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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 6 of 6. This is the beginning of the thread.
Posted by poser938 on July 8, 2012, at 17:47:48
im about out of ideas for my permanent dopamine agonist withdrawal syndrome. i've been like this for 3 years now. mirapex messed me up, it is like it made my brain not produce its own dopamine anymore. further stimulation from any other dopamine meds make me feel a bit better while its in my system, but them im permanently worse after it is out of my system. cyproheptadines serotonin antagonism used to help until i got too tolerant to too high a dose. i've tried antipsychotics hoping it would have the opposite effect of the mirapex, but they do nothing for me. i've tried buspar, too.. only to be made worse. ritalin made me worse. ketamine didnt help and neither did RTMS treatments. i've tried low and high doses of fish oil. magnesium, alpha lipoic acid, n-acetyl-cysteine, and forskolin.
my doctor mentioned me trying Lamictal at my last appointment, she said this might help my dopamine situation.. but from what i tell it is a heck of a lot more likely to make someone feel detached than to make them more emotional again. it seems it would only make me worse if i go by what 99% of everyone says about it on askapatient.com
all i do online is constantly research hoping to come across something that might help, but i running out of ideas. i really do not plan on doing ECT because i believe what it does is make the brain less capable of a higher thought proccess. i feel too horrible to be like this forever.
Posted by bleauberry on July 8, 2012, at 18:22:58
In reply to im running out of ideas, posted by poser938 on July 8, 2012, at 17:47:48
I'm sorry it's been such a long struggle. Lamictal....I usually don't like that one, but in this case I think it is a decent choice. It is sort of outside the box, and when things that would seem to make sense fail then it is time to think outside the box. No one knows all the mechanisms of lamictal or how those influence multiple systems. Some things turn genes on or up, others turn them down or off. Lamictal is a complicated med interacting with several different systems that could spark the dopamine system. My opinion though is if that is to happen, the odds are it will only happen at low doses, such as 25mg to 50mg. Even just 12.5mg can feel dopaminergic stimulation-like. Higher doses I think would probably worsen emotional blunting. But anything is possible.
I know it seems logical to look at the dopamine system since things went wrong with mirapex. I dunno, I think that is probably true but only to a certain degree. Things just aren't that simple in the brain. Everything ties in with everything else, if we impact one thing, others are impacted too.
I've been battling anhedonia/apathy/flatness for years and while it would sure seem like a dopamine thing, the things that help me the most are norepinephrine, not dopamine. Those two are closely related, not as distinctly separate as we sometiimes make it sound like they are. So maybe, since so many dopamine avenues have already proven deadends, how about make the same kind of effort in the norepinephrine department?
Adrafanil with prozac did a decent job on anhedonia for me for a few years. Savella was good, at just tiny doses. Parnate, if you haven't tried that, yeah. Start simple try some tyrosine, try some dl-phenylalanine, then try them together, try l-methione with them. Of all the amino acids, methione is actually the king in terms of depression. Works better with the other two.
Buy a home unit CES Cranial Electrical Stimulation, which is sort of like a low voltage self administered electrical brain stimulation 20 minutes twice a day. It helps to stimulate the brain receptors to fire. Cost is $700 though, but they refund it if it doesn't work.
Anyway, hang in there! Hope you can get a few ideas.
Posted by poser938 on July 8, 2012, at 18:53:49
In reply to Re: im running out of ideas, posted by bleauberry on July 8, 2012, at 18:22:58
well, i have taken other antidepressants in the past and it seemed the worst ones for me were ones that worked on norepinephrine. effexor, wellbutrin and cymbalta were pretty bad.
that home elictrical unit sounds pretty neat, though. i might try that if lamictal does nothing. i am seeing a doctor that actually uses her knowledge, as well as seeks out more knowledge if she is unsure.. so hopefully she can come up with something if this idea with lamictal is no good.
it just seems like an unpleasant medicine for most. i already have a horrible memory, feeling detached, and ongoing hair loss from the effexor i took in 2007. these are the main effects people get from lamictal. i can imagine being worse..
Posted by poser938 on July 8, 2012, at 18:58:45
In reply to Re: im running out of ideas, posted by bleauberry on July 8, 2012, at 18:22:58
i think how cyproheptadine helped me was by its 5ht2c and 5ht2a antagonism. when these receptors are bolcked off it jist sort of takes the brakes off dopamine and norepinephrine. their release is disinhibited.
i would love to find another med that works to disinhibit their release in a different way.
Posted by Emily Elizabeth on July 10, 2012, at 5:55:47
In reply to im running out of ideas, posted by poser938 on July 8, 2012, at 17:47:48
There is a thread below about genetic testing. Might something like that be helpful?
One of the pdocs I consulted with recently does blood tests to determine relative levels of neurotransmitters. I always thought that this couldn't be done, but apparently Mayo Clinic recently developed this technology (I think he said It uses the blood plasma.). He used it to see which one was out of whack. Have you had this done? Frankly, my result was different than I would have guessed based on my med responses, so I don't know what to make of this technology.
Also, some people I know swear by the integrative medicine docs. The look at diet and vitamin deficiencies and stuff and talk about how these contribute to one's mental (and physical) problems. I've never experienced one of these docs first hand (and admittedly I'm skeptical) but you need to think outside the box, so maybe it is worth it.
Best,
EE
Posted by Phillipa on July 11, 2012, at 10:02:45
In reply to Re: im running out of ideas, posted by Emily Elizabeth on July 10, 2012, at 5:55:47
An old high school friend on facebook is married to a pdoc in Florida and he's into the integrative meds. She suggested through him that I might want to explore Duke University. But it's 3 hours away. And wouldn't know who to see. But there must be something to it. Phillipa
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