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Re: My Experience Mirrors Yours

Posted by dewdropinn on July 31, 2007, at 18:04:14

In reply to Re: My Experience Mirrors Yours, posted by linkadge on July 31, 2007, at 13:07:23

Yikes! What can I say man? I wouldn't worry too much about being a complainer -- it's the natural response to being presented with a negative scenario that doesn't have a readily available solution. I watched my mother go through a similar breakdown over the course of year -- on the downside, I think I inherented the whole genetic schmorgasborg from her -- on the upside, it's made me very proactive about finding solutions and trying every possible option available.

I've been officially diagnosed as having atypical major depression by one doctor and atypical bipolar by another -- which would seem to be an either/or maybe neither situation. At a certain point, the diagnosis becomes largely irrelevant -- the diagnosis determines the treatment, and if the treatment isn't effective, then the diagnosis doesn't mean a great deal. I don't think there are many doctors who can truly deal with the reality that many patients don't fit into any easily codified diagnosis parameters, and won't respond to conventional treatment algorithms -- there are very few truly creative doctors out their. There are few doctors who will adopt the "art rather than a science" approach. I was truly lucky -- the semi-retired psychopharm researcher I consulted with was a major figure in the development of many of the major psychoparm modalities currently in use -- so when I presented my insurance plan doc with these wacky drug combinations, her initial response was "there's no way in hell I would ever prescribe that!" -- but when she found out who devised the protocol, she immediately reached for the prescription pad. Now she's dispensing high dose Lamictal -- which she previously deemed only appropriate in cases of severe epilepsy -- like tick tacs and boasting about her newfound track record of success. Before you know it, she'll be officially recognized as specializing in treatment resistent disorders.

You've definitely done your time on the medication rodeo. Your concerns associated with toxicity issues, carcinogenetic potential, and brain damage are obviously based on documented evidence -- so they are valid, but I would consider re-thinking the situation for 2 reasons. 1) there are very few drugs that have been around as long as Dilantin and Tegretol, and they are among the very few drugs that people have sucessfully taken for entire lifetimes at heroic doses -- no one can truly say what the ramification of taking SSRIs for 30 years are, no one truly knows the impact of long-term administration of any psychiatric med produced in the past 20 years -- true long-term data doesn't exist. It goes to figure that a drug formulated in 1938 would have a rather lengthy list of possible side effects -- we've had almost 50 years to collect data, which is as much cause for comfort as it is concern. In many respects, some of the older anti-convulsants are among the only psychiatric meds (excepting the benzos) that you can feel some degree of comfort taking for 10, 20, 30 years because tens of millions of people have done exactly that. This isn't to say that people haven't suffered side effects associated with long-term administration of Dilantin or Tegretol -- it's just that the track record for long-term use is very well defined. Epileptics usually take these drugs at much higher doses than those suffering from mood disorders, which just makes the long term picture look rosier. Most of the really dreadful side effects you mention are linked to dose -- at high doses there are neurotoxicity issues, but there's a considerable amount of brain damage involved with untreated epilepsy, and there's a neuro-degenerative component to mood disorders, so there's still probably a net gain associated with taking anti-convulsants. Jack Dreyfuss, phenytoin's single greatest promoter, attributed his sanity and longevity to his low dose Dilantin protocol, and he lived well into his 90's. So, I think there's many reasons why you need not be overly concerned with the implications of long-term use of anti-convulsants -- and there's probably far greater cause for concern associated with the long-term administration of the newer antidepressants and antipsychotics because you're entering entirely uncharted territory. 2) Your dilemma also begs the old quality of life question -- is it better to live a long and miserable life, or a less lengthy but happy and productive one? If you die of a heart attack 30 years from now because of cardiotoxicity issues associated with long-term use of a tricyclic, will you have lived a happier and more productive life, than if you avoided the potential risks and consigned yourself to a lifetime of compromise? These are really heavy questions, but I think there the one's you're going to have to ask yourself. With treatment resistant mood disorders, I personally think that you have to be willing to assume some risks, because the consequences of not exploring options with potential long-term side effects can be absolutely tragic -- and it's a self-inflicted tragedy, which makes it all the worse.

That's about as morbid as a statement of encouragement can be, but I do think there is cause for hope, if only that there are untried possibilities and tried options that have provided some relief in the past. I know that you know you have some big questions to ask yourself, and hopefully you'll find the best answers. It sounds like your most immediate problem right now is simply finding a doctor, and preferably one who's somewhat competent. I've gotta believe there's somebody in the 2nd largest country in the world.

Again, I wish you all the luck in the world -- and I look forward to hearing how the situation evolves.

Drew

> Well, you've certainly said some stuff that makes some sense. However, I do think that there are disorders that simply do not fall into the rhelm of treatment with current medications.
>
> For instance, the endocannabanoid system may have future application to mood disorders. Individuals suffering certain symptoms of melancholic depression appear to have deficiant endocannabanoid function. Marajuanna is kind of part antidepressant, part anxiolytic, part mood stabilizer. I would personally like to see the application of drugs like URB-597 on patients with marked insomnia, weight loss, anhedonia, agitation, psychomotor restlesness.
>
> My mother too has some kind of inbetween disorder. She's seen doctors all across this country (Canada) and into the States. She's been hospitalized numerous times and really doesn't get a whole lot better. She saw a doctor in Michigan. She said to him, "I',m not your typical Bipolar". The doctor said to her "You're not typical anything!".
>
> Unfortunately people like me often just get called complainers. Or that there is nothing wrong. Just because we have little that helps says their is nothing wrong?
>
> I had more sucess with TCA's. Clomipramine and doxapin were helpful. My current doctor refused to prescribe them however! He said I would have a difficult time getting them filled at pharmacies. What a bunch of B.S. that is. (ALthough, I am partially to blame since I stopped taking clomiprmaine on my own on account of its genotoxicity.) Its not that it didn't help, I was just too afraid of developing cancer.
>
> >I might advise trying to arrange for a >consultation with a research psychiatrist at >NIMH, John's Hopkins (their really on the front >lines with this stuff), or another similarly
> >hallowed hall of psychopharm research.
>
> That'd be great, but I can't even find a regular psychiatrist. My current one left for a year break. He left me with a year of refills of drugs that are doing dittely.
>
> >As for the bipolar issue, he was in generally in >agreement with the treatment guidelines for >classic bipolar, but he indicated that it wasn't >uncommon to prescribe antidepressants in >difficult cases -- I believe Wellbutrin and the >MAOIs were the preferred options of choice.
>
> Suprisingly Wellbutrin is one I havn't tried. Probably on account of my symptoms of anxiety.
> I tried parnate, but had a spontanious hypertensive crisis that landed me in the hospital. They took me off it although, I think it was doing something.
>
> The problem is that I am scared of mood stabilizers. Tegretol is directly neurotoxic to proliferating hippocampal neurons (possable source of exaserbating depression). Dilantin is neurotoxic. Sustained use of dilaintin with actually lead to skull thickening. Sustained exposure to tegretol often damamges the cerebellum. I am afraid of what long term treatment with psychiatric drugs can do based on how they have affected my mother.
>
> >I had a lot of success with selegiline, but only >in combination with a mood stabilizer. I also >knew what mood stabilizers worked, kind of >worked, and definitely didn't work -- Lamictal >was at the top of the list, Tegretol came in >second, so long as it was taken with some kind >of antidepressant, Trileptal came in third; and >very low dose Depakote was the final viable >option -- anything over 125mg was just brutal, >but about 1/4 of the sprinkle cap was tolerable >and beneficial.
>
> Depakote is heavy. I have tried lithium, depakote, trileptal, tegretol, and lamotrigine, in combination with various SSRI's, SNRI's, and some TCA's. The combinations were killers for me.
>
> >Note -- none of these mood stabilizers were >effective by themselves, and most of them made >depression worse without some kind of >antidepressant add-on. The other thing that I >knew from experience is that I couldn't take >antidepressants without a mood stabilizer -- >they were either totally ineffective, or they >lost their efficacy over time, or they made me >more anxious and made sleep virtually >impossible.
>
> See I have this too, but I hesitate to call it bipolar. A lot of these reactions are documented side effects of the drugs. I have never had a manic reaction to a drug. The only manic period I had was from SSRI withdrawl.
>
> >One final note and then I'll then I'll stand >back and say -- "I look forward to seeing how >everything goes" -- because honestly, there's >very little I could add. Finding a true research >doc for a consultation appointment would be >ideal, but may not be feasable due to financial >and geographical issues -- my second suggestion >would be to either work with your doctor to at >least give antidepressants w/ mood stabilizers >atry or to find one who's willing to explore >alternatives -- mood stabilizers alone clearly >isn't an option. As far as possible drug options >to explore or at least inquire about, I would >suggest discussing Tegretol and Trileptal with >your doctor.
>
> Been on them both with and without antidepressnats. They often lock me into a very dark place. I took tegretol with celexa for about half a year. I just slept, ate, cried, well you know the story.
>
> >One of the interesting aspects of Tegretol was >it's effect on cognition -- I suddenly started >thinking musically again, re-gained my writing >chops, and re-gained much of the creativity that >I thought I'd lost -- it made me more depressed, >but it gave me something as well.
>
> Strange, I had the opposite reaction. I developed abnormal pitch preception (where everything felt like it dropped a semitone). I also had to quit playing the organ at a church on account of numbness and loss of dexterity. I felt like I couldn't feel the music at all. I felt no desire to play.
>
> >Depakote sprinkles are another option well worth >exploring, again make sure to take with an >antidepressant, because I can almost assure you >it will increase depression to some degree -- >Depakote doesn't improve cognition, but it does >have a noticable anti-anxiety component -- the >key for me was pouring out a tinsy tiny amout >from the 125mg sprinkle cap -- for me, the 250mg >pills were a one way trip to total, complete and >utter misery in every way imaginable. I think >you've actually made some real discoveries -- >recognizing that antidepressants and mood >stabilizers alone are not beneficial may be a >real insight into your particular condition, and >may lead the way to finding an optimal >combination.
>
> I should have made it clear in previous posts that I have tried numerous antideprssant mood stabilizer combinations. The mood stabilizers usually make anhedonia much worse regardless of whether am on or off an antidepressant.
>
> (granted I havn't taken all antidepressants)
>
>
> > -- I'm also guessing that you've had some >positive responses to select antidepressants, so >you may have already sorted out the most viable >add-on options. I have a feeling that you're >going to hit upon a combination that leads to >improvement, if not total remission -- >unfortunately, you've still got to go through >the trial and error rodeo, but I think some >pieces of the puzzle may already be on the board.
>
> I wouldn't get my hopes up. I've seen my mother desintigrate in spite of the best and most dedicated effort of doctors. I know I am not my mother, I just have no faith in the efficacy of these treatments. Perhaps thats why I respond so poorly.
>
> Linkadge


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Psycho-Babble Medication | Framed

poster:dewdropinn thread:772375
URL: http://www.dr-bob.org/babble/20070730/msgs/773151.html