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First I want to say, after reading several posts, that it seems a...

Posted at 5: 6 PM on Mar 01, 2009 by brbarb, #39476
First I want to say, after reading several posts, that it seems a lot of you are taking Topamax without food, which may be causing your "spaciness." My doctor suggested always taking it with food, even though it says with or without food, and I only experienced spaciness the few times I took it at bedtime without food. Once I started taking it with breakfast and dinner, that never happened again. I am a 48 year old woman, prescribed Topamax in September of 08 for migraine associated vertigo without headaches, with facial numbness. The first thing I noticed was I immediately had headaches, which to me indicated it was dehydrating me as that is the only time I get a "normal" headache. So I knew I had to drink a lot of water. Soon after starting Topamax I developed a dry cough that lasted the entire time I was on the med. I did not relate it to the drug at the time, however. It never even occurred to me. After about two months on the drug I started having trouble breathing with extreme dryness in my airways. I was prescribed an albuterol inhaler which did not help. I was then prescribed a corticosteroid inhaler which also did not help. I thought the trouble breathing was from taking Nadolol which I was prescribed for occasional heart fluttering - the neurologist said this was a normal side effect of Topamax. I stopped taking the Nadolol but the trouble breathing continued. I also had more migraines with vertigo and facial numbness than before I started taking the drug. I hoped it would eventually stop and the drug would kick in to help the vertigo, so I stayed on the drug. I had very minor tingling in my feet, but it was tolerable. I became very stressed out, had trouble sleeping, depression, my face started breaking out in November (and still is), I lost interest in everything that I normally enjoy - reading, photography, following politics in the news (sort of an obsession of mine). In December I was so depressed that for the first time in my 11 year career I started canceling appointments and eventually took three weeks off from work to "re-group." In January the neurologist decided that we would increase the dose from 100 mg to 150 mg for one more month, and if it did not get rid of my migraines with vertigo, we would discontinue the drug. The first day on the increased dose I had a killer headache, and I drank 150 ounces of water before it went away. That night I did not have to go to the bathroom during the night, unheard of for me. That's a lot of water to drink and not have to pee. Within two days of increasing the dose, my cough became much worse, and within three days, the breathing became more difficult. Within five days, I was having trouble speaking because my airways felt so dry. I called the doctor the next morning and he said it was not the drug, but if I wanted to, stop taking it. So I went off it cold turkey, per his instructions. I had rebound migraines every day for a week or two and my heart was pounding, sometimes for three or four hours at a time. Eventually the cough and trouble breathing went away, however, I had to continue drinking lots of water or I would notice that I didn't have to urinate, sometimes not at all. Again, unheard of for me. I saw a cardiologist at the neurologist's urging and they said the heart pounding was just anxiety. I disagree, as did another doctor of mine. We both believe it was withdrawal. I have now found out (by getting copies of my medical records) that the neurologist is now attributing all of my side effects from the Topamax to "somatization." In other words, psychosomatic - not a side effect, but just a way of getting medical attention. I am seeing a few people on this board who have also experienced a dry cough and trouble breathing. Can I have the same side effects as other people and have them still be psychosomatic, even though I had no idea those side effects could occur? I don't think so. I have a theory that Topamax interferes with hormones which causes a lot of the side effects like lack of concentration, memory loss, anxiety, depression, insomnia, acne, and hair loss - all symptoms of peri-menopause and menopause. Ask any woman in her 40's or 50's if she has these symptoms and most of them will say yes. My face has not been this broken out since high school! My hair is falling out at a rapid rate. I won't even bother mentioning these to the neurologist. He'll just say it's not the drug. I'm very frustrated and not sure what to do at this point. The neurologist has me taking a supplement called Migrelief now, but I think it takes three months to kick in, so I have no relief at this point. Has anyone else experienced the trouble breathing with dry cough? I don't believe for a moment that it was psychosomatic.
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Reply 7 months ago on Mar 19, 2009 by diannaw, #18232

Interesting theory about Topamax and hormones . I started taking Topamax in August 2008 for migraines , titrating from 25mg to 50mg . Have only 2 or 3 real migraines since , and I was getting 5 -10 a month. Tingly hands and feet right away as well as blurry vision . in November 2008 , Dr upped me to 100 mg daily because I began have a DAILY headache that feels like a sinus headache but will not go away for love or money . ( I do not drink alot of water at all ...but am trying after reading your notes ...) this is not a migraine but rather a steady 4 or 5 that is with me morning noon and night . Doc gave me some Hydrocodone and sent me on my way . Fast forward to March 2009 ... I have been to my dr probably every week for 3 months complaining of : blurry vision , THAT HEADACHE , being cold , being forgetful , constipation , unable to sleep . Finally went to the OB/Gyn for a checkup and he found an Ovarian tumor that turned out to be extremely weird when they did surgery on me ...12 cm , benign ( thank you Lord ) and made with thyroid tissue of all things ! Yes , thyroid tissue . So now , I am minus one ovary , and on-line researching my headaches . your posting has me wondering if the Topamax has anything to do with any of this . Yes , I am 43 and could be pre-menopausal but I never had these symptoms before . THe forgetfulness is the worst , I am used to being articulate and to be searching and searching for a word is maddening . I think it's time to take back as much of my health as I can with sunshine and exercise and meditation , each pill seems to create a new problem . ( for me )

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Reply 7 months ago on Mar 20, 2009 by brbarb, #18272

hi - great to hear from you - I think a lot of the forgetfulness and insomnia is from the drug itself but is also a peri-menopause symptom. It's strange that I didn't have the most common ones people complained about - I only had a little bit of the tingling in my feet, nothing in my hands. I am still searching for words occasionally, it's like playing that TV game show - I describe what I mean and someone always guesses. :-) Funny, I can't remember the name of that show right now. haha I think the drug definitely dehydrated me, which is why I got headaches - drinking lots of water should help you (and I DO mean LOTS). It says on the form from the pharmacy to drink a lot of water. My doctor put me on nadalol for heart palpitations and it helped with the headaches but made the breathing issue worse. Strange about your ovarian tumor, I'm so glad it was benign. I hope you find your answer to your health issues. My doctor has me taking a supplement called Migrelief now and I'm doing okay on it. No side effects, thank God!!

Barb

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Reply 6 months ago on Apr 17, 2009 by mommy2monkeys, #18964

It is so comforting to hear of people with the same "rare" side effects. I was only on Topamax for 7 days (25mg) and had to stop because of that breathless feeling. It seems like I just can't get enough air into my lungs. I have been off of the drug for 7 days today, and the shortness of breath continues. Can you tell me how long your side effects lasted after you stopped taking it? I'm eager to breathe easy again and am looking for a light at the end of the tunnel....

Thanks for your time.

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Reply 6 months ago on Apr 17, 2009 by brbarb, #18967

hi there - I'm sorry you're having the same problem - I'd love to print this out for my neurologist - I'm still not sure he really believes my cough and breathing trouble were from the drug. I was on it about 4 months and it took 2-3 weeks for the breathing to get normal again. Hang in there, it will get better! Unfortunately, I caught something that was going around and mine got worse again, but now it's gone completely. Try to stay away from sick people!

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Reply 6 months ago on Apr 24, 2009 by kaschena, #19173

Hello,
I had a scary, puzzling episode of facial numbness on the left side of my face today. It started in the middle of the night when I woke up and felt like my throat was swelled up and I couldn't breathe, also very dry. I got up to get ready for work and noticed my eyelids were swollen. I figured something had bitten me during the night and it was just an allergic reaction. While driving to work, my lips and the left side of my face became numb and puffy. This scared me, as I thought I may have had a mini-stroke. I got to work and the nurse took my blood pressure, which was 140/98 - very high for me. I went to the doctor and they said I had a sinus infection and pink eye. But they could not account for the numbness. I have been taking Topamax for migraines for about 3 years now and was on 150mg until about a year ago, reduced to 100mg, now reduced to 50mg for the past 6 months. The memory loss has gone away, but could my numbness be a side affect of the Topamax? I don't know. I got rid of my migraines by going to a homeopathic doctor, who took me off all artificial sweeteners, most sugar, and did a detox diet. I'm going to go off Topamax totally this week.

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Reply 6 months ago on Apr 24, 2009 by brbarb, #19174

migraines can cause facial numbness, that happens to me sometimes, though not quite to the extent yours was. Not sure if it was the Topamax or not.

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Reply 5 months ago on May 14, 2009 by smaashley, #19840

I have been taking Topamax for four months. I also have alot of side effects; difficulty concentrating, can't spell, can't do math in my head, tingling in hands and feet, hair is falling out.... Before I started taking the Topamax, I was prescribed Nadolol for my migraines along with a couple of other drugs. I, at the time, didn't notice any side effects from the Nadolol. At some point I got mixed up with my medications and stopped taking the Nadolol until after I had been prescribed Topamax for about four months. My first day taking Nadolol (which is today), I started having trouble breathing and was having right-sided chest pain. I'm not sure if is the combination of the Topamx and the Nadolol or what.

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Reply 5 months ago on May 16, 2009 by brbarb, #19867

my breathing trouble started about a week after I started the Nadolol - before that it was just a dry cough. I think the combination of the two is what did me in, and even though I stopped taking the Nadolol it didn't get better. The doctor can tell me whatever he wants as long as he wants, I still believe it was the drugs that made me sick. Notice how many people on this board say that their doctors told them their problems were not from the Topamax. Clearly they are uninformed.

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Reply 2 months ago on Sep 01, 2009 by birgitta, #22664

Hi, Brbarb. :) So glad you posted this. Yes, the docs are quacks! (Some are, anyway.) I've only been on Topomax (or should I say Dopomax?!) for a week. 25 mg. The first 4 days I had a raging headache, not a migraine, but a headache. (And didn't have a headache until I took the topomax!) I started taking it because for the past 2 years my migraines have been so severe, there just aren't words for the pain I endure. I've grown to ignore them- I have to. Migraines that would make grown men cry for their Mamas- I'm out grocery shopping. (Well, because I have to.) But on day 5 of taking the med. I could barely breathe. I have to struggle to breathe. It's as if my airways are closed off & I have a sinus drainage going on but strangely it's dry. (??) My whole sinus cavity is cry as a bone & I'm sneezing...my head feels like it's in a pressure cooker. And that's just 25 mg! I'm thinking I may be allergic to it, but sheesh..at this rate I was suffering less with a full blown migraine. (almost)

I don't want to wait until my hair falls out, or my feel fall off. (etc. etc.)
I think I'm going off of it & drink more oolong tea & get more exercise!
Smile more. ;)

Thanks again for posting this!

You're not crazy.
THEY are. (docs)

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Reply 2 months ago on Sep 03, 2009 by adertiff, #22725

I am a 26 year old female and have been on Topamax for about 1 month now. I am relieved in a way to see that some others have had some of the same side effects that I have and yet have had positive results with this medication. I have tried so many other meds in the past without relief and now am a single mother of a busy 4 year old and work as a 911 dispatcher so I also can't afford to be tied down with a migraine every day of the week.
So far I have had a LOT of the tingles in my feet and hands, and the occassional confusion and forgetful spelling (thankfully I have great co-workers that understand my words that get mistyped and tend to fix them for me when needed LOL)!!! I have had some of the shortness of breath of tightness in my chest, but it also is minor enough that I am not sure if it is the medicine or if it is allergies :)
I still have headaches 2-3 times per week, but since starting Topamax have only had 3 actual migraines, and my neuro has said that those numbers should continue to drop over time as I continue the med.
I do wonder if any of you guys ever have visual changes or pain in your eyes??? By visual changes I just mean occassional fuzziness or flashes of light different than that of a migraine, or sometimes I will see what appears to be something out of the corner of my eye but when I look there is nothing actually there. It kind of freaked me out the first couple of times, now I know that there is nothing there, but I don't know if other people see this or maybe I am just crazy!

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