Is Topomax that bad?

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Is Topomax that bad?

Post  Tamsha101 on Thu Jan 06, 2011 9:59 am

I was given amitryptaline a month ago to try. While it seemed to diminish my extreme vertigo, I started getting awful side effects - like I was PMSing 24/7. I decided I wanted to try the natural route - mag, B2, exercise, stress elmination, sleep, etc. I went to my doctor who said to wean off of it - I'm on my last week. She said if the dizziness came back she would give me Topomax to try. I've heard horror stories about this drug. If the vertigo becomes problematic again is Topomax really that bad? Any comments or suggestions are appreciated.

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Re: Is Topomax that bad?

Post  Jangel on Thu Jan 06, 2011 11:06 am

Hi Tamsha~

I resisted taking ANY preventative for a few years (ripping up scripts left and right!) and went the natural supplement route (butterbur, feverfew/magnesium/B-2, CQ10 etc..) instead. Those helped but eventually stopped working.

Believe me, I have been anti-pharmaceutical my whole life ( I am an earthy natural woman!), but having almost daily chronic migraines changes you; you become desperate for relief, as you well know.

I finally broke down and tried Topamax last March. Some people have a very difficult time on it, but I have not. Please don't be scared off by others' horror stories, because everyone is different and you may find it very helpful.

The key to Topamax is to titrate up VERY slowly. It is a very powerful drug. I started on 15 mg and stayed there for 1-2 months, going up to 25 and staying there for 2 months. Up to 40, staying there for 2 months, up to 50 for several months. I found much relief on the 40-50 doses. Then, it did seem to stop working, so I went up to 65 and then 75, slowly.

3 weeks ago I went up to 90mg and it seems to be helping alot. In the last 2 weeks, I have had one moderate migraine that was treated with Maxalt. This is a miracle for me, after having a hellish October, November and most of December with almost daily migraines.

Side effects: I do have cognitive side effects and I notice them most when I go up in dosage. They seem to dissipate within a few weeks and I notice significant improvement. I also have the classic hand and foot tingling. Bothersome and annoying, that's about it.

The only troubling side affect is that I am more irritable and my husband notices this, though I do think pre-menopause doesn't help.
Also, I tend to have more random skin irritation and itching.

So, at this point the pros outweigh the cons.

I encourage you to try it; watch out for increased depression. If that happens, do not continue. That is one of the more serious adverse side effects. It doesn't affect everyone this way though, and it has helped many migraineurs and is worth a try in my opinion.

Also, drink lots and lots of water because of how it is processed by the kidneys - you are more susceptable to kidney stones - drinking water can reduce that risk.

It, along with neurofeedback and acupuncture, has given me some good stretches of a semi-normal life that I wouldn't have had otherwise.

Blessings and good luck. Please let us know how it goes.
cat Jane
(Sorry for the lengthy post....)
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Re: Is Topomax that bad?

Post  estre004 on Thu Jan 06, 2011 12:52 pm

Tamsha101 - As is apparent in the above response, some people have some success with it. I still haven't heard of anyone having drastic good results. I have a very low opinion of it myself. I've been able to handle any drugs until I tried Topamax. I had drastic weight reduction (food tasted horrible), low cognitive skills, came across as just plain dumb and then the depression came. I've never been depressed in my life. Now I know what people go through with depression. I quit the stuff cold turkey even though you are suppose to tirate down slowly. I emptied the bottle in the toilet. I guess I can't handle my mind being altered. The other physical stuff like dry mouth, tingling, etc. are no bid deal but I was also concerned with long time use of what it could do to the brain. Was so glad to get back my appetite also. If you decide to try it, do so cautiously. I don't want to sound so negative, but that is how I feel about that drug,. Thought you should hear both sides. Good luck and keep us informed.

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Re: Is Topomax that bad?

Post  Migrainegirl on Thu Jan 06, 2011 8:57 pm

I ended up so nauseas I couldn't get out of bed. But I know of someone else who it worked great for. In the end you just have to try something to find out if it will work for you. But do be attentive to the possible side effects. Just trying to ignore them or tough through them can end up making you way sicker, even hospitalized. This is true with any of these drugs.
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Re: Is Topomax that bad?

Post  in the dark on Thu Jan 06, 2011 11:34 pm

That was helpful information about Topomax, Jangel -- titration, water intake, etc. - I too have been on it for a while but haven't been so gentle with the titration. I am also curious about neurofeedback? Are you working with someone? an institution? Thanks, S

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Re: Is Topomax that bad?

Post  Jangel on Fri Jan 07, 2011 7:36 am

In the Dark~
I stumbled upon the Neurofeeback 3 years ago when I started seeing a therapist after my mother died - for grief counseling.

Well, as the months wore on, it became very clear that the migraines were making me miserable. So, she told me that she was a practitioner of Neurofeedback and that it nearly elminated her migraines.

Of course when I hear that claim, I am skeptical. But I trusted her, and hearing that her migraines were nowhere as frequent or debilitating as mine, I knew that perhaps it really did help her and that the Neurofeedback could help me - I had no expectation that it would eliminate anything. Plus, I had done biofeedback and if you practice the technique regularly it can be very helpful and it makes perfect sense that it can help reduce stress, which can benefit our physical and mental health in so many ways.

So, I do go weekly and although it is not a magic pill, it teachs my brain (and the rest of me) to find the calm, stable place where it knows it likes to be. Its hard to verbalize but my calming thoughts have a calming effect on my brain and hence help my brain become more stable.

The EEG I am hooked up to clearly show how "unstable" and disorganized my brain is, especially in area where migraines live (for lack of a better way to explain it.) In fact, when I first started going, my therapist was SHOCKED at how unstable my brain looked. She said "you poor woman; no wonder you are suffering so much!" She could see the migraines clearly on the EEG! It was amazing!

The neurofeedback sessions work by using a computer game, to teach me and my brain to calm the spikes of abnormal activity and the practitioner helps by using the game to give me suble "rewards" to help me do so.

It is a newer area of study and I still don't understand all of it, but I have seen improvement and when I stop going, I tend to get into patterns of more migraine activity. Again, it is subtle and not miraculous. I have left there many times and ended up with a migraine later that day. But, that probably would have happened anyway. I try to look at the overall picture with it and see it as one tool that helps me. It essentially tries to do what the anti-convulsants do, calming those overactive nerve cells, but without drugs. However, I feel that it alone doesn't cut it. With the Topamax, it seems to give me a better shot at having some normal days.

Also, since this work is with my therapist and we can bill it under "mental health", I only pay a $20.00 co-pay per session. I am very fortunate to have found this.

I would recommend trying it if you can find a practitioner and if you can find one that takes insurance.
Hope this info helps!
Blessings,
Jane cat
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Re: Is Topomax that bad?

Post  estre004 on Fri Jan 07, 2011 8:06 am

Jane - first of all I like your terminology "where the migraines live". Now we just have to find a way to move them along somewhere else or KILL them.
This therapy sounds very interesting to me. I might check it out. I figure what is there to lose (unlike worthless medications). If it works to calm the brain
whether it helps migraines or not, it sounds positive. Thanks for the info.

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Re: Is Topomax that bad?

Post  estre004 on Fri Jan 07, 2011 8:08 am

One more thing Jane, when you say therapist, do you mean a psychologist? Just wondering where to look.

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Re: Is Topomax that bad?

Post  Jangel on Fri Jan 07, 2011 8:18 am

Yes, she's a LICSW - Psychologist.

Let me know how it goes!!
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Re: Is Topomax that bad?

Post  Paradox on Fri Jan 07, 2011 10:24 am

Topamax is a miracle drug for some and a nightmare for others. I went psychotic on it (and was misdiagnosed and not taken off it), so obviously I'm scared to death of the stuff.

But, we are all very different. Just be aware of the potential side effects and have people close to you let you know if they notice a change in your behaviors or personality. Watch out for depression, manic behavior and wild mood swings.

Again, not a typical problem but it does happen. It robbed me of two years of my life.

I know others though who have had such success with it. We're all different.
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Re: Is Topomax That Bad?

Post  charmed quark on Fri Jan 07, 2011 11:46 am

I had significant mental confusion with both Topomax and Lyrica. I now simply refuse to try anything that might be psychoactive this way. I haven't tried any other neuroleptic since I tried Lyrica briefly.

HOWEVER:
1) I never really gave either a chance. I'm told the side effects diminish quickly for a lot of people. While I can't go around in a daze even for a few days, perhaps if I were ramped up more slowly I could "ease" into the drug without significant side effects. But I'm allergic to ever touching them again.

2) A lot of people I've talked to have had almost no side effects with either drug. I would guess the majority.

Still, these drugs made me very medication shy. It's now very hard to get me to try a new drug. I'm scared to death of just about any pharmaceutical I put in my mouth or get injected into me. It's probably bordering on a phobia. But now I make do with drugs whose side effects I know I can tolerate.

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Re: Is Topomax that bad?

Post  estre004 on Fri Jan 07, 2011 12:49 pm

Contrary to what Charmed Quark says, I think more people have problems with Topamax than people that don't. That is why it is nicknamed "Dopamax". My neuro even calls it that. I adjust to drugs quite well and did tirate slowly on Topamax. Just thinking of the experience gives me the creeps,. Felt like I was in the Twilight Zone. By all means, give it a try but beware, You can always stop taking it.

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Re: Is Topomax that bad?

Post  estre004 on Fri Jan 07, 2011 12:49 pm

P.S. If you do try it, let us know how it goes.

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Re: Is Topomax that bad?

Post  Tamsha101 on Fri Jan 07, 2011 1:08 pm

Thanks for all your replies - definitely lots to think about. I quit taking the Elavil yesterday - weaned myself off it slowly the past 2 weeks. Feel a bit jittery but nothing unmanagable - YET. If my MRI comes back clear tomorrow and it is definitely atypical migraine I'm dealing with, I'm going to try and approach it holistically. Topomax or any other kind of med will be my last resort. I was on such a low dose of amytriptaline and it still weirded me out. The thought of going on another one scares me.

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Re: Is Topomax that bad?

Post  Brenda on Fri Jan 07, 2011 1:50 pm

Topamax helps a lot of people, but others have serious side effect issues. When I first started taking it, I had severe nausea problems. Eventually that wore off, but I couldn't stand the memory issues. I actually forgot where I was supposed to be going when I was driving one day. The doctor lowered my dosage after that. I had to stop taking it completely after I had a kidney stone, though, because it is contraindicated for anyone who's had kidney stones.

It's one of those your mileage may vary things. It may be worth your while to try it.
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Re: Is Topomax that bad?

Post  Jangel on Fri Jan 07, 2011 1:53 pm

I have had the cognitive side effects of Topamax and know for sure why it is called Dopamax. That said, for many users the cognitive side effects diminish significantly once your body gets used to the dose. That has been my experience. You have to give yourself time.

I do have slower moments and word retrieval issues occasionally and I have to double check my written communication more frequently. But it hasn't interfered with my work which requires me to be very sharp and to have excellent communication skills.

It it always a trade off; all drugs have side effects. Do the negatives outweigh the benefits or vice versa? It is up to the individual.

For now, I will stay on Topamax because I am having pretty good success with it and know that it is helping to give me more of a normal life than I would have without it. Fewer migraines. Period.

I would generally say that the side effects have been quite mild and nowhere near as dramatic as some others on this board who have tried the drug.

Again, I would try it; as far as preventatives go, Topamax is one of the only ones that has been approved by the FDA specifically for migraines and has a very good track record in terms of success rate. Only in individual can determine if the side effects will be tolerable.

Good luck and blessings!
Jane cat
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Re: Is Topomax that bad?

Post  Sara79 on Fri Jan 07, 2011 9:10 pm

If you do go that route, I hope it works great for you!

I was in the batch of people who have marked it "Never Again!" I tried it, and became so absent minded I was failing an Anatomy course. Which gave me panic attacks and made me feel suicidal. Its now listed as an 'allergy' in my chart so that no other doctor will try to prescribe it to me.

I had a coworker who loved it and it worked great for her, just to show the other side of the coin.

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Re: Is Topomax that bad?

Post  starburst on Sat Jan 08, 2011 12:09 am

I'm unfortunately one of the people who hates Topomax. I did come in to write about my side effect though, because it's not one many people know about. I don't remember my dosage any more, as i could only go on it for three weeks. But it caused my face to begin to burn and ache. Imagine having a giant sinus infection and frostbite at the same time and you'll get some idea of what it was like. My face has never been normal since I took the stuff. Like I said, it's not at all a common reaction, but something to look out for. I hope it helps you if you decide to use it.

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Re: Is Topomax that bad?

Post  cupatea on Sat Jan 08, 2011 4:43 am

I was on topamax about 3 or 4 years ago for about 18 months. I did experience most of the side effects everyone else stated, especially the 'topo-fog' brain, but overall it was the most successful preventative that I had ever taken.
I read in detail whatever I could find about what to expect with side effects when I started, so I was aware of them.
Like someone mentioned above (sorry, its 3:40am and my memory is rather cognitively impaired right now!), it is something to consider if the pain relief outweigh the side effects. For me, it did. I had plentiful side effects, but the diminished migraines and severity made it an easy decision to keep taking it.
As one said, titrate up very very slowly. I got irritable when I got to 50mg, then when I increased my dosage after that, the irritability subsided. When I got to 200mg, and it ceased to work, I stopped taking it.
I've tried since twice to go back on it, but have not been successful, unfortunately.
Still searching for the elusive preventative that actually works!
Best wishes,
Tanya
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