![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 41 to 65 of 72. Go back in thread:
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
Posted by shelliR on June 9, 2001, at 0:47:29
In reply to Re: Update: very very very very very long » shelliR, posted by Elizabeth on June 8, 2001, at 23:09:20
> > First of all I talked to Dr. B from McLean.
> > Okay: his advice. "Try selegiline"> Excellent. Dose advise?
forgot to ask, but the last time he said to go up very very high. I'll have to ask the doctor from the hospital who talked to him.
>
>
> 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.Kids are getting oxycontin on the streets and crushing them, thus getting the effect of several doses worth at one time. It's very popular in high schools now, and there's been some deaths.
>
> > 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.
I'm due. I've gone through the whole last year with absolutely no acceptance. And I have a dissociative disorder, DDNOS, so that's why the dissociative disorders unit. Actually I think it's called The center for Abuse and Recovery now, and not everyone is diagnosed as dissociative, although most are. It's a very structured program, probably a lot like the one at McLean--maybe not as good, although it used to be.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 >
< gg >, you're totally right!
> 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.They make my body pulsate and shakey and I sort of feel like it's too hard to stay in my body., but nowhere else to go.
>
> > 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.")Right on target with the cocktail guy. He gives you a pie chart diagram-- serotonin, norepinephrine and dopamine- He's really into it. He wrote an article in for the health section of the Washington Post called the three tenors: http://groups.yahoo.com/group/a_new_voice/message/722
>
> > 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.Yes, we have a lot of disagreements, a few very bitter, but the truth is she is the therapist who has helped me the most so far. She has seen me lose so much ground in the last year and she is convinced it is the hydro, as was my pdoc. From her point of view, "she is worried", and thus the threat. But I agree, it’s not right. But I also know she is not trying to be abusive; she is doing what she thinks is right.
> 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.Well, they get mostly people I assume whose doctors send them for evaluations and then get back to them to change med protocols. With me there would be no one to talk to (except me, of course). They don’t do any treatment.
>
Nardil and Serzone -- there's a weird one indeed. What happened?My blood pressure fell to low. It was sort of fun. I was very floatly and felt very light, but not grounded enough.
>
>
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 don’t understand why they’re not monitored for prescribing narcotics like all other doctors. They send you the medication., rather than the prescription. I wonder if there is no paper trail.
>
> > 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.
>
ÿ 5 days...standard insurance time. :-}Actually, ten days is about standard there, but I get worried about my business so try to leave fast. The problem is that even if you go in voluntarily, they decide when to let you out. Also last time it was not a good experience for me. I felt overstimulated and thought it was best to leave. I came in as the fifth patient and in three days it went up to 12 (full census). So it was very chaotic, although the patients were a good, sane group.
> 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.
I don’t like to get a lot of calls when I’m there because the phones are in a group room and it's very unprivate. I have a cell phone but I only call out from it, don't leave it turned on. I’m really fine when I’m there. Last time a couple of friends came, but usually I don't even want visitors. I bring my own sheets and blanket and my own food! I’ll try to e-mail you if possible.
>
>
>There's a smoking room without a window or ventilation???
There is ventilation, but when ten people are smoking is a tiny room, it’s not much help. And I am super sensitive to smoke; I hate it.>
> ...... You seem like a good sort.
That sounds very English to me!Shelli
>
Posted by Elizabeth on June 9, 2001, at 22:25:02
In reply to Re: Update: very very very very very long » Elizabeth, posted by shelliR on June 9, 2001, at 0:47:29
> Kids are getting oxycontin on the streets and crushing them, thus getting the effect of several doses worth at one time. It's very popular in high schools now, and there's been some deaths.
You can't inject sustained-release drugs safely, but OxyContin came in up to 160 mg strengths (until the govt put pressure on the drug company to pull them from the market). This is like 32 Percocets -- enough to kill a person with no tolerance, easily.
> I'm due. I've gone through the whole last year with absolutely no acceptance. And I have a dissociative disorder, DDNOS, so that's why the dissociative disorders unit.
What sort of DDNOS? "NOS" disorders could be a lot of different things. Sometimes they're unofficially recognised disorders, sometimes they're subclinical variations on clinically recognised disorders.
> Actually I think it's called The center for Abuse and Recovery now, and not everyone is diagnosed as dissociative, although most are.
PTSD, BPD, and dissociative disorders tend to get grouped together. Women's programs tend to focus on these issues (which is why I avoid them). McLean has both a Women's Partial Program (South Belknap, the house featured in _Girl, Interrupted_) and a Dissociative Disorders/Trauma inpatient program (Proctor 2). (I was in the Mood and Anxiety Disorders Program.)
> They make my body pulsate and shakey and I sort of feel like it's too hard to stay in my body., but nowhere else to go.
Huh. I had panic-like reactions on some of them, also blood pressure problems. But if I tried them now, without the Parnate, they might work.
> Right on target with the cocktail guy. He gives you a pie chart diagram-- serotonin, norepinephrine and dopamine- He's really into it. He wrote an article in for the health section of the Washington Post called the three tenors: http://groups.yahoo.com/group/a_new_voice/message/722
Ugh! That's so oversimplified. It also leaves out other systems, like the cholinergic and endogenous opioid systems.
> > Therapists shouldn't make threats like that. It's downright abusive. IMHO.
>
> Yes, we have a lot of disagreements, a few very bitter, but the truth is she is the therapist who has helped me the most so far. She has seen me lose so much ground in the last year and she is convinced it is the hydro, as was my pdoc.I dunno...sometimes, nonmedical therapists like to blame the meds (or the client!) for their ineffectiveness.
> From her point of view, "she is worried", and thus the threat. But I agree, it’s not right. But I also know she is not trying to be abusive; she is doing what she thinks is right.
Is there a way you could tell her that you think it's wrong to make threats to clients like that, without upsetting her? She's probably hurt other people that way too.
> Well, they get mostly people I assume whose doctors send them for evaluations and then get back to them to change med protocols.
Yeah, that's how I encountered Dr. Bodkin -- my pdoc knew him from residency.
> With me there would be no one to talk to (except me, of course). They don’t do any treatment.
The purpose would be to make a treatment plan (preferably in writing).
> My blood pressure fell to low. It was sort of fun. I was very floatly and felt very light, but not grounded enough.
That's what happened to me on Parnate + some of the stimulants, only I didn't feel good. I felt dizzy and my vision would go black when I stood up.
> I don’t understand why they’re not monitored for prescribing narcotics like all other doctors. They send you the medication., rather than the prescription. I wonder if there is no paper trail.
I don't know the details of online pharmacy/consultant businesses. I gather they tend to go out of business pretty fast if they prescribe controlled substances with a minimal (or no) consult, though.
> Actually, ten days is about standard there, but I get worried about my business so try to leave fast.
It's not the hospital that determines the standard amount of time; it's the insurance. My insurance approves 5 days at a time, then decides whether to approve more.
> The problem is that even if you go in voluntarily, they decide when to let you out.
Yes! That's called "conditional voluntary" admission in Massachusetts. It's not really voluntary at all -- if you try to leave, they can threaten to have you committed. I've never been in that situation, but my guess is that judges are more likely to side with the doctor than with the patient.
> Also last time it was not a good experience for me.
You're not alone. A lot of people have bad hospital experiences, especially those who like to have a say in their own treatment (hospital staff who don't know you seem to assume that you're just another ignorant patient).
I understand about not wanting phone calls in the hospital. But I would like to hear from you over email. It'd be nice to chat a little bit, at least now and after you get out.
> > ...... You seem like a good sort.
>
> That sounds very English to me!In fact, I picked it up ("a good sort") from an English ex-boyfriend. :-)
-elizabeth
Posted by Lorraine on June 9, 2001, at 23:09:37
In reply to Re: Update: very very very very very long » shelliR, posted by Elizabeth on June 9, 2001, at 22:25:02
Shelli, Elizabeth:
Elizabeth: I just wanted to say how much I enjoy your posts. Sooo thought out and intelligent, yet compassionate. Really great to see your posts.Shelli: Just my 2 cents, Selegiline makes me a bit edgy and I think heightens my anxiety. (My dose of Selegiline is 10mg/ day. I've decreased it to 5mg/day when I get too aggitated. I'm very sensitive to meds generally.) I am very reluctant to give it up though because I find it's cognitive effects (really helps me think and focus) unparalleled. It has not had an antidepressant effect, the Neurontin has provided that. I also take it with Adderral. I am not home free on this combo. I adjust doses every other day or so trying to get it right. And then the anxiety piece remains to be solved. As I mentioned in another post to you, I am trying Neurofeedback. We will see if it is worthwhile or hogwash. I did run into another patient leaving with me the other day and he said "isn't is great! I came in with depression and panic attacks and I haven't felt this good in 24 years." Well, needless to say, that gave me hope. But, who knows with this sort of stuff. Anyway, I feel like so much of this med thing is roll of the dice. 96 combos to try that might work, what are the odds that we choose the right one, at the right dose, and give it enough time? Especially if you are treatment resistant--are actually, in my case, just get so many side effects and have fairly high standards on what side effects are acceptable. Weight and sexual dysfunction don't work for me as side effects, I'm sorry. It's a pretty big chunk of life to be asked to give up, and I believe that it is pretty easy for doctors who are not depressed to press for results that diminish the quality of life substantially. (It actually makes me hopping mad.)
Posted by Elizabeth on June 10, 2001, at 9:39:42
In reply to Re: Update: very very very very very long, posted by Lorraine on June 9, 2001, at 23:09:37
> Elizabeth: I just wanted to say how much I enjoy your posts. Sooo thought out and intelligent, yet compassionate. Really great to see your posts.
Thank you. I appreciate being appreciated. :-)
> Shelli: Just my 2 cents, Selegiline makes me a bit edgy and I think heightens my anxiety.
Yeah, that was what it did to me too (but I was taking 40 mg/day). A lot of people find it helpful for cognitive problems, as you describe.
You might look at some of the older drugs if the newer ones tend to cause weight gain and sex problems. Sexual dysfunction seems to be an almost-universal side effect of the SSRIs, in particular.
-elizabeth
Posted by Lorraine on June 10, 2001, at 10:55:51
In reply to stuff » Lorraine , posted by Elizabeth on June 10, 2001, at 9:39:42
> You might look at some of the older drugs if the newer ones tend to cause weight gain and sex problems. Sexual dysfunction seems to be an almost-universal side effect of the SSRIs, in particular.
Yeah, I have given up on the SSRIs, only had a partial response and a lot of side effects. Me and my pdoc are trying stimulants and mood stabilizers. Of the mood stabilizers, neurontin seems to be the one that works best for me. Dexidrine made me too edgy and now Adderral is being tried. I am still on the Selegiline--I just lower the dose and add an amphetamine. The Adderral makes me active, but funny thing, does not tend to make me productive. After this, I think there is still Provigil (sp?) and Celerta (sp?) and possibly Desoxyn (sp?) to try in the stimulant class. And I may go back and try Moclobemide again adding Neurontin to it this time. Next stop, I figure is Desipramine (sp) and Parnate. Are these last two the "older" drugs you have in mind? From what I have read, these two seem to have the lowest side effect profile.
Thanx
>
> -elizabeth
Posted by Elizabeth on June 10, 2001, at 20:41:30
In reply to Re: stuff, posted by Lorraine on June 10, 2001, at 10:55:51
> Yeah, I have given up on the SSRIs, only had a partial response and a lot of side effects.
Hmm, is that better or worse than no response and no side effects? :-)
> After this, I think there is still Provigil
(modafinil)
> Celerta (sp?)
Concerta? (a new sustained-release formulation of methylphenidate)
> and possibly Desoxyn (sp?)
methamphetamine
(good luck)> And I may go back and try Moclobemide again adding Neurontin to it this time.
Moclobemide? Jeez. I assume you're not in the USA. If you are, it's a waste of your energy (IMHO).
> Next stop, I figure is Desipramine (sp) and Parnate. Are these last two the "older" drugs you have in mind? From what I have read, these two seem to have the lowest side effect profile.
Desipramine is a tricyclic. Parnate (tranylcypromine) is a monoamine oxidase inhibitor. They're both old. They're among the more side-effect-free drugs in their respective classes.
-elizabeth
Posted by Maraschino on June 11, 2001, at 19:17:30
In reply to Re: Codeine for Depression Treatment-Elizabeth, posted by AMenz on June 5, 2001, at 11:19:40
> Codeine is supposed to be addictive. I'm already unable to get off a 1mg benzo daily.
>
> When you say an opioid is it a synthetic or a natural derivative of opium. Better yet since I do not have a science background-what is an opioid agonist, as opposed to an opiate?
>
> What is the action of codeine that it relieves depression and is the effect palliative like, eg. like benzos which wear off quickly and have to be readministered as oppossed to SSRI which and lithium which build up in the bloodstream slowly and take several days to wear off.
>
> I'm almost embarassed to write to you because you seem extremely knowledgeable. What is your background, if I may ask?
>
> > At what dosage and, since you say it's a temporary, for how many days is it safe to take this.
> >
> > How safe do you want?
> >
> > There seems to be a wide range of variability in the rates at which different people develop tolerance.
> >
> > BTW: there is no evidence or reason to suppose that opioid agonists are "cover-ups" that don't address the "root cause" of depression. (This is an argument commonly made by proponents of "talk" therapies in criticising the use of any drug at all, incidentally.)
> >
> > -elizabethIf this the same Elizabeth (Shapere) who posted on Usenet for many years, she is indeed an expert on psychopharmacology and the like. For even more of her, you can check out http://groups.google.com for Elizabeth Shapere.
Hope this helps..
Maraschino
Posted by Lorraine on June 11, 2001, at 21:32:01
In reply to Re: stuff » Lorraine , posted by Elizabeth on June 10, 2001, at 20:41:30
> > Yeah, I have given up on the SSRIs, only had a partial response and a lot of side effects.
>
> Hmm, is that better or worse than no response and no side effects? :-)I believe it's worse because you stay on the horse too long following a blind alley.
> > Celerta (sp?)
>
> Concerta? (a new sustained-release formulation of methylphenidate)No, it's Cylert (pemoline). Say have you heard anything about a time release Adderral?
>
> > and possibly Desoxyn (sp?)
>
> methamphetamine
> (good luck)Actually, it's my pdoc that suggested it. So I can get the prescription. The question is whether I want to try it or not. In my past (long ago far away--like 30 years ago), I abused drugs. But I was never addicted and I don't think I have an addictive personality generally. The question is whether it would be a good drug to try. I think I've read about energy depletion or something like that with it.
>
> > And I may go back and try Moclobemide again adding Neurontin to it this time.
>
> Moclobemide? Jeez. I assume you're not in the USA. If you are, it's a waste of your energy (IMHO).I am in the USA. My pdoc writes a prescription that is then filled by a Canadian pharmacy and mailed to me. I did this before and it's not too bad. It's not covered by insurance, but Moclobemide is cheap so who cares?
Right now all of these pharmaceutical experiments are on hold while I try Neurofeedback to see if I can stabilize some subthrehold seizure-like activity that is probably causing my physical anxiety. It would be great to have a non-drug solution to at least part of the problem. The depression might remain though. I am using EEGSpectrum for this. Susan Othmer has treated 3000 patients with various ailments and I'm sure various results. Her own son had epilepsy so she was very motivated to employ Neurofeedback with him. I don't have epilepsy, but I suspect the approach is the same--train the person to narrow the volitility and variation range of alpha, beta and theta brain waves. My pdoc is a neurologist. His reading of my QEEG confirms the reading at EEGSpectrum--namely that I have a lot of spiking activity, one or two out of range spikes every 14 seconds. Those spikes destabilize me, impacting my memory, my autonomic functions (physical anxiety)and generally wreak havoc in the brain. EEGSpectrum believes that this is why I am treatment resistent. Of course, my pdoc is trying, without success so far, to treat the problem with anti-convulsants. We really do not know a lot about the brain right now. Anyway, I'm hopeful about the feedback treatment, but also know that it is experimental and may turn out to be another blind alley for me. Of course, I expect the placebo effect to at least perk things up for a little while. I'll keep you posted on progress.
Posted by Elizabeth on June 12, 2001, at 1:31:37
In reply to Re: Codeine for Depression Treatment-Elizabeth » AMenz, posted by Maraschino on June 11, 2001, at 19:17:30
> If this the same Elizabeth (Shapere) who posted on Usenet for many years, she is indeed an expert on psychopharmacology and the like. For even more of her, you can check out http://groups.google.com for Elizabeth Shapere.
"Maraschino," huh? Well, thanks for the vote of confidence. :-) It's nice to be appreciated, although I would hardly call myself an expert. (How about "informed consumer?")
But I don't use my full name on Usenet. Much of what has been posted on Usenet about me (*especially* those posts that include my full name) is rather...libelous. A deranged individual ("flight of the phoenix," "alexplore," and many others) who gives mental illness a bad name has taken a dislike to me and some random people who I don't even know (and an ex-boyfriend...sad story). He believes I'm conspiring with these people. (It's not clear what I'm conspiring to do with these people I don't know and the ex who I don't even talk to.)
I haven't posted much to Usenet recently. "Alexplore" has succeeded in scaring me away, I guess. Anyway, I don't have time to sift through all the flames these days.
Thanks for this virtual place, Dr. Bob.
-elizabeth
P.S. Hey, Maraschino, should I be suspicious that you spelled my name right? And can I ask about the derivation of your alias?
Posted by Elizabeth on June 12, 2001, at 2:09:35
In reply to Re: stuff » Elizabeth, posted by Lorraine on June 11, 2001, at 21:32:01
> > > Yeah, I have given up on the SSRIs, only had a partial response and a lot of side effects.
> >
> > Hmm, is that better or worse than no response and no side effects? :-)
>
> I believe it's worse because you stay on the horse too long following a blind alley.Hmm. How about a partial response and no side effects (except very minor ones)? (Parnate)
> No, it's Cylert (pemoline).
Cylert! I took a small dose for a while in college, and it was surprisingly helpful. I feel like I should revisit it. It's very long-acting, and smoother than other psychostimulants. Its pharmacologic mechanism of action is unclear. It actually helped me get (and keep) my sleep-wake cycle back in sync with the rest of the world, because I would take it every morning and feel more alert, and then start to get tired in the evening as it wore off.
> Say have you heard anything about a time release Adderral?
Controlled release Adderall? That would be quite a task, and probably not worth the money and effort.
> > methamphetamine
> > (good luck)
>
> Actually, it's my pdoc that suggested it. So I can get the prescription.That's impressive. Pdocs hate to write for that one. I would expect it to be safer and more tolerable than dextroamphetamine, because it has a more favourable ratio of central to peripheral effects.
> The question is whether I want to try it or not. In my past (long ago far away--like 30 years ago), I abused drugs. But I was never addicted and I don't think I have an addictive personality generally.
Hmm. How do you define "abused?" (Believe it or not, the American Psychiatric Association has attempted to come up with a rigorous definition, although most psychiatrists seem to ignore that definition when they label patients "substance abusers.")
> The question is whether it would be a good drug to try. I think I've read about energy depletion or something like that with it.
Well, I don't know if the sustained-release formulation ("Gradumets") is still made. You might get a lot of highs and lows in energy as one dose wears off and then another starts to work. It's a pretty short-acting drug (I'm not a big fan of those; I want to be able to go about my business and not have to worry about my medication wearing off every few hours).
> > Moclobemide? Jeez. I assume you're not in the USA. If you are, it's a waste of your energy (IMHO).
>
> I am in the USA. My pdoc writes a prescription that is then filled by a Canadian pharmacy and mailed to me.Huh. My impression was that the by-the-book way to do this involved a lot of red tape and hassle, so I never considered it an option (especially since I didn't even respond completely to the irreversible nonselective MAOIs). If it's just a matter of finding an amenable Canadian pharmacist, though, it might well be worth it. How much does it cost? (I'm pretty sure my insurance won't cover prescriptions that are filled outside the USA, especially for drugs that aren't even approved here.)
> Right now all of these pharmaceutical experiments are on hold while I try Neurofeedback to see if I can stabilize some subthrehold seizure-like activity that is probably causing my physical anxiety.
That's interesting. I have had several EEGs that showed no or little sign of anything being wrong in that department, but I had a SPECT scan which suggested...umm, it's not clear what it suggested, but it was definitely weird.
I hope your experiment does some good. I would like to hear about it. (As with all things, I'm curious how (or if) it works.)
> I don't have epilepsy, but I suspect the approach is the same--train the person to narrow the volitility and variation range of alpha, beta and theta brain waves.
Those refer to different combinations of amplitude and frequency: for example, theta rhythm refers to low-amplitude (voltage) and moderately high-frequency (fast) waves.
> My pdoc is a neurologist. His reading of my QEEG confirms the reading at EEGSpectrum--namely that I have a lot of spiking activity, one or two out of range spikes every 14 seconds. Those spikes destabilize me, impacting my memory, my autonomic functions (physical anxiety)and generally wreak havoc in the brain. EEGSpectrum believes that this is why I am treatment resistent.
Yeah, I got the same line about my SPECT. < g > I did get my medical records -- finally -- and plan to call up a neurologist I know to see if he can determine the clinical relevance, if any, of the abnormal SPECT scan.
> Of course, my pdoc is trying, without success so far, to treat the problem with anti-convulsants.
Isn't a lot of that due to intolerance of side effects? Which ones have you tried so far?
> We really do not know a lot about the brain right now.
Yeah. I'd sure like to know a few things about mine, in particular. < g >
Again, good luck with the neurofeedback.
-elizabeth
Posted by Maraschino on June 14, 2001, at 14:26:08
In reply to Elizabeth speaks » Maraschino, posted by Elizabeth on June 12, 2001, at 1:31:37
> > If this the same Elizabeth (Shapere) who posted on Usenet for many years, she is indeed an expert on psychopharmacology and the like. For even more of her, you can check out http://groups.google.com for Elizabeth Shapere.
>
> "Maraschino," huh? Well, thanks for the vote of confidence. :-) It's nice to be appreciated, although I would hardly call myself an expert. (How about "informed consumer?")Infromed consumer sounds good, and you really do seem very informed.
>
> But I don't use my full name on Usenet. Much of what has been posted on Usenet about me (*especially* those posts that include my full name) is rather...libelous. A deranged individual ("flight of the phoenix," "alexplore," and many others) who gives mental illness a bad name has taken a dislike to me and some random people who I don't even know (and an ex-boyfriend...sad story). He believes I'm conspiring with these people. (It's not clear what I'm conspiring to do with these people I don't know and the ex who I don't even talk to.)I wasn't aware of that, but after looking at it it a shame. Didn't you use to post theough, from aol - using Shapere? Sorry, if I'm mistaken.
>
> I haven't posted much to Usenet recently. "Alexplore" has succeeded in scaring me away, I guess. Anyway, I don't have time to sift through all the flames these days.
>
> Thanks for this virtual place, Dr. Bob.I thank him too, because there is much better info ans support here than in uUsenet groups.
>
> -elizabeth
>
> P.S. Hey, Maraschino, should I be suspicious that you spelled my name right? And can I ask about the derivation of your alias?Maraschino is just a nick.. that's all.
And thanks for your greatinfo here and on Usenet too. You give lots of different kinds of advice on depression.Maraschino
p.s sorry for the delay.. I'm not on the computer that much/
Posted by Elizabeth on June 14, 2001, at 15:19:44
In reply to Re: Elizabeth speaks, posted by Maraschino on June 14, 2001, at 14:26:08
> Infromed consumer sounds good, and you really do seem very informed.
Thank you. I try.
> I wasn't aware of that, but after looking at it it a shame. Didn't you use to post theough, from aol - using Shapere? Sorry, if I'm mistaken.
Yeah, much to my embarrassment, I did once have an AOL account. < g >
> > Thanks for this virtual place, Dr. Bob.
>
> I thank him too, because there is much better info ans support here than in uUsenet groups.There is. Thanks to people like "alexplore," a lot of the knowledgeable and supportive posters have abandoned Usenet. Moderated forums, such as this one, have proven more resilient than those that allow anyone to post anything.
> And thanks for your greatinfo here and on Usenet too. You give lots of different kinds of advice on depression.
Well, you're quite welcome. And thank *you* for taking the time to thank me. :-)
-elizabeth
Posted by Shar on June 14, 2001, at 20:05:01
In reply to Re: Elizabeth speaks, posted by Maraschino on June 14, 2001, at 14:26:08
When I post on PB or PSB or PBA, I have an expectation of anonymity to the extent that I am the one who decides what, if any, personal information to disclose.
I am pretty uncomfortable with the idea of any poster coming online and posting personal info about someone else, especially like their last name. I would not like it done to me, for sure!
This is, after all, PSYCHO-babble.....8-)
Anyhow, I wanted to voice my opinion that it seems like an invasion of privacy to reveal something the person hasn't chosen to share.
Shar
> > > If this the same Elizabeth (Shapere) who posted on Usenet for many years, she is indeed an expert on psychopharmacology and the like. For even more of her, you can check out http://groups.google.com for Elizabeth Shapere.
> >
> > "Maraschino," huh? Well, thanks for the vote of confidence. :-) It's nice to be appreciated, although I would hardly call myself an expert. (How about "informed consumer?")
>
> Infromed consumer sounds good, and you really do seem very informed.
> >
> > But I don't use my full name on Usenet. Much of what has been posted on Usenet about me (*especially* those posts that include my full name) is rather...libelous. A deranged individual ("flight of the phoenix," "alexplore," and many others) who gives mental illness a bad name has taken a dislike to me and some random people who I don't even know (and an ex-boyfriend...sad story). He believes I'm conspiring with these people. (It's not clear what I'm conspiring to do with these people I don't know and the ex who I don't even talk to.)
>
> I wasn't aware of that, but after looking at it it a shame. Didn't you use to post theough, from aol - using Shapere? Sorry, if I'm mistaken.
> >
> > I haven't posted much to Usenet recently. "Alexplore" has succeeded in scaring me away, I guess. Anyway, I don't have time to sift through all the flames these days.
> >
> > Thanks for this virtual place, Dr. Bob.
>
> I thank him too, because there is much better info ans support here than in uUsenet groups.
> >
> > -elizabeth
> >
> > P.S. Hey, Maraschino, should I be suspicious that you spelled my name right? And can I ask about the derivation of your alias?
>
> Maraschino is just a nick.. that's all.
> And thanks for your greatinfo here and on Usenet too. You give lots of different kinds of advice on depression.
>
> Maraschino
> p.s sorry for the delay.. I'm not on the computer that much/
Posted by Elizabeth on June 14, 2001, at 22:52:17
In reply to Elizabeth speaks---Anonymity?, posted by Shar on June 14, 2001, at 20:05:01
> I am pretty uncomfortable with the idea of any poster coming online and posting personal info about someone else, especially like their last name. I would not like it done to me, for sure!
I feel uncomfortable about it too. But I've already made the mistake of posting on Usenet under my real name; I don't have any expectation of anonymity here. (Even if I started posting under a new name, I'd have to avoid revealing *any* personal information, even the medications I take or have taken; and even then, I think a lot of people would be able to guess that it was me posting.)
Also, although it was something of a faux pas, Maraschino made the post in a friendly spirit. While it's not only the thought that counts, benevolent intentions do go a long way toward eliciting forgiveness.
-elizabeth
Posted by Neal on June 15, 2001, at 13:53:49
In reply to Elizabeth speaks---Anonymity?, posted by Shar on June 14, 2001, at 20:05:01
Shar,
You haven't posted on this board too often these days. I was following your med progress because we seem to have similar dx and meds, ie., Wellbutrin + augmentors. Last I heard you had success with Risperdal. Care to share your cocktail these days? Thanks --Neal
Posted by gilbert on June 15, 2001, at 16:16:18
In reply to To Shar, posted by Neal on June 15, 2001, at 13:53:49
Elizabeth,
You are a good soul. You contibute and you ar so even tempered as well as informed. The way you just handled the above postings....style and grace....
Thanks,
Gil
Posted by Elizabeth on June 15, 2001, at 17:12:11
In reply to Elizabeth,,,,, posted by gilbert on June 15, 2001, at 16:16:18
> You are a good soul. You contibute and you ar so even tempered as well as informed. The way you just handled the above postings....style and grace....
*blush*
Thank you.
-elizabeth
Posted by Shar on June 15, 2001, at 23:24:28
In reply to To Shar, posted by Neal on June 15, 2001, at 13:53:49
I am on the same drugs, but they may have been modified since I last posted.
Wellbutrin SR 400 mg.
Effexor XR 300 mg.
Risperdal .5 mg
Klonopin 1 mg. in pm
Hydroxyzine Pamoate 25 mg. for occasional anxietyThe way I take them has been modified to:
Wellbutrin SR 300 mg in morning
Effexor XR 150 mg in morning
Wellbutrin SR 100 mg in afternoon
Effexor XR 150 mg. in evening
Risperdal .5 in evening
Klonopin 1 mg in eveningWhat is your cocktail, Neal? Mine is working ok, I do feel better than I have in many months which is a great relief.
Shar
> Shar,
> You haven't posted on this board too often these days. I was following your med progress because we seem to have similar dx and meds, ie., Wellbutrin + augmentors. Last I heard you had success with Risperdal. Care to share your cocktail these days? Thanks --Neal
Posted by Lorraine on June 16, 2001, at 11:36:01
In reply to Re: subthreshold epilepsy and stuff » Lorraine , posted by Elizabeth on June 12, 2001, at 2:09:35
> > > > Yeah, I have given up on the SSRIs, only had a partial response and a lot of side effects.
> > >
> > > Hmm, is that better or worse than no response and no side effects? :-)
> >
> > I believe it's worse because you stay on the horse too long following a blind alley.
>
> Hmm. How about a partial response and no side effects (except very minor ones)? (Parnate)Partial response is a problem for me.
> > No, it's Cylert (pemoline).
>
> Cylert! I took a small dose for a while in college, and it was surprisingly helpful. I feel like I should revisit it. It's very long-acting, and smoother than other psychostimulants. Its pharmacologic mechanism of action is unclear. It actually helped me get (and keep) my sleep-wake cycle back in sync with the rest of the world, because I would take it every morning and feel more alert, and then start to get tired in the evening as it wore off.
OK, then it definately goes on the "to try" list.> > > methamphetamine
> > > (good luck)
> > The question is whether I want to try it or not. In my past (long ago far away--like 30 years ago), I abused drugs. But I was never addicted and I don't think I have an addictive personality generally.
>
> Hmm. How do you define "abused?" (Believe it or not, the American Psychiatric Association has attempted to come up with a rigorous definition, although most psychiatrists seem to ignore that definition when they label patients "substance abusers.")Actually, I just messed around and took a lot of drugs for a couple of years in my teens. Shot speed for a month or two. The drugs I took depended on who I was around at the time and what was available.
>
> > The question is whether it would be a good drug to try. I think I've read about energy depletion or something like that with it.
>
> Well, I don't know if the sustained-release formulation ("Gradumets") is still made. You might get a lot of highs and lows in energy as one dose wears off and then another starts to work. It's a pretty short-acting drug (I'm not a big fan of those; I want to be able to go about my business and not have to worry about my medication wearing off every few hours).
> > > Moclobemide
> Huh. My impression was that the by-the-book way to do this involved a lot of red tape and hassle, so I never considered it an option (especially since I didn't even respond completely to the irreversible nonselective MAOIs). If it's just a matter of finding an amenable Canadian pharmacist, though, it might well be worth it. How much does it cost? (I'm pretty sure my insurance won't cover prescriptions that are filled outside the USA, especially for drugs that aren't even approved here.)It was very easy to do and I have the name of the pharmacy if you need it. They just put a copy of the prescription in the package that they mail to you. It can get stopped at customs if the pharmacy forgets to put a copy of the prescription in the package. When this happens, the package is returned to the pharmacy and they put the prescription in the package and remail. No a big deal, but can cause a time delay. The cost was about $1/pill. I was taking one pill a day. So it really wasn't bad. Even on the doctor's end, it's easy. They just make out the script and the client faxes it to the pharmacy. I suppose the doctor call the pharmacy and establishes his credentials before using the pharmacy for the first time.
> > Right now all of these pharmaceutical experiments are on hold while I try Neurofeedback to see if I can stabilize some subthrehold seizure-like activity that is probably causing my physical anxiety.
>
> That's interesting. I have had several EEGs that showed no or little sign of anything being wrong in that department, but I had a SPECT scan which suggested...umm, it's not clear what it suggested, but it was definitely weird.Who did you SPECT? Do you still have the "pictures"? Have you seen the images at thebrainplace.com? Or in Amen's books? Seems like you could match them up. He is pretty clear about what brain activity means what diagnosis. Amen is going to do a study with EEGSpecturm (the neurofeedback place I go to). He is going to do the SPECT before and after treatment. Sounds cool.
> I hope your experiment does some good. I would like to hear about it. (As with all things, I'm curious how (or if) it works.)
I've been to 5 sessions so far. After a couple of sessions I fell into what felt like an unmedicated depression (pretty low). I'd discontinued my lightbox about a week earlier and replugged it in that day to see if it might lift my spirits. (I really don't know if the lightbox worked. I'd decided it didn't when I left it unplugged.) At my session that day, they adjusted the dials on the brain machine (actually increased the voltage on the band of beta I was working on) and I left the session feeling really good. It lasted all that day and the next day. I was pretty excited. Then yesterday was a bit flat. (but then I was feeling over-stimulated and cut my med dose back slightly.) So, it's too early to make any judgments. Maybe the moods were affected by the feedback or maybe it was the lightbox or maybe just my mood modulations. They were not suprised that I was experiencing all of this upheaval and would make adjustments session-to-session depending on how I was feeling.
> > I don't have epilepsy, but I suspect the approach is the same--train the person to narrow the volitility and variation range of alpha, beta and theta brain waves.
>
> Those refer to different combinations of amplitude and frequency: for example, theta rhythm refers to low-amplitude (voltage) and moderately high-frequency (fast) waves.Yeah, I know, but I can't keep the terms in my head. It's like I'm allergic to these high tech words.
> > My pdoc is a neurologist. His reading of my QEEG confirms the reading at EEGSpectrum--namely that I have a lot of spiking activity, one or two out of range spikes every 14 seconds. Those spikes destabilize me, impacting my memory, my autonomic functions (physical anxiety)and generally wreak havoc in the brain. EEGSpectrum believes that this is why I am treatment resistent.
> Yeah, I got the same line about my SPECT. < g > I did get my medical records -- finally -- and plan to call up a neurologist I know to see if he can determine the clinical relevance, if any, of the abnormal SPECT scan.It's really hard to separate fact from fiction in this stuff. It's all so experimental. (although lately, I've been feeling like drug therapy is experimental. You roll the dice and hope it comes up with your number.)
>
> > Of course, my pdoc is trying, without success so far, to treat the problem with anti-convulsants.
>
> Isn't a lot of that due to intolerance of side effects? Which ones have you tried so far?Depekote--really slammed me down sedation wise. Lomictal just made me feel wierd and uncomfortable. Now it's Neurontin. There are others to try, but I don't want a lot of cognitive side effect (because my cognitive abilities are weak due to the depression anyway).
> Again, good luck with the neurofeedback.Thanx.
Lorraine
Posted by Neal on June 16, 2001, at 13:06:56
In reply to Neal - My cocktail update, posted by Shar on June 15, 2001, at 23:24:28
Shar - Nice to hear from you. Mine goes like this:
Wellbutrin - 400mg (200 2x/day)
Remeron - 30mg night, 15mg afternoon
Neurontin - 3600mg (divided throughout day).
Klonopin - 1mg night, .5mg afternoonIt works ok. I was taking 2mg Klonopin, I liked it, but it caused libido problems, as it sometimes does in men, so am tapering down.
The Neurontin works on GABA, as does Klonopin, so it helps with anxiety/social anxiety, and is reputed to have no addictive qualities.
Shar - what is Hydroxyzine Pamoate? Haven't heard of that one before.
Posted by Zo on June 16, 2001, at 21:10:33
In reply to Elizabeth,,,,, posted by gilbert on June 15, 2001, at 16:16:18
> Elizabeth,
>
> You are a good soul. You contibute and you ar so even tempered as well as informed. The way you just handled the above postings....style and grace....
>
> Thanks,
>
> GilAfter following that link to Usenet (!) I have to second Gil's post. . .I've really got to hand it to you, Elizabeth. . .Grace under pressure.
Admiringly,
Zo
Posted by Shar on June 17, 2001, at 0:49:50
In reply to Shar - Cocktail, posted by Neal on June 16, 2001, at 13:06:56
It is the generic form of Vistaril. V is supposed to be a tranq but I find it does not have a strong effect on me. I take it for strong anxiety that I sometimes have, and it is ok for that. It's also an antihistimine, anti-nausea, sleep inducing, etc.
Shar
> Shar - Nice to hear from you. Mine goes like this:
>
> Wellbutrin - 400mg (200 2x/day)
> Remeron - 30mg night, 15mg afternoon
> Neurontin - 3600mg (divided throughout day).
> Klonopin - 1mg night, .5mg afternoon
>
> It works ok. I was taking 2mg Klonopin, I liked it, but it caused libido problems, as it sometimes does in men, so am tapering down.
>
> The Neurontin works on GABA, as does Klonopin, so it helps with anxiety/social anxiety, and is reputed to have no addictive qualities.
>
> Shar - what is Hydroxyzine Pamoate? Haven't heard of that one before.
Posted by Neal on June 18, 2001, at 1:09:28
In reply to Neal - My cocktail update, posted by Shar on June 15, 2001, at 23:24:28
Shar-
My first post disappeared, so I'll try again.Wellbutrin 200mg 2x/day
Remeron 45mg
Neurontin 3600mg, throughout the day
Klonopin 1.5mg, but am tapering down--Neal
Posted by Elizabeth on June 25, 2001, at 7:18:29
In reply to Re: subthreshold epilepsy and stuff » Elizabeth, posted by Lorraine on June 16, 2001, at 11:36:01
[re Cylert:]
> OK, then it definately goes on the "to try" list.Good luck with it! Lots of people seem to think it's no good because it's milder than the amphetamine-type stimulants, but I found it quite helpful.
[re drug abuse:]
> Actually, I just messed around and took a lot of drugs for a couple of years in my teens. Shot speed for a month or two. The drugs I took depended on who I was around at the time and what was available.So you were a "garbage-head," in other words?
What you're describing sounds like it would probably qualify as abuse, but it sounds like it was just a youthful transgression, so I wouldn't worry too much about it.
[re moclobemide:]
> It was very easy to do and I have the name of the pharmacy if you need it.No thanks. I tolerate Parnate fine, and moclobemide doesn't have a very good reputation. It's not worth the time, effort, money, red tape, etc. to me.
> Who did you SPECT? Do you still have the "pictures"?
I must have been unclear. I had a SPECT scan done of my own brain while I was in the hospital. I didn't get any pretty pictures, just a written report. It's consistent with classic depression, from what I know of brain anatomy and functional imaging. In other words, it didn't tell me anything that I haven't known for a decade! I really believe functional imaging has a place in the future, but the idea that it's very useful in making psychiatric diagnoses right now is pretty far-fetched.
> > Those refer to different combinations of amplitude and frequency: for example, theta rhythm refers to low-amplitude (voltage) and moderately high-frequency (fast) waves.
>
> Yeah, I know, but I can't keep the terms in my head. It's like I'm allergic to these high tech words.I had to memorise them for two classes I took: that's my excuse. Hey, what's so high-tech about Greek letters? < g >
> It's really hard to separate fact from fiction in this stuff. It's all so experimental.
Exactly! Until quite recently, SPECT and PET were strictly research tools, and they still don't have even a rudimentary understanding of how these images relate to psychiatric disorders.
> (although lately, I've been feeling like drug therapy is experimental. You roll the dice and hope it comes up with your number.)
Definitely true if you have anything other than "classic" mental illness. You just have to resign yourself to being a guinea pig.
> Depekote--really slammed me down sedation wise.
What dose did you start on, and what was your serum level?
> Lomictal just made me feel wierd and uncomfortable.
Can you be more specific? (I found Lamictal to be free of all effects, even at the highest doses.)
> Now it's Neurontin. There are others to try, but I don't want a lot of cognitive side effect (because my cognitive abilities are weak due to the depression anyway).
I think the cognitive impairment is secondary to the depression: if you treat the depression adequately, the brain fog will follow.
-elizabeth
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