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Re: Entering study vs symptoms

Posted by Cairo on December 9, 2005, at 12:29:29

I am considering entering a study for the use of pregabalin in Fibromyalgia. It would be double blind and I would need to go off all meds for pain and sleep.

Right now I am on nortriptyline for pain as well as Klonopin and propranolol for panic attacks that were definitely induced by a trial of Topamax a couple of months ago. I would have thought that if the panic attacks were induced by the Topamax causing metabolic acidoses which in turn was caused by carbonic anhydrase inhibition, then when I weaned myself off the Topamax, the panic attacks would have abated, but they did not. The Klonopin helped the panic symptoms somewhat, but past a dose of 0.75mg, it causes depression and also causes my muscles to ache, like most other meds that I've tried that suppress or stimulate the HPA axis too much. SSRIs are out of the question as they all cause stiff neck and major muscle aches. Adding propranolol has helped only a bit. The nortriptyline seemed to work before the panic attacks began, but now seems to do nothing for pain.

I am weaning myself off the Klonopin, but it is a slow and painful process. I still get occasional symptoms of pounding heart and agitation, though I don't know if this is the panic attacks coming back or withdrawal symptoms from the Klonopin (I've only ever taken it only once a day at night).

I don't know if it would be better to go off all meds for the pregablin study as none seem to help all that much, or whether I'd be worsening my already shaky situation by sleeping worse and having these "panic" symptoms. The study is only for 3 months and I'm guessing that IF I receive the pregabalin (rather than placebo), it might help as Neurontin helped me a couple of years back, before they discontinued it due to weight gain and cognitive side effects. It also had a tendency to poop out, though restarting it helped relax muscles and was mildly anxiolytic. Past the 3 months, I could elect to continue/receive real pregabalin and I'd be under the care of a well-known Fibromyalgia researcher.

My local doctor options are nil as my Rheumatologist just closed her practice and moved out of state to write a book, my Internist will not treat Fibromyalgia, and my pdoc won't prescribe pregabalin off label for anxiety or something outside his area of expertise (the Neurontin lawsuits scare him - fair enough). Also, the other decent Rheumatologists are not taking new patients as they were inundated with my doc's patients after she left. So I have no one to follow me.

My questions are:

What did Topamax do that causes me to have continued panic attacks even after weaning (I never had one before Topamax)?

Are my symptoms attributed to panic attacks or Klonopin withdrawal (my pdoc said he hasn't seen Klonopin withdrawal symptoms especially at the low dose I was taking)?

Would it be crazy to go off all meds for this trial of pregabalin which I may or may not get and may or may not work?

It it's not advisable to not treat the symptoms, then what other medication(s) would you suggest?

Oh, the quandry, the decisions!

Thanks for any insights. My physician husband is just as stumped as I am that most meds don't work for me.

Cairo


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poster:Cairo thread:587337
URL: http://www.dr-bob.org/babble/20051203/msgs/587337.html