Posted by Elizabeth on June 8, 2001, at 23:09:20
In reply to Update: very very very very very long » Elizabeth, posted by shelliR on June 8, 2001, at 22:42:05
> I didn't realize that you were doing an ultram trial. Doesn't sound like a good start. What precipiated the change from Buprenorphine?
Side effects, awkward route of administration, difficulty getting a script, difficulty obtaining it even once I've got the script....
The nice thing about these drugs is that a trial lasts at most a few days, not a month or more.
> First of all I talked to Dr. B from McLean.
Isn't he great? Too bad he's not taking new patients.
> Okay: his advice. "Try selegiline" and he gave me the name of the researcher at NIMH who did a large study on it with geriatric patients. I talked to that researcher today (a dr. sunderland) and he told me that there was no difference in side effects, including anxiety, between the placebo group and medicated group.
Excellent. Dose advise?
> Because I told him I had "heard" on the interernet that it can make you shakey. He said that was not his experience in the study, but I think we at PB may be a different breed.
It's possible. I definitely got jitters on it, but it generally seems to be well tolerated.
> ... So that prompted my call to Dr. B at 5:30 pm yesterday. I was so happy he answered and wasn't angry that I called again. He felt it was not the hydrocodone, that it was the ineffectivenss of nardil for me now and made several suggestions.
He's seen Nardil poop-out many times. (Two of them involving me.)
> I also asked him if he felt that buprenorphine would be better for me, and he said as long as I wasn't increasing the hydro, he wouldn't bother.
Buprenorphine is a pain to get and a pain to use, as I mentioned above.
> Then today my usual doctor at the hospital got me in touch with another attending doctor at the hospital on a unit I won't go on (the regular adult unit--too big, too scary, too lonely for me) and he actually suggested that I go on oxycoton (sp?) (I think it was that, not oxycodone) because it would be longer lasting.
OxyContin. Sustained-release oxycodone. Not a bad idea at all. An alternative would be MS Contin (slow-release morphine) or Kadian (an even longer-lasting morphine). These are all long-acting (Kadian is supposed to be once daily). A down side is that the federal government is putting pressure on the maker of OxyContin to cut back the amount they make -- a move which will have a serious impact on people's ability to get it. Someday there's going to be a huge backlash against the War on Drugs -- people will just become too fed up with their rights being taken away one by one.
> I was stunned that a doctor was suggesting this to me. He wants me to go into the hospital and I can go to the unit I feel safe on (dissociative disorders unit) and he will be my doctor.
Dude! That's cool. (Why the dissociative disorders unit?) I think it's great that you're receiving so much acceptance from doctors.
> So I am (I think) going to go into the hospitial Sunday evening and try to work out a drug regiment with the doctor I talked to today. The only problem is that I've talked to him before and he doesn't listen well to me. He's not big on selegiline and suggested that I try sonata also, even though I've already tried a very small dose of ridilin, and all stimulents do not feel right for me.
Sonata? I think you're mixing that up with another musical-sounding drug, Concerta. < g >
What do the stimulants do to you? I had weird and variable blood pressure reactions (including orthostatic hypotension) to most of them, but that was in combination with Parnate. The one time I tried one (Cylert) by itself, it seemed to be somewhat helpful at a very tiny dose.
> So I'm a bit nervous, because I would like to stick to the selegiline plan. (He's a real cocktail guy, and cocktail docs don't like MAOIs because it gives them less choices).
"Cocktail guy." I know the type: they want to pile a bunch of drugs on you rather than use just one that works. (The reverse type is problematic also because they think any regimen, no matter how helpful and necessary each component is, needs to be "simplified.")
> But my therapist is threatening to terminate with me unless I find a pdoc who supports my use of hydro and supervises me, and I wasn't at all feeling optimistic I would be able to do that until I talked to him.
Therapists shouldn't make threats like that. It's downright abusive. IMHO.
> Talked to the people at Johns Hopkins, was not impressed that they had anything differerent to offer me, and since I don't have a pdoc at the moment, they couldn't see me anyway for a consultation.
They can't see you for a consult if you don't have a pdoc? That's a little weird.
> I stayed with my pdoc for ten years because I was doing pretty well most of the time, she was always available for me, and was willing to mix meds that other docs wouldn't at the time, e.g., nardil and serzone together.
Nardil and Serzone -- there's a weird one indeed. What happened?
> We then had a lot "debates" about the hydro and I felt like at the end she just started throwing meds at me--all the atyp antipsy which I hated.
Yeah, those are pretty much only worthwhile for psychosis, *some* cases of bipolar, and occasionally for absolutely intractible insomnia.
> When I wouldn't try zeprexa because of weight gain, she said I didn't really want to get well, and that was the end.
I think you mentioned that. I had a really nice pdoc once who had a good attitude about the weight gain thing (she took it seriously as a side effect).
> And I agree--I don't think this internet thing is going to last. I think it's actually really crazy.
It's out of control, no doubt about that. On the other hand, the can of worms has been opened -- people who've gotten used to being able to be their own doctors won't take kindly to having that taken away. Still, does anyone dare to speak out against the government on the subject of drugs? I mean, even doctors are afraid of them.
> I'm hoping no more than a week, usually when I go in it's for about 5 days, but I'm not sure because of this medication thing.
5 days...standard insurance time. :-}
> I'll have a laptop, but I don't know if there will be a phone to hook it up to. You can bring in your cell phone, but otherwise there are just payphones, unless the staff lets me use one of their lines.
Maybe we can set something up so I can call to check in? I'd like to know you're doing okay. The hospital can be hard even under the best of circumstances.
> Actually, there is jack in the smoking room, but I don't think I could stand to go in there for even five minutes with that air.
There's a smoking room without a window or ventilation???
> I can email you-- if you create and post a temporary e-mail address from yahoo or hotmail then I can send you my real one.
That was my idea also. Try cybersquid_400@yahoo.com. Send me the phone # for the unit you'll be on, if possible (and if you feel comfortable doing so).
> But that would I think be if we wanted to exchange personal info--like exactly where I live in the d.c. area, what my work is, etc., and same for you.
Well, my thoughts are that I'd like to talk to you in more detail, but I don't like revealing personal info on the board here (for obvious reasons).
Whatever you decide, I do hope you'll write. You seem like a good sort.
Best of wishes,
-elizabeth
poster:Elizabeth
thread:64320
URL: http://www.dr-bob.org/babble/20010605/msgs/65862.html