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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 8 of 8. This is the beginning of the thread.
Posted by Bob on January 17, 2005, at 0:00:35
I have taken psychoactive meds, almost without break, since 1991. At first it was just trace amounts of Prozac, followed by a break of a few months, and then it got serious with all kinds of meds from different classes (no MAOIs, and no antipsychotics) until about two months ago. For the first time in almost 15 years I have been off all psychoactive meds since mid-November of last year! It is nothing short of a miracle, as I had terrible, terrible withdrawl from most meds I tried, especially SSRIs and the newer anticonvulsant meds also. I think the only reason I was able to wean off was because I managed to get my regimen down to one med - Lithium. Then, I tapered this very slowly, and eventually stopped, with much pain and consternation.
My question is what I should do next. As I look back, it is quite evident that the meds caused as many problems as they crudely covered up. I don't ever, ever want to go back on them, but figure I probably will someday. By doc now things I should tough it out as long as possible to see if things "clear up", but I'm not too sure I can last much longer like this. I have anxiety and depression that come and go. However, just as problematic are the muscle problems (tension or pressure that comes in waves ever so often), breathing problems, and severe weakness after the slightest physical exertion. These problems are largely physical in nature, and it seems like, as much as any mental issue I may have, my body is now a physical mess. I don't know if I'd have these issues if I'd never tried medications (not that I felt I had a choice), but I tend to believe I wouldn't. Anyway, does anyone here think I can actually wait out this mess and it will improve, or does that sound like a dead end?
I've tried stretching and very mild exercise in the fleeting moments when I'm not dogged by breathing problems, muscle discomfort, weakness, or whatever. I know this sounds ridiculous, but the physical activity seems to make it very much worse - especially a day or two later, as I seem to experience a rebound reaction of some sort, with increased anxiety, and physical discomfort (not the kind of discomfort associated with muscle soreness, but a muscle pressure, kind of deal - definitely not normal).
Any suggestions for where to go from here? I'm thinking that, since I really don't want to go back to meds, I could try ECT, but it seems to weird to try that to fix what is at least a 50-60 percent physical type issue. I have heard of people responding better to meds after ECT, though.
Posted by johnsmith12345 on January 17, 2005, at 2:45:19
In reply to Need advice on what to do next. (long), posted by Bob on January 17, 2005, at 0:00:35
Did you have the physical problems while you were on the meds, or only after you stopped them?
Have you gone to a regular doctor to get these physical symptoms checked out?
Do you have any negative thinking patterns that might be helped by a psychologist?
Nobody has any way of knowing whether, in your specific case, waiting it out would be a dead end. They can only rely on statistics, which would indicate a high probablity of a dead end. That is my gut feeling as well.
If you decide to go back on medicines, I would recommend immediately trying the MAOIs. Why have you avoided them for so long?
Posted by Bob on January 17, 2005, at 14:42:41
In reply to Re: Need advice on what to do next. (long), posted by johnsmith12345 on January 17, 2005, at 2:45:19
> Did you have the physical problems while you were on the meds, or only after you stopped them?
I'd say most of the problems (plus others were present on the meds, but only in the latter years (maybe last 4 or 5, with the last 2 being even worse). I developed similar breathing problems on Welbutrin, but much to my chagrin, it hasn't seemed to dissipate with my discontinuation.
> Have you gone to a regular doctor to get these physical symptoms checked out?
Oh yes. I've seen my general/primary physician a number of times in the last few years, and have gotten at least two physicals (the last being only 2.5 months ago). Nothing has been found - it's crazy. I've also gone to see a psychiatrist who specializes in difficult cases, and we did a number of tests for things like cortisol, testosterone, as well as SPECT scans, and the like. Basically, everything we could think of within reason. Nothing out of normal turned up. He did send me for a sleep study, though, and they said I have apnea. It has proven quite difficult for me to remain compliant with that godforsaken machine, however, and if I manage to use it on any particular night, it seems just as likely to cause me to feel worse as better. I'm thinking about doing another sleep study, but I don't know.
> Do you have any negative thinking patterns that might be helped by a psychologist?
I'm seeing a "therapist" right now, but she's not a psychologist. In the past, I've entertained the possiblity of a psychologist, but never went through with it. This may come across has a bad attitude, but at this point, I don't see how negative thinking could be producing muscle pressure, bad reactions to physical activity, breathing abnormalities, etc. For thought problems (which I still do have, of course) maybe, but for physical problems? That's one of the reasons why I would wonder about the efficacy of ECT for my particular situation.
> Nobody has any way of knowing whether, in your specific case, waiting it out would be a dead end. They can only rely on statistics, which would indicate a high probablity of a dead end. That is my gut feeling as well.
Good point. It's real hard to know when enough is enough. I REALLY had some bad times on some of those meds, and REALLY don't want to go back there.
> If you decide to go back on medicines, I would recommend immediately trying the MAOIs. Why have you avoided them for so long?
I avoided MAOIs because it was so terribly hard, and took so long, to get off meds that I was afraid the withdrawl would precipitate suicide, since I wouldn't be able to take other meds at the same time to fight that. Additonally, I have always been a major weight gainer on meds (45 lbs on Anafranil in a matter of months), and always been very adversely affected sexually. I haven't heard a lot of good things about tolerability with Nardil, rigorous diet notwithstanding. I see myself eventually sleeping all the time (happened with Effexor, Paxil, Anafranil, and many others), gaining massive weight, never having an orgasm, and that doesn't even address whether it would address my mental issues. My doctor actually has encouraged my waiting to see, as he doesn't see how drugs are really solving the problem. I won't rule anything out at this point.BTW, thanks for your input. I appreciate it.
Posted by johnsmith12345 on January 17, 2005, at 17:21:35
In reply to Re: Need advice on what to do next. (long) » johnsmith12345, posted by Bob on January 17, 2005, at 14:42:41
You have a challenging case. Here is what I am thinking:
Curing your physical symptoms would make your life a lot better, but since the doctors have not found anything abnormal, you should put this strategy on the back burner for now.
Curing your depression may or may not cure your physical symptoms. But if your mood is improved, you may be able to live with those problems. You seem to be leaning towards this option anyway based on your interest in ECT.
I don't believe negative thinking is causing your physical ailments. But, you say you do have thought problems. How long have you had them for? Were they helped by any of the medicines? Were they helped by the therapist?
>Good point. It's real hard to know when enough is enough. I REALLY had some bad times on some of those meds, and REALLY don't want to go back there.
I understand. But, that limits your options considerably. Maybe just give it one last go of trying the MAOIs before giving up on meds. They are often effective even when many other treatments have failed. If those fail, you can move on to ECT. Or just go straight to ECT without trying MAOIs first. Also there is a new treatment called trans cranial magnetic stimulation (TMS) that may or may not be available to the public at this time. I do not know much about it, except that it can possibly treat depression without taking any meds. There is also this, it doesn't appear to be out yet though:
http://www.washingtonpost.com/wp-dyn/articles/A44636-2004Jun15.html
>I avoided MAOIs because it was so terribly hard, and took so long, to get off meds that I was >>afraid the withdrawl would precipitate suicide, since I wouldn't be able to take other meds at the> same time to fight that.
Yes, that does seem risky. You could always use painkillers, alcohol, and small doses of stimulants (not sure about this third one) during the washout period to stave off the suicidal thoughts. Furthermore, I saw an article on Medline stating that when patients were switched from one MAOI to another using a shorter than normal washout period, there were no ill effects. I can look it up if you are interested.
>Additonally, I have always been a major weight gainer on meds (45 lbs on Anafranil in a matter of months), and always been very adversely affected sexually. I haven't heard a lot of good things about tolerability with Nardil, rigorous diet notwithstanding. I see myself eventually sleeping all the time (happened with Effexor, Paxil, Anafranil, and many others), gaining massive weight, never having an orgasm, and that doesn't even address whether it would address my mental issues. My doctor actually has encouraged my waiting to see, as he doesn't see how drugs are really solving the problem. I won't rule anything out at this point.
I don't know about the weight gain, but Parnate has a reputation for causing insomnia rather than too much sleep. Also to my knowledge it typically has positive effects on libido, but I will need to do more reading.
Your doctor is right that drugs do not seem to be solving the problem, but that does not automatically mean that the alternative strategy (waiting it out, in this case) will be any more effective. Keep waiting if you think it shows promise, but I wouldn't spend more than a month or two on it.
Posted by johnsmith12345 on January 17, 2005, at 19:49:07
In reply to Re: Need advice on what to do next. (long), posted by johnsmith12345 on January 17, 2005, at 17:21:35
Here are some anecdotal reports of maois. some good, some bad:
http://www.dr-bob.org/babble/20030723/msgs/245282.html
http://www.dr-bob.org/babble/20030728/msgs/246424.html
http://www.dr-bob.org/babble/20030728/msgs/246402.html
http://www.dr-bob.org/babble/20030728/msgs/247252.html
http://www.dr-bob.org/babble/20040122/msgs/305475.html
http://www.dr-bob.org/babble/20031225/msgs/293710.html
http://www.dr-bob.org/babble/20020829/msgs/118604.html
http://www.dr-bob.org/babble/20020906/msgs/119285.html
http://www.dr-bob.org/babble/19991123/msgs/15963.html
http://www.dr-bob.org/babble/19991212/msgs/16929.htmlAlso, i am farily certain that combining tricyclics, or at least certain ones, with maois is okay if both are taken at a low dose. This could be an option as you are withdrawing from MAOIs.
Finally, if you do decide to go on MAOIs I would strongly recommend the following. First getting a medic bracelet that says you take MAOIs. Second getting a good home blood pressure monitor. Third demanding that your doctor give you thorazine to take in the case of a hypertensive crisis (ie "emergency pills").
Posted by Bob on January 17, 2005, at 20:21:52
In reply to Re: Need advice on what to do next. (long), posted by johnsmith12345 on January 17, 2005, at 17:21:35
> You have a challenging case. Here is what I am thinking:
>
> Curing your physical symptoms would make your life a lot better, but since the doctors have not found anything abnormal, you should put this strategy on the back burner for now.
Well, the apnea could be causing problems, but it's impossible to say. It could also be some sort of strange anxiety effect.
>
> Curing your depression may or may not cure your physical symptoms. But if your mood is improved, you may be able to live with those problems. You seem to be leaning towards this option anyway based on your interest in ECT.
>
> I don't believe negative thinking is causing your physical ailments. But, you say you do have thought problems. How long have you had them for? Were they helped by any of the medicines? Were they helped by the therapist?
The "thought problems" were the original reason why I sought treatment. Some anxiety, rejection sensitivity, anger, unhappiness. Before I took medecine, I'd say I had almost no physical problems, save for sleeping too much - a lot of fatigue or drowsiness for someone in their early twenties. Many of the meds did shut down obsessive thinking and anxiety, but quickly bogged down into extreme fatigue, lethargy, and mailaise. Blunted emotion, in short. 15 years ago, if I came off of a med, my body bounced back, no it's a mess.
> >Good point. It's real hard to know when enough is enough. I REALLY had some bad times on some of those meds, and REALLY don't want to go back there.
>
> I understand. But, that limits your options considerably. Maybe just give it one last go of trying the MAOIs before giving up on meds. They are often effective even when many other treatments have failed. If those fail, you can move on to ECT. Or just go straight to ECT without trying MAOIs first. Also there is a new treatment called trans cranial magnetic stimulation (TMS) that may or may not be available to the public at this time. I do not know much about it, except that it can possibly treat depression without taking any meds. There is also this, it doesn't appear to be out yet though:
>
> http://www.washingtonpost.com/wp-dyn/articles/A44636-2004Jun15.htmlFunny you posted that article. I was actually in a study that would have led to me possibly being in planted at a major university hospital, but the program there closed down over a year ago. There is no word on the final approval for that device. I don't know if I'd do it, as the response rate was something like 23 percent, and there are significant side effects, one of which, ironically, is breathing problems.
>
> >I avoided MAOIs because it was so terribly hard, and took so long, to get off meds that I was >>afraid the withdrawl would precipitate suicide, since I wouldn't be able to take other meds at the> same time to fight that.
>
> Yes, that does seem risky. You could always use painkillers, alcohol, and small doses of stimulants (not sure about this third one) during the washout period to stave off the suicidal thoughts. Furthermore, I saw an article on Medline stating that when patients were switched from one MAOI to another using a shorter than normal washout period, there were no ill effects. I can look it up if you are interested.
Have you used painkillers and alcohol to assuage the effects of withdrawl, or is that second hand info? Isn't alcohol bad news with MAOIs?
>
> >Additonally, I have always been a major weight gainer on meds (45 lbs on Anafranil in a matter of months), and always been very adversely affected sexually. I haven't heard a lot of good things about tolerability with Nardil, rigorous diet notwithstanding. I see myself eventually sleeping all the time (happened with Effexor, Paxil, Anafranil, and many others), gaining massive weight, never having an orgasm, and that doesn't even address whether it would address my mental issues. My doctor actually has encouraged my waiting to see, as he doesn't see how drugs are really solving the problem. I won't rule anything out at this point.
>
> I don't know about the weight gain, but Parnate has a reputation for causing insomnia rather than too much sleep. Also to my knowledge it typically has positive effects on libido, but I will need to do more reading.
When I mentioned weight gain, it was mostly in relation to Nardil, which seems to be the king of that, as well as chemical castration.
> Your doctor is right that drugs do not seem to be solving the problem, but that does not automatically mean that the alternative strategy (waiting it out, in this case) will be any more effective. Keep waiting if you think it shows promise, but I wouldn't spend more than a month or two on it.
Thanks again for all your advice.
Posted by johnsmith12345 on January 17, 2005, at 21:13:26
In reply to Re: Need advice on what to do next. (long) » johnsmith12345, posted by Bob on January 17, 2005, at 20:21:52
1. apnea may be the cause:
Yes, it may. I don't know what apnea is, but if you think it is an issue, get it treated and then see if your symptoms improve. You can do this while you are taking time off medications.
2. original reasons why you sought treatment:
Based on your mention of sleeping too much and rejection sensitivity, I would say that your depression leans towards the atypical. MAOIs are good at treating this type of depression. ECT may be as well, I'm not sure. See here:
http://www.healthyplace.com/communities/depression/atypical.asp
3. poor transplant results:
That's too bad about the transplant. Have you looked into TMS? Initial results are ambiguous but it is something to try if you are dead set against medicines.
http://www.healthyplace.com/communities/depression/treatment/tms/index.asp
4. using painkillers for withdrawal:
I thought you meant the relapse of the depression, caused by stopping the medicine would lead you to consider suicide. In that case painkillers might be a temporary solution, lasting long enough to switch to the next MAOI. But now I realize that doesn't make sense, considering you are completely off medicines now and still alive. Besides, I now know there are other ways to bridge the 7-10 day washout period between MAOIs or after stopping them completely. Like I said before, some tricyclics can be combined with the MAOIs if special care is taken. Trazadone is okay as well. I believe there are one or two others. My point is, don't avoid MAOIs because you are afraid of the washout period. There are things you can take, you just need to look harder. As for combining alcohol with MAOIs, it is okay, with some exceptions. The problems come with certain beer and wine that has high tyramine levels.
5. weight gain
Yes, weight gain seems very common on Nardil. Maybe you will get lucky with Parnate or ECT and not have to deal with that problem.
Posted by johnsmith12345 on January 17, 2005, at 21:34:25
In reply to Re: Need advice on what to do next. (long), posted by johnsmith12345 on January 17, 2005, at 21:13:26
P.S. I mentioned that you should ask for thorazine as an emergency pill. Well, it is a subject of controversy whether that or nifedipine is better. As I am learning more, nifedipine seems like a better choice. But either one is a far better choice than having no emergency pill.
This is the end of the thread.
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