Comments on: Migraine patients more sensitive to Topamax?

By: Denise

Denise — Sat, 26 Dec 2009 04:55:27 +0000

Well, I’ve been totally off for about a week now. I have been getting migraines but they have been a bit different. I still get the throbbing headaches but not as strong. Instead of aura or the feeling of dread before the headaches I now get numbness or tingling feelings in my face and on my nose.

The memory, the unsteady steps and the lose for words are still there but not as bad just only if I need to think quick. I still notice when a migraine is coming I can’t look up and down too quickly or the migraine comes up quickly. Strange.

One old problem that has returned, which is new as far as my migraines are concerned is the dizziness just before the migraine. I fully expected everything to go back to the way it was except for the memory and lose for words from what I was told and read but hmmm…?

I do notice when I get stressed I get migraines quicker then I use to. My eating habits haven’t returned and things still taste off but that’s ok.

I told another medical professional when my migraines first started to become worse then usual and the additional issues before using topamax and they stated it sounded like PTSD or Post tramatic stress disorder. I have several issues in private and work life that really got to me. But anyway, we will see what will happen in the next month or two.

I know someone who was in a medical study where it was used to help them quit smoking, it worked, however same troublesome side effects.

By: Jan

Jan — Fri, 25 Dec 2009 00:21:04 +0000

*edit “never used to take PROPHYLACTIC drugs”

By: Jan

Jan — Fri, 25 Dec 2009 00:18:39 +0000

I’ve been on Topamax for about 6 weeks now (had migraines for 30+ years, recently become 75% of my life with possible perimenopause). I get the pins & needles in both arms and right leg, and the loss of words, muddy thoughts, I am freezing cold all the time and cannot get warm. As for the depression, crying and aversion to socal situations, I’m just confused as to whether this is hormonal or drug related now – it’s very upsetting when you’ve been active all your life then suddenly you can’t do anything except plan your life around pain or the possibility of it. I’m dreading the first review as I know they’ll want to increase the Topamax dosage – I never used to take drugs but when it’s that or the migraines…. Jenn described it perfectly earlier when she said ‘you want to slam your head through a window’. Do I live as a depressive hermit and hope the migraines go – for what kind of life? Or do I carry on year after year trying different drugs? At the moment I just don’t know.

By: Ed

Ed — Fri, 18 Dec 2009 16:41:06 +0000

I went off topamax cold turkey once I found it might be a major cause of my kidney stones. I had no real issues. Of course, your mileage may vary…..

By: Natalie Jones

Natalie Jones — Fri, 11 Dec 2009 10:46:30 +0000

Danielle, I know what you mean…i happily lived with the side effects of Topamax, rather have a few side effects than the migraines and all that comes with that!!

I have now had to come off all my medications, and quickly as Im pregnant, there were no withdrawal effects from either Topamax or Propanolol….so now my migraines arent as bad due to the pregnancy hormones, but I can only take paracetamol if I do get one, so I seem to be spending alot of time in bed, trying make myself feel better!!!
My Neurologist is hoping keep me off all medications after baby is born, but I think its unlikely as Im still suffering!

By: Denise

Denise — Thu, 10 Dec 2009 19:17:30 +0000

Due to some issues with my primary care physician I have to come off of my meds on my own. I’m really scared because I have no way of getting medical assistance. I know there are issues with cold turkey on topamax can’t find anything online can anyone recommend and website?

By: Jenn

Jenn — Thu, 10 Dec 2009 05:38:04 +0000

Hi. I have taken topomax 100mg 2x a day for four years and I am currently weaning off of it because my migraines are pretty out of control so we are trying some new drugs. The sides effects, like the tingling and rapid weight loss do stop, the memory and speech issues do not stop but you just really learn to deal with it, hey who can carry on a coherent converation or even dares speak their or anyone else’s name with a migraine going on anyway? The topomax does get better, really, as long as it is still working and you are not having any suicidal or unusally depressed thoughts I recommend hanging in there. Right now my doctor is working with a pain clinic that specializes with migraines and I feel like a guinea pig, all of these drugs have side effects and the last one they were trying me on had me fainting suddenly. When the side effects seem to annoy you just remind yourself of those nasty migraine side effects; vomiting, agitation, depression, light sensitivity, noise sensitivity, aura, blurred vision, want to slam your head through the window (or is that just me with a migraine) etc. Best Wishes. Jenn

By: Ed

Ed — Thu, 03 Dec 2009 15:24:05 +0000

One issue to be very aware of is the fact that Topamax also increases the risk of kidney stones. especially if you have any family history.

I took Topamax for a few years and ended up with enough stones to gravel your driveway. Talk about pain!!

By: Denise

Denise — Wed, 02 Dec 2009 21:55:08 +0000

Katie: I started to get rebounds just before seeing the dr. But they were caught in time before they became unmanagable. Good luck on those and get them taken care of.

Danielle: For me the headaches just started to get worse with age and onset of perimenopause. My headaches started at 8 with onset of puberty they were bad then got better then got worse with teens got better with 1st child got bad with 2nd pregnancy and so on and on and on…. The taste thing for me is I’m and emotional eater too… I’m also or should be on but not on anti depressant but not… But so far this is working for me… I’ve actually lost weight. but can’t wait for menopause I have been told this will help with migraines.(crossing fingers) My family history is riddled with migraines… Mom, her dad, both had them. Mom’s stopped immediately when she had a hysterectomy. I’m not trying to be that drastic but. I do know what a migraine is as I’m sure other’s are but some are as I’m sure have security needs… When I first started with the tingling the dr. didn’t give proper warning. I was scared I was having some sort of attack of some sort. Now that I know and do know that I can do something to help or possibly help to reduce some of the affects if helps to make me feel a bit more in control of my health and my life instead of something else controlling me. That’s all that is so yea to some it may seem minimal but it’s all about security and mental well being.

By: Danielle

Danielle — Wed, 02 Dec 2009 21:16:08 +0000

I have had migraines since I was 5 years old, and stared having DAILY dibilitating migraines after my second child in my mid-twenties. I wanted to die, and all the doctors looked at me like I was just some drug addict looking to score. After over a year of constant pain and sedation, I finally found a doctor that looked deeper into my case. While I was on Inderal LA, which I tolerated, my doctor recently switched me to Topamax. I really can’t believe some of the comments here talking about how the tingling and the taste are just too much to handle. It makes me believe you have never REALLY had a true migraine. Every medication is going to have its side effects, but some of theses, including Topamax, have given many of us our lives back. It is a GOOD thing for us to stay away from soda. And a little tingling in my fingers doesn’t bother me nearly as much as not being able to open my eyes.