Do too many doctors rely on Topamax?

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Do too many doctors rely on Topamax?

Post  Feddy on Sat Dec 29, 2012 9:10 am

I was reading and thinking and thought I would pose this question - do too many doctors rely on Topamax as "drug of choice" for migraines when in fact, many of us may not have "ideal" experiences?

I was just reading the post about topamax and psychotic issues. When I first started Topamax (a few months in) I got severely depressed and anxious (this was the second depressive episode for me over a ten year period). I was having panic attacks, gained a ton of weight (not typical) and couldn't get out of bed. I had a lot of other stuff going on and both my migraine doc and my psychiatrist deemed it to be psychological and not a result of the drug but I was never sure. To me, the onset of depression and anxiety coincided perfectly with starting topo.

I went on a combo, 200mg Topamax, 60 mg Cymbalta and while it took almost two years, I got my mental health back. Now I'm off everything, including the anti-depressant. Whenever I broach alternatives with my doctor, she says "you're a Topamax girl, why change?" but I'm not sure I can do that again. She doesn't seem to want to hear it and insists that it's the right solution for me. I know I need to find a new pain doctor. Any recommendations in Toronto, Canada?

But beyond that it made me really think about the limitations many doctors face when treating us. I have also tried nortriptylene (had heart palpitations and came right off), Zanaflex, nerve blocks and something else (I don't remember anymore). I can't use beta blockers because of a family history of high blood pressure and high cholesterol (mine is fine but nobody wants to mess with me just in case).

Have others had similar issues with doctors not willing to try other things when they (not us) believe they have found the magic bullet?

Feddy

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Re: Do too many doctors rely on Topamax?

Post  tortoisegirl on Sat Dec 29, 2012 7:42 pm

I think its ridiculous for a doctor to insist on one med. Although I think there is a lot of data showing Topamax is one of the preventatives most likely to be successful, I think the majority of doctors downplay the potential side effects, start at too high of a dose, increase the dose too fast, and claim that if a side effect isn't in the list (such as hair loss), it can't be from the med!

I had a neuro try to tell me that at age 20, the hair loss I was experiencing couldn't be from the Topamax. Um, not true. I'd dump this doctor fast. There are many more meds and treatments to try. Even if this med was to get someone pain free (which is rare), if it causes you to be miserable with side effects, it isn't worth it.

I know that some folks respond to it, but I know of few who both respond to it and can tolerate it. Seems like epilepsy patients are less sensitive to meds than headache patients. I haven't had this issue in particular, but have had my share of doctors with peculiarities. One is known to be a specialist for my condition yet didn't want to try anything else on me as they thought everything I hadn't tried either wasn't likely to help, or was too dangerous.

I just can't sit here and do nothing. Too many downplay the risks and potential side effects of these meds. Hope you can find a new doctor which gives you some treatment options. How does this doctor know Topamax would be the only thing to work for you? And, does it really count as working if you can't tolerate it?

There should be many meds left to try, especially if you have really only been tried on those few meds. A good doctor will take your concerns into account and try you on some less drastic meds first, before pulling out other heavy hitters like Topamax and Cymbalta (which I'd have to say are both in my top 5 list of worst meds, out of 50 or more). Best wishes.

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Re: Do too many doctors rely on Topamax?

Post  Migrainegirl on Sat Dec 29, 2012 9:07 pm

Doctors get sold on the newest wonder drugs by the pharmaceutical sales reps.
They spend a lot of time and money convincing doctors how great each new drug is.
My sister in law has this job, so I've heard a lot about how this business is done.
The government finally had to step in to stop some of their most egregious practices.

It sounds like your doctor bought into the Topomax sales pitch. Really, I've heard from so many people who had had such bad experiences with this drug. It sounds like your doctor needs to hear loudly and clearly that the side effects are a significant problem for a lot of people and most particularly for you. She needs to look further into these "wonder drugs". Maybe she hasn't quite figured out yet that many of these drug get over sold.
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Re: Do too many doctors rely on Topamax?

Post  Mini on Sun Dec 30, 2012 5:25 am

I have also had a very bad experience with Topomax.
When my neuro suggested Tpomax (to replace Gabapentin which I was taking for some time) he also said that if I am not happy about it for any reason, or experience bad s/e I am to call him directly.
I had a most awful reaction with the bad rash and the skin on the tips of my fingers peeling off and I felt restless and not myself soon after taking it even on the lowest dose, so I called his secretary and she called me back straight away telling me that she spoke to my neuro and he said to stop it immediately (and continue with Gabapentin as before).

I think that many doctors are trying Topomax at the moment. I think they all read some latest piece of research fashinable at the time and try it on us. All we can do is to be aware of that fact, and watch out for anything unusual when starting on new medictaion.

Still, Topomax can work very well for some people, so unless we try something we will not know what works for us.
Bur if we are unhappy about the treatment we must be able to stop and insist to the docotr that this is not the right medication for us, and to suggest tha he must check all information about the s/e (as in my experience they seldom do, they are always in too much of a hurry).


Last edited by Mini on Tue Jan 01, 2013 1:01 pm; edited 1 time in total
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My thoughts exactly!

Post  Feddy on Tue Jan 01, 2013 12:15 pm

Thanks for validating what I was feeling. I agree with everything and these are all the thoughts I was having that prompted me to ask the question. My quest for the beginning of 2013 is to find a great, new neurologist close enough to home that I can trust. Easier said than done but I need someone to help me try again (and again and again if necessary).

One thought - for me, Cymbalta saved my life. I was severely depressed and didn't respond to other drugs that my doctor tried. It had NASTY side effects, mostly weight gain and sexual. But it got my brain working properly again. In my past experience with depression, I was treated with Prozac, also extremely effective and hotly debated.

Happy New Year

Feddy

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