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Old 12-11-2010, 05:25 AM   #14 (permalink)
pinenutcasserole
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Join Date: Dec 2010
Posts: 66
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Hi both,

Stepping on a soap-box, with respect:

I share your concern, J, that SSRIs were put to market without robust investigation of, or consensus on, their underlying mechanisms and effects. In the 90s, the serotonin hypothesis was seductive - and certainly, initial outcomes appeared to prove its validity. It's now being revisited. The knock-on effects of serotonin reuptake inhibitors on other neurotransmitters remain unknown and continue to be largely unstudied. It took over a decade for wildly confused patients, who'd previously suffered in isolation, to organize the critical mass of lawsuits it took to get GSK to admit that suicidal ideation, weight gain, and discontinuation syndrome were linked with paroxetine (my drug... I don't know much about Zoloft, but they're in the same class of drugs). Obviously, part of the problem was bias - patient experiences were discounted, since their initial diagnoses cast doubt on the cause of the symptoms.

I find it unacceptable - to put it very mildly - that all this had to emerge in a clinical context, in the open market. Trials for paroxetine have been no longer than 12 weeks at 40 mg. I don't know much about Zoloft, but it's the same class of drug, and imagine the protocol was similar. As we've experienced, J, clinicians prescribe it for *years* at much higher doses. The 'empirical' tack. "Hey, it could work, let's see what happens." And patients like us are often in no position to be critical healthcare consumers when we first approach practitioners. Most of us just 'want it to stop', whatever it is.

I'm not suggesting there's a conspiracy. Doctors (and we're usually talking about overwhelmed GPs, who then refer to psychiatrists) want to treat patients as much as patients want to be treated. Their mutual desire to believe in drugs' efficacy converged with pharma companies' interest in selling to a (sadly increasing) market, and was expedited by the unbelievable practice of advertising the stuff on television, creating a demand-led prescribing culture. The economics of health care (even in Canada, where I'm now based) often mean that in practice, too many patients are handed out drugs in the first instance ("cheap", even if it isn't) and in lieu of, rather than in conjuction with talk therapy (expensive). I'm really pleased to hear you've found solid support.

Cassie: you're right to encourage people to be critical of studies. There's a fair amount of sensationalism in science journalism, and too many studies are less rigorous than we'd all like. (Including, I might add, some of the ones that established SSRIs as the 'gold standard' drug treatment for affective disorders.) Also, few academic journals - and this extends to disciplines outside of psychology - were/are interested in publishing the null hypothesis. This is, I think, more a question of sociology and economics than anything nefarious ( 'x didn't happen' is less sexy than 'y did', to both editors and readers). (Though in the case of the FDA, it's hard not to think of it as being a question of influence.)

I'm not sure I buy the distinction between biochemically based depression and any other kind. (Former medical anthropology/philosophy of mind student.) I'm not trying to be glib or rude, or bring up the tiresome (and outworn) nature/nurture debate... but aren't all experiences biochemical, at bottom? I mean obviously there are many kinds and causes of depression... but even fMRIs can't offer insight into causation. The brain of someone whose depression is exogamous bears the impact of social causes. As you know, researchers are finding that we are neuroplastic - for others, change in response to experience - well into and through adulthood. To a greater or lesser extent (we still don't know enough to know how much), it seems our brains reflect our lives, as they are lived. Which is hopeful news for us both, J!

I haven't meant to be argumentative or disrespectful to you, Cassie, and I'm not against all pharmacological treatment. It's true that many people are helped by drugs. It's just that we don't yet have robust enough research to make better guesses about who will, and who won't - and in the meantime, the unlucky ones suffer. And this new suffering is compounded by more familiar pains. It's unjust, and theoretically preventable.
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J: Bit winded after all that, but briefly now, I truly empathize with your struggles. Your post has called me to remember the long road I've travelled, but if it helps, that time (and the feeling of that time) is very far away from me now. It's true you've got some tough days ahead, but you're an equally tough cookie. You've already been a strong advocate for yourself, through the avenues available to you so far. It'll be something to see what you will do when you're in your new situation!

I'm glad to hear you're taking it all as slowly as you need to, and hope as others do that you stay kind to yourself. You sound tremendously frustrated right now. Lean on those helpers, lean on your sister. I absolutely agree that situation, proximity, & modelling have a tremendous influence, for good or ill. I can imagine it will be hard to generate the wherewithal to get going on much, if there's not much activity or healthy eating happening at home, and your sleeping and sense of well being are where you've said they're at. I'd like to take the liberty of recommending a few very practical things:

- Get a dawn simulating alarm clock. Magic, if you do your best to practice sleep hygiene. First time ever I've woken up painlessly. I have this one, it rocks.
- January = a new semester. I've suggested to someone else on this board something that really helped me, which is taking a night class in something fun. (You're a precise and moving writer... maybe something like short story writing? Which I'm guessing you might have already tried... Or maybe something you don't have a history with but have wanted to try. )

I'll repeat my argument for it: it's a weekly appointment that will *make* you get out of the house. It'll be in the evening, so perhaps less of a challenge in terms of time management. It's a class and therefore structured, which in your case (my case, of old, and still) may be a good thing. And in the days after a class, if you're like me, you might find yourself 'kick-started', just sort of feeling intuitively that you want to do more of other things ...

- Something physical that doesn't make you feel like a failure. I'd suggest walking, but in the suburbs, where only the most intrepid cats and maybe the elderly dare venture out, it might feel a bit daunting. (Did me anyway.) Personally, I find DVDs hugely helpful. Easy to do at home, low investment, little gear or hassle involved. Sometimes I just do em in my pjs. There are some that are aimed at rehabbing folk, which might better accommodate your fibromyalgia issues.

I hope your meeting with the herbalist goes well! And am glad I was able to be helpful, thank you for letting me know

Crikey, I've written a novel. And most definitely thrown some opinions around.

nx

ps - pinenutcasserole is just me being literal and stubborn. I was actually looking at a pine nut when I registered, but the name was already taken.

pps - i don't mean to encourage people who are happy with their drugs to leave them, but, j, for you (in the absence of a discernible pm'ing function): I found this site helpful in terms of information on tapering. It's to do with paxil, but many on there are on other SSRIs.

Last edited by pinenutcasserole; 12-11-2010 at 06:07 AM.
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