When I started , I was on a 25mg dose in the evening for the first week, and then this was increased by 25mg each week split between morning and evening until I was on 100mg a day.

I’d been warned of the ‘major’ side effects – glaucoma and kidney stones. However not the less severe ones, which are the ones which have actually given me problems. I’ve had problems with panic attacks in the past, and so when I was sitting in a tutorial and my hands, feet and face started tingling and going numb, I thought it was the onset of a panic attack and this induced one. I was mortified to say the least. I’m still having problems with tingling in my hands, feet and face but I’m getting used to it now so it isn’t so much of a problem.

I was also not warned that when it says that there may be some loss of appetite, I would not have any desire to eat at all. I’ve had problems with food for years, so being on medication which has completely removed my desire to eat is not a good thing. For the first month or two of being on the pills, I was eating about 500 calories a day maximum and even that was a struggle, because I felt sick every time I tried to eat.

The other issue I faced was that I got singles around the time I started on the pills. I became incredibly confused and forgetful – I found myself half way to university one day when I didn’t have any classes to go to, with an empty backpack on my back and no idea why I was outside. I went to lectures and tutorials at university during the time I had shingles (I didn’t realise I had it until a week or so after I got it, by which time I was apparently well enough to be in class anyway) and there is a 2 week or so time frame in which I have a really hazy memory. There are some classes I do not remember, and some classes I can remember going into the room, and then I remember nothing else. When I went to the doctor, I was really struggling to explain what was wrong, I could not find the words. I knew exactly what I wanted to say to her but it just would not come to mind. I thought I was going mad! I tried my best to explain that I couldn’t remember and she said I must just be anxious and offered me anti-depressants, but then ended up giving me nothing, saying I needed a holiday. It was a huge issue, and this led to me begging the university for an extension on my essay for the semester, which they didn’t give me. But from reading the comments here, I realise that since the problem hasn’t gone away entirely it could be the pills and not the shingles as I thought it had been.

Over the past few weeks, I’ve developed severe tinnitus, and I can’t get rid of it. My migraines have come back after being free from pain for over a month. The auras never disappeared, however I’d not had any days where I couldn’t get out of bed until the past few weeks. I’m debating whether to come off the pills if they are causing the confusion, memory problems and inability to speak properly, especially since I’m training to be a teacher and I’m going on my first placement in a few weeks. But on the other hand, not having migraines has meant that I’ve actually been able to attend classes for a whole week without having a migraine interrupting my studies for the first time in years! It’s meant that I’m not falling behind everyone else and I don’t want to give that up.

I have been on Topamax 100mg twice daily for a year. A month ago I had a pregnancy scare so stopped taking the medication until I could take a pregnancy test. When my test was negative a week later I restarted the medication. I began to experience muscle spasms/tremors but cannot be sure if they started before or after I started re taking the medication as they began as very mild and have progressively gotten worse. I had always experienced tingling sensations, hair loss, forgetfullness and mild confustion but with the addition of these spasms/tremors I couldn’t bear to continue on it. My Dr perscribed me a tapered dose but I must admit I have come off it a little quicker than I should have from sheer frustration. I took my last dose 5 days ago. The muscle spasms/tremors have not gotten any better and this morning I woke up with tinitus which hasn’t gone away. Could these be withdrawl symptoms? If anyone else has experienced similar symptoms how long after stopping the drug did they find the symptoms went away?
Any comments would be appreciated.

First, thank you for your response! I am glad to know I am not the only one who has had this problem! My mom and I called the company that makes Topamax. The woman we talked to looked up speech problems in their reseacrch bank and said that it has been reported – slurred, stuttered speech problems. No follow-up on how patients have done though. She ended up taking a lot of information on me to send in a side effect report to the FDA. At the end of it all, she said I wasn’t crazy, that this was probably the Topamax causing it.

I am off Topa now – have been for a week. My pharmacist said it will probably be two weeks for it to be completely gone. Since the last week, my speech has improved some. It does get worse when I have a migraine though. Mine are strictly weather related and it’s raining every other or every third day in the South – not helping. When I have no headache though, it sounds pretty good. I feel like my tongue does not want to work right – like a motor problem with it. I guess the Topa ended up target that portion of my brain. I am so glad to hear that you have improved – that is really exciting for me to hear after all I’ve been through the past six weeks.

Whistling and loud noises really bother me. I have more issues with phonophobia than photophobia generally. Thus earplugs are a favorite. The part of the audiology test that caused my complex migraine was actually when they shoot warm water into the ear as part of testing the vestibular system. But, I am sure all the tones and beeps I listened to for the first hour plus of testing did not help.

I’m back on Gabapentin for prevention. Have had a couple of times when I have had facial tingling, but no paralysis. These darn complex migraines are just no fun – especially when it comes to trying to find a treatment for them.

Thanks again for responding! It’s comforting to know that I am not the only one out there. If you have reported to the FDA about your speech problems, I would suggest it. It’s the only way things will change! Hope you are doing well! Take care!

As far as my speech, my pharmacist said the Topomax should be out of my system completely in two weeks total time – I have a week to go today! My speech has already started to improve over the last week, so I am hopeful!

Did you have hair loss? If so, have you taken Biotin and Selenium? My hair loss has slowed down, but I thought I might try them. Thanks for your help and responding to me! Take care!