Posted by stephano on June 16, 2005, at 2:24:46
In reply to Anyone TIRED on Wellbutrin XL?, posted by islandangel on March 19, 2005, at 22:29:23
I'm new to the forum- just stumbled across some of the posts in this thread which I found particularly interesting. NeuroFranco- I too have CFS (have been ill for around a decade now) and have followed the work of Goldstein. I am in Australia but was saving up to go and see him when I found he had retired. I have little doubt that (my version of) CFS is exactly what he talks about with his lymbic hypothesis. A big "Yes" to chemical smells/sensitivity too for me!
Until recently, I had never found any medication that helped me. SSRIs and anything else that focussed on boosting serotonin did nothing and often made me worse.
It was when I CAME OFF a drug (effexor) that I finally had a good drug response. (This happened in the second year of my illness but nobody could ever tell me why it might have happened or how to recreate it). I had been on it for around 5 months (225mg), realised it wasn't doing anything good, so decided to come off it and worked down to zero over the course of a couple of weeks (which is obviously faster than is recommended). I then had a period of maybe 10-12 days where I felt (miraculously) pretty close to normal. Interesting considering many people talk of negative experiences when withdrawing from venlafaxine. It actually helped me. I had a similar response when I ceased Zoloft.
That was many years ago, and I then went through a full range of expensive, time-wasting alternative therapies. Nothing helped and I was still very ill with a range of symptoms, including moderate to severe endogenous mood disturbance (depression+ anxiety)
At the start of this year I thought again about the 'coming off effexor' phenomenon, as it was the only time over the past decade that I had felt better.
I came to the conclusion that dopamine might be involved.(Too long to explain how I came to this conclusion!) Although there are no antidepressants that specifically target dopamine here in Australia (Wellbutrin is only here as 'Zyban' for quitting smoking and is very expensive) a pharmacologist I spoke to reckoned that the noradrenaline reuptake inhibitor Edronax (reboxetine) also had some effect on dopamine. I was sceptical, but this drug did indeed help. (I think you have a different snri in the U.S...Cymbalta maybe???)
I can relate to the counter-intuitive experience of being rendered sleepy/exhausted by a stimulant, because edronax does that to me sometimes. It waxes and wanes..sometimes it helps quite a lot, sometimes it puts me to sleep, sometimes it helps with physical symptoms but not mood. (Although anxiety has been pretty well reduced)
One of the stranger symptoms I have had with this illness is very flaccid muscle tone. It happened suddenly at the start of the condition, not as a result of deconditioning or anything. The edronax works to improve that significantly, and improves muscle tone back up to near what it should be in a 30 year old. (my age) No idea why, although I had previously found that pseudophedrine in big enough doses improved muscle tone too. (So suspect it's something to do with CNS stimulation)
Anyway, the point of this post is to say that Edronax has, overall, made me more functional, but things like mood and libido are still not too good. Am going to bite the bullet and borrow money to try Wellbutrin (called 'Zyban' here, but it's the same drug, Bupropion)
I must admit that life has been a veritable nightmare since I was twenty, but I am finally seeing the tiniest hint of a light at the end of the tunnel.
Anyway- I hope the wellbutrin helps...if not, I may have to revert to the edronax and work out how to boost dopamine with a separate agent. Has anyone ever used any of the Parkinson's drugs off-label for this purpose?
Any input about anything most appreciated. Best wishes all....this is a great forum.