsy. My doctor was a serious advocate of the drog, samples in office, posters. I wanted to go on Keppra but she was very serioius about her topamax. she said i'd lose weight and that she would give me samples and iw ouldn't have to pay copay. I had options back then, how I would miss that. I made a huge mistake NOT looking more into the drug instead of simply trusting her. Almost immediately I noticed the cognitive side effects and looked up topamax on the internet and saw that this was a normal side effect. I asked my neuro and she acted like this was very rare and said any side effects would go away. The dumbing down continued and the timing couldn't have been worse. I was working at a company gonig through a reorg, my boss was leaving. New blood and I didnn't make positive impact in spite of the fact that I had consulted there for 5 years managing a database. I was let go. I would go to job interviews and space out. I was really dumbing down now. I had no options as I had no insurance. I talked to my doctor about getting me another anti convulsant and putting me on another patient assistance. She was non cooperative. I ended up going from a high-level consulting position, barely temping, walking around in a head fog. my friends notived, family. I also had terrible eye pain. I begged my neuro. she eventually put me on exelon which is what they give people w/ alzheimer's. I finally ended up moving to florida because it was so hard to get help in a city of 3,000,000 (Los Angeles) and I have family there. I am now weaning off the topamax and it will take 2 months. I have ringnign in my ears and joint pain. My brain has debilitated to the point where I cannot remember anything. I used to act in theatre and i cannot memorize a paragraph or remember people's names. I have reached out to other's online and found them. People who had to drop out of school, lost their jobs, ended up in mental hospitals or blind. Some people have never fully recovered. I am afraid that i will be one of them. I was ona realitvely high dosage for about 2 years. I can't remember exactly when i was pu ton it but it was 2005. I cannot find any information about "long term damage" on topamax but i've read things here and there online that were disturbing.

I have weaned 50 mg off the dose i was on (25 every 5 days). Anybody else going through weaning process. What are symptoms?
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