The People's Perspective on Medicine


Topamax is an anticonvulsant medication for children and adults with epilepsy. It is also prescribed for the prevention of migraines. 

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
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Went from 50mg twice a day of generic Cipla brand, of Topramax, in Vt phar. to same dose of generic Zydus in FL phar. cannot find a phar down here with the Cipla brand, been in bad headache pain everyday! On a whim I looked up the different brand of pills and discovered that different brands do make a difference. I felt somewhat normal on the Cypla brand after trying Botox, acupuncture, and a hundred other treatments over the years. Where do I find
Cipla brand Topamax in Port Orange Fl? 386-882-3152.

I was given Topomax without any warning of the horrific side effects it would produce, even though I had heard stories from others over how sick they became while this toxin was in their body, and had read things myself.

I personally started having tremors, tingly feelings, flashes of light in my eyes, bloodshot eyes that were swelling from behind (a side effect of topomax that mimics glaucoma), and quite possibly hearing loss and tinnitus. I can’t imagine how much brain and sensory damage I would have acquired in the long run if I stayed on this crap.

I’ve been taking Topamax for bipolar and binge eating and now I’m taking the generic, my binge eating is again out of control. I use to work in pharma and I thought generic had to be exactly the same, but trying to get the Topamax generic to work is driving crazy, as my weight and unhealthy diet continue to go up.

My wife is on Topamax for Bi-Polar Disease. The reason Topamax is used is due to the side effects which include improved mood, loss of anxiety, loss of Migraines, and no suicidal thoughts. It simply levels out her depression.

When switched to the Generic, all the good side effects went away and all the bad side effects came back. (Thoughts of Suicide, Migraines, anxiety.) So now as opposed to curing her problems the medication is actually causing the problem.

We switched back to the Brand and all the issues went away. Topriamate is not an equivalent for Topamax used for Bi-Polar disease, and from the sound of it it is also not for other diagnoses.

Did anyone notice that they lost weight on topamax but didn’t lose weight on topiramate?

I have been taking Topamax since 2004, the dosage is 200 mg a day. The insurance made me change to generic a year ago and all was okay until the pharmacy switched from Camber pharmaceutical house. Now I have problems with nausea starting shortly after I take the medication, I’m dizzy, my hands are sometimes numb and cold, heart burn, also I have pain in my head and eye. I’m taking Topamax for Post Herpetic Neuralgia Pain from shingles. So the medication is not working and I have to take more pain meds, that I don’t like.

I been on topamax for years. always got brand. even though with insurance the co pay was 75.00 it worked for a plethora of things. headaches tonic clonic seizures eating disorders addiction and of course my favorite MS. Then lost its patent and played the generic game. Teva worked best. Last batch I got did not. And found they discontinued making it. Tried glenmark. NOPE…cause my bloodsugar to drop rapidly…and there is one other generic. BRAND is453.00 Dont have that so I went online to canada for BRAND. 4 mos for119. Humana doesn’t pay for anything but generics. SO the topamax is Jenssen c something. BRAND just made in Turkey…Will let you know how it does..

I was on Topamax (name brand) 2 times, for epilepsy, with the name brand for me at least while I was leveling to 300mg a day, I got severe fatigue, and memory lapses.. basically slept thru the leveling.. side effects went away soon before it was time to level up.. 300mg day not many side effects except weight loss, appetite loss, and the minor fun side effects. When I was on 400mg I became toxic and had ketones, from the non appetite issue, liver enzymes were elevated (even after coming off Topamax -Brand) but it also had some good effects at that level, like it made me a “cleanfreak” and made me want to figure it out on my own kind of thing, but made me very moody, confusion, acne, sugar swings etc.. barely had any seizures on topomax brand.
Later they had me on Topiramate (generic) from I think Sun Pharma. it was different.. started on 50mg (25mg 2x daily/split tablets).. within the first week, very severe headaches and minor nausea (which happened minutes after eating a dose). I crushed them doses up and hid them in some food. and that killed the nasty headaches. Also had insomnia, lack of appetite, minor eye pain, taste perversion (everything tasted gross), acne, moodiness, drugged feeling, chills and flulike symptom, by the end of the first week, extremely thirsty too
Insurance companies think nothing but $$, but there are different programs that might help get access to Topamax. an AB rating isn’t good enough when dealing with seizure meds for seizures, especially when the generic is different then name brand.

A few years ago my daughter, who had been taking brand name Topamax for migraine prevention with good results, had to change to generic topiramate per our insurer. Not only did the Apotex generic not work, she had more severe headaches than before she started on Topamax. A dosage increase of the generic did not help. I filed an appeal with Express Scripts which was denied, because they said the FDA considered the two drugs to be “AB-rated equivalent”. Then I paid out of pocket for brand name Topamax, and within a few days her headaches were under control again. Her doctor’s notes backed this up. Then I filed a secondary appeal which is reviewed by another quality monitoring contractor, and they reversed the denial.
Now my daughter can get the brand name drug, but we have to pay a higher “non-formulary” co-pay. So anyone whose insurer won’t cover the Brand name drug should see if they can appeal the denial. If you have enough evidence that the Brand name works, but the generic doesn’t, you might be able to get it. Express Scripts also retroactively covered the supply I paid for out of pocket after the appeal denial was reversed.

I only get migraines, but I can definitely say that I noticed a huge difference between the generic topiramate and topamax… even the side effects are different. My neurologist has also agreed that she’s had some patients tell her that it hasn’t been as effective. As a result, she’s upped my dose, but I’m still getting more migraines than I did when I was on topamax. If I were you, I’d switch back to topamax. Good luck!

I’ve come from Europe. I’ve been taking Topamax Brand for seizures for years. Even there, it’s a relatively expensive medication comparing with the generic Topiramate. So, I was switched to the generic. I suffered from suicide thoughts, psycho feeling & thoughts and a long similar side effects that could have ended up to suicide. Finally fortunately I could manage to switch bach to the Brand.

Now for those who take Topamax for Migraines, I can recommend you to consult with your physician a brand which is very common and not expensive in Europe on the counter in pharmacies called “Hemicraneal”.

I wish you luck.

I have been taking Teva topiramate for seizure control for 7 months, after starting a new lot in August, I had a breakthrough seizure Sept 14, also I noticed that I started to have more unpleasant side effects after the new lot, my toes are always freezing, more feelings of anxiety etc. Is it just a coincidence or should I insists on brand? I was on generic keppra a few years ago and after 2 manufacturer switches of my generics within 1-2 months I had a seizure. I asked the doctor about this and she said it was just a coincidence. What do you think? judy

I also was forced to make a switch a few years ago from Topamax to generic for mood swings, eating disorders, and migraines. I swore it was not working as well and I was very irritable. I insisted to the pharmacist but was also told no different between the two.
I reduced the dose then from 300mg to 200mg. After a few months I stabilized. I am lucky enough not have the nasty side effects others are having because going off this med would open up Pandora’s box. I cannot take anything else like ssri’s and such because of a suicidal side effect.
I do think insurance companies ought to make exceptions for those with life-threatening illnesses like epilepsy to stay on name brand, however. It is a crime that they are not allowed. People like myself with migraines or mood problems can either adjust or change meds. Not that we are less important at all, but it breaks my heart to hear about the suffering and danger involved in something like this. It’s morally and ethically wrong period.

I have been taking topiramate or Topamax for 8 years for bilateral neuropathy in my feet and lower legs caused by statins. The initial dose was split dosage of 200 mg a day prescribed by a neurologist seen after 6 months of work-ups by internists, etc for ALS, lupus, MS, pinched nerves, brain tumor, neuromas, whatever… until I saw a story about latest study of statin side affects. I had been having numbness, sharp shooting pains, trouble walking, cramping in soles, neurasthenia from toes to knees.
STOP the statin for lowering cholesterol (which wasn’t that high anyway) half symptoms went away…. but the Topomax really helped…. side effects of chemo-brain ie memory loss, etc. some weight loss. I am now on maintenance dosage of split 50 mg and would like to get down further… but still have night-time burning and electric pains plus numbness.

I have been taking topiramate 25 mg twice a day now and I find I am having a terrible loss of memory ever since I started taking it. Please tell me if you have any suggestions and should I continue taking it. It helped with headaches. Thank you very much.

I was prescribed Topamax to see if it might help treat Essential Tremor. I started out at a very low dose, gradually increasing it every 2 weeks until I got up to 1 1/2 tablets of 25 mg. At that last dose, I started experiencing loss of hearing in my left ear. It wasn’t from wax buildup, nor did I have any infection. Some days later, it turned into tinnitus. So I discontinued the drug.
It took about a week or more for the drug to lose its effect and the tinnitus and loss of hearing were reduced and finally gone. (An ENT confirmed that there was no other problem with my ears.) My Neurologist said none of her patients had experienced that when on Topamax and she didn’t believe it was the offender, (despite the fact that in clinical trials, tinnitus had been reported in 2% of the time which I reminded her of.)
I researched and found a homeopathic remedy to treat tinnitus and loss of hearing, esp. in the left ear, and I used that when I started discontinuing the drug. I am a 74 yr. old female. I had a headache thruout interspersed with mild bouts with my chronic BPPV. So who knows? But I don’t think I want to re-challenge with the Topamax. My tremor is not THAT bad!

I took topiramate for 6 months originally for glossopharangia but it also greatly affected my epilepy, neuralgia, and jumpy legs. It was my magic bullet, it started to change my life. After 25 years of pain and discomfort I was almost normal.
Then I started to get pain in lower right stomach, this pain increased and I had xrays and other tests and I cannot remember its name but its a camera up the bum. But all the tests came back negative. By this time I was crippled with the pain and xmas 2009 I thought was my last despite all the medicals telling me there was nothing sinister.
Then my wife said stop taking the topiramate she just felt that was the problem. I consulted my doctor who did not see a strong connection but it was my choice. So after a year of taking Topiramate I stopped, within 3 weeks I could walk by 6 weeks I was back to normal with just a reminder now and again. It took 3/4 months before All the symptoms it affected returned. I am 67 and fairly active who does most of the maintenance in my very old house. If you are thinking of taking this drug I would grab it with both hands I was just unlucky. All the best.

I’m not taking Topiramate for life-threatening purposes, thankfully — simply for a combination of things, at the advice of my trusty physician’s assistant. Perhaps there’s someone out there who can empathize with me, nevertheless. I’m 40, and I can no longer handle my “monthly” mood swings; the irritability and depression are driving me and my family crazy. I’m also getting more migraines, as time goes by, and I’ve put on about 30 pounds over the past year, so she recommended the medicine, which she’s been on for about three years. She absolutely loves it.
It helped with her headaches, leveled her mood swings, and lowered her weight by about 20 pounds in six months. At any rate, she wrote me a prescription and recommended that I start off by cutting the 50 mg pill in half the first couple of days, so I did, but I’m up to full strength now, and I don’t know if it’s “all in my head” or what—perhaps it’ll wear off— but I cannot think. I’m in such a mind fog! I cannot do mental math, and I even gave someone the wrong e-mail address yesterday. I’ve had to correct several typos on this entry thus far. I did a search on Topomax prior to coming here, and several of the bloggers said it was a definite “IQ dropper”; I’m starting to believe it.
For the first time in my life, I’ve had to ask myself if taking a prescription is worth impairing my cognitive ability?

I’ve been an epileptic for over 20 years. First I was on topamax, which was working, then was changed to Topiramate when it came out as the less expensive alternative. I lost my memory and could not answer questions – it was as if I lost a connection to my mouth. I have switched to generic lamictol – lamtorigine, which is working better. I hate topiramate, the cost issue that brought all of this on, and that it took me weeks to figure it out. What about others who suffer?

After 30 plus years with epilepsy my doctor put me on topamax and solved a lifetime of problems. About 7-8 months ago pharmacy changed to a generic, it took me a while to make the connection. So many small things began again,after years of freedom. Even thinking and holding a thought is getting hard, ambition gone, many small things that were not a bother are now a big deal. Must find a way to get back on topamax.

I have been on topamax for about 8 years now to help with the prevention of migraines. I switched to the generic as soon as it became available back in June 2009. I can’t even recall the last time I’ve had a migraine. Hmm…maybe only 1 since I’ve been on the generic. Which is equal or less to the frequency when I was on the Brand. I’m on 300 mg per day. I don’t want to laugh at the comments at everyone “claiming” that the generic is directly causing their decline but I sometimes think its all psychological…

I am now on generic Topiramate after being on Topomax for migraines and I have to say the Brand WORKS. I am all of a sudden having headaches and mild migraines but I guess that is what I get for trying to save a buck or two in this economy.

I have taken topamax for severe migraines (around 12 per month during the cluster period) with light sensitivity, vomiting, loss of appetite, dizzy spells, and aura, for five years. The topamax took care of my cluster headaches almost entirely with only a few migraines per year during times of extreme stress.
Four months ago when the generic was released I began taking it as my insurance would not pay for the brand name. Within a week I began getting migraines again with increased dizzy spells. My doctor increased my topmirate dosage to 150 mg per day- the highest dosage for migraine suffers and my migraines eased up a bit about as successfully as 50 mg of Topamax had been.
After keeping a food diary and examining all of the possible outcomes I realized that more than likely it was the generic that was causing the migraines and since have gotten my doctor to write the prescription as dispense as written. Topamirate is not successful for migraines for me.

I have been an epileptic for over 20 years. Have been on Topamax for many years before moving on to the generic Topiramate. Rare breakthroughs here and there throughout the years on both meds. On April 27, 2009 I was switched by the pharmacy and my ins. carrier to ZyGenerics version of Topiamate. The pill looked different, and when questioned I was told the meds were exactly the same and asked to sign an acknowledgment. I complied.
Within the next 30 days I had 4 or more seizures. I dislocated my shoulder possibly 3 times and broke my ankle. It took me almost 2 weeks to comprehend what had happened, another 2 weeks to figure out it was the change in generics that had caused all the damage, and now during research TODAY to realize that this happens all the time all over America.
I am deflated.
What avenues are there in which to protect yourself? I have been going to this pharmacy for 13 years, I know these people… nobody gave me the slightest hint that there could be a potential problem with the change in meds.
Generics are not all made exactly like to original. Some are different.
For epileptics it can be life threatening.

I have taken Topamax for about six months for migraines and it was working wonderfully for me. I have just switched to the generic and have had moderate to severe migraines daily for about three weeks now- exactly as I was before I began treating my headaches at all.

I take it for migraine prevention and not seizures, so I can’t help there…but I switched exactly one month ago and have only suffered one mild migraine. So far, so good. No other side effects to speak of either.

Wanting to know if anyone has had break though seizures on the generic after using Topomax? I would love to try generic, but am afraid. Any one out there?

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