Psycho-Babble Medication Thread 50878

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Re: Recently Started on Topamax for Migraines

Posted by Lainie on April 16, 2001, at 21:24:06

In reply to Re: Recently Started on Topamax Lainie, posted by Cateb on April 14, 2001, at 19:21:37

> Lainie, I too have suffered from devastating migraines as my primary complaint since I was 19. And until 1996 I had never had a problem with depression. I am currently on Topamax after Pamelor and later Depakote both caused too many side effects (though all three had an effect on them). I also use a LOT of Imitrex injections and nasal sprays.
>
> After having my first child in 1996, I also developed a severe depression problem, and after my second child in 1998, it blossomed into bipolar II with rapid cycling. So I was treated with meds that could also tackle migraines. Thus I'm now on Zoloft, Wellbutrin and Topamax. For me the Topamax only began to help the migraines at 400 mg, and it never has helped the mood swings in my opinion. I've been on it at that dose for 3 months. I've lost 30 pounds in three months, had constant diarrhea, and had a constant "white noise" type of scream inside my head...I don't sleep well at all. I feel constantly agitated. Joyless about life, food, art, my family, everything. I finally dropped back to 300 mg on my own and am about to drop to 200 tonight. I have just taken things into my own hands; I felt my life was in danger I was so close to the edge. Ironically, the agitation caused me to take my migraine narcotics (which I needed less for the migraines at the 400mg dose) to dull that awful Topamax feeling. They were the only things in my chemical war chest that actually helped...
>
> Having said this, for others on this thread, they have found Topamax excellent, and if I didn't get the agitation, I could have appreciated the headache reduction. You clearly have a very different background and may find relief.
>
> I would also like to point out that I got good results from Depakote, though I had some problems there with weight gain, lethargy and hair loss at 500mg. And lastly, Pamelor, an old tricyclic, worked very well with side effects of constipation and dry mouth, but the bigger problem for me there was that if I missed a dose or dropped even 5 mg I would get massive withdrawal headaches immediately and my husband would need to miss work I would be so sick. Perhaps I'm just too sensitive to drugs...
>
> I wish you luck and if you want to talk more, I check this board weekly to get hope and inspiration from the others here, and to learn more. If you know of a good migraine support group on the web, let me know.

Cateb, thanks so much for responding. It's great to hear from another migraineur, although your medical problems and drug combinations sound a lot more complicated than mine and I wish you a lot of luck. Terrible side effects at 400 mg. of Topamax and I'm having trouble at 75! (I go to 100 tomorrow morning.) I too tried Depakote, Zoloft and Wellbutrin, and also one or two of the tricyclic drugs. All of the Depakote-like drugs and high doses of Inderal/Propranolol made me so tired I couldn't even walk, much less run three times a week, so I quickly gave them up because to me life isn't worth living if I can't exercise (which I can't until I get over this rebound drug withdrawal thing).

How much Imitrex are you taking? I had to give up the injections because I just hated the idea of giving them to myself and was so thankful when they came out with the tablets. My MD says no more than two to three times/wk., but I think after 5/1 he's probably going to say 2/wk. max - maybe it has to do with the rebound effect but that's something else I need to ask him.

What are you going to replace the Topamax with? I've read about so many other similar drugs on this thread that I know they're out there - have you talked to your doctor yet?

Anyway, I'll have time to write more later, but wanted to tell you that although I don't know of a good migraine support group yet, there is the ACHE net which has tons of separate threads (I wish they would merge more of them) about migraines that you might want to check out. If you're not familiar with ACHE it's the American Council for Headache Education at www.achenet.org/; select Discussion Forums, where they have Expert Talk, which I haven't found too useful but you can look it over, and Headache Talk, where us common folk leave our messages.

Also if it's not too late where you live I wanted you to know that there's supposed to be a program called Headache: The Painful Truth on the Discovery Channel tonight, Tuesday, April 16th at 8 and 11 p.m. ET and then again on Monday, June 4th at 9 p.m. and 12 a.m. ET. It's not available on video. Hope you get a chance to check it out.
Again, hang in there and keep me posted about any changes.

I'm so excited the clinic head/internist is finally due back Wed. after being at a conference for 10 days and I have survived without him so that's a good sign - but I have a long list of questions about Topamax and its side effects and other things!

Take care,
Lainie

 

Re: Topomax question

Posted by kp2001 on April 18, 2001, at 9:09:10

In reply to Re: Topomax question kp2001, posted by phillybob on April 16, 2001, at 17:54:42

thanks man
uve been a great help

 

Re: About to start on Topomax

Posted by dawn setzer on April 20, 2001, at 11:37:45

In reply to Re: About to start on Topomax Dawn Setzer, posted by phillybob on April 12, 2001, at 14:30:58

> Hi, Dawn! Sounds like this could really work for you if my dx and success on this med, albeit brief, was any indication. I'm in the process of titrating up on Lamictal right now (currently, at 100mg/day along with a trial of Adderall). Topamax was really great for me, though, and I will certainly re-consider it, though, at a lower dosage, if need be.
>
> My only advice to you would be, say once you reach 100 mg/day or so, is to hang out at that dosage for a while to see if it is enough before titrating up. But others have not necessarily had the side effect that I had (though it is a side effect, the gum recession, per my pdoc).
>
> As far as sleep, for me, in the beginning, it would let me (and cause me) to sleep a bit, but then eventually, at the higher doses, I was takin' it in the day (split doses, I think) without sleepiness and no problem sleeping at night. (that's only a problem for me now with the Adderall, but I'm still tinkering).
>
> What dose of Lamictal had you gone up to? I fear I will have the same non-response as you or a partial response which, if I can get the Adderall runnin' properly, will allow me to decide to stay pat or not.
>
> Good luck! Keep us posted. This is as fine of a place to post your experiences for this drug as any!

Hi Gang!

Thanks for your responses! Thought I'd give it a week or so before reporting in so I could give a better overview of my experience thus far.

Well, in typical fashion for me, I'm not having the usual response to this medication. It is better than what I was experiencing with the trazadone and higher doses of neurontin, but still not perfect by any means. I'm trying very hard to be patient even as I become very tired of BEING a patient!

The trazadone, interestingly enough, reached a point of having some of the side effects that topamax is reported to have. Most disturbingly difficulty forming sentences and confusion. It was also having little effect on my insomnia although was helpful for anxiety.

The first night I took the topamax (only 12.5 mg), it cut immediately through the trazadone haze, put me to sleep and I woke up the next morning at 8:00 feeling rested and with no hangover effect. WOW!! As with the neurontin and trazadone, I continue to have a very full, bloated feeling, which is very uncomfortable. With the topamax it is primarily in my midsection as opposed to an all over fluid retention with the others. The jury is still out on this side effect as I'm premenstrual and I think the multiple med changes are contributing to the severity of those symptoms, so I'm hesitant to blame it entirely on the topamax. Constipation is also a problem which adds to the discomfort.

Among my biggest fears was the confusion etc., which has not been a problem at all. I increased the dose last night to 25 mg and still no problem. Complete clarity so far, although I think I will likely have to increase my dose of dex as I ramp up the dose of topamax.

Taste disturbance and dry mouth is barely noticeable. In fact so much so that if I didn't know it was a side effect I wouldn't even be concious of it. This may have to do with my history with dex and trycyclics which leave a terrible taste in your mouth and cause very dry mouth as well. Perhaps I'm just used to it? My caffeine consumption is down (more because I don't feel groggy all the time) and I'm smoking less. Good things!! No noticeable decrease in appetite, just my luck, but no weight gain either!

The one thing the topamax has not helped with is my level of motivation and the anxiety. I'm not groggy, but can't seem to get anything done. I did add 100 mg of neurontin twice a day for the anxiety but just adds to the food cravings and lack of energy. Also, the first few days on the topamax blew the lid right off my anger control and I raged at the drop of a hat. That seems to be under control now. I'm also aware that some of what I'm reporting as "side effects" are likely to be related to my current personal circumstances. I'm sure that can be said for all of us!

Oh and one more thing, bleeding gums. Phillybob, your extreme experience in that department was very disturbing and so I've been paying close attention in that area. Noticed my teeth are sensitive (although I typically have dental problems when under a lot of stress)and my gums bleed somewhat with flossing. Really appreciate that you've hung in on this thread even though you've stopped taking the topamax for now.

As for your lamictal trial, I'm probably not a good person to base things on. I was drinking quite a lot at the time I was on that particular drug so giving you a clear picture of my experience would be difficult. I have given a couple of the drugs I've tried in the past another shot in my sobriety, with much the same effect, but not the lamictal. I stopped taking it mostly because it was expensive and at the time my insurance company didn't cover much of the cost. It didn't seem to make enough of a difference to justify the expense. I believe I was taking 100 -150 mg twice a day. As I recall, some ongoing flulike symptoms and minor itching, but no other problems with it. It was my understanding that extreme and possibly deadly rash was the worst of the side effects. Death by rash, hmmm!

How are you finding the adderall? I found it to be less effective that the dex and not as easy to control the dosage. It is smoother in it's action but I was less clear on it.

Thanks again for hearing my out on all of this! So helpful to have an outlet for the frustration of it all and to feel like maybe my experience can help others as well! I'll keep you posted!

Dawn


 

Re: Recently Started on Topamax

Posted by dawn setzer on April 20, 2001, at 12:14:08

In reply to Re: Recently Started on Topamax, posted by Lainie on April 12, 2001, at 21:30:57

Hi Lainie!

Just wanted to say GOOD FOR YOU, for taking care of yourself in spite of it all!! Warm baths, quitting a stressful job, you deserve a round of applause!

For me at least, taking care of myself is the hardest thing to do when the rest is falling apart. I admire your commitment to being good to yourself in the face of adversity.

From the information my pdoc has given me, migraines, adhd, bipolar, seizures, pmdd, are all closely connected. I experienced severe migraines as a child and into my early 30s, although I haven't had one of any great significance in years. PHEW! I can still vividly recall the pain, however.

The research I did while taking neurontin indicated it was often prescribed for pain and migraines. I found it to be VERY helpful for anxiety, which in the past was a major factor in the onset of migraines for me, so perhaps you could check in with your pdoc about it.

I think the worst of all of this is the hamster wheel we're all running around in!! At least it feels like that for me. Anxiety produces insomnia, which in turn produces anxiety, which in your case is helping to produce headaches, etc., etc., etc.

One thing I DO know is that exercise (at least for me) makes all the difference in the world! Problem is, that gets lost in the emotional hamster wheel too!

Most importantly, don't lose that wonderful sense of humor!! I bet you look simply STUNNING with that ice bag on your head and that you wear it with style and grace. Perhaps you could create a line of flashy turban head wraps that hold a gel that can be frozen, for others who suffer as you do. A multi purpose item that can also keep you cool at the beach or be put in the cooler to chill the beer!

Wishing you the best and some relief from your pain!
Dawn

 

Re: About to start on Topomax dawn setzer

Posted by phillybob on April 20, 2001, at 12:57:28

In reply to Re: About to start on Topomax, posted by dawn setzer on April 20, 2001, at 11:37:45

> Death by rash, hmmm!

Funny. Ha, ha. No, I mean it. :)

> How are you finding the adderall? I found it to be less effective than the dex and not as easy to control the dosage. It is smoother in it's action but I was less clear on it.

I've already given up on the Adderall ... caused me to be too ? I don't know, anxious ? Made me more depressed or maybe it just allowed me to concentrate more clearly on my depression :). I'll think about dexadrine a bit later if need be.

I have however added Prozac (20 mg) to the Lamictal (up to 150 mg for the first time last nite) and woke up feelin' decent this morning ... with a bit of wearing off as this day progresses. I'm hesitant to take the meds in the day because then I am more aware of the side effects. Once I get consistent at a certain dosage, I'll play with daytime dosing. And, no, these 2 meds don't keep me up at all.

I wish you well on your Topamax trial and look forward to hearing more updates as you feel they might be relevant (as I may be re-visiting Topamax myself at some point ... who knows).

 

Re: Topamax Experiences? maribeth

Posted by kathrynbabble on May 12, 2001, at 23:30:20

In reply to Re: Topamax Experiences?, posted by maribeth on January 21, 2001, at 9:36:05

> Hi This is long but if you have the time and insight I ask you to please read and respond.

I have been diagnosed as manic-depressive. I was doing well on 20mg of elexa. However, doing well turned into doing too well(hypomania) and then turned into even more extreme hypomania where I had planned to sleep with 3 people I knew plus I had cyber sex with a married man I know and someone I did not know. I was seeing a therapist at the time and he spotted the change in me and sent me to a psychiatrist. he made me drop to 10mg of Celexa and I had withdrawl in the form of extreme agitation. For example, I was extremely irritated that my purse was too deep??? I emptied it out along with any other purse like items I could find onto the counter in an angered frenzy. I knew it was irrational but could not stop just the same. About a week later I woke up at about 6:30am and went about my morning as usual. At 8:00am I started to try to get ready for work. I began to feel very strange. I have had anxiety attacks before and this was not one of them. I could not concentrate on getting ready. Everything was extremely clear and vibrant as if it had just rained in the house. I kept trying to put my make up on but I kepy feeling like I kept putting make up one someone else. My hands were not mine either. I kept thinking that if I looked in the mirror my face would be a hallucination. I kept trying to pace from room to room and talk myself down out of it and my voice was not mine either. Something kept telling me that the next time I turned the corner into the next room the real snake (something hallucinatory half animated half real - threatening just the same) was going to be there. I took part of a Xanax to try to calm down and tried to get a hold of my doctors and my mother. It took hours to completely calm down. I tried to drive to work just after taking the xanax and i could not go over 35 mph I had to call in. I did not know if it was going to get better or worse. Nothing even close has ever happened to me like this before. I had been having very vivid and hallucinatory type dreams all night and every night as well.

I ended up trying Topamax starting with 25mg per night for 5 nights, then 50mg for 5 nights, then 25mg in am and 50mg in pm thereafter from then on with 10mg of celexa. On my 4th morning of that I went into a blind rage and crying spell. The kind I had before any medication a long time ago. I called the internist I have that listens to me better than the psychiatrist I have been sent to. I asked if i could go back up to 20mg of Celexa. he told me to go aheadwhereas the psychiatrist said that I would wait weeks into stabilizing on the Topamax to do so. I would have ended up in big trouble that way. I can get very hostile and paranoid. I am wondering (finally - I know) if anyone else out there has had a volitle reaction to getting used to Topamax? I am doing much better now that I am back on 20mg of Celexa with it. I am having the drowsiness and the strange tingles in the feet but nothing else besides the anger stated earlier. Any responses would be greatlle appreciated. This is my first post on a thread of any kind. Sorry for the strange name I had troubles signing up - had to add something - it is late.

 

Re: Topamax Experiences? kathrynbabble

Posted by lois on May 14, 2001, at 20:05:41

In reply to Re: Topamax Experiences? maribeth, posted by kathrynbabble on May 12, 2001, at 23:30:20

Hi,
I am on 75 mgs of topamax at night-supposed to help me sleep, but still need other meds to sleep.I too have some tingling in feet and hands,but am getting used to it.I don't know if it's from topamax or lamictal, which I also recently started.
Lois

 

Re: Topamax Experiences? kathrynbabble

Posted by Nellie on May 14, 2001, at 23:46:53

In reply to Re: Topamax Experiences? maribeth, posted by kathrynbabble on May 12, 2001, at 23:30:20

> "I have been diagnosed as manic-depressive. I was doing well on 20mg of elexa. However, doing well turned into doing too well(hypomania) and then turned into even more extreme hypomania"

My understanding is that anti-depressants, (like Celexa) can cause manic/depressives to go into a manic state.

"he made me drop to 10mg of Celexa and I had withdrawl in the form of extreme agitation."

Did your doctor think the aggitation was from withdrawal? It would seem to me that aggitation would be more likely to be a part of the manic state.

"I did not know if it was going to get better or worse. Nothing even close has ever happened to me like this before."

I'm sure that was very frightening.

"I ended up trying Topamax starting with 25mg per night for 5 nights, then 50mg for 5 nights, then 25mg in am and 50mg in pm thereafter from then on with 10mg of celexa. On my 4th morning of that I went into a blind rage and crying spell."

Was it the fourth morning of your full Topamax dosage or just the fourth morning of taking the Topamax at all? It takes awhile for the Topamax to start working so, either way, it may not have been having an effect on your mania yet.

"I called the internist I have that listens to me better than the psychiatrist I have been sent to."

Look for a different psychiatrist. If you don't feel comfortable and he/she doesn't listen, then you need to make a switch.

"I am wondering (finally - I know) if anyone else out there has had a volitle reaction to getting used to Topamax? I am doing much better now that I am back on 20mg of Celexa with it. I am having the drowsiness and the strange tingles in the feet but nothing else besides the anger stated earlier. Any responses would be greatlle appreciated."

Here's my two cent's. I am not a doctor, but I've been treated by two psychiatrists and a GP for my depression/mood for about eight years, so I'll share what I have learned. I recently started taking Topamax because none of the anti-depressant I tried (zoloft, effexor, wellbutrin, serzone, prozac, etc, etc, etc,) helped with my irritability/anger/rage. My new psychiatrist suggested I try a mood stabalizer. I have not be diagnosed manic/depressive, but I have never been uniformly depressed. From what I've been told it can be trickier to treat bi-polar types because lifting the depressed mood can push us into the manic state. Since starting the Topamax, I have experienced some tingling in my fingers and some foods taste funny. My appetite has decreased a tiny bit and I was constipated for a few days. Other than that, I have not experienced anything but more calm and less worry/irritability/anger. That doesn't mean it will work for you, but I hope it will. I increased my dosage much slower: 25 mg at night for 10 days and now 25 mg morning/night for 7 days. Then I will start 50 mg at night until I see my pdoc in 3 1/2 weeks. My experience is that good psychiatrists who listen and stay current with the literature are much better to work with than GP/internists because they are specializing in our problems. However, any doctor that you feel doesn't listen to you is not worth one penny, so find someone who does. I'm lucky to have several friends in treatment, so I had lots of word-of-mouth recommendations! LOL! I'm really concerned about the Celexa if you had a manic episode--maybe someone who has been on it can speak to this. I would be more likely to blame the AD itself for the extreme aggitation rather than the dosage decrease or the Topamax. Don't you feel rich after my two cents?! Good luck figuring it all out. I know there are days that I feel like one big cocktail.

 

Re: Recently Started on Topamax for Migraines

Posted by Tigwesley on May 15, 2001, at 15:09:54

In reply to Re: Recently Started on Topamax for Migraines, posted by Lainie on April 16, 2001, at 21:24:06

> > Lainie, I too have suffered from devastating migraines as my primary complaint since I was 19. And until 1996 I had never had a problem with depression. I am currently on Topamax after Pamelor and later Depakote both caused too many side effects (though all three had an effect on them). I also use a LOT of Imitrex injections and nasal sprays.
> >
> > After having my first child in 1996, I also developed a severe depression problem, and after my second child in 1998, it blossomed into bipolar II with rapid cycling. So I was treated with meds that could also tackle migraines. Thus I'm now on Zoloft, Wellbutrin and Topamax. For me the Topamax only began to help the migraines at 400 mg, and it never has helped the mood swings in my opinion. I've been on it at that dose for 3 months. I've lost 30 pounds in three months, had constant diarrhea, and had a constant "white noise" type of scream inside my head...I don't sleep well at all. I feel constantly agitated. Joyless about life, food, art, my family, everything. I finally dropped back to 300 mg on my own and am about to drop to 200 tonight. I have just taken things into my own hands; I felt my life was in danger I was so close to the edge. Ironically, the agitation caused me to take my migraine narcotics (which I needed less for the migraines at the 400mg dose) to dull that awful Topamax feeling. They were the only things in my chemical war chest that actually helped...
> >
> > Having said this, for others on this thread, they have found Topamax excellent, and if I didn't get the agitation, I could have appreciated the headache reduction. You clearly have a very different background and may find relief.
> >
> > I would also like to point out that I got good results from Depakote, though I had some problems there with weight gain, lethargy and hair loss at 500mg. And lastly, Pamelor, an old tricyclic, worked very well with side effects of constipation and dry mouth, but the bigger problem for me there was that if I missed a dose or dropped even 5 mg I would get massive withdrawal headaches immediately and my husband would need to miss work I would be so sick. Perhaps I'm just too sensitive to drugs...
> >
> > I wish you luck and if you want to talk more, I check this board weekly to get hope and inspiration from the others here, and to learn more. If you know of a good migraine support group on the web, let me know.
>
> Cateb, thanks so much for responding. It's great to hear from another migraineur, although your medical problems and drug combinations sound a lot more complicated than mine and I wish you a lot of luck. Terrible side effects at 400 mg. of Topamax and I'm having trouble at 75! (I go to 100 tomorrow morning.) I too tried Depakote, Zoloft and Wellbutrin, and also one or two of the tricyclic drugs. All of the Depakote-like drugs and high doses of Inderal/Propranolol made me so tired I couldn't even walk, much less run three times a week, so I quickly gave them up because to me life isn't worth living if I can't exercise (which I can't until I get over this rebound drug withdrawal thing).
>
> How much Imitrex are you taking? I had to give up the injections because I just hated the idea of giving them to myself and was so thankful when they came out with the tablets. My MD says no more than two to three times/wk., but I think after 5/1 he's probably going to say 2/wk. max - maybe it has to do with the rebound effect but that's something else I need to ask him.
>
> What are you going to replace the Topamax with? I've read about so many other similar drugs on this thread that I know they're out there - have you talked to your doctor yet?
>
> Anyway, I'll have time to write more later, but wanted to tell you that although I don't know of a good migraine support group yet, there is the ACHE net which has tons of separate threads (I wish they would merge more of them) about migraines that you might want to check out. If you're not familiar with ACHE it's the American Council for Headache Education at www.achenet.org/; select Discussion Forums, where they have Expert Talk, which I haven't found too useful but you can look it over, and Headache Talk, where us common folk leave our messages.
>
> Also if it's not too late where you live I wanted you to know that there's supposed to be a program called Headache: The Painful Truth on the Discovery Channel tonight, Tuesday, April 16th at 8 and 11 p.m. ET and then again on Monday, June 4th at 9 p.m. and 12 a.m. ET. It's not available on video. Hope you get a chance to check it out.
> Again, hang in there and keep me posted about any changes.
>
> I'm so excited the clinic head/internist is finally due back Wed. after being at a conference for 10 days and I have survived without him so that's a good sign - but I have a long list of questions about Topamax and its side effects and other things!
>
> Take care,
> Lainie


Hi there!

My name is Tig. I have Chronic Daily Migraines. But I have much sympathy for those of you on this thread with Bi-polar disorder since my hubby has suffered with it for years. Although, he has not been cycling for the last 6 years, and seems to be in some sort of remission. (I didn't know there was such a thing!) We are enjoying it while it lasts.

Anyway, I am currently on Topamax I have worked up to 300mg per day and have had all the side effects you all talk about. I still have the tingly feet. I still think I need to increase my dose. I don't think we are quite there yet. But I have high hopes. I also take Propranolol 120mg as a preventative, then of course I have the usual assortment of abortives, Imitrex, Amerge, Midrin, Maxalt, Zomig, Hydroxyzpam etc. I have been on just about every drug out there for abortive and preventative, I just came off of Neurontin it lowered the Migraines but it made me very stupid, and driving was an adventure. I have to work right now and I was making way too many mistakes at work and had to come off it which was not fun. This has been a very rough month.

Lanie, it is funny that you mentioned the ice pack because I live with an ice pack wrapped around my forehead when I am at home. I use a favorite silk scarf to hold in place and iron, do laundry etc. if I feel up to it. I look like a dork but hey what ever works right? When you are in pain every single day you have to do things to get the job done.

Regarding Migraine support groups/websites etc. there are two that I go to all the time. They are great. Very supportive and informational. MAGNUM Migraine Awareness Group www.migraines.org and www.headaches.about.com the last one is an actual forum/chat/database/clearinghouse of information on everything migraine you might ever want to know.

I hope this helps. I hope everyone on this thread finds relief from the pain they are feeling.

 

Tomamax for Migraines: Terrible Cross Rxn w/Wbtn?? Tigwesley

Posted by Cateb on May 20, 2001, at 1:38:09

In reply to Re: Recently Started on Topamax for Migraines, posted by Tigwesley on May 15, 2001, at 15:09:54

Tig, Lainie and others:

As an update to my Topamax / migraine / bipolar cycling situation, I had an *incredible* breakthrough three weeks ago. I continued to wean myself off the Topamax, convinced it was making me ruminate and feel suicidal (for the first time in my life). My weight loss had continued -- I'd lost another 10 pounds the next month for a grand total of 40 pounds; scary. More liquid diarrhea.

But then it struck me that Wellbutrin has always been activating as well with me and that it was when I went on Wellbutrin that I had to then start taking Xanax. So I spoke with my doctor and began to rapidly (more rapidly than he wanted) taper off the Wellbutrin. The results have been a miracle.

Cycling's gone. Suicidal thoughts are gone. Anxiety's gone. I have perspective. I roll with the punches. My sense of humor is back. Yet empirically, things in my life have gotten worse and I should be acting out more. I had to lay off several people. I had to undergo several medical tests because my doctor found nodules in my neck and thought the rapid weight loss might have been cancer. (It wasn't -- the diarrhea and weight loss stopped with the drugs I stopped). I am living in Boston (answer to your question) but have to leave my family, two young girls, to work out of NYC every single week because of the economy in a new job I started five weeks ago. Ironically, headaches exactly the same with and without the damned drugs - Ha! What a ghost I've been chasing.

I had never officially been diagnosed with Bipolar Two until I had been put on mood stabilizers for migraines. Now all the symptoms have completely disappeared. Has anyone else out there experienced bad psychological reactions to these drugs in combination particularly? My biggest hurdle was convincing my doctor, whose own self-worth is entirely too tied up in whether his own drugs are successful or not. We just had an hour's session where I told him this and many other things, and that he needed to pay *me* for that session. I told him it was the only way we could continue. And he agreed that he had not done his job. Thanks to this board's education and support, I learned some nifty concepts, such as "concordance, not compliance".

Now I'm just on Zoloft and it's like an old friend's back: my life. Comparatively, I'll take the ice pack, imitrex injections and codeine any day. I'm now beginning to read about alternative approaches again such as meditation. They're less likely to betray me.

Cate.

> > > Lainie, I too have suffered from devastating migraines as my primary complaint since I was 19. And until 1996 I had never had a problem with depression. I am currently on Topamax after Pamelor and later Depakote both caused too many side effects (though all three had an effect on them). I also use a LOT of Imitrex injections and nasal sprays.
> > >
> > > After having my first child in 1996, I also developed a severe depression problem, and after my second child in 1998, it blossomed into bipolar II with rapid cycling. So I was treated with meds that could also tackle migraines. Thus I'm now on Zoloft, Wellbutrin and Topamax. For me the Topamax only began to help the migraines at 400 mg, and it never has helped the mood swings in my opinion. I've been on it at that dose for 3 months. I've lost 30 pounds in three months, had constant diarrhea, and had a constant "white noise" type of scream inside my head...I don't sleep well at all. I feel constantly agitated. Joyless about life, food, art, my family, everything. I finally dropped back to 300 mg on my own and am about to drop to 200 tonight. I have just taken things into my own hands; I felt my life was in danger I was so close to the edge. Ironically, the agitation caused me to take my migraine narcotics (which I needed less for the migraines at the 400mg dose) to dull that awful Topamax feeling. They were the only things in my chemical war chest that actually helped...
> > >
> > > Having said this, for others on this thread, they have found Topamax excellent, and if I didn't get the agitation, I could have appreciated the headache reduction. You clearly have a very different background and may find relief.
> > >
> > > I would also like to point out that I got good results from Depakote, though I had some problems there with weight gain, lethargy and hair loss at 500mg. And lastly, Pamelor, an old tricyclic, worked very well with side effects of constipation and dry mouth, but the bigger problem for me there was that if I missed a dose or dropped even 5 mg I would get massive withdrawal headaches immediately and my husband would need to miss work I would be so sick. Perhaps I'm just too sensitive to drugs...
> > >
> > > I wish you luck and if you want to talk more, I check this board weekly to get hope and inspiration from the others here, and to learn more. If you know of a good migraine support group on the web, let me know.
> >
> > Cateb, thanks so much for responding. It's great to hear from another migraineur, although your medical problems and drug combinations sound a lot more complicated than mine and I wish you a lot of luck. Terrible side effects at 400 mg. of Topamax and I'm having trouble at 75! (I go to 100 tomorrow morning.) I too tried Depakote, Zoloft and Wellbutrin, and also one or two of the tricyclic drugs. All of the Depakote-like drugs and high doses of Inderal/Propranolol made me so tired I couldn't even walk, much less run three times a week, so I quickly gave them up because to me life isn't worth living if I can't exercise (which I can't until I get over this rebound drug withdrawal thing).
> >
> > How much Imitrex are you taking? I had to give up the injections because I just hated the idea of giving them to myself and was so thankful when they came out with the tablets. My MD says no more than two to three times/wk., but I think after 5/1 he's probably going to say 2/wk. max - maybe it has to do with the rebound effect but that's something else I need to ask him.
> >
> > What are you going to replace the Topamax with? I've read about so many other similar drugs on this thread that I know they're out there - have you talked to your doctor yet?
> >
> > Anyway, I'll have time to write more later, but wanted to tell you that although I don't know of a good migraine support group yet, there is the ACHE net which has tons of separate threads (I wish they would merge more of them) about migraines that you might want to check out. If you're not familiar with ACHE it's the American Council for Headache Education at www.achenet.org/; select Discussion Forums, where they have Expert Talk, which I haven't found too useful but you can look it over, and Headache Talk, where us common folk leave our messages.
> >
> > Also if it's not too late where you live I wanted you to know that there's supposed to be a program called Headache: The Painful Truth on the Discovery Channel tonight, Tuesday, April 16th at 8 and 11 p.m. ET and then again on Monday, June 4th at 9 p.m. and 12 a.m. ET. It's not available on video. Hope you get a chance to check it out.
> > Again, hang in there and keep me posted about any changes.
> >
> > I'm so excited the clinic head/internist is finally due back Wed. after being at a conference for 10 days and I have survived without him so that's a good sign - but I have a long list of questions about Topamax and its side effects and other things!
> >
> > Take care,
> > Lainie
>
>
> Hi there!
>
> My name is Tig. I have Chronic Daily Migraines. But I have much sympathy for those of you on this thread with Bi-polar disorder since my hubby has suffered with it for years. Although, he has not been cycling for the last 6 years, and seems to be in some sort of remission. (I didn't know there was such a thing!) We are enjoying it while it lasts.
>
> Anyway, I am currently on Topamax I have worked up to 300mg per day and have had all the side effects you all talk about. I still have the tingly feet. I still think I need to increase my dose. I don't think we are quite there yet. But I have high hopes. I also take Propranolol 120mg as a preventative, then of course I have the usual assortment of abortives, Imitrex, Amerge, Midrin, Maxalt, Zomig, Hydroxyzpam etc. I have been on just about every drug out there for abortive and preventative, I just came off of Neurontin it lowered the Migraines but it made me very stupid, and driving was an adventure. I have to work right now and I was making way too many mistakes at work and had to come off it which was not fun. This has been a very rough month.
>
> Lanie, it is funny that you mentioned the ice pack because I live with an ice pack wrapped around my forehead when I am at home. I use a favorite silk scarf to hold in place and iron, do laundry etc. if I feel up to it. I look like a dork but hey what ever works right? When you are in pain every single day you have to do things to get the job done.
>
> Regarding Migraine support groups/websites etc. there are two that I go to all the time. They are great. Very supportive and informational. MAGNUM Migraine Awareness Group www.migraines.org and www.headaches.about.com the last one is an actual forum/chat/database/clearinghouse of information on everything migraine you might ever want to know.
>
> I hope this helps. I hope everyone on this thread finds relief from the pain they are feeling.

 

Re: Tomamax for Migraines: Terrible Cross Rxn w/Wbtn??

Posted by bob on May 24, 2001, at 10:34:58

In reply to Tomamax for Migraines: Terrible Cross Rxn w/Wbtn?? Tigwesley, posted by Cateb on May 20, 2001, at 1:38:09

> Tig, Lainie and others:
>
> As an update to my Topamax / migraine / bipolar cycling situation, I had an *incredible* breakthrough three weeks ago. I continued to wean myself off the Topamax, convinced it was making me ruminate and feel suicidal (for the first time in my life). My weight loss had continued -- I'd lost another 10 pounds the next month for a grand total of 40 pounds; scary. More liquid diarrhea.
>
> But then it struck me that Wellbutrin has always been activating as well with me and that it was when I went on Wellbutrin that I had to then start taking Xanax. So I spoke with my doctor and began to rapidly (more rapidly than he wanted) taper off the Wellbutrin. The results have been a miracle.
>
> Cycling's gone. Suicidal thoughts are gone. Anxiety's gone. I have perspective. I roll with the punches. My sense of humor is back. Yet empirically, things in my life have gotten worse and I should be acting out more. I had to lay off several people. I had to undergo several medical tests because my doctor found nodules in my neck and thought the rapid weight loss might have been cancer. (It wasn't -- the diarrhea and weight loss stopped with the drugs I stopped). I am living in Boston (answer to your question) but have to leave my family, two young girls, to work out of NYC every single week because of the economy in a new job I started five weeks ago. Ironically, headaches exactly the same with and without the damned drugs - Ha! What a ghost I've been chasing.
>
> I had never officially been diagnosed with Bipolar Two until I had been put on mood stabilizers for migraines. Now all the symptoms have completely disappeared. Has anyone else out there experienced bad psychological reactions to these drugs in combination particularly? My biggest hurdle was convincing my doctor, whose own self-worth is entirely too tied up in whether his own drugs are successful or not. We just had an hour's session where I told him this and many other things, and that he needed to pay *me* for that session. I told him it was the only way we could continue. And he agreed that he had not done his job. Thanks to this board's education and support, I learned some nifty concepts, such as "concordance, not compliance".
>
> Now I'm just on Zoloft and it's like an old friend's back: my life. Comparatively, I'll take the ice pack, imitrex injections and codeine any day. I'm now beginning to read about alternative approaches again such as meditation. They're less likely to betray me.
>
> Cate.
>
> > > > Lainie, I too have suffered from devastating migraines as my primary complaint since I was 19. And until 1996 I had never had a problem with depression. I am currently on Topamax after Pamelor and later Depakote both caused too many side effects (though all three had an effect on them). I also use a LOT of Imitrex injections and nasal sprays.
> > > >
> > > > After having my first child in 1996, I also developed a severe depression problem, and after my second child in 1998, it blossomed into bipolar II with rapid cycling. So I was treated with meds that could also tackle migraines. Thus I'm now on Zoloft, Wellbutrin and Topamax. For me the Topamax only began to help the migraines at 400 mg, and it never has helped the mood swings in my opinion. I've been on it at that dose for 3 months. I've lost 30 pounds in three months, had constant diarrhea, and had a constant "white noise" type of scream inside my head...I don't sleep well at all. I feel constantly agitated. Joyless about life, food, art, my family, everything. I finally dropped back to 300 mg on my own and am about to drop to 200 tonight. I have just taken things into my own hands; I felt my life was in danger I was so close to the edge. Ironically, the agitation caused me to take my migraine narcotics (which I needed less for the migraines at the 400mg dose) to dull that awful Topamax feeling. They were the only things in my chemical war chest that actually helped...
> > > >
> > > > Having said this, for others on this thread, they have found Topamax excellent, and if I didn't get the agitation, I could have appreciated the headache reduction. You clearly have a very different background and may find relief.
> > > >
> > > > I would also like to point out that I got good results from Depakote, though I had some problems there with weight gain, lethargy and hair loss at 500mg. And lastly, Pamelor, an old tricyclic, worked very well with side effects of constipation and dry mouth, but the bigger problem for me there was that if I missed a dose or dropped even 5 mg I would get massive withdrawal headaches immediately and my husband would need to miss work I would be so sick. Perhaps I'm just too sensitive to drugs...
> > > >
> > > > I wish you luck and if you want to talk more, I check this board weekly to get hope and inspiration from the others here, and to learn more. If you know of a good migraine support group on the web, let me know.
> > >
> > > Cateb, thanks so much for responding. It's great to hear from another migraineur, although your medical problems and drug combinations sound a lot more complicated than mine and I wish you a lot of luck. Terrible side effects at 400 mg. of Topamax and I'm having trouble at 75! (I go to 100 tomorrow morning.) I too tried Depakote, Zoloft and Wellbutrin, and also one or two of the tricyclic drugs. All of the Depakote-like drugs and high doses of Inderal/Propranolol made me so tired I couldn't even walk, much less run three times a week, so I quickly gave them up because to me life isn't worth living if I can't exercise (which I can't until I get over this rebound drug withdrawal thing).
> > >
> > > How much Imitrex are you taking? I had to give up the injections because I just hated the idea of giving them to myself and was so thankful when they came out with the tablets. My MD says no more than two to three times/wk., but I think after 5/1 he's probably going to say 2/wk. max - maybe it has to do with the rebound effect but that's something else I need to ask him.
> > >
> > > What are you going to replace the Topamax with? I've read about so many other similar drugs on this thread that I know they're out there - have you talked to your doctor yet?
> > >
> > > Anyway, I'll have time to write more later, but wanted to tell you that although I don't know of a good migraine support group yet, there is the ACHE net which has tons of separate threads (I wish they would merge more of them) about migraines that you might want to check out. If you're not familiar with ACHE it's the American Council for Headache Education at www.achenet.org/; select Discussion Forums, where they have Expert Talk, which I haven't found too useful but you can look it over, and Headache Talk, where us common folk leave our messages.
> > >
> > > Also if it's not too late where you live I wanted you to know that there's supposed to be a program called Headache: The Painful Truth on the Discovery Channel tonight, Tuesday, April 16th at 8 and 11 p.m. ET and then again on Monday, June 4th at 9 p.m. and 12 a.m. ET. It's not available on video. Hope you get a chance to check it out.
> > > Again, hang in there and keep me posted about any changes.
> > >
> > > I'm so excited the clinic head/internist is finally due back Wed. after being at a conference for 10 days and I have survived without him so that's a good sign - but I have a long list of questions about Topamax and its side effects and other things!
> > >
> > > Take care,
> > > Lainie
> >
> >
> > Hi there!
> >
> > My name is Tig. I have Chronic Daily Migraines. But I have much sympathy for those of you on this thread with Bi-polar disorder since my hubby has suffered with it for years. Although, he has not been cycling for the last 6 years, and seems to be in some sort of remission. (I didn't know there was such a thing!) We are enjoying it while it lasts.
> >
> > Anyway, I am currently on Topamax I have worked up to 300mg per day and have had all the side effects you all talk about. I still have the tingly feet. I still think I need to increase my dose. I don't think we are quite there yet. But I have high hopes. I also take Propranolol 120mg as a preventative, then of course I have the usual assortment of abortives, Imitrex, Amerge, Midrin, Maxalt, Zomig, Hydroxyzpam etc. I have been on just about every drug out there for abortive and preventative, I just came off of Neurontin it lowered the Migraines but it made me very stupid, and driving was an adventure. I have to work right now and I was making way too many mistakes at work and had to come off it which was not fun. This has been a very rough month.
> >
> > Lanie, it is funny that you mentioned the ice pack because I live with an ice pack wrapped around my forehead when I am at home. I use a favorite silk scarf to hold in place and iron, do laundry etc. if I feel up to it. I look like a dork but hey what ever works right? When you are in pain every single day you have to do things to get the job done.
> >
> > Regarding Migraine support groups/websites etc. there are two that I go to all the time. They are great. Very supportive and informational. MAGNUM Migraine Awareness Group www.migraines.org and www.headaches.about.com the last one is an actual forum/chat/database/clearinghouse of information on everything migraine you might ever want to know.
> >
> > I hope this helps. I hope everyone on this thread finds relief from the pain they are feeling.


Cateb:

I too, have been on Topomax (250mg) for quite awhile, and am now weaning my self off also. I was just curious as to what level you had stabilized at, and how quickly you were coming off?

Bob

 

Re: Tomamax for weight loss

Posted by limey on May 25, 2001, at 9:54:02

In reply to Re: Tomamax for Migraines: Terrible Cross Rxn w/Wbtn??, posted by bob on May 24, 2001, at 10:34:58

I have suffered from severe depression and anxiety for 20 years, and have been on many different anti-depressants. Paxil worked very well and I have been on it for 5 years - but, my weight has totally ballooned!! (Don't know my weight since I avoid the scales like the plague!) But, I have put up with this side-effect because it felt sooooo good not to be under that constant black cloud! However, I finally suggest to my pdoc that surely he can give me an AD that will help me but won't make me gain so much weight!! He has now switched me to effexor 225gm at night, and that it working great! Now he wants to add Topamax to help with the weight gain. I found this link by surfing the net to get more info' on Topamax, and have read everything you have all written since the thread started in Jan. The side effects seem pretty severe just to loose weight. Has anyone any suggestions for me? I see my doc next week and he wants to start the Topamax then. Please help!
- Limey

 

Re: Tomamax for weight loss

Posted by Lexie on May 26, 2001, at 7:31:31

In reply to Re: Tomamax for weight loss, posted by limey on May 25, 2001, at 9:54:02

Everyone else has heard me say this so plug up your ears. So for Limey, I was put on Topamax almost a year ago, I am now, everyone, as of last month up to 500 mgs, and I have lost 35 pounds and am NOW 120 pounds at 5'9", underweight for my height. Yes, it does cause weight loss, just be careful what you ask for you just might get it. I have become a bit obessed with the entire weight loss thing. I am catching a bit of grief from my family. My doctor hasn't noticed because of the clothes I wear to my visits. I had been 137 before going on the AD's (while on the AD's I got up to 155) when I was put on Topamax I should have maintained when I reached 137. Most importantly it has been a great drug for Bipolar 2, the ups and downs and acting out. The only one that has worked for me. Just be sure to maintain a healthy weight, my best advise. Take care of yourself. Lexie

 

Re: Tomamax for weight loss

Posted by limey on May 26, 2001, at 8:56:03

In reply to Re: Tomamax for weight loss, posted by Lexie on May 26, 2001, at 7:31:31

To Lexie, Thanks for the advice and answering my call! I am new to this site (I expect you've guessed!) and after posting my note, I searched the archives and found all kinds of opinions on this med. I am so tired of being XX-LARGE - at times, I say "To heck with it, I'm going off!" but, then the depression/anxiety/panic comes back and being over-weight suddenly pales in comparison. It was so marvellous to find this site and read all the experiences of other sufferers - these meds. really are a two-edged sword - but, considering what the first ones were like when I was initially "diagnosed" 20 years ago, these newer ones are a blessing. (If only they could find an effective one without the huge weight gains!!!!) But, I am hopeful that the Topamax together with effexor will help - it doesn't hurt to look on the bright side - right? - Limey

 

Re: Tomamax for weight loss

Posted by Lexie on May 26, 2001, at 16:33:45

In reply to Re: Tomamax for weight loss, posted by limey on May 26, 2001, at 8:56:03

Limey, I think you are the right track trying out the Topamax. What worked for me was Topamax with Lamictal, another anti-sezuire medication that has AD qualities but no history of weight gain. You may want to ask your doctor about it. Everyone is different, I am offering some friendly advise from someone who has been there. I think you have the right attitude to go into this looking on the bright side, I did and maybe that is why I was so successful. Topamax is not a magic bullet. For me it helped with the sweet cravings that were so overwhelming with the AD's and the cravings to "Snack" at times when I normally wouldn't. Let us know how you are doing.

 

Re: Tomamax for Migraines: Terrible Cross Rxn w/Wbtn?? bob

Posted by Cateb on May 27, 2001, at 7:13:26

In reply to Re: Tomamax for Migraines: Terrible Cross Rxn w/Wbtn??, posted by bob on May 24, 2001, at 10:34:58

Bob,

Apologies for the slow response; I can only check the board on weekends.

I was on 200mg of Topamax for a long time and then my doctor quickly moved me up to 400mg. He did this because I was having crying jags and was really not holding together at all even in conversations with friends, kept wishing I "could go home" (when I was home -- we'd sold our house and things hadn't worked out as well as planned but I couldn't let go of it). I was also on 100 mg of Zoloft at the time and, more importantly, 300 mg of Wellbutrin. That's what I think was somehow contributing to things along with the Topamax. In my case anyway.

I stayed on the 400mg for two months and then tapered off after the weight loss and other symptoms became so extreme, including suidical thoughts. These were things I couldn't talk about at the time because to give words to them would make them more of a real option. But they were incredibly frightening and caused me to look beyond the Topamax; my gut just told me that the way I had reacted to the circumstances of my life was just *so* different that there was something chemically that I was doing to meddle with myself. And I knew that the Zoloft alone had been fine. So that's when I insisted that the Wellbutrin had to go, too . When it did,all the symptoms disappeared. I should add that things like cycling mental state also evaporated dispite a scare that I might have cancer (my internist found nodules in my neck when he was checking for reasons for this chronic diarrhea and sudden severe 40 pound weight loss) and when the following week I had to lay off a third of my organization at work. In other words, even my doctor couldn't say honestly that it was just that my circumstances improved because they deteriorated dramatically! And I felt *great*, lots of good perspective and actual joy, believe it or not. That was toward the end of April and I've felt pretty calm, able to surf life's waves every day since, just on the Zoloft. Phew.

I know that's more than you asked, but I want to make sure I clarify that I don't know in my case what was Wellbutrin and what was Topamax. Indeed, I don't know if Wellbutrin made me *look* bipolar because I was so sensitive to its activating tendencies and then they gave me Topamax, justifying it also on the basis of the migraines. I know they interacted; I could feel Wellbutrin getting nastier(and I was never on Topamax alone). But to be fair to Topamax, I only know that now they're both gone and I'm a happy person for the first time *since I've been on Wellbutrin*.

> > Tig, Lainie and others:
> >
> > As an update to my Topamax / migraine / bipolar cycling situation, I had an *incredible* breakthrough three weeks ago. I continued to wean myself off the Topamax, convinced it was making me ruminate and feel suicidal (for the first time in my life). My weight loss had continued -- I'd lost another 10 pounds the next month for a grand total of 40 pounds; scary. More liquid diarrhea.
> >
> > But then it struck me that Wellbutrin has always been activating as well with me and that it was when I went on Wellbutrin that I had to then start taking Xanax. So I spoke with my doctor and began to rapidly (more rapidly than he wanted) taper off the Wellbutrin. The results have been a miracle.
> >
> > Cycling's gone. Suicidal thoughts are gone. Anxiety's gone. I have perspective. I roll with the punches. My sense of humor is back. Yet empirically, things in my life have gotten worse and I should be acting out more. I had to lay off several people. I had to undergo several medical tests because my doctor found nodules in my neck and thought the rapid weight loss might have been cancer. (It wasn't -- the diarrhea and weight loss stopped with the drugs I stopped). I am living in Boston (answer to your question) but have to leave my family, two young girls, to work out of NYC every single week because of the economy in a new job I started five weeks ago. Ironically, headaches exactly the same with and without the damned drugs - Ha! What a ghost I've been chasing.
> >
> > I had never officially been diagnosed with Bipolar Two until I had been put on mood stabilizers for migraines. Now all the symptoms have completely disappeared. Has anyone else out there experienced bad psychological reactions to these drugs in combination particularly? My biggest hurdle was convincing my doctor, whose own self-worth is entirely too tied up in whether his own drugs are successful or not. We just had an hour's session where I told him this and many other things, and that he needed to pay *me* for that session. I told him it was the only way we could continue. And he agreed that he had not done his job. Thanks to this board's education and support, I learned some nifty concepts, such as "concordance, not compliance".
> >
> > Now I'm just on Zoloft and it's like an old friend's back: my life. Comparatively, I'll take the ice pack, imitrex injections and codeine any day. I'm now beginning to read about alternative approaches again such as meditation. They're less likely to betray me.
> >
> > Cate.
> >
> > > > > Lainie, I too have suffered from devastating migraines as my primary complaint since I was 19. And until 1996 I had never had a problem with depression. I am currently on Topamax after Pamelor and later Depakote both caused too many side effects (though all three had an effect on them). I also use a LOT of Imitrex injections and nasal sprays.
> > > > >
> > > > > After having my first child in 1996, I also developed a severe depression problem, and after my second child in 1998, it blossomed into bipolar II with rapid cycling. So I was treated with meds that could also tackle migraines. Thus I'm now on Zoloft, Wellbutrin and Topamax. For me the Topamax only began to help the migraines at 400 mg, and it never has helped the mood swings in my opinion. I've been on it at that dose for 3 months. I've lost 30 pounds in three months, had constant diarrhea, and had a constant "white noise" type of scream inside my head...I don't sleep well at all. I feel constantly agitated. Joyless about life, food, art, my family, everything. I finally dropped back to 300 mg on my own and am about to drop to 200 tonight. I have just taken things into my own hands; I felt my life was in danger I was so close to the edge. Ironically, the agitation caused me to take my migraine narcotics (which I needed less for the migraines at the 400mg dose) to dull that awful Topamax feeling. They were the only things in my chemical war chest that actually helped...
> > > > >
> > > > > Having said this, for others on this thread, they have found Topamax excellent, and if I didn't get the agitation, I could have appreciated the headache reduction. You clearly have a very different background and may find relief.
> > > > >
> > > > > I would also like to point out that I got good results from Depakote, though I had some problems there with weight gain, lethargy and hair loss at 500mg. And lastly, Pamelor, an old tricyclic, worked very well with side effects of constipation and dry mouth, but the bigger problem for me there was that if I missed a dose or dropped even 5 mg I would get massive withdrawal headaches immediately and my husband would need to miss work I would be so sick. Perhaps I'm just too sensitive to drugs...
> > > > >
> > > > > I wish you luck and if you want to talk more, I check this board weekly to get hope and inspiration from the others here, and to learn more. If you know of a good migraine support group on the web, let me know.
> > > >
> > > > Cateb, thanks so much for responding. It's great to hear from another migraineur, although your medical problems and drug combinations sound a lot more complicated than mine and I wish you a lot of luck. Terrible side effects at 400 mg. of Topamax and I'm having trouble at 75! (I go to 100 tomorrow morning.) I too tried Depakote, Zoloft and Wellbutrin, and also one or two of the tricyclic drugs. All of the Depakote-like drugs and high doses of Inderal/Propranolol made me so tired I couldn't even walk, much less run three times a week, so I quickly gave them up because to me life isn't worth living if I can't exercise (which I can't until I get over this rebound drug withdrawal thing).
> > > >
> > > > How much Imitrex are you taking? I had to give up the injections because I just hated the idea of giving them to myself and was so thankful when they came out with the tablets. My MD says no more than two to three times/wk., but I think after 5/1 he's probably going to say 2/wk. max - maybe it has to do with the rebound effect but that's something else I need to ask him.
> > > >
> > > > What are you going to replace the Topamax with? I've read about so many other similar drugs on this thread that I know they're out there - have you talked to your doctor yet?
> > > >
> > > > Anyway, I'll have time to write more later, but wanted to tell you that although I don't know of a good migraine support group yet, there is the ACHE net which has tons of separate threads (I wish they would merge more of them) about migraines that you might want to check out. If you're not familiar with ACHE it's the American Council for Headache Education at www.achenet.org/; select Discussion Forums, where they have Expert Talk, which I haven't found too useful but you can look it over, and Headache Talk, where us common folk leave our messages.
> > > >
> > > > Also if it's not too late where you live I wanted you to know that there's supposed to be a program called Headache: The Painful Truth on the Discovery Channel tonight, Tuesday, April 16th at 8 and 11 p.m. ET and then again on Monday, June 4th at 9 p.m. and 12 a.m. ET. It's not available on video. Hope you get a chance to check it out.
> > > > Again, hang in there and keep me posted about any changes.
> > > >
> > > > I'm so excited the clinic head/internist is finally due back Wed. after being at a conference for 10 days and I have survived without him so that's a good sign - but I have a long list of questions about Topamax and its side effects and other things!
> > > >
> > > > Take care,
> > > > Lainie
> > >
> > >
> > > Hi there!
> > >
> > > My name is Tig. I have Chronic Daily Migraines. But I have much sympathy for those of you on this thread with Bi-polar disorder since my hubby has suffered with it for years. Although, he has not been cycling for the last 6 years, and seems to be in some sort of remission. (I didn't know there was such a thing!) We are enjoying it while it lasts.
> > >
> > > Anyway, I am currently on Topamax I have worked up to 300mg per day and have had all the side effects you all talk about. I still have the tingly feet. I still think I need to increase my dose. I don't think we are quite there yet. But I have high hopes. I also take Propranolol 120mg as a preventative, then of course I have the usual assortment of abortives, Imitrex, Amerge, Midrin, Maxalt, Zomig, Hydroxyzpam etc. I have been on just about every drug out there for abortive and preventative, I just came off of Neurontin it lowered the Migraines but it made me very stupid, and driving was an adventure. I have to work right now and I was making way too many mistakes at work and had to come off it which was not fun. This has been a very rough month.
> > >
> > > Lanie, it is funny that you mentioned the ice pack because I live with an ice pack wrapped around my forehead when I am at home. I use a favorite silk scarf to hold in place and iron, do laundry etc. if I feel up to it. I look like a dork but hey what ever works right? When you are in pain every single day you have to do things to get the job done.
> > >
> > > Regarding Migraine support groups/websites etc. there are two that I go to all the time. They are great. Very supportive and informational. MAGNUM Migraine Awareness Group www.migraines.org and www.headaches.about.com the last one is an actual forum/chat/database/clearinghouse of information on everything migraine you might ever want to know.
> > >
> > > I hope this helps. I hope everyone on this thread finds relief from the pain they are feeling.
>
>
>
>
> Cateb:
>
> I too, have been on Topomax (250mg) for quite awhile, and am now weaning my self off also. I was just curious as to what level you had stabilized at, and how quickly you were coming off?
>
> Bob

 

Re: Tomamax for weight loss

Posted by Cateb on May 27, 2001, at 7:34:29

In reply to Re: Tomamax for weight loss, posted by Lexie on May 26, 2001, at 7:31:31

When Lexie said her doctor didn't even notice her extremely dramatic weight lost, that really struck a chord with me. I lost 40 pounds on Topamax and I'm 5'8". But my doctor didn't notice, either. I think, regardless of the clothes I'm wearing, that this is irresponsible, and it's been bugging me for a while. Until I read this, it didn't face my own feelings about my doctor. He also wouldn't listen to me when I said that I thought the Wellbutrin/Topamax combo he had me on was really messing with my head. Pretty serious when I began to have suicidal thoughts and then didn't even feel I could talk with him about them because he spends so much time talking and not enough time listening or knowing the right thing to *do*.

I guess I'm mad that he would just throw drugs at me and not monitor me closely enough to understand (hey, or even ask me!) what the side effect were. In my case, he didn't even offer what side effects I might experience, and my history says I'm prone to them if there's such a thing. It's only as I began to get burned by some drugs and started grilling him and found this board (and learned the phrase "concordance versus compliance" from Cam W.) that he got on his toes.

I think I know the kinds of posts this will elicit...my husband has been urging me to switch doctors for a while now.


> Everyone else has heard me say this so plug up your ears. So for Limey, I was put on Topamax almost a year ago, I am now, everyone, as of last month up to 500 mgs, and I have lost 35 pounds and am NOW 120 pounds at 5'9", underweight for my height. Yes, it does cause weight loss, just be careful what you ask for you just might get it. I have become a bit obessed with the entire weight loss thing. I am catching a bit of grief from my family. My doctor hasn't noticed because of the clothes I wear to my visits. I had been 137 before going on the AD's (while on the AD's I got up to 155) when I was put on Topamax I should have maintained when I reached 137. Most importantly it has been a great drug for Bipolar 2, the ups and downs and acting out. The only one that has worked for me. Just be sure to maintain a healthy weight, my best advise. Take care of yourself. Lexie

 

Re: Tomamax for weight loss

Posted by limey on May 27, 2001, at 8:32:31

In reply to Re: Tomamax for weight loss, posted by Lexie on May 26, 2001, at 16:33:45

Thanks for the words of encouragement Lexie! I only found this site a few days ago and it feels like such a weight has been lifted to read about other people's experiences, and to realize that I am NOT alone in all this! 10 years ago I had breast cancer, and now volunteer with a support group for breast cancer survivors - finding this site is like finding a support group for myself. Thanks again - I hope others find these threads as comforting. - limey

> Limey, I think you are the right track trying out the Topamax. What worked for me was Topamax with Lamictal, another anti-sezuire medication that has AD qualities but no history of weight gain. You may want to ask your doctor about it. Everyone is different, I am offering some friendly advise from someone who has been there. I think you have the right attitude to go into this looking on the bright side, I did and maybe that is why I was so successful. Topamax is not a magic bullet. For me it helped with the sweet cravings that were so overwhelming with the AD's and the cravings to "Snack" at times when I normally wouldn't. Let us know how you are doing.

 

Re: Tomamax for weight loss

Posted by Ambrosia on May 27, 2001, at 23:46:00

In reply to Re: Tomamax for weight loss, posted by limey on May 27, 2001, at 8:32:31

Just a thought > > >I would recommend Topomax to anyone who wants to lose weight. In fact, I think they should market it for that purpose--it's got to be safer than taking dexadrine or other addictive drugs. I used to take it, and within 3 months I lost like 45 pounds without even trying. I simply wasn't hungry most of the time, and didn't have the drive to snack or overeat. > > >Ambrosia

 

Re: Tomamax for weight loss Ambrosia

Posted by limey on May 28, 2001, at 7:23:14

In reply to Re: Tomamax for weight loss, posted by Ambrosia on May 27, 2001, at 23:46:00

Thanks, just a few questions for you Ambrosia. What kind of side effects did you experience? When you went off Topamax did the weight return? My weight has crept up while I was on Paxil - until I am now at the point where I don't even weigh myself any more (too depressing!!!) Now, I am on effexor, I am hoping the Topamax added to it will help - because nothing I have done has helped!!!! Wish me luck! - limey

> Just a thought > > >I would recommend Topomax to anyone who wants to lose weight. In fact, I think they should market it for that purpose--it's got to be safer than taking dexadrine or other addictive drugs. I used to take it, and within 3 months I lost like 45 pounds without even trying. I simply wasn't hungry most of the time, and didn't have the drive to snack or overeat. > > >Ambrosia

 

Re: Topamax Experiences?

Posted by Karla on May 30, 2001, at 10:30:38

In reply to Re: Topamax Experiences? maribeth, posted by kathrynbabble on May 12, 2001, at 23:30:20

I have been on topamax for aprox a year now. My neuro told me you need to be on a dose of over 200mg or more to see weight loss results. I have been at 200mg. Haven't seen any loss but I have maintained my weight when I am on lithium and celexa and they should make me gain weight. So... hmmm. My neuro added my dosage up 25 mg every 2 weeks real slow. He said when people do it to fast they have problems. I found that every time I upped it I would experience tingling in my hands and feet. It would last for 2 or 3 days and then go away. I am currently taking lithium and topamax for prevention of cluster headaches. I have also found that topamax affect my memory. Can't remember nothing anymore. That is the biggest problem. Forget apts and I have them written in a calendar book. Forget where I am driven to. UG! It gets bad some days. Had to quit working. I am collecting disability now. The doctors thought it was the depression more than the meds messing with my mind but I disagree. Thats my
opinion.

 

Re: Topamax Experiences?

Posted by Josie on May 30, 2001, at 17:50:55

In reply to Re: Topamax Experiences?, posted by Karla on May 30, 2001, at 10:30:38

Has anyone tried Neurontin? My son uses Neurontin for bipolar disorder and experiences little in the way of side effects and no weight issues.

Like many of you who have posted, he hated Topamax and had nasty symptoms with Wellbutrin.

 

Re: Topamax Experiences?

Posted by KarenK on June 3, 2001, at 20:30:28

In reply to Re: Topamax Experiences?, posted by Karla on May 30, 2001, at 10:30:38

> I have been on topamax for aprox a year now. My neuro told me you need to be on a dose of over 200mg or more to see weight loss results. I have been at 200mg. Haven't seen any loss but I have maintained my weight when I am on lithium and celexa and they should make me gain weight. So... hmmm. My neuro added my dosage up 25 mg every 2 weeks real slow. He said when people do it to fast they have problems. I found that every time I upped it I would experience tingling in my hands and feet. It would last for 2 or 3 days and then go away. I am currently taking lithium and topamax for prevention of cluster headaches. I have also found that topamax affect my memory. Can't remember nothing anymore. That is the biggest problem. Forget apts and I have them written in a calendar book. Forget where I am driven to. UG! It gets bad some days. Had to quit working. I am collecting disability now. The doctors thought it was the depression more than the meds messing with my mind but I disagree. Thats my opinion.

It's the topamax that's affecting your memory. I had to start writing everything down too because I started forgetting appts. I started losing weight before 200mgs but the real effect came at 250mg. Of course by then I couldn't eat anything and then I had a whole new problem so I had to taper down.

 

Re: Topamax for nerve pain

Posted by mcmud on June 22, 2001, at 14:56:15

In reply to Re: Topamax Experiences?, posted by KarenK on June 3, 2001, at 20:30:28

I have been on 75 mg/day Topamax for phantom
pain (I'm an AK amp since '91) for about 6 mos. I started at 25 mg and worked up from there. It completely resolved one component of pain, but left others unaffected. I also take amitriptyline (75-100 mg),hydrocodone/acet.(10mg/650mg.- 4 tabs/day), and Celebrex (200 mg- 2 tabs/day). Together, they tone it down considerably, but do not completely stop it. When it gets going, it feels like my not-toe is stuck in a wall socket.

To get back on topic, the Top. does make my arms and leg tingle noticeably and frequently. I also
notice that I awake frequently at night and think
that it is likely due to the Top. (it was not a
pattern before). I will probably switch to daytime dosing to nip that in the bud. I have noticed some irritability of late, but there are
other factors that I could attribute that to, so I
am monitoring it for the time being.

 

Re: Topamax Experiences: Long Term Use Teddy Bishop

Posted by Kingfish on August 8, 2001, at 15:52:36

In reply to Re: Topamax Experiences: Long Term Use maribeth, posted by Teddy Bishop on August 8, 2001, at 3:54:50

Maribeth:

I'm happy to see someone else has had a good experience with Topamax. I am currently at 250 mg and all side effects disappeared for me as well except for sedation, which most people don't seem to experience. I recently switched from Celexa to Prozac which kind of helped at first and am now adding Lamictal to see how its activating qualities help.

We'll see how that goes.

- K.


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