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Migraine Community MyMigraineConnection Archive of Long or Older Conversations Topamax & Weight Loss Topic Closed|
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MMC Lead Expert Supreme Guru  |
 Welcome!Wow. 14% is way over the average weight loss in the clinical trials. How are you doing now? What are you taking? Is it working? welcome again!
 Teri Robert Lead Expert, MyMigraineConnection terimmc@helpforheadaches.com visit me on
 The generally long periods of time between my Migraines are the result of working with a Migraine specialist to refine my preventive regimen. You can see my current regimen HERE. |
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Master |
Hi Teri,
Something strange going on, I didn't know I had a response. Sometimes the login is denied. I don't take Topamax!! I've done some TENS, physical therapy, and tried every known thing except Botox. Dr Aroura diagnosed me with migraine and told me there was nothing more she could do. Another dr diagnosed me with NCDH and reviewed my charts, told me teh same thing. I'm now in pain control. I deal with it like I have most of my life plus a little methadone and Paxil. I am some what motion sensitive and light sensative. I wear sunglasses most of the time. Even at night. Here's my Topamax experience. Weight loss was the least of my problems. I don’t trust Dr’s anymore when prescribing potentially mind altering drugs, unless I can verify what they are telling me is an approved practice. My Dr took me up to 400 mg of Topamax in a matter of a month or so. I wish I had researched Topamax when it was prescribed rather than just reading the propaganda that came with it. The Dr took me up to 400 mg in a month or so. Topamax caused me serious cognitive issues. First was the tingling and noticeable memory loss. Dr told me the memory loss could be from any number of things including aging or my HA. I was not concerned about the tingling as long as I knew the cause and that it was not a serious medical problem. The Topamax did help some, but I still experienced severe HAs daily. They finally got very low using Topamax in addition to Seroquel and Verapamil. I was not aware what Topamax was doing to me before the others were added, even though my family was wondering about my behavior. I was eventually diagnosed as bipolar and manic. (No family history of either) The Drs denied it was the Topamax. My wife and son researched my meds and diagnosed the problem as Topamax poisoning. They convinced me to work my way off the Topamax and noticed improvement right away. It took me 2 months after I was off to realize how bad I had been. Magically, I was no longer bipolar or manic, without medication even though “it was not the Topamax.” I became very depressed and the meds did not help for that. I was on Topamax for 9 months total. I lost my job 6 months after starting it. 4 months after I had quit, I was able to start working part time again. They don’t know what the half life of this stuff is. I was told it would be out of my system in 2 weeks. I believe the extended depression was a Topamax side effect. I had never experienced anything remotely close to depression until post-Topamax. I have always been one of the lucky few who wake up every morning in a good mood, every day, all year long, year after year. I was still in a fairly good mood with unbearable HA pain. I believe I was in constant pain until I was 8 years old and did not know the way I felt was not normal. So, I had plenty of experience dealing with pain. My family never had any idea how bad the headaches really were. Now a little over two years later, I am pretty much myself again. I still mix up some words and spelling to a minor degree. Some times I notice it proof reading and sometimes not. Sometimes I cannot believe what I have written, because there are so many basic errors. If it were not for my wife and son, I probably would not be alive today. I experienced a feeling impending doom 3 times near the end of Topamax. I knew I was in the process of dying, I needed help and I didn’t know what to do. My training as a volunteer fireman taught me about impending doom and the need to do something immediately for patients who are experiencing it. Now, my wife watches me very closely for any kind of change. She is quite concerned when I participate in migraine studies, but I haven’t tried any new drugs in them. I would certainly have someone very close to you watch for any sign of change in your personality. Any feeling of anxiety, paranoia, tingling in extremities, weight loss, changes in your spending habits, anything not normal for you. IT IS THE TOPAMAX in spite of what the drs may say. I don’t take any of the bipolar drugs prescribed because I’m not bipolar, I was poisoned by Topamax. The Dr that prescribed them admitted I didn’t need them about 2 months later, but he would never admit the problem was the Topamax. I believe that is a legal opinion under WA law, rather than a medical diagnosis. My wife saved an acquaintance’s husband who started off acting similar to the way I did. His dr said it was not the Topamax too, but he went right back to normal when he stopped. They are very thankful for the warning. My drs have all denied it was the Topamax. All my symptoms are in the PDR. They came on slow enough when I strated, that my family did not associate my changes with the med change. The prescribing Dr certainly should be aware of the side effect and be monitoring his patients. He did say I might lose a little weight and I did, 14%. Too bad it didn't stay away when I stoped Topamax. People need to be warned about the serious down side. there isn't much on the web to lead people believe how seriously negative this stuff can be. Take care, Bob |
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MMC Lead Expert Supreme Guru |
Bob,
Thanks for filling me in. I took Topamax for nine months, but stopped it because of the cognitive side effects. I wasn't working when I started it, but got a new job shortly afterward. Luckily, I was working from my home office. From what I've learned since then, I wonder if I would have had so much trouble if I had tapered up more slowly. My doctor had me start at too high a dosage and increase too quickly. I'm so sorry for your problems. It still amazes me when doctors say things can't be due to a medication even though they're listed in the PDR as potential side effects. You said NDCH. Did you mean NDPH? The two meds that have the most research for NDPH are Topamax and Neurontin. So, where are you now with doctors? Have you found another specialist or what are you planning?
Teri Robert Lead Expert, MyMigraineConnection terimmc@helpforheadaches.com visit me on
The generally long periods of time between my Migraines are the result of working with a Migraine specialist to refine my preventive regimen. You can see my current regimen HERE. |
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Master |
Don't be too sorry for me, there are so many folks here in far worse situations than I am. For those who are wondering what is happening to them, I'm very thankful to have recovered and be able to warn about the down side of Topamax.
It is too bad so many Dr's have such a pathetic attitude toward their responsibilities when they are having such a negative impact on peoples lives. It goes far beyond medicine. My negative Topamax impact cost me a couple years work, negatively impacted my retirement accounts, and far far beyoond the financial impacts, are the emotional damages to my wife and family. Here in WA, the first step of a law suit is getting a Dr to diagnose the problem. I find it hard to believe that none of them believe in or are totally ignorant of the PDR and information from the manufacturers. Therefore, one can only conclude they are sticking together, covering each others' errors, sacrificing the patient, rather than risk a claim against an incompent dr. I probably have my acronyms all messed up ;-)) I had just stopped the Topamax at the time; so my short term memory was near "0" and I confused everything that I thought about. What I think the Neuro said was New Daily Chronic Headaches or a new classification of Chronic Daily Headaches. I don't think I'll be trying topamax again. I decided to divorce my wife when I was on it, she would probably kill me if I looked at another tablet :-)) I will check into Neurontin. All the Neuros and Dr Aroura said there was nothing more they could do for me. They comfirmed my research on the web. I'm in pain management to keep it at a tolerable level since the first of the year; plus a little Paxil as a preventive. I will keep researching. Wish I had found this site long ago :-) Take care, Bob QUOTE : I'm so sorry for your problems. It still amazes me when doctors say things can't be due to a medication even though they're listed in the PDR as potential side effects. You said NDCH. Did you mean NDPH? The two meds that have the most research for NDPH are Topamax and Neurontin. So, where are you now with doctors? Have you found another specialist or what are you planning? |
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Fledgling |
Hi,
I was just wondering if you had any serious side effects while taking Topomax, because you were on it for so long. Or did you have any side effects that were minor and were not that bothersome maybe. I got a prescription for it about a month ago but I've been scared to start taking it after reading about so many problems people have with it. But I decided last night I have to start something because my headaches are just too much, pretty much daily which I've been taking Imitrex for. Thanks!
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Master |
Hi Joanne,
remember my Dr took me up to 400 mg in a month instead of 25 mg max increase a week. It did help, but the sides were terrible, possibly due to the massive dose without proper "warm up period". I certainly do not mean to scare anyone, just to warn and be skeptical if the Dr says "it's not the Topamax" if sides show up. A lot of people are helped too. Be aware, use your own best judgemenmt about your health, pain and quality of life. take care and good luck, Bob |
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Apprentice |
bob,
Wow. that's all i can say.  i can't imagine what you've been through. i'm glad you're out the other side now. emily |
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Forum Moderator Supreme Guru  |
Hi, Joanne, and welcome to the forum, first off.
 One good thing to remember is that potential side effects are just that. Potential. In the majority of people they either don't appear or are mild. The reason it seems bigger than that when you read on the forums is that the people that tend to be trying it and discussing it are for the most part people that are having trouble. It really skews the big picture. It's a good thing to remember when trying any new med that if most people taking it experienced big problems, then the drug wouldn't be on the market. Should you decide to try Topamax, I hope you have as good of luck with it as some of our members have had. I'll be rooting for you.
 Dragondrool Forum Moderator ~~8=:>>>> |
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Master |
I would not have believed that kind of stuff could happen. Then my wife and son took control of the situation and got me off all the drugs I was on at the time. My head hurt so bad almost 24/7, I did not know what to do or who to believe. Finally, I told my wife to do what is best for us because I didn't have a clue and probably would not have one for the forseeable future :-)) Remember, it's your health, your pain and your quality of life, not the Dr's, use your own best judgment. Take care, Bob
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Master |
My problems with Topamax are most likey problems with a Dr who should not be allowed to prescribe any of these potentially dangerous chemicals if he can not identify the side effects and monitor his patients for them. Making matters worse are the Drs who deny it, because diagnosis creates a potential legal claim. Sacrificing the patient should not be an option as the answer to their concerns. The same dr did not know anythig about dry mouth as a side effect of Vivactil. My dentist identified it as a potential problem early in the prescription. A year later, I had 24 +/- fillings done after my 6 month check up. I mistakenly gave the Dr a break thinking noboby can know everything and he's not a dentist. Topamax was the alternative to Vivactil. Of course, hindsight is 20/20, but I'd have been way better off to have all my teeth pulled and never let him put me on Topamax! Could there maybe be a lesson here? Like, nice guys finish last. |
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Novice |
ChronicHA,
You've been responding to my Topamax questions on another thread. I just finally read thru' a bunch of stuff here. LORDY!!! What an experience you had! I'm glad that is behind you. Your doc sounds like a COMPLETE NINCOMPOOP IGNORAMOUS. I fortunately only titrated up to 25mg a day. And, now I'm weaning off, hoping some of my problems abate. My doc also said, "it's not the Topamax". I finally had my hubbie put up the fight for me. I need to try life without Topamax to be sure, right? These docs need to read more and learn to listen better!  As this is supposed to be a weight loss thread, thought I'd add my two cents on that too. I calculated a 7% weight loss in the first ~6 weeks on topamax (perhaps due to the vomiting migraine not the drug?). But, I gained most of that back in the following six weeks, despite my continued nausea. |
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Fledgling |
Thank you for the replies! I ended up starting on the Topamax 2 nights ago and going to follow the package instructions for increasing dosage from 25mg up to 100mg over a month. But I might stretch it out a little longer than a month, I'll just see how it goes. I was a little worried about the potential side effects at first, but then again, I'm already dealing with the 'side effects' of almost daily migraines, so it's definitely worth a try. Oh yeah, and I wouldn't mind the weight loss thing either!
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Forum Moderator Supreme Guru |
Good for you, Joanne!
Keep us posted on your progress, okay? Dragondrool Forum Moderator ~~8=:>>>> |
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Master |
Hi Counting sheep, I'll reply on doc's and clinics. See ya over there :-)) bob |
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Master |
Good luck Joanne,
You never know until you go. Hope & prayfor the best, prepare for the worst, where ever you land, at least you won't be taken by surprise. Bob |
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Topic Closed Migraine Community MyMigraineConnection Archive of Long or Older Conversations Topamax & Weight Loss
