Topamax and doctors

I've been on Topamax for almost a year. I've had auras for years which were misdiagnosed as hypoglycemia episodes, then started having grand mals after detoxing from alcohol (I'm sober now), continued to have them in sobriety (I guess I messed up my brain from alcohol). I tried Tegretol but it made me groggy. Anyway, a few months into using Topamax I stopped sweating completely and got the numbness and tingling in my extremities, which drives me crazy. I also have trouble with urination, I've been put on water pills. I live in a desert climate and during the summer had bad problems with overheating, had to drink so much water that I had trouble with water retention and my electrolytes got messed up. I had no idea that it was the Topamax--the doctors put me through multiple blood tests, I discovered it might be the medicine by doing my own research online. I'm tapering off Topamax and trying the Low Glycemic Index Treatment to see if I can be off meds and not have auras because I don't want to be on seizure meds if I can help it. The withdrawal is pretty bad--anyone else have the problems with no sweating and wicked withdrawal?

I started right out 3 years ago on 100 mgs. and within a couple weeks migraines were virtually gone! I thought it was a miracle! Only slight side affects for a couple years and only an occasional migraine but not a three day long one. So, I figure, small price to pay for all that relief, right? Now, for the last 6 months or so I'm falling apart! My memory is just gone! Sometimes I'm afraid to leave my house because I'm afraid I'll forget my way back home! I can hardly concentrate long enough to put a meal together and it just took me 4 tries to remember how to spell concentrate! Thank Goodness for spellcheck! I've lost 42 lbs. that I can ill afford to lose and I now I have started to have these anxiety things that I've never had before. I feel scared and nervous and no idea why. I was on a couple of drugs for allergies, a couple for arthritis and a vitamin. I dropped everything except the Topamax and the DR. put me on a 1/2 mg. Zanax twice daily for anxiety which seems to do nothing except make me sleepy. Now it seems all these side affects have just bloomed and I have this constant ache over my right eye which isn't a migraine but never goes away. I'm afraid to just stop the topamax because of what I've read about suddenly stopping. Doctors are no help, they won't even admit there is a problem. They just wanted to check my thyroid.It was fine.

I have been taking 25 mg. at bedtime of topamax for the last week. I was prescribed topamax to end my chronic headaches. The last week has been very difficult for me. In just 7 days I have gone from being sharp, aware, motivated, focused and in control... to scattered, unable to focus, can't remember my pin # that I have had for 20 years, stop mid sentence because I can't remember what I was trying to say, unable to hold a conversation, unable to think clearly, unable to interact with my children. My family says I have turned into a zombie. I am not safe to drive and cannot work. I did not take my topamax last night and won't be taking it anymore. I would gladly have my headaches back if I could just feel like myself again. I had no idea it would affect me so negatively in just one week on such a low dose. (25 mg)

Be so careful before taking this medicine. My doctor didn't discuss any of these side effects with me, but I did research the drug online before I took it and was aware there were serious side effects, but it never seems that serious until you actually endure the side effects for yourself. The drug is not for me.

oh my God I wish I had read this sooner I thought I was going crazy! it seems like the doctors just don't know about the side effects of a lot of these drugs, because I have had ALL of those symptoms- the tingling, the muscle pain, the aches, the feeling of bugs crawling, the itching, the one I have the most now is pain in my arms and legs now to the point where today I cannot lift my arms past the front of my chest or over my head. So I barely stand the shower and barely get ready for work. When I told my doctor this last week, he said, hmmm, I don't know, lets just give it a few more weeks and see. I've been on Topomax for 5 weeks. I started at 25 mgs and worked my way up to 100 mgs slowly. Each time I add more mgs I have more EXTREME fatigue, and spaciness, dizziness, etc. My legs and arm and back pain did not start until the past 2 weeks. THIS SUCKS. But having migraines sucks too. I have lost weight. But I just don't know that I can live like this. The migraines are new for me, as a result of an accident I was in on January 26th. The side effects of the Topamax outweigh the pain from my accident. I might have reconsider taking this. Although I must say, this drug is the kind of medicine that definitely takes a while to understand how it will work for you. A lot of the effects will wear off. A lot of my spaciness or "Paula Abdul" moments as I like to call them, are getting so much better. I'm sitting at 100 mgs and really don't want to raise the dosage at all. I will talk to the doctor and see what he says. That's the other thing... doctors tend to give people too much or dont know how much to prescribe. Starting people off at 50 mg is too much. I take mine around dinner time as it tends to kick in around sleepy time and if I increase I ALWAYS increase on a Friday so I can regulate over the weekend. PS. I also have blood clots in my legs so being on Coumadin doesn't help things either!
GOOD TIMES!
I'm just so glad I'm not alone!!!
Caroline

I am a 39 year old man with peripheral neuropathy and migraines. When I was diagnosed 3 years ago, the pain in my right leg was horrible and headaches daily. My Dr. put me on Topamax and I was so happy, it seemed to help but one night( about three weeks into it) I went to bed and awoke in the morning legally blind. Topamax was stopped that day but it took 4 months ( and changing the prescription in my glasses 3 times) for my vision to return to 20/20. The doctors tell me I was lucky as some people have perminate lens damage from the optical pressure change.
My doctor said I could not take any thing in that class of medications as it would probably have the same effect on me. So he decided to put me on Cymbalta for the neuropathy. He said it was being tested as a possible use for neuropathy but had not been proven. It works great for the pain and oddly my migraines have gone down to about two a month.

I was given topamax and I dont have seizures or anything. I have PTSD, Depression, and Panic Disorder. I was all over the map, having violent episode, and no memory of it (which was dissociation). They put me on this while i was in the hospital, and I became so non-functional it wasn't funny. I have a degree, grad school, and am 1/2 way through a masters, so I am normally well spoken rationale and well thought out. I was having trouble finding simple words. The effects came on immediately. My memory and cognitive abilities have been permanently affected. I was on for a year live in a outside a small city, and have no real option for other doctors. Not to mention..I found out that this drug has a high rate of users getting depression and in particular at risk for suicide. That was what happened with me...prior to taking it..Then they put me on it?

Trouble seeing, cognitive abilities, memory, depression (was already depressed, and suicidal, but I think it was counterproductive to the anti-depressants)

Is their any action against this drug?

I have been on Topamax for 2 1/2 years at 250mg for migraines and have decided to get off because of side effects. I have had all mentioned: mood swings, dehydration, not sweating,tingling, dizziness, loss for words, short term memory loss,numbness, fatigue, GI problems, anorexic weight loss,rage... And this all began from the starting 25mg dose!
The migraines decreased from 24 a month to 12, at best down to 6 or 7, but I seemed to hit a plateau then back to 15.
I saw three different doctors and all wanted to simply increase the Topamax or add another med (Depakote, beta blocker, etc.)
Finally, I found that a problem with my neck may be causing the headaches and treating that has reduced them enough for me to try and get off the Topamax. I still rely on the Relpax to get me through the bad days, but I'm hoping I can get free of the Topamax for good!
I just encourage anyone thinking of starting Topamax to investigate all possible migraine causes before starting!! Topamax doesn't cure the migraine, it only blocks the pain! And the side effects are not worth it if you can find another way to alleviate the problem!

After taking Topamax for six months, I found my self different person.... I started feeling this way just in the first few weeks after I started the medication, but the simptoms incleased with the time....Anxiety, nervousness, panick attacks, negative thinking and depression....crying, making up problems from nothing, hair loss also....I decided to stop it, slowly and without any concequences I thought I am out of it....But just a couple weeks I stop it is I noticed some red spots on my skin on the lower legs, soon they became more and stronger..... Two months later I was in abnormal stress that I am going to be sick from a terrible desease... Read so much on Internet.... I can explain how terrible I felt and even though I did blood tests (everything was in normal range!!) and spoke with so many doctors, nobody could tell me what exactly is wron with me. One Dermatologist named the skin problem as Progressive Pigmentary purpura and gave me a cream for that. Thanks a lot for that because the spots started desapearing, but it may come again.... nobody knows for sure.... I think this is another side effect of Topamax, that nobody had before..... Please tell me if somebody else had the same situation... I will feel much more relieved....

I have been on Topamax for several years now for crippling migraines. I now take 125 mg at bedtime. I once tried to take myself off of it but, the headaches came back worse than ever So... I went back on. some say that it works because migraines are like a type of seizure. I sure don't know but I'll do anything not to have them like I used to. Recently at night my arms and legs get numb; sometimes one side sometimes both sometimes all I feel is my trunk. It is really scary, but more scary for me is the headaches with the intense nausea that accompanies them. You just can't function. Lately I also feel very tired too! Every one tells me it is just stress from work and "perimenopause" (just what I need more hormonal fluctuation to cause headaches) I really wonder if all this increased fatigue could also be the Topamax ... I mean I could easily sleep 11 hours per night if you let me! Has this happened to anyone? Did perimenopause complicate your treatment?

I have been back on 125mg of Top for about 9 months now. I tried it for 1 year prior to this with too many side effect. I have taken it for migraines and an eating disorder. Instead of helping this time around I believe it triggered emotional issues, panic attacks, nerve damage in the occipital region of the left side of my brain (more than what seemed to already be causing headaches from the start), I relapsed with my eating disorder and lost too much weight, and had something called psychosis. Psychosis is a disordered thought pattern seen in many different mental illnesses or those in a confused state of mind. When I'd look at a stop like I would not be able to determine in my mind whether it was red or green and I would just go through it. I felt like I was going into some sort of coma all the time as well. Now that I am on an eating plan and exercising a bit less the side effects are a little less but the doctors are looking for an alternative at this time. I have tried every med out there.

I've been on Topamax since Sept 2007 and the only side effects I have had were at the beginning were the tingling in the hands and feet when I was brining my dosage up. Soda tastes awful but I no longer drink it and that is a godsend after being a heavy drinker of it for years. I do find there are time when I can't find the right word to say, or I forget what I was doing, but I deal with it. I have lost 20 pounds since being on the medication. After being on it for 6 months the tingling is gone, I usually counteracted it by drinking plenty of water in the morning, that got rid of it. The drug has taken away the migraines, and regular headaches I have suffered from for years. It has also stabilized my moods and taken away my anxiety issues. I'm 36 and have never felt better. Topamax is definitely not for everyone. For those that are suffering, please do contact your doctors and try to get off the medication.

I took Topamax for only 4 days. I ended up in the ER on Feb 22nd because I felt like I was going to pass out, getting dizzy, couldn't concentrate or think, numbness, rapid heart beat, shortness of breath and this was intensified by anxiety from all this stuff going on. I stopped taking it immediately. I have had episodes of these same side effects since then. I had these side effects last week and missed 3.5 days of work. I have been doing pretty good this week but today I had to leave work because the same side effects came back. I had to have someone come pick me up form the side of the interstate half way on my way home because it got so intense I could not drive. My doctors have done blood work and I am waiting for the results.

2 yrs ago I was diagnosed with peripheral neuropathy. I have been on Topamax since, because of the severe pain it causes. I have never experienced weight loss and I was on up to 400mg a night. I am now on 200mg a night. My tastes are fine and my drinking sodas were never like metal. But for the fatigue of the disease I also take Provigil in the morning. I have noticed my eyes have changed. Never gave it a thought to be Topamax. Plus I just got new glasses again 3 months ago and am seeing a change in my sight again. Also there is a noise in my ears,not ringing,but sounds like crickets. Never had that before. I was on 2 other meds but I took myself off of them because I really don't like taking so many. The others had worse side effects. Until they find a cure for this disease it looks like I'm stuck with Topamax. This is one pain I will not and can not live with.

I have been on TOPAMAX for over a year and until recently I didn't realize I was suffering from any side effects. It helps the content headaches and the weight loss is great. In the past six months I have been suffering from severe chest pains, you would think that it was a heart attack. The doctors can't seem to figure it out. After the help of my family doing research, we've found that TOPAMAX DOES NOT mix with METFORMIN for diabetics or LAMICTAL for bi-polar or seizures. Why don't the doctors or the pharmacist warn you about this kind of stuff. I have went from a fairly healthy energetic person, to someone that can even get up and go to work. I have 2 to 3 attacks a day and each one drains me more and more. It is not good for my mental well-being, and I am uncertain if it will have any long term effects or damages on me. It has not been proven that this is the cause of my pains after specialist to specialist and many more to come, but I am positive it has a lot to do with it. I just don't want to hurt any more.

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.

I have been on Topamax for a little over a year. I've had most of the side effects; tingling, numbness in the fingers, dry mouth, forgetfulness, and weight loss - love the weight loss. All the side effects have sort of slowed down as I've been on the medication longer. The weight loss has slowed and I've even began to get my appetite back- I'm afraid I'm going to start gaining weight now! I've lost about 40 pounds and I needed to lose it, so that was wonderful. I've had a very hard time losing weight all my life so this was wonderful.

I was addicted to Coca Cola and this med also helped me kick that habit because I lost my taste for the carbonation.

Does anyone know if the weight loss usually evens out after about a year or a year and a half? I need to lose about 30 more pounds and was hoping that I would continue losing weight!

Anyway, I was on the Topamax for headaches and it has completely helped that! It has truly been a God-send for me. Other than monthly hormone headaches, I don't get migraines hardly at all!

I am wondering about having my doc up my dosage for the weight loss aspect????

I was prescribed Topamax several years ago and stopped because of the forgetfulness and trouble concentrating. The words I was thinking were not what was coming out of my mouth! I started to think I was losing it! I've been seeing a different doctor now who has suggested that I try it again (for migraines) and I guess I just didn't remember how bad it was, so I agreed to try it again, starting out at 25mg daily for the first week, then up to 50mg for the second week. As soon as I increased the dosage to 50mg, I developed a severe itching on the palms of my hands and the soles of my feet that just won't stop! I stopped taking the medicine two days ago, and I'm still waiting for it to go away (although it has improved slightly since stopping). There are other alternatives...just make sure each of you listen to your bodies and don't let doctors talk you into something that makes you feel bad. Only you know how you feel!

Ive been on Topamax for almost a year now. I'm currently taking 150 mg. I have the normal side effects. the bad metal taste all the time. confusion, foods taste bad, weight loss. I have recently have been getting very depressed. also in the past year I've been having stomach problems. everything I eat makes me sick. Doctors don't know what it is. I am starting to think its the Topamax.

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.

Have been taking 400mg of Topamax for 7 years for severe chronic pain condition. Currently experiencing some new issues. Originally had only wonderful things to say, never had any complaints and thought Topamax was doing it's job for me. Tried going off once after developing kidney stone (thought was only side effect), but new med made liver enzymes escalate. Doctors just exploring which of these troubles may/may not be attributable to Topamax. Currently taking several other meds, as well. Which came first, chicken or egg?

I had been taking topamax for 4 years for complex migranes and then stopped cold turkey after feeling like there was a tight band across my waist and watery diahrea and soreness in lower back , burning itchy pain..... went to the emergency room 14 times for them to tell me that I was crazy. I had a feeling like water was running in my head, normal cat scan of brain. water feelings throughout body... they still come and go but last a couple of seconds.... feels like sensory or nerve damage of some kind.... don't know if this is a side affect or not..... Doctor finally is getting something done. she checked my heart becasue I have MVP... and I am shedualed to get a mri of brain... I have a herniated disk in lower back, scoliosis, degenerative disk disease.... nuerologist checked for nerve damage due to herniation. won't hear back anything on that till after mri of brain. won't hear back about the heart till april.... Just found out that I am borderline hyperthyroidism... and the doc is sending me to a specialist. thyroid is inflammed and big.... My bones are crackly and pop alot and sore.... The water feeling and burning and tingling hands and feet scare me alot but I try to not think about it... Try to stay positive.. I am only 29.... I feel like I am 70 sometimes...... Does anyone have these symptoms after taking topamax...????? Yes I do have the thinning hair but that could also be the thyroid... and fatigue... problems sleeping and hot flashes. palpatations..... any help would be nice... Thank you,,,, love and light to all, jess

I have been on 100 mg of topamax twice a day now for over three years. Most of the early side effects have worn off like soda tasting bad and the memory loss. I never had any hair loss. Also the weight loss has stopped and I did gain it back which really stinks. Anyway, the reason I was looking, was that in the last several weeks, I have been suffering horrible body aches and joint pain. My hands and knees hurt very badly. I am 39 years old and hate to think that arthritis has set in so quickly. And I know that I can't have the flu with no other symptoms and so often. Does anyone else have these symptoms? Also I wonder why these could have started after so many years of taking it.I have tried to wean myself off in the past and the migrains came back full force.

Been on 200mg. tpamax about 6 weeks. Problem swelling of the legs and tingling in toes they sometimes turn blue. Is this a side affect of topamax or something else. Doctors have no clue what the problem is any suggestions on what to do.