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CREEPY: Can't tolerate meds,TIRED all the time

Posted by zatar on October 22, 2011, at 0:38:41

In reply to Re: Can't tolerate meds,TIRED all the time, + Deplin, posted by creepy on October 20, 2011, at 3:12:46

> You sound a lot like me.. the sleep issues, the pain and the fatigue. I also tried topamax and it was great on pain and my PTSD symptoms. But it made me pretty stupid and I couldnt get over 50mg due to rapid cycling. I found that even a tiny dose of 12.5mg helped a lot. But my doc didnt believe me and took me off it.
> Im not sure where the fatigue and pain come from. Sometimes I have days where I feel like I got run over by a bus and I have to take several naps during the day.
> The only thing thats helped has been exercise and stimulants. of course stims make anxiety worse. I just live with it.
> wellbutrin does nothing for the pain, but desipramine was good. 25-50mg helped without much anxiety. Very good on pain. Helped a little with fatigue.
> I had a mixed-state reaction to several SSRIs but zoloft has been good to me. Helps a little with fatigue.
> If youve tried TCAs and trazodone for sleep, maybe try hydroxyzine, prazosin or seroquel at a low dose? Adding some melatonin an hour before bed can sometimes help.
>

Creepy,

Was on trazodone for years, but same thing....still woke up tired. Can't take ANY SSRI and Zoloft is way too stimulating. Really don't want to mess with the atypical antipsychotics (e.g. Seroquel), though I did try an experiment once with Risperdal when I had a Fibromyalgia flare. Took very low dose for two weeks which seemed to nip my Fibro flare in the bud. Then went off it (as per some weird protocol). When I tried it a second time 6 months later, it didn't do anything. Something to do with normalizing receptors. Too much or too long won't work. Receptors can change, but it seems a mystery how to figure it out.

Melatonin....meh. A neurologist told me that something like 30% respond to melatonin.

Anyway, I just started back on 10mg doxepin and go for another sleep study in two weeks. Now I'm trying to figure out whether there is any benefit of trimipramine over doxepin. The receptor profile looks similar, but there are some differences. Hopefully my sleep doc will know something about this and can elucidate things for me. Or it may just come down to another med trial. So sick of those. Takes forever and always results in exclusion. Even tried ondansetron once....nothing (at least there were no side effects).

I tell you. Just walking for 30 minutes each day and rest throughout the day does as much as any med I've tried. I saw a CFS specialist once who emphasized conservation of energy (read that DON'T DO TOO MUCH and REST WHEN NEEDED) is the primary focus for CFS. We keep looking for magic bullets when common sense may go a long way.

But even when I behave, there's still pain and fatigue. I can take a nap and still wake up tired even after 9 hours of uninterrupted sleep at night (on sleep meds). They call that "idiopathic hypersomnia". I personally think it's elevated inflammatory cytokines. I'm also on low dose aspirin, but don't notice any reduction in inflammation. Have rosacea and chronic dry eyes which are due to inflammation. May start on cyclosporin eye drops soon to prevent any future eye problems.

You call Topamax Stupemax. I call it, hands down, the worst drug I ever tried. I started low (1mg) and increased slow (over 2 months) to 100mg, but had BAD side effects. I think I had metabolic acidosis from it. 24 hour a day panic attacks, akathisia, couldn't write, blurred vision, confusion, agitation, etc etc etc. I couldn't drive. I just weaned myself off of it and was on Klonopin for months just to get back to some semblance of normal (for me).

I believe there are different subtypes of Fibromyalgia. What works for one doesn't work for another. And some folks have undiagnosed disorders such as Sjogren's, Lupus, Lyme, hypothyroidism, etc. I've had a terrific workup but nothing shows up except elevated antibodies to various viruses, which is non-specific.

And meds and doses that I could tolerate years ago, I cannot tolerate now. Getting older sucks and is not for the wimpy.

May discontinue the Deplin soon as I don't think it's doing anything and is $$$.

Good luck to you in your search for something that works. Whoever figures out how to treat Fibromyalgia should get a Nobel prize.

-Zatar


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