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!
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 | (6) 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!
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???
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.
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
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.
-- By fornickels | Reply | (4) replies | Private Message meI 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!