Posted by john constantine on February 17, 2004, at 17:02:03
In reply to Re: Reflex Sympathetic Dystrophy » john constantine, posted by CherC68 on February 17, 2004, at 15:52:32
Hello,
Wow... I'm really sorry to hear you've had it so rough.
About six months after a bike accident when I was 16, I began developing a sensation on both sides of the face of an intense "liquid" burning. It can get fierce. Its kind of (but not really -- actually its really really tough to describe..) like the flush you get after a high dose of niacin, only more painful. Or, I might liken it to a combination of a blush and the feeling you get when you eat something real tart and tangy, that kind of facial heat, only much more intense and painful.
My first diagnosis was RSD and for about two or three years that stuck. Then lower-half migraine. Then Atypical trigeminal neuralgia. Then atypical facial pain.
The meds for all these conditions are (supposedly) real similar in their effectiveness. Thats why I mentioned Methadone to you -- it sounds to me like your meds aren't working and not only that, they're making you sick. The anticovulsants like neurontin -- my drs. have said they're supposed to be great for burning pain like RSD and atyp. fac. pain, but they did nothing for me. On eight grams of neurontin per day, I experienced a (blessedly) brief psychotic episode. So many drs. will keep people on crap that doesn't work it is amazing. I have had experiences like this, "Tricyclics have never worked for me. I took xyz grams of pamelor for xyt time and nothing." "Well, lets start you off with a low dose of Pamelor and see what happens..." Like talking to the goddamn wall, these guys. If you got a guy like this, fuck em and find another. When I stayed in relationships like that I always got hurt, nearly killed sometimes.
I've had some horrendous times with this condition over the past 16 years. I've found that these Drs. will throw most any poison whatsoever at you so long as its not a narcotic. Before I got on Methadone, this was my cocktail:
Zyprexa (antipsychotic) -- 25mg.
Sinequan (Tricyclic Antidep) -- 50mg.
Inderal (Beta Blocker) -- 120mg.
Prozac -- 80mg
Baclofen -- 80-120mg.
Trileptal -- 900mg.
Trilafon -- 4-10mg. as needed up to 3 days week
Benadryl -- as needed three days per weekEight drugs! My pharmacist had multiple orgasms when she saw me coming! I was like a walking dead man, a real zombie. No personality, no passion, no sex drive, no creativity -- it cost me my academic career teaching philosophy because on this witches brew I truly seemed like a dumbshit.
It wasn't a whole in the wall doc either. The Michigan Head Pain and Neurological Institute in Ann Arbor put me on this trash and they are somewhat prestigious.
These drugs are insidious. The obvious question is why the hell did you take them for so long? Like alcohol or cocaine or heroin, these meds take away ones capacity for insight into the depth of ones situation. When I woke up and demanded a switch to Methadone, the Dr. (little better than a technician) said I was too young. "Do I really want to commit you to 40 or 50 years of taking a daily opioid?.... blah blah blah The first rule of medicine is 'Do no harm'"
What a sick fuck. What about 50 years on your cocktail, Dr.? I doubt I'd have made it more than two or three more on that stuff. All these guys talk about doing no harm, but doctors just seem blind to the immense amount of harm they do each and every time they write an Rx. (I know the drugs are often necessary and the pros might sometimes outweight the cons)
They're so blind because they never really SEE the harm their doing. This guy didn't have to live with me or take my class or do my research under the influence of a cocktail on which I tested a substantial 38 IQ points lower than on a drug free test taken several years prior.
I'm getting my life back together now, although I'll never have the means to get back into my career of choice. Methadone is working for me. Like any of these drugs, it does slow me down somewhat. But -- nowhere nearly as bad as most every other drug used for this condition. Plus, I take dextrostat with a supplement cocktail to compensate for this and it helps alot.
The worst thing for me is that this pain is triggered by certain odors. Citrus, cleaning fluid, ammonia, perfume and cologne. It's truly horrible being a normal heterosexual male, approaching a beautiful woman, and then finding yourself unable to endure more than a few minutes of contact with her (otherwise attractive) perfume scent. I've tried vocks and peppermint oil, etc. but can't figure out a wqay to block my olfactory system.
I feel like the guy in Clockwork Orange. He loved music and they conditioned him to feel pain when he heard it by associating with pain.
Where in the country are you located? If you're midwest I can point out a few places where I've been helped at times.
poster:john constantine
thread:303801
URL: http://www.dr-bob.org/babble/health/20040102/msgs/314809.html