Migraine patients more sensitive to Topamax?
 Topamax – things "tasting funny" a common side effect for migraineurs |
Topamax (topiramate) has been a help to many patients with migraine and epilepsy. Unfortunately, many migraine patients also experience Topamax side effects, and these side effects make them more likely to stop topiramate treatment.
Researchers at the University of California in the United States and the University Medical Center in the Netherlands decided to ask the question – why so many problems? Are migraineurs actually more likely to have side effects from Topamax?
The researchers compared patients with epilepsy and patients with migraine who were taking topiramate alone as a treatment. The data showed that migraineurs were indeed more likely to stop taking the drug because of adverse reactions.
Epilepsy patients were more likely to suffer behaviour reactions and headache. Migraine patients were more likely to find that things "taste different", or have cognitive problems (such as language problems). Migraineurs were also more likely to drop out of topiramate treatment because of adverse reactions.
Technical data for the study can be found here: Are Migraineurs at Increased Risk of Adverse Drug Responses?
13 November 2008 @ 11:20 pm
Something interesting I noticed when I was reading through the full prescribing info on Topamax: the clinical trials used a much lower dosage of Topa for Migraineurs than it did for Epileptics.
18 November 2008 @ 5:15 pm
I am taking Topamax and have been for 3 years now. I have the language problem and the things taste funny problem and they have not gone away. The language problem is very insidious. I find it difficult to find the right words for things. I cant tell any stories or even really talk to my friends for long periods of time without pausing and searching for a few words. I am willing to take the medications because the Migraines I have are debilitating and quite intoleralble. The only question I have is, If i go off of topamax will I get my language skills back?
19 November 2008 @ 9:04 am
Thanks for your comments. Yes, Topamax is generally given at a lower dosage for migraine than for epilepsy.
Gwen, you ask a very good question – how permanent will the side effects be? I don’t think we have enough information to give you an answer. I’ve heard people claim that they got a lot better after stopping the drug, and others who say the problem continued.
I would also like to know if anyone has tried actual therapy for the language problems. It would seem that it would be be better to just take a different medication, but I do understand that if it helps with migraine anyone would be reluctant to start over with another treatment.
21 November 2008 @ 8:12 am
I was originally prescribed Topamax, before it was approved for Migraines…
(and was not told that by the doctor) and within a few days, it made taste
terrible, especially soda pop, but I also lost the feelings in my left hand and up to my elbow. I was told to stop taking it… and my taste and loss of feeling would return about 4-5 days afterwards. It took over a year to get my taste back… and not to where it was before, and the loss of feelings still has never returned to my left hand (feels like I slept on my hand) What made me very mad is that I have seen on national morning TV shows on CBS and NBC… that they were tauting Topamax to loose weight (no wonder if it makes food taste like crap) and also to stop alcoholics to stop drinking… well, I know it stopped me from drinking soda pop for a very long time,too!
21 November 2008 @ 11:21 am
I take 50mg of Topamax daily for my migraines….and yes, by the second day, ALL soda tasted FLAT and NASTY and still does….it did not seem to change the taste of anything else, though….
Interesting about the numbness in the left arm/hand….I have had numbness/tingling off and on, mostly up and down my left arm and into my hand…I attributed it to a pinched nerve or something and kept going to the chiropractor…I am wondering now if it is the Topamax causing the issue?
21 November 2008 @ 2:21 pm
I stopped taking Topamax about a year ago (Oct. 2007) for the reasons cited as side effects (word retrieval problems, left arm feeling numb, tinnitus). The language problems have improved, but the numbness in my arm comes and goes, and the tinnitus is constant! Maybe it takes longer than one year for the side effects to subside…?
22 November 2008 @ 4:00 am
One more thing…
It’s ironic that my doctor tried convincing me that the pain in my arm, was more than likely… a pinched nerve! Rather than Topamax…real cause! I wonder if they were told to say that, by the manufacturer?
24 November 2008 @ 6:42 am
Thanks again for your comments. Yes, the media gets pretty hyped up about drugs, whether it comes directly from the maker of the drug or from elsewhere. I guess it doesn’t make as good a news story if you have to say,”This drug has helped thousands! But then again, many of those people have to live with the side effects…”
We have to remember not to be surprised when drugs have their downsides. They all do, even when they really are a help to many people.
19 December 2008 @ 9:17 am
My daughter has tried Topamax and suffered such severe mood swings that she had to stop. The MD then told her to try Verapamil. It is also causing depression and mood swings. Is there nothing else to help? Her migraines were brought on by allergy injections.
29 December 2008 @ 10:34 am
Cynthia, there are literally hundreds of combinations of treatments that may be a help. I would be surprised if a doctor tried Topamax first. Though it has helped many, it really is way down the list of things to try because of the side effects.
I recommend that your daughter see a neurologist who is a headache and migraine specialist if she hasn’t already. If your doctor is suggesting you’ve tried everything with those two – you need a new doctor!
31 December 2008 @ 3:33 pm
I’ve been taking 100 mg topamax for several years now. The relief from migraine is great– but I also have the tingling and the loss of word-retrieval problem. I thought I was getting dementia or alzheimers! Thank God it’s not that! At least we hope not…. The tingling comes and goes but has not gotten worse than a certain bearable point. The mind thing I think people think I’m menopausal, but it does bug me.
31 December 2008 @ 9:25 pm
Thanks Trudy. I’m glad it’s not “unbearable”, but I hope things do improve!
1 January 2009 @ 2:22 pm
In the past few weeks, since I have started with 2 50mg of Topamax a day, I have started getting terrible light headed dizzy spells…they last only a few seconds….2-3 at the most, but they are vivid and scary!!…the wildest head rush I have ever felt!!!…..the room spins….or suddenly the ground comes up to meet my face…..then just as quickly, everything is right again….
Sad thing is…my migraines are not getting any less lately….
1 January 2009 @ 11:37 pm
I have been on 100mg of Topamax for over a year, my MD started me on 25MG and gradually we moved up to 100. I do feel some tingling and twitching and have some language / speech problems, i.e., have difficulty searching for the right words at times. It’s a real pain at times because I am a foreign language instructor at a college, I love crossword puzzles and I like to socialize, in general. Still, I put up with all the side effects because the debilitating mimgraines that I don’t get as often were making me suicidal and I no longer feel that. Just like other medications weren’t for me, and I have felt horrible side effects with others, I know Topamax isn’t for everyone and If an improvement appears, I would try it. It’s always such a risk. For now, I am happy not to have migraines 80% of the time, openning up my eyes in the morning with doubt and fear.
3 January 2009 @ 11:52 am
okay….I am weaning OFF of Topamax IMMEDIATELY…I cannot FUNCTION today…for a few days now it has gotten worse….to where I have a constant buzz going…like I am drunk and cannot even walk a straight line…so I googled Topamax and Feeling drunk and came up with this website
http://www.druglib.com/adverse-reactions_side-effects/topamax/seriousness_lifethreatening/
NO MORE TOPAMAX FOR ME….I would rather live with the migraines than end up not living at all, because right now, that is where I feel that this medication is sending me towards….
10 January 2009 @ 7:21 am
Thanks for your comments both for and against. It certainly is a balancing act trying to decide what medications to take.
Note that druglib.com is listing a whole set of individual cases. These are important as a group, but be cautious taking them one-by-one. Often times a doctor notices an adverse reaction, but there’s no way to be sure if it’s coming from the drug, or a combination of drugs, or something else.
Most people won’t experience a fraction of these side effects. Yes, Topamax is a more powerful drug and there are a lot of side effects. But it effects everyone differently.
Anyway, Tambrey, I hope you can find something that works better. There are a lot of options out there you need to try something like Topamax.
12 January 2009 @ 9:27 am
Hi, Ive been on Topamax for nearly 2 years now, and the severe symptoms that I started with began to disappear within a couple of months….I don’t think I could survive without it now, as my migraines were that bad at the time. At the moment though I’m also on Propanolol as well, which just might balance out the serverity of the side effects??
Before Topamax, it was Pizotifen, and that was too difficult to live with, the side effects are worse than Topamax, plus you feel like a zombie constantly, and need to sleep pretty much for 20 hours a day to even slighty function!
At least now I can sort of get on with my life again, I very rarely have the debiliating migraines I used to have (I had hemipeligic migraines with visual aura), but I am on the top dose of 100mg twice a day for migraine use.
Hope this gives hope to somebody else…if you can see out the side effects, it can help!!
14 January 2009 @ 3:24 pm
Hi – I’ve tried Propranolol and Topamax – neither worked and I have started Zoladex. I can now take a triptan and it will get rid of the pain BUT that only works 3 days a week. Has anyone with hormonal migraines found a prophylactic that works?
15 January 2009 @ 2:57 am
Adrienne….I dont suffer from hormonal migriaines do maybe the treatments would be different??
The pain killers that I have are Indomethacin, both orally and as a suppository for when the nausea gets too bad, they take about half an hour to work, but they ceratinly settle the migraine down enough to I can function.
I hope you find something soon that works for you!
17 January 2009 @ 7:16 am
Thanks for your comments, everyone! Adrienne, many of the prophylactics that normally work for many with migraine have also worked for hormonal migraines. Some may be promoted more than others, but I think when it comes right down to it it’s like everything else – it depends on the person.
Hormonal therapy itself (ie keeping estrogen levels stable) has also been a helpful treatment.
1 February 2009 @ 9:46 am
I have been on Topamax for a year now. I am on 125mg taken at night so that I don’t have any of the side effects that get you when you first take it. I have the tinling but all I have to do is drink more water and it goes away. It starts when I am not hydrated enough. I am not one to drink alot of soda, so that did not bother me at all. The problem with the loss of words I just laugh off. For me Topamax has helped so much that the side effects are tollerable. I am very lucky that it work for me. I have also lost weight on Topamax. Which has also been a plus.
14 February 2009 @ 7:27 pm
I was prescribed Topamax for migraines but I went off of it the second day. I was having very scary and racing thoughts, almost like a broken record going over and over the same thing. It felt like someone else was in my head telling me that I had to kill myself. I have neve had suicidial thoughts or a history of mental problems. I have not been able to find anyone else that has had this experience but my doctor took me off Topamax stating that it is a known but really rare side effect.
Anyone else out there have this type of mental side effect? Is there something in a person’s brain chemestry that can cause this so I know what to look out for if I’m prescribed anything like this again? It really scared me and I’m terrified to take anything again.
23 February 2009 @ 4:24 pm
Kim – glad to hear you’re having some success!
Kimberly: Yes, depression and anxiety and so on can be side effects of Topamax, but they are certainly less common ones. Your doctor is right, and was certainly right to take you off it.
I’m afraid the brain is still too much of a mystery for us to know exactly why certain people experience this side effect. But it’s wise to make sure your doctor knows about it, and keeps an eye on it (with you) while trying future medications. Hopefully something like that won’t happen again – and it may not.
11 April 2009 @ 1:25 pm
I started with a new neurologist who took me off of propanolol which I had been on for years and started me on topamax. I am up to 75mg and his goal is to get me to 200mg.a day, My biggest concern is my short term memory loss and shortness of breath. I felt like I was doing ok on the propanolol (not perfect,but okay) and since I have been on oxygen at night I haven’t woken up with a migraine which is wonderfull. I experience tingling in my fingers but I can deal with that but I cannot deal with the memory loss nor not remembering words like Gwen. I can’t afford that with my new career of becoming a private invesigator. I don’t like topamax. I still get lower grade migraines. I just want to know if these side affects will EVENTUALLY go away. If not…Topamax can go away. I don’t like the way it makes me feel. Sometimes I’d rather suffer the migraine. I think the folks who creates these drugs have never had a headache in their life!
12 April 2009 @ 7:41 pm
I’ve been on Topamax for 9 months, 4 months at 50mg three times a day. The medication was prescribed for nerve pain. Due to persistent problems with word retrieval, memory, and fatigue, my dose was reduced to 50mg in the morning and 25mg at noon and in the evening. Since then, I’ve had daily severe headaches, some feel like migraines, some are more like cluster headaches that last all day. Is there anything I can do to mitigate these withdrawal effects?
24 June 2009 @ 1:34 am
I’ve been on Topamax for 3 years at 150 mg at night for migraines. In the beginning, I had severe problems with word retrieval, tingling on my hands, feet and face, as well as the “off taste”. All of those side effects have continued relapsing and remitting I’d say about every three months. The side effects are not as severe as they were in the beginning, but they are still bothersome. However, the migraines are so much less frequent (3 times a year versus 3 times a week!) that I’m willing to deal with all of the other side effects.
14 September 2009 @ 2:59 pm
Hello-
I just started taking Topamax for my migraines about a week and a half ago. I’m on 25 mg a day. Half a pill in the morning and half a pill at night (yuck lol). My boyfriend states that I’m very moody and on a “hairpin trigger”. I’m just noticing that I’m tired all the time and can’t seem to find the right words for things alot. Is all this normal for someone who hasn’t even gotten up to their 50 mg dose a day??
17 September 2009 @ 7:04 pm
I’m back. I have been off of Topamax now for about 2 months. Bad stuff for me. I have a new neurologist that I am about ready to worship at his feet! We are starting several new things but the one thing that I found most amazing was his recommendation to drink Gatorade. Being the type of person that I am I said to myself, “OK..I am going to prove this guy wrong!” Boy…was I wrong! It doesn’t stop the headache by any means but it sure does slow it down. It has to do with the electrolytes. We now keep Gatorade (low calorie) in the car, in my home and it goes where I go…along with my Maxalt and my Amerge. My doctor is also a migraine sufferer. It sure does make a difference having someone who understands. I would be interested in knowing if anyone else has tried Gatorade.
7 October 2009 @ 5:05 am
Greetings from Europe. I just started Topamax (here called Topimax) at a very low dose (25 mg once a day), gradually going up to 50 mg twice daily. Very few side effects so far. I drink plenty of water and take a daily magnesium supplement to prevent muscle cramps (I’m an endurance athlete), maybe that’s why I haven’t experienced any numbing or tingling in my hands or feet. I think omega-3 fatty acids (like ground flaxseed) help protect against word retrieval problems and such. I’m feeling a bit “weird” and restless sometimes, sleeping not as well as before. No migraines so far. So far so good.
8 October 2009 @ 10:13 am
My neurologist has started me on Cymbalta for a oreventative medicine. I still get migraines but they are less severe and tolerable. I am also taking Amerge. I think we are finally getting on top of this and of course the Gatorade is my constant companion!
15 November 2009 @ 12:03 pm
I think I’ve notice that the Topamax makes me somewhat jittery and wired- and I definitely lost weight on it. It seems like everyone else is saying the opposite, is there anyone one else who thinks the Topamax is making them feel that way as I do?
24 November 2009 @ 2:05 pm
I thought I was going crazy!!! I am so I guess happy to see I’m not the only one… I have had migraines for most of my life. I’m now 44. I recently started having dizzy spells alternating with my migraines. I was given generic topamax and no migraines but just dizzy then occasionaly dizzy and pins and needles in hands and feet and lose for words. I’ve never been at a lose for words before in my life… I work or possibly use to work for a place where I need to be able to talk 8 hours a day. I thought I was losing my mind and no one seemed to be able to help or wanted to help me I’m so glad I found this page.
24 November 2009 @ 2:06 pm
Oh! and I have lost some weight
25 November 2009 @ 10:01 pm
I took topamax for about 1 year. My headaches got better. I still had them but not as frequently and not as savere. I lost weight, which was great, but I was cold all the time and tired all the time. I did find that it was hard for me to complete a thought with words. It was like I couldn’t find the words I wanted to use. I was extra moody and irritable. I found myself getting sad and depressed. I also had the tingly hands. I wanted to go off Topamax to see if some of these things were side effects from the medication, or if they were going on for other reasons. I had also stopped working the long hours that I had been working so I was hoping that getting more rest would help too. I still get my headaches but they haven’t been as bad as they originaly were. I found that the other issues I was haveing went away. I know that they will probably never go away 100% but things are alot better for me now than they were. I don’t know if Topamax helped get them under control or if getting the stress in my life helped. I like to think it was both.
28 November 2009 @ 10:01 pm
I was doing further research into some of the side effects of topamax and it’s generic conterpart. I read in several places that the tingling of the hands and feet may be tied to the need for potassium…. May need to talk to your dr. I know I am also on diuretics so I did start taking otc and I did find a bit of relief. I am still experiencing if I have not stated mood swings but I am still under extreme stress at this point in my life. My family believes it’s “all in my head”.
1 December 2009 @ 11:30 pm
So glad to have found this site!
I take Topiramate 100 mg 2x/day and it helps tremendously with the migraines at least. I don’t think I have any side effects. I still get migraines, just fewer of them. Since my insurance company only gives me four Relpax/month, I have to take Fioricet because I get more than 2-3 migraines, which is what four Relpax covers.
Strangely, while the Topiramate doesn’t cause any problems with words, the Fioricet does. I have a lot of trouble retrieving nouns, and only nouns, while on Fioricet. At least I think it’s the Fioricet, although it could be the migraines. Although it doesn’t happen with the Relpax, only the Fioricet.
The problem is, since I started having to take Fioricet because of the insurance problems, I think I’ve developed a dependency on Fioricet and Excedrin, and now my neurologist says I get rebound headaches. I get sinus headaches daily, usually several times a day, in addition to the migraines several times a week. The doctor wants me to go into a hospital to get weaned off the Fioricet and Excedrin. It sounds complicated, and I’d have to stay for several days. I really really don’t want to, but I’m tired of daily painful headaches.
Anybody ever get rebound headaches?
18 October 2010 @ 7:08 pm
I used to take Fioricet for many years. I was becoming dependent on it and also got the rebound headaches. Then you take more pills and its all a vicious cycle. That is when I went to my doctor to get on maintenance meds. First they tried antidepressants, but they didn’t work for me. Now I’ve been taking Topamax for over 3 years and am up to 100mg 2x daily. I do get some side effects, but being able to function with less migraines over rule them. I get the nasty taste of soda & beer-basically its anything carbonated, used to get the tingling fingers/toes, still get the “at a loss for words”, and vision problems- I had to get glasses since I have been on topamax, I did loss a little weight too. I also take 4mg cyproheptadine nightly, which is an antihistamine, for my seasonal migraines. I take magnesium and B2 supplements as directed by my neurologist,and Maxalt, Naprosyn, muscle relaxers, or Imitrex Injection all on an as needed basis. I used to get migraines/headaches almost daily and am now down to only a few times a month unless I am stressed or other circumstances. I was diagnosed with menstrual migraines, seasonal migraines, and a third as yet to be determined, which is my most severe migraine.
2 December 2009 @ 3:16 pm
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.
2 December 2009 @ 3:55 pm
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.
3 December 2009 @ 9:24 am
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!!
9 December 2009 @ 11:38 pm
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
10 December 2009 @ 1:17 pm
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?
11 December 2009 @ 4:46 am
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!
18 December 2009 @ 10:41 am
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…..
24 December 2009 @ 6:18 pm
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.
24 December 2009 @ 6:21 pm
*edit “never used to take PROPHYLACTIC drugs”
25 December 2009 @ 10:55 pm
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.
7 April 2010 @ 7:45 am
I started taking 200 mg topamax 4 years ago; thought it was a wonder drug. It didn’t completely stop the migraines, but it did decrease the level of pain. However about one year ago the frequency of my migraines begain to increase. I seem to have developed a tyramine sensitivity (no bananas no soy products, no peanut butter). I’ve weined myself off the topamax. I figured if I was going to have migraines at least I wanted to be able to think coherently and not feel tired all the time. I’m 55 and my migraines have increased with age. I have 12 – 15 days of migraines per month. I’m just frustrated with no quality of life.
30 April 2010 @ 8:54 am
I was prescribed Topamax during my most severe time with migraines. I was on a very high dose for over a year. The side effects were the same as what are listed under common side effects on drug description sites: cognitive issues, mood swings and warped sense of taste. Once I went off of it, all of these side effects went away.
A short time later I joined a migraine drug study. I was put on Gabapentin for migraine prevention. This drug completely changed everything. After some time of regular dosing, my migraine decreased in frequency and intensity. Before all treatments I was getting anywhere from 12 to 18 migraines a month. During the Gabapentin treatment, they lessened to 5-8 a month. The drug study has since ended and my neurologist put me on a daily regime of Metroprolol for prevention. I don’t know if the Gabapentin relieved my migraines and if the Metroprolol is working, but I at this point I only get maybe 6 a month and they are so mild that I can take a couple Aleves and they go away.
If you can get a prescription for Gabapentin, I highly suggest trying it.
7 August 2010 @ 2:06 pm
I love Topamax. It works for me as a mood stabalizer and a migraine preventitive. It has stopped the near crippling headache I have had nearly my entire life. It has even reduced other forms of nerve pain. It has worked wonderfully for my mother as well. I can’t help but wonder how many people with chronic headaches take it believing they have migraines but are not experiencing neurologicaly based pain. This medication balance defecits in the tempral lobe. If you have a disorder originating in this region or percieved in this region you will experience relief if not you will experience horrible side effects.
I have heard many people complain of “migrains” over sinus and tension headaches and insist they have them but everyone I know with true migraines (the kind that will show abnormal patterns in EEG) have done well on Topamax.
6 October 2010 @ 7:59 pm
OK, here’s my take on Topamax. Alhough I have not recently continued the process that I should in taking the Topamax it has worked far better than any other drug. I became addicted to Fioricet (the first drug given to me), the other one (immediate acting once migraine comes on – can’t think of the name, gave me chest tightness), and Excedrin migraine does sometimes do the trick, but in severe cases nothing works. Taking something (topamax) every day has the best effect for me. And though I do experience the tingling in my hands and feet at times, it far outweighs all the other side effects of everything else I’ve been given in the past. So, I must thank the neurologist that suggested it to me after my daughter was born, because I am beginning to get back on it to avoid all the other problems I’ve previously experienced.
26 March 2011 @ 1:48 am
I’m 43 and have had migraines most of my life. Until 2008, my migraines were infrequent so I was able to treat with a dose Imitrex or Relpax. When my Peri-menopause symptoms began to worsen coupled with the stress my mother having had two heart attacks in one year, my headaches came to a crescendo. My headache was a daily companion. The pain was so intense that I named it “Pete the Icepick.” My doctor put me on Topamax. The dose climbed to 200 mg. per day. It reduced the pain to a dull roar, but it never went away completely, plus I had new symptoms to cope with such as tingling and numbness in hands and feet, cognitive slowing, memory loss, and an inability to perspire during exercise. It took me a long time, but I backed the dosage off to 50 mg. per day. Headaches were manageable w/o all the uncomfortable tingling. I asked doc for help, and he put me on Inderal. For nearly two years, this drug almost wiped them out completely, but my headaches were trying to make a resurgence. Plus I was living with constant pain and soreness in my neck, shoulders, and arms. Now I have stopped the Topamax completely (this was a long arduous process), and I am now taking Cymbalta. I have never had a drug work so effectively on the prevention of my migraines. Now I rarely have head pain, in addition to no more neck, shoulder, back, and arm pain.
10 May 2012 @ 12:40 pm
i was prescribed topamax during my most severe time in migraine. but i was probably facing all of these problem that u are discussing like language trouble, mixing words , tiredness and also so what can i do ?
14 May 2012 @ 7:59 am
Hello Saima,
If these side effects are really affecting your quality of life, your job, etc., then you might want to talk with your doctor about an alternate migraine prophylactic, until you can get your headaches under control through a whole foods diet. Since I wrote my comment, I have stopped consuming any foods containing gluten. I eat only organic, grass-fed meats, NO processed or prepackaged foods, and whole organic veggies and fruit. I rarely have migraines now, and I have lost some weight. I take no migraine prophylactics now (not even Inderal).
I read “Stop Inflammation Now” by Mark Hyman. Now, I truly believe that there are foods that cause inflammation in our bodies, which can lead to heart problems, diabetes, cancer, and so on….Most of these are foods that have been genetically modified….take GM wheat, for example:
http://preventdisease.com/news/12/011612_Modern-Wheat-Really-Isnt-Wheat-At-All.shtml
Also I don’t eat meats that have been injected with hormones and antibiotics. Now I only consume sprouted grain bread. That’s the only “wheat” I have. I have minimized dairy consumption, as well as my sugar consumption. Even though I am not a celiac, I felt that my migraines were due to the fact that my body was in a constant state of inflammation.
Best of luck to you. I hope that this helps.
9 June 2012 @ 12:15 am
I wanted to share my personal story with other Migraine sufferers as I know I am not the only one out there. I hope this helps people who may not know what could be causing some of their issues.
I would also like to know if you can help me. THANK YOU and BETTER HEALTH TO YOU!!
It’s worth to mention that I have been off Topomax for one year one month. My dose went up to 100mg per day. My side effects were pretty severe:
For me, the help or pros that I received from Topomax were:
• My headaches got moderately better (less frequent daily peaks and valleys – less than 4 peaks per day!!). No change in the severity of the acute ones.
• I did lose about 15 lbs of the weight I had gained with the Trypto-meds (including Propranolol), which was great,
The CONS/SIDE EFFECTS:
1) I was always cold – my iron levels dropped severely (I’ve had to take 900 mgs of Iron daily), which have helped. Happily I’ve avoided a blood transfusion and have graduated to 300 mgs per day).
2) I was severely moody with Topomax (LOL-family never lets you overlook that!!). Not so bad anymore. After a year, I am aware of my mood and it’s not a constant up and down issue caused by the medicine, but we can tell our families and friends, that ….uh, duh – pain hurts, it would make everybody moody!!!†(moderately, when it’s hitting us, not all the time).
3) I also developed a very severe case of tinnitus, could hardly hear without the funny ringing. This stopped 3 months or so after I stopped taking the meds. My neurologist said I needed to go get a hearing test….um, nope – it was definitely the Topomax.
I got fired because of my severe Migraines, and the serious side effects to Topomax.
4) There was those communication problems, but for me it was both written and spoken: When talking, I went from being somewhat bright, to sounding asleep, drunk or with some sort of mental retardation. My speech pattern was much different, I slurred words unless I spoke very slowly, but then I sounded drunk or would I would just blank out completely if the sentence lasted longer than a few seconds. I could not hold on to my train of thought, so I couldn’t even come up with a synonym if I was speaking. My neurologist also gave me a CPAP machine, and that dried out my throat so I sounded hoarse all day, and people thought I had just woken up, pair that with memory loss and slow speech. I also developed a form of dyslexia with my writing. A year later, I sometimes still sound very tentative with word choices and rarely, but still have slurring, not as often. However, I now rely heavily on the auto-correct function on my word program, and still have about 75% difficulty remembering both thoughts and words, but I’ve recently noticed a better improvement in memory.
Two of the worst side effects I had with Topomax were:
5) I would fall (“have the floor meet my face or tooshâ€), trip as if drunk or on drugs, or fully faint. I would be picked up by those around me or get up on my own after a period of “unawarenessâ€. Yet I did not really “get†the fact that a fainting episode had happened, or that I should at all be concerned that I had fainted. It’s as if there was a complete disconnect between body, thought process and feelings about an episode. Since the time I went off Topomax, I am now totally aware of self, I only fainted once close to the time I went off the medicine, but I was almost immediately aware it had happened and I was worried about it. None in the past 10 months or so.
6) Loosing time or loosing identity. These were much more severe than the quick fainting episodes. These were periods of time where I would look around and not know what “wasâ€. As in, I couldn’t have told you what a wall or a ball, or a tv or a person were. I simply had no idea, no need to know, no connection, no relationship to what anything around me was. Slowly as minutes passed, I became aware of “selfâ€, but not of who I was and whatever I had discovered “was†became unimportant, not there. All I “understood†was that I was an entity, period. Then, I would look around and think of self being in a place, but not connecting it to a “meâ€. After a few minutes or longer (as there was no connection to time or time recognition), there would be thoughts or ideas of issues or problems that an entity had (ie. X person has this issue, this amount of work, xyz family member with a cold, etc), but they would not be identified by my brain as mine. The entity that thought about them had solutions for a few seconds, and once even some thought of “silly person†or “silly problem†they would be easily solved. Yet they were still not related to me, just to the entity, the human. They were thoughts racing through brain pathways, but not yet identified with me, the person – the individual having them. Then, I would begin to feel dizzy, trembling, sweating cold, feeling nauseous, shaking, unable to walk on my own, not without stumbling against a wall or holding tightly to furniture. And all of the sudden making connections, feeling very to feel distressed about not knowing where I was. Yet I was never able to remember what I was doing a few minutes before this “awarenessâ€. I still do not remember anything about the time prior to these “blackout†episodes, but there have been none this severe since I stopped Topomax. I apparently I still have some small memory loss (my family reminds me we had small conversations which I don’t recall), but not as many, and I used to remember colors, small details about things I did or remember conversations I had word for word months after I had them.
OPPINION
To me, Topomax helped a little, but truly destroyed the life I had and my identity. Pharmaceutic companies, Neurologists or Headache doctors should work on finding out a way to test some of these side effects on individuals. I still have not found a Doctor/Neurologist that has found a way to help me with my chronic or acute migraines. I am taking 300mgs of Verapamil daily. This helps keep the acute migraines to a minimum of 3-4 episodes per week, which still mean 3-4 full days of having to stay in dark rooms (light is my trigger), unable to work, unable to work on a PC (screen light) as I can neither stand the light nor see the screen (to the point it feels like I have a film of oil in my eyes and I can’t make out letters). But at least I have those other 3-4 days where I just feel the manageable pain of the chronic migraines. I can deal with a 5 on a 1-10 pain scale for a long while, higher than that gets harder. How about you? Has your pain gotten so bad that your body just goes “night night†and “checks out�
THANK YOU for letting me know I am not alone out there with the odd side effects to Topiramate. For the tips, I will definitely try the Gatorade. Long ago I had to mainline potassium and it is sooooo not fun… It hurts!, So Gatorade drinks may just become a staple of my diet!! More water? No problem!!!
QUESTIONS:
Any suggestions for other medicines or treatments?
For CHRONIC Migraines I’ve had Propranolol, Topiramate, and now Verapamil.
Do you have any suggestions about how to ask/how to explain/what to mention to a Neurologist so they can better help me with the chronic migraines?
For ACUTE Migraines I’ve had Nortryptylene, Imitrex or Treximet (Imitrex + Naproxen), Ibuprofen 400-800mg (and an ulcer thanks to the NSAIDS-so no more Treximet or IB), I’ve also had Clorazepine 100mg to 200 mg’s (these are for nerve pain, but they do not work for me. They do make woozy and last hours, but don’t decrease the pain). I can take ½ of a 750mg Hydrocodone for the acute ones, but I hate taking these, they are obviously a last resort type of medication, plus the relief only lasts up to 2 hrs, if that.
Have you heard of Isometh-D-Clhloralphenz-APAP? Any side effects?
My old insurance did not want to pay for Imitrex nor for Maxaalt, now that I am unemployed, my USC Medical doctor does not want to prescribe Maxaalt either, but has this medicine worked for anybody with severe migraines? Any side effects, which ones?
Do any of you know how to obtain help (until I can go back to work) paying for this type of medications? Either for Chronic or Acute Migraines?
22 December 2012 @ 6:50 pm
Tried to use this med as the migraines were increasing in frequency and intensity. Gave it a week of just 25mg and as the week went the side effects got worse. Had numbness / tingling areas on face, arms mainly with numbness of couple of fingers about hr or so after taking med for about 2-3 hrs of not feeling finger tips. Tired and the couple migraines I got mid week were instant major migraine with no warning – usually get some pressure that intensifies. Currently 1 excedrin generic (since originally still not being made again though they work faster than generic) with 2 ibuprofen if I catch mild ones before too bad, otherwise I have to use fioricet (especially if I need to drive home from somewhere) or relpax (makes me tired for a while but gets rid of the headache). Next step may be to try accupressure an reiki as a friend is having relief from them.