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50 Side Effects posted for Topamax

September 28th
2009
2:05 PM

I started Topamax over a year ago and titrated up slowly, 25 mg a week until I got to 125 mg a day, split dosing. I was started for migraine prophylaxis. Once it kicked in, it did an amazing job of keeping my headaches away. But, here is something really important: if you are going to have surgery, there are contraindications with Topamax and anesthesia. No one either knew this or told me this and I only found out weeks after I went through a really lousy experience. What I believe happened is that the combination threw my body's pH balance off. I felt like my insides were burning and it was only at that point that I started to experience the severe diarrhea and weight loss, fatigue, and general malaise. It lasted for weeks. All I could figure at the time was that it was just taking me a really long time to recover from my surgery (ovarian cyst removal and unilateral oophorectomy), but that didn't make sense. I felt like I had a horrible flu for weeks. I kept seeing my doctor saying something was wrong with the way I was healing (ie, i had an infection or something). Anyway, this eventually stabilized as I back off the Topamax. I was so weak that I didn't even realize the memory issues or word finding problems, but when I started to feel better physically, I did notice those. That REALLY bugged me. I like to be sharp. So, I tapered off. About 1.5 months later, my headaches started coming back. I decided to try Topamax again feeling that now I understood it much better and could watch it more closely. Maybe this time I could ride out the side effects. Well, this time several months passed at the same dose. My headaches were still there and I had no side effects. We upped the dosage. Still having headaches, but no diarrhea, no weight loss (in fact, weight gain of 15 pounds over the last 9 months since last Topamax round), no real problem with word finding, etc. Up to about 200 mg daily by this time. It has been about 6 months and I have started tapering down and about to give up, down to 150 mg daily right now. NOW, here is something interesting: I just have another surgery, but no anesthesia. It was oral surgery. I did, however, have to take a round of antibiotics. It seems that this round of antibiotics has kicked the cycle into gear because I started having gastric problems, perhaps because of the antibiotics (although in the past, I have not had problems with antibiotics before, ALTHOUGH I did have to take them last year with my in-hospital surgery), I don't know, but I have finished the round of antibiotics and I am still having diarrhea. My appetite is suppressed, and I have lost 5 pounds in this last week. Many people say you cannot lose weight if you stop Topamax and restart it later. That is an interesting. I wonder why that is. Topamax is such a strange drug. Why did it not work for me the second time I took it, or at least for 9 months? Is it just now kicking in with its side effects as the result of upsetting my gastric system? Will it start working now for my headaches, too? I think I will continue to taper off or maybe see if I can prevent headaches on a very low dose. Oh, another interesting thing: I found the first time I took Topamax, it made me feel energized. I found that this time, it made me feel the opposite. I sleep a lot more and feel more sleepy during the day.

-- By florestan | Reply | (1) replies | Private Message me

March 23th
2009
7:22 PM

I have had all 5 types of migraines for 30 years. It seems I have had them longer then husbands : ), my children thought it was normal to "go to the ER" or to be in a dark room. I became very good at overcoming the incredible pain and pressure, rising to the top in my profession and being a single parent. I applaud my neurologist & his compassionate assistant. I toughed it out, ultimately, until Topamax came available. I still have migraines. I still must manage all my triggers. And people still don't get that migraines are all consuming and to overcome a migraine to attend a function is huge. However, I am currently, as others, backing off of several medications in a safe manner. My vision is not consistent. I tend to not play games, or read out loud as I cannot see what I used to. When I get up in the morning, my feet are sore. I have a dry mouth when I am speaking. My hands tingle and my ears ring. My gums bleed from pressure. It feels like I have a sinus infection. I have a constant headache and muscle soreness and weakness along with joint pain and low back pain. Having been on 75 mg Topamax since it came out, I no longer have the benefit of weight loss and weight gain is suddenly upon me--suddenly!! I do not wish to influence anyone in his or her choice. Personally, I am considering titrating off Topamax to see if any or all of these health issues change for me. I, too, have memory issues that are not associated with menopause. The problem with the list of side effects is that they could be present with other drug therapies or conditions. Once I have isolated the problems to Topamax, I will then have to weigh the cost of migraines vs. fewer migraines. I must remember to manage all triggers, as I hope others will also. I hope to be migraine free, with the benefit of good vision and better rest. I desire this for the readers of my post as well. Blessings.

-- By wildgoose3 | Reply | Private Message me

December 23th
2008
2:58 PM

I have been on 50 mg topiramate for a while now. It is part of a 5 drug mix used to address bipolar, anxiety and adult residual add. I take the topamax in one dose at night. When I first started it, I DID try to titrate up to at least 200 mg, but never made it past 75 mg. I took it in the morning, and, after about a week and a half on 75 mg, somnolence kicked in big-time and I was a zombie.
My Dr. and I kicked it back to 50, and moved it from a daytime drug to a night-time drug, and I have not really have problems since. It certainly still seems to have some mood stabilizing benefits for me, even at the relatively low dose I am taking. It also has helped with the awful headaches that I used to get far more frequently than I do now. I do not think that I ever received a weight benefit from it, but it seems that most people generally do not at this dose. Late last year, I had to switch to a different physician. Sadly, the new practicioner is no replacement for the former.
I have gained weight over the past few years for a variety of reasons. A somewhat sedentary lifestyle, social and emotional eating, too frequent consumption of caloric alcohol, (once a week or so,) as well as weight-gain contributory atypical anti-psychotic or mood stabilizing drugs have all helped put me in an unpleasant location on the BMI chart.
I have been enrolled in a hospital-associated, medically-monitered weight-loss program for several months and have een successfully losing weight. My new psychiatrist felt that an increase in topamax dose might be beneficial. I am going to attempt moving up to 100 mg, provided that I feel the change is warranted, and that the side effects do not kick in as before. The aforementioned practitioner has a tendency to be pixelated with respect to the approach towards a patient. This person does not seem to put much effort into reading, absorbing, integrating and using patient file information very well. For instance, this physician would miss the importance of the fact that topamax can cause an acidosis condition, and that the hospital diet typically intentionally puts patients on a diet that causes ketosis. These two conditions together would be unpleasant, to say the least. The doctor never even asked what type of diet I was on....
This is not the first time such an oversight has been made on the doctor's part, and it is my own educational background and awareness that has kept me from being the victim of the doctor's inattention and carelessness, not to mention probable nasty outcomes had I followed the instruction without question.
I am fortunate to be educated about this stuff, and so I do not have to rely on the practitioner's judgment alone. I am shopping for a new one, actually.
As it is, I am not on the hospital's most common diet, the ketosis-inducing one, and so I am not worried much about the potential acidosis due to topamax.
( I am not on the ketosis diet because I am aware of the problem such a diet can cause for bipolar disorder management, independent of any drug interactions. I read about this, consulted with the dieticians and weight-loss center physician, and chose a non-ketosis diet. I have been losing weight at a regular pace. the speed of loss is slower than with a ketosis diet, but safer for me. All it demands is better behavior on my part, but that is life.)
But I want to communicate a few things here.
First, I see that many people suffer not only from adverse effects, but also from arguably adverse treatment by physicians who either are not aware of a drug's information, are marginally aware of it, are not aware of their patient, or some combination of the above, or perhaps they just don't care.
There is also a clear tendency for many docs to balk when the patient's experience doesn't fit the prescriber's leaflet, resulting in dismissal of the patient's concerns and experiences, and may lead to arguably unnecessary tests and diagnostics rather than discontinuation of an offending drug.
Be aware that such treatment is indicative of a problem with your doctor, and the relationship between the two of you. Don't allow yourself to be tossed off that way, especially with no resolution to your problem; get a second opinion. Second, topamax is a specialty drug, and should be prescribed by, and treatment should be monitored by, a specialist. namely, this specialist should be a psychiatrist or neurologist, depending on what you ar taking the topamax for. Even if topamax had been prescribed for you for migraines or weight loss, the doctors most likely to be most educated about its main and adverse effects are psychiatrists and neurologists. There are a very few internal medicine or family practice docs who might be "with it" enough to be following the literature on this type of medication. A sub-point to this is a suggestion that education and information can only help you, and you should seek it out. Don't just read about a diagnosis, or about adverse effects, though. You'll run the risk of getting "medical students' disease", finding that your symptoms seem to match the disease descriptions for all manner of ailments. A general education is actually more useful. Text books can be a great help. Where you find something in a text is a bit advanced for you, try a more elementary text. Texts are available at libraries, so you don't have to buy them all. But reading up on psychology, understanding a little about metabolism, having some familiarity with medical terms, such things can save you from the results of a doctor's distraction, disinterest or disdain. It can also be immensely comforting just to understand how one's body works, and how drugs work within it, when one must face a disease such as Bipolar, Depression, Anxiety, Diabetes, etc. College intro level classes are thorough enough to demonstrate how a 25 mg pill can cause such disruption or such relief in a person's life. Eating certain things, and at certain times, sleeping well or poorly, ambient temperature, hygiene, reading habits, ALL of these things can have a profound effect on a person's day-to-day life. All of those factors, and more, can effect the physiology of an individual. It is good to know a little about how the system works, the better to maintain it. Some pop-sci books are pretty good, too. "You: The Owner's Manual" for instance. But some may read such books and find themselves wanting more information, and this is where any number of college texts about anatomy and psysiology, neuro-physiology, psychology and physiology, metabolism, diet and nutrition, genetics, etc. will come in handy. For those with insatiable curiosity and a deep desire to understand and manage a given disease or condition, there are usually medical texts available specifically covering THAT condition. For instance, those with Bipolar might wish to read at least parts of the text Manic Depressive Illness:Biolar Disorders and Recurrent Depression by F. Goodwin and K. Jamison. This text covers most of the meds those with bipolar would be interested in, it surveys the research done to date, what is known about combo therapies, adverse effects, including hair loss and weight gain, it covers patient experiences, as well as physician descriptions. One of the co-authors, for those who do not recognize the name, is not only a top researcher of affective disorders, but also suffers from manic-depression. The text is almost a good a friend as a patient could have, especially if your own physician is lacking in knowledge about your condition.
Third, several posts express a desire to report adverse effects, as well as doubt that a given personal physician would do so. If you have suffered from adverse effects, and want to report it, you do not require your doc, family practice, psychiatrist, or whatever type, to do so. There is a government website available for the reporting of adverse effects, and it is available to consumers, too. The report data goes to the FDA, which sorely needs such reports, as the drug companies are less than honest with THEIR submissions of information, and the dissemination of research data leaves much to be desired when it comes to the publication of information that is less than glowing about any given drug. I believe that you can find the reporting website on the FDA's site, or some link there. I wish I could recall it here for you.
Fourth, topamax, like most complex drugs for complex diseases and conditions, will affect each person very differently. Some will have little or no problems with adverse effects, while others will find the drug to be anywhere from uncomfortable, intolerable to damn near, or actually fatal. fatalities have occurred with topamax, as they have occurred with almost all, if not all, drugs. There is always a risk for adverse effect, sudden sensitivities, allergic reactions and other wonders and horrors of medicine. This is the nature of it. You have a bad reaction to anything that your body comes in contact with at any time for reasons we do not undrstand and can not even yet identify. Your typical cough syrup could, without warning, suddenly produce in you a rash that could kill you. But the conditions and diseases that drugs treat can be just as awful, and leave us with no option but to take the drugs to survive. Most experiences are not so extreme. For those that are, the greatest sympathy. But just because one had a bad experience with a drug doesn't mean the drug is wholly bad, evil, toxic, or should be banned, or that the drug company should have a class action lawsuit lobbed at it. Drug companies are NOT, in general, being fully honest with their disclosures. But banning a drug because some people react badly doesn't address this, nor does it do any good for the segment of the population that benefits from the same drug with little trouble. I have had very bad experiences with some drugs, but do not feel that these medications should be banned. i know other people who depend on them, and I would not deny them just because I lots hair, gained weight, experienced akasthesia, etc. The individual reaction to a drug requires, sadly, at this time in history with our very limited unerstanding of pharmacokinetics and pharmacodynamics, individual trials. And those trials will often have their share of troubles, too. That is how we find out what works for us and what does not, and that is where we re right now. Maybe in two or three decades, with better understanding of genetics, genomics, epigenetics and related fields, we will be able to customize our cocktails with less trial and much less error. I would love a day when a blood test will tell us who will benefit the most from which drug while having the least adverse effects. I hate going through trials. right now, what I am taking is working without giving me problems. For that reason alone I may decide to NOT try and increase the topamax as my current psychiatrist would like. After all, she wants to increase it so that it might help me lose more weight. I am already losing weight without the increase, and the increase might bring adverse effects, or the additional topamax could simply destabilize my currently very stable mood. The last would then require me to go through another dreaded drug trial to find a new cocktail, a mess I have not had to endure for nearly two years now. I do not think that, for me, the additional POSSIBLE weight loss benefit is really worth the possible adverse effects. The doctor is rather casually experimenting with my life, probably curious to gather more data about topamax's efficacy as a weight-loss drug. I am not so sure that I want to rock my boat. I get the benefits from topamax that i am interested in, mood-stability and headache prevention, from the 50 mg that I already take. I'd rather not exp-erience what most of the posts here have described for adverse reactions, and I most especially do not want a rather casual, needless sort of medication modification to set off a chain of events that results in mood destabilization. That said, I am glad to have topamax available for me to take, as I am fairly sure that it contributes to my cocktail, turning down the amplitude of my highs and lows at a mere 50 mg per night. I would be sore to lose it, and do not want it banned. But I do not think I would want to take more than I am taking now. The somnolence I experienced in the past at 75 mg was not comfortable, and was the type that prevents any meaningful work from being done, anything from reading to laundry to following a conversation. I would not like "pins and needles." I hate it enough when I hit my elbow or when my foot falls asleep! And I really hated akasthesia that I experienced when I tried ability, a drug that made me right sick, but that I know absolutely saves others from oblivion, like my grandmother. I hate the adverse effects, or the experience of them, but I do not hate the drugs. and while I may dislike the drug companies, it is not just because drug have adverse effects, it is for the more perverse behavior of the companies themselves. One still has to try and be, if not positive, rational about one;s experiences. It is healthier to see experiences with drugs as learning experiences. Not everything in life is fun, but try to make everything have some value in experience.
I wish you all better days, and calmer, too. May you all find good and caring doctors, and develop excellent therapeutic relationships with them. May you know your diseases and conditions, own them, control them and thus conquer them.

-- By iuridaen | Reply | Private Message me

September 19th
2008
9:42 PM

I was on topamax for about 2 years. I took it for frequent migraines caused by my sinus's. I had all the normal side affects but got used to it after awhile. The only one i didn't get used to was the hair loss. During this time I started allergy injections and now i'm up to my maintenance level. So i decided to ween myself slowly off the topamax. I have been off for about 2 months now and I have been fine on the headache side, but i have started to get other symptoms (i think withdrawal symptoms). They have progressively gotten higher in number as the days go by. First my hair loss has not stopped. I gained about 10-15lbs, I am edgy and climbing the walls all day. I have a really hard time relaxing. I recently developed horrible insomnia, and about a week ago i started having digestive problems including water retention, bloating, gas, irregular bowl movements, and acid reflux. And I've recently had bouts of tightness in my chest and throat which make it difficult to breath (lasts about an hour). I didn't have any of these symptoms while i was on the topamax (except the hair loss), nor did I have them before it.
I am seeing an endocrinologist in a few weeks to make sure nothing on that front is causing any of this, but i really feel it's from taking and going off the topamax. If you can find other ways to deal with your migraines, DO!

-- By fornickels | Reply | (4) replies | Private Message me

August 18th
2008
9:19 PM

i have bee on topamax for 2 years started out low amounts now i am up to 100mg at night and 50mg in the morning and i will take 50mg when needed for a headache if i get one thru the day . that is all i love it. no more in the bedroom all day missing life sick. no more head splitting open just shoot myself painful headache. i feel great and i function raising three boys two teens and one pre teen. im not saying that they don't give me a migraine but i can control them thanks to topamax. i hope it never loses its effectiveness because i will lose my piece of mind. oh before i go ,weight gain ! i am an semi-active person. i did not gain the weight at first but as i got older i did . but i work it out and keep going. i would rather 10 lbs more on my tush than a migraine busting my head open. so work out a bit ,go for a walk ,choose a good eating regimine, and lose your headaches.

-- By bubbles34 | Reply | Private Message me

April 15th
2008
11:59 AM

I started taking Topamax 3 weeks ago, 25mg for the first week then up to 75mg starting week 2. I am also on Effexor,150mg 1 per day.. I feel good and have had a loss of appetite. My thinking is a little fogged and I must concentrate a bit harder. I started taking this as a pain medication and it works. I am also overweight and know for a fact I've lost. I find myself eating better choices and much smaller portions. My moods are good and I like this medication. Thanks for letting me share ! (:

Laurie

-- By laurie42 | Reply | (2) replies | Private Message me

February 21th
2008
9:45 AM

I am also experiencing hair loss and have been on Topamax about 2 months. I had no idea this was a side effect. I initially lost weight which was wonderful, but then my weight dipped so low my family and friends thought I was anorexic. I was finally wearing a size 3 pants. I normally am in size 8's. I am on it for bi-polar and to help with binge-eating. But I cannot deal with the hair loss. I don't think that being skinny is worth losing my hair for. No other meds have helped my depressive moods without making me gain weight and at this point I just don't want to take any drugs. I would rather try some therapy...that has become less common. The doctors just want to give you a pill now-a-days.

-- By cc1170 | Reply | (1) replies | Private Message me

January 6th
2008
10:50 AM

Haven't seen anyone mention any sexual SE's but I know I'm not imagining this. It's not a lack of libido but, it's as if my wiring has been disconnected.
A lack of sensation. Major bummer. I can live without sodas but not this!
That was my major reason for getting off the Topamax. My doctor was very incredulous about this being a SE of the Topamax but he didn't argue with me. I came across this site just looking to see if anyone else had experienced this. After getting here I can not believe all the things I have been brushing aside as due to something else. Stomach pain and diarrhea, severe GERD, depression and morbid thinking, oh and my gosh the trouble searching for words and connecting thoughts--I thought I was loosing it, shortness of breath and weakness that I was attributing to weight gain! I have only been on 25 mg a day for 6 months. The migraines did improve and the paresthesia in my hands subsided over time. But all this other crap that has slipped in and I have been passing off as aging or just wondering what else was up with my body and mind. Sheese! Thank goodness for this site! I am tapering off this crap-- and I feel like crap. Weakness and fatigue and a weird pain in the side of my head that is not a headache exactly. I hope I'm back to normal soon, this is awful!

-- By dodie | Reply | (3) replies | Private Message me

December 28th
2007
8:04 AM

I am going to begin taking 25 mg of Topamax at bedtime tonight. After reading all of these posts I am a scared. I was prescribed Topamax for bipolar disorder. I am currently taking Lamictal as well. I always gain weight on psychotropic drugs and need to lose about 15 lbs (all of which I have gained over the course of being on Lamictal). Any who-my psychiatrist said that this medication may help counteract the weight gain I have experienced. Although I do not consider my self an overeater now. I do hope that it helps me to not like the taste of sodas though. I am addicted to Mt. Dew and caffeine, which I wouldn't mind stopping. Anyway, I am supposed to increase my dosage by 25mg per week until I reach 75mg per day. I am also supposed to go back and see my doctor before I increase the dosage beyond 75mg. I just hope I do not have the horrible side effects I have read here. Some of them I know I can deal with especially if they are temporary but the anxiety/depression/shortness of breath/lack of energy/morbid thoughts are the main ones that concern me. My psychiatrist said that with this medication I should drink plenty of water. He said that it could cause headaches and other side effects if I'm not sure to drink plenty of fluids with this medication. So, I am planning on hydrating myself really well today before taking it this evening. I'll post back and let you know how the side effects are going. Is anyone else on a combination of Lamictal and Topamax or on it for bipolar disorder? I'd like to hear more of your experiences.

-- By cmbandrwb | Reply | (7) replies | Private Message me

November 29th
2007
10:34 PM

I have been taking Topamax (25mg twice a day) for about 2 years now and it has greatly improved the frequency and intensity of my migraines. (I used to have a minimum of 4 migraines per week, and though medications such as Immitrex and Zomig often work, it's still hard to function properly when you have so many headaches. The Topamax has brought that number down to about 1 per week.) The side effects are not too bad, but I am freezing all the time and very tired - complete lack of energy. I almost feel like my head is in a cotton ball, like everything is just slightly fuzzy and I'm a bit disconnected. I wouldn't call it feeling stupid though... I am still able to do my job well; perhaps a slight lack of concentration. Some dizziness, but nothing serious. I have recently started experiencing weight gain, rather than weight loss (not sure if this is related to the Topamax). When I first started taking the medication, I also had that horrible numbness in the tips of my fingers, but that went away.
I wouldn't want to give up Topamax now, because I just can't go back to having that kind of pain and vomiting 4 to 5 times per week.
Good luck to everyone!

-- By cdall18 | Reply | Private Message me

November 24th
2007
10:41 PM

I have been on Topamax for two years had most of the side effects I am used to them. The only thing is I am freezing all the time . Anyone have this?? I am cold all the time!!! I also experiance, in the summer, the no sweating thing, that makes me dizzy in the sun, I have to stay under an umbrella at the beach etc. I never had to do this , I was always a sun worshiper and could take it.

-- By reginajfk | Reply | (2) replies | Private Message me

November 5th
2007
2:11 PM

I have been on Topomax for 2 years now at 200 mg. for mood stabilization. I was recently hospitalized for my depression and they upped my Topomax dose to 400mg saying it was the "therapeutic dosage". I went into the hospital weighing 116 pounds and I am 5' 6" tall. I started having diarrhea within a couple days. By the tiime I left 2 weeks later I had gone from a size 4 to a size 2. A month and 1/2 later I had lost 15 pounds, had severe abdominal pain everytime I ate, diarrhea every morning, nausea, and had absolutely no appetite.

My psychiatrist insisted it was not the medication and I went to a gastroenterologist for the full workup- ultrosound, colonoscopy, endoscopy and surprise surprise they found nothing. My Gastro doctor concluded it must be the meds so I started backing down on the Topomax and already the diarrhea has stopped. I am at 250 and up to 101 pounds now. I am taking in over 1200 calories a day but I still can't seem to gain weight. My doctor still doesn't believe it's the Topomax but it all points in that direction. Instead they insist I'm just not eating enough But I make sure to force myself to get down 3 meals plus 2 ensures and some snacks. I still am waiting to get some appetite back. I know some women would love to be in my place to have to try to gain weight but I feel like I'm dying all the time. I have no energy, I can't even get up in the morning to take care of my kids. My fiance left me because he got so fed up with my "sickness" and thought it was all in my head. I have my mother living with me now just to help me take care of my own children and it breaks my heart that I don't have the enery to play with them. I can't see my psychiatrist for 2 more weeks so I am taking my level of medication into my own hands which I know you are not supposed to do but at this point it's that or lie in bed feeling like I'm just wasting away.

-- By jif0126 | Reply | Private Message me

September 29th
2007
5:06 PM

I took Topamax about 6 years ago for migraines, and experienced no side effects. Just started it up again 3 days ago, and I feel like I am totally drugged and my head is spinning, can not drive, can barely hold a conversation, only started with 25mg, and can say that each day I feel a little better, but the only difference this time is that I am on Lexapro and my Dr. said the side effects could be worse till I get used to it..anyone else take this combination? And how long till I can function again?

-- By ka527 | Reply | (3) replies | Private Message me

September 28th
2007
11:36 AM

I just started taking Topamax about 2 1/2 months ago -- am up to 50 mg now, and had hit 75 when the side effects became so bad that I went online and discovered that my neurologists had been pretty lax with their advice. They told me that Top. was "a great drug for migraines" and that I might "lose a few pounds," and have "some memory issues at first" but that was it. I believed them and so didn't research further.

20 pounds later (I HAD been on a diet, and thought I lost the weight myself) I started experiencing sore throat in the morning and stomach pain (acid from Topamax). I thought I had appendicitus. So I hit the boards. Weight loss was from theTopamax (and my diet coup goes out the window) Appendicitus --probably not. Oh, also I can't be relied on to remember words or sentences or thought structure; or how to move thoughts into words. And it's not like the words are on the tip of my tongue, etiher. They are gone, as if they never existed. The oddest thing! Professional hell. Hair has yet to fall out. I'm going to have to wean myself off, I suppose, and get ready to ream out the neurologists. If I can remember their names or where they practice....

-- By arilew | Reply | (1) replies | Private Message me

September 16th
2007
7:55 PM

I have been taking Topamax since 2002 for migraines. I started out slow with 25mg at night for a week then 50, 75 then 100mg after one month. The following week I was suppose to start 25mg in the morning. I received headaches from that. I only stick with 100mg at night and have not suffered from a migraine since. Unless I am hung over. I did get the tingling in my hands and now I hate soda. Which to me is a good thing for all the sugar it has in it. However, when my script runs out and it takes me two or more days for a refill, I get extremely sick. Must be a withdrawel thing. So do not miss more than one day.

-- By jsorokach | Reply | (3) replies | Private Message me

March 31th
2007
6:34 AM

Hello.

I have been taking topamax for bipolar II disorder. The first week or so, I experienced some very unpleasant side effects. I would become very disoriented while driving and get lost in locations that had previously been very familiar to me. I would also lose track of my thought process mid-sentence. An avid runner, I was unable to exercise for about a week. However, these side-effects have since subsided. I do experience a decrease in appetite, which is fine for now, but I'll have to see how that pans out in the future.

One thing I'd like to point out is that I would imagine topamax to be very unpleasant for somebody who does not have a mood disorder. I feel that it truely restrains my impulses (I suffer from impulse control disorder), and it has worked wonders for me in terms of my mental illness. I believe that topamax is a great alternative to some of the other medications for bipolar disorder in terms of weight gain. On the other hand, I think that those who do not require psychiatric attention would be better off with a drug that does not serve as a mood stabilizer.

That's just my opinion. Good luck!

-- By d0ra | Reply | (1) replies | Private Message me

January 7th
2007
5:31 PM

Hi-new here and new to Topamax! I am taking Topamax for BiPolar. I have tried a dozen different drugs and they all seem to make me gain weight. Thsi seems to not have that listed as a side effect. As a health careworker I am very dedicated to being on top of knowing the side effect of my meds. I have been having issues with hair loss and thought it was again issues with my thyroid but must have been the Depakote-still hasn't stopped-guessing it's not going to huh?
Anyhow, I have tingling in my face-anyone else??? I have found that soda tastes HORRIBLE! Not such a bad thing though! I have found that my appetite isn't too vast either.
Anyhting I should be seriously worried about???

-- By marguritamomma | Reply | Private Message me

November 10th
2006
8:27 AM

I have been on Topamax for 6 years and the side effects that I have experienced have been dry eyes, dry mouth, muscle/joint aches, chest pain, memory problems, body odor, fluid retention, weight GAIN (not loss), head aches, mood swings, hallucinations, blurred vision especially at night, tingling/burning of the extremities, and the constant feeling of never being able to get warm. I was on 400mg twice a day, and since the hallucinations, I have been cut back to 100 mg twice a day. My headaches are worse, and I am now experiencing hair loss and hair breakage.

-- By doggytails | Reply | Private Message me

September 29th
2006
4:08 PM

I have the tingling fingers and feet and face tingles too. My skin feel slimy and so does the inside of my mouth. I feel like my breath stinks and I have acid reflux I also seem to be the only person who seems to feel bloated and water retentive and has GAINED weight even though I don't have an appetite. I agree that I am moody, but I don't feel well Last night I had the worst night. I didn't sleep at all and I just hated everyone. I never felt so angry in my life and just wanted to yell and scream all night.Yet I was able to pull myself out of it and realize that I was irrational,thank goodness. I had a migraine to boot so the pain seemed intense and all the suffering with the side effects of the Topamax futile. I have never felt so depressed. I don't know if I should pack it in and go back to Elavil. 8 years of that. I am so tired of pain and pain management that just doesn't seem to work. Any answers out there.

-- By flykim2 | Reply | Private Message me

June 24th
2006
11:29 AM

I started taking Topomax about two months ago for NDPH, a form of daily migraine..I have been on a number of drugs, the latest being lyrica, which resulted in bloating, weight gain and lethargy but finally gave me some relief from headaches..The addition of topomax has helped relieve them further. At first the side effects were brutal! Dizziness, sleepiness, stupidity, slight paranoia ..dis-connect from reality...I almost passed out cold several times and friends said i turned white then yellow...not good...I had this wierd thing happen where I totally forgot what I told a couple of people and vociferously denied having promised to do something for them, only to remember a few days later that I actually HAD promised to do it for them..I called them with abject apologies, blaming the drug..but was not believed. So, I lost a few friends PERMANENTLY due to topomax..I have never had a blackout but it sounds like one, except that I later remembered the event..My eyes have been super dry and irritated. The only lasting physical side effect is a horrible one. I hate to be indelicate, but there is no way to describe this in a pleasant manner...Since the day I started topamax, I have not had a normal bowel movement..I have nothing but what i would call "explosive diarrhea" morning and night..I have to wear those awful shields to bed at night now to keep from soiling the sheets..I am hoping it will go away and don't know if I should see a doctor or what. It atarted when i started the drug so must be related..I hate to stop taking it as it has helped my migraines a lot, and also the bloating..I now take 75mg a day. Any one else experienced thisz?

-- By sheperd48 | Reply | Private Message me

May 1th
2006
10:11 AM

I started Topamax about a week ago. Also after starting Depakote which made me gain weight. They stated they would start me on the Topamax due to help with the migraines that I have had all my life and weight loss. I had a recent MRI which stated that I have been having mini strokes. I am a 30 yr old single mom.. Who now has been at home for a week because I feel so ill. My doctor has me taking Topamax at night and I am not sure if anyone else has had these problems but I am really confused between dreams and reality. I wake and think that there are things there. That really are not there at all. Then because I am scared to fall asleep because of what I might dream of since they are all nightmares and I cant seem to get out of them even when I am awake. I feel like crap the next day and have a migraine. Due to lack of sleep. I also deal with Fibromyalgia and Chronic Fatigue. I tell the doctors that I am always falling alseep at work. All the meds they give me make me sleepy anyways on top of that. I work 2 miles from where I live and I cant make it sometimes without falling asleep at the wheel. I do not understand why these doctors do not see fit to help me more. This is all affecting my job and life...

-- By mysilentcry | Reply | Private Message me

February 9th
2006
7:34 AM

I am on now 400mg of Topamax a day. I take it for epilepsy. I have some halluciations but I ignore them. I lost over 30 lbs. The weight loss was needed because of a seond medication I am still currently on that made me gain weight. The Topamax gives my legs and neck the worst pain and mucsle achs... I get blurred vision. I will be trying to talk and my speech will start to slur or I forget words that I will need help remembering that are right on the tip of my tongue. My short term memory, that is not so good, I forget things most of the time. The medicine is for migrane relief but since I have been on it I have had the worst headaches ever! Along with the rest of you I do have gas problems also......The only reason I do not get off this stuff is that I have tried over 10 different medicines that didn't control my seizures, this does. I have had all the tests, Just went in for an MRI, what else can we do?

-- By babybleus | Reply | Private Message me

January 17th
2006
1:42 PM

I have been taking 25 mg Topamax, 4 doses per day, for 5 months now. I am taking it for nerve damage in my ankle. I have previously taken Neurontin had to discontinue because weight gain.

I have lost 10 lbs and have trouble sleeping at night. I also have short sttention span.

-- By earnestandroline | Reply | Private Message me

July 27th
2005
9:54 AM

i began taking topax in oct 2004 due to migraines and seizes and have a serioues famliy history of brain aneurysm. I started taking smail dose 25mg at night working my way to 200mg a day. My head acheah where a little bitter and the seizes werent as strong and i could felt the medication working to control them . i have always suffered from depression and the medication control my mood i was at first happy. i work at a very stressful place and as my job became overly stressful during our yearly audit time i couldnt cope and i missed my does of medication i began to get all of side effects. weight gain : ( when at first i was losing a bit) mood swings, confusion, i couldnt put my words together right and my thought pattner was off. but, and during that time i wasnt sleeping and one of the things i enjoyed about topmax was the that i could finally sleep at night. i would call my doctor and he would add other things to my medication regain such as vim c for the tingels , iron, and for the headaches i was getting very strong pain medication which i wouldnt take. i was becoming very depressed and had to stop the medication so i did for a about 3 months but i realized that i do need it and now am back on it and try not to miss my doeses which cause my problems, but im facing the mood swings right now but all medication have side effect you just have to make a personal choice what your gonna choose for ou what most important. for me in 34 single mom of a 12 and a set of 5 year twins and ill all they have and so i have to ensure that im at healthly as i can be because they need me.so good luck

-- By pstarr27 | Reply | Private Message me

July 16th
2005
8:26 AM

minor tingling in feet, appetite suppression (which for me is good since I'm about 100lbs overweight as it is and gained weight on Seroquel), minor boughts of memory confusion/loss), TERRIBLE tastes with carbonated beverages (which again, for me, is a GREAT thing)..

-- By wreath_of_barbs | Reply | Private Message me

July 12th
2005
8:11 PM

I have been on Topamax since 5/2004 for depression. Currently down to 100mg/day

Negative side effects:
Memory loss
Aphasia
Weight gain (I actually began binge eating and gained 60 pounds on Topamax after having lost 120 pounds on atkins -pre topamax)
Sleep irregularity
Irritability
Leg cramps, stomach pain
Lethargy

Positive side effects
No more migraines, but I am not sure I have a brain left that can feel pain!
The depression is not crippling, but certainly not cured.

-- By mday | Reply | Private Message me

March 14th
2005
11:52 AM

Migraine Use: Fingers were tingling intensely 1st day AM after 1st PM dose of 50mg. Continues, though not every day and has spread to feet. Recently went off nasal sprays for allergies because of light nose bleeding. I've had a cold, too, but nose bleeds ever since starting this med! Wondering if there's a connection. Only other time I had nosebleeds like this, I was pregnant! Gained weight on Lexapro, hoping to lose it on this!

-- By mscheapskate | Reply | Private Message me

June 1th
2004
9:05 PM

I have experience lack of concentration, weight gain, lack of motivation, inability to want to focus on my tasks at work...tingling in my hands and feet, twitching under the eye (tends to drive my co-workers crazy... they ask me if it hurts

-- By eicart | Reply | Private Message me

May 31th
2004
9:06 PM

I had to laugh reading some of these.

I have been on Topamax for about a year @250mg daily. I have actually gained weight over this last year. I think it might have to do with other medication I am on, and the birth control pills. And The Memory Thing, oh my goodness... I swear I became more stupid. I have forgotten basic math and I have a degree in Finance. I have a hard time remembering basic times tables!!

And oh I hate not finding the right words. It is irritating, when you know what you want to say, it is like right there on the tip of your tounge and you just plain cannot get your brain to get the mouth to say it.

I do have a question for those who have been on it a long time? Anytime the medication level was changed I have notice an increse in sympotms and then they would taper off. It does not matter if the meds were being increased or decreased, there would always be more speech and memory problems. Anyone else have more issues when the dosage is changed? Also, has anyone else had weight gain?

-- By arilyn78 | Reply | Private Message me


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