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Update: very very very very very long » Elizabeth

Posted by shelliR on June 8, 2001, at 22:42:05

In reply to Re: Codeine; early report on Ultram trial; stuff » shelliR, posted by Elizabeth on June 8, 2001, at 14:35:56


Hi Elizabeth--

I didn't realize that you were doing an ultram trial. Doesn't sound like a good start. What precipiated the change from Buprenorphine?


Here's my update:
First of all I talked to Dr. B from McLean . It is nice that researchers answer their own phones! Nice for me anyway. Poor guy, this is my fourth phone call to him, but I am very appreciative and offered to send him a fee, (rejected offer!). I was thinking of going into the hospital to get off Nardi and start selegiline, and my potential doctor from the hospital called Dr. B also because he had never used selegiline with anyone.

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. 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.

So back to Dr. B. My therapist was saying that she thought the hydrocodone was making me worse and I said I thought the lack of effectiveness of nardil was the reason for very nearly falling apart off and on for the last year and a half. Then I come home and I have an e-mail from a mostly former babbler who (very respectfully) asked the same question. 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. 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.

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. 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. And I called the head doctor of that unit, who I have known for years and I told her that he might want to prescribe an opiate for me. She didn't blink, and acknowledged that for some people it is effective. I was so overwhelmed with gratitute that two doctors in one hour didn't tell me that I was going to become an addict and that opiates are NOT ANTIDEPRESSANTS that I actually started to cry!

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. 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). 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.

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.

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. 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. 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.

And I agree--I don't think this internet thing is going to last. I think it's actually really crazy.

So I will go into the hospital on Sunday. I've been there five times through the years before, it's a great staff and a small unit, it's not scary to me, but it's not a mood disorder unit. So it's good to have the other doctor involved. 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. 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. 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.

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. 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. For regular med stuff I think it's better to keep it on the board, people don't have to read it, but it might catch the eye of someone who has had similar experiences that we wouldn't otherwise find out about if our posts were off the board.

Shelli


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