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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 44 to 68 of 85. Go back in thread:
Posted by Jost on September 29, 2006, at 9:06:35
In reply to Re: I signed the BAN EFFEXOR petition, posted by notfred on September 29, 2006, at 8:06:57
Many signers of the petition were in the midst of withdrawal. That's not the time to make ultimate judgments of one's overall experience of a drug, since it's the moment when it's at its worst,
Having to go off an AD is an really demoralizing experience, even if the taper works and you have to face anxieties about reentering the bad old ways.
If you don't taper, or don't get good advice, or aren't appropriately treated for discontinuation symptoms, that's going to make it much worse.
Another concern is that once having made that statement, the idea becomes more strongly labeled in the minds of sufferers, as well as readers.
Does this emphasis represent the most realistic sense of how good/bad the drug is, and what it's cost/benefit ratio is?
Not all signers were in that position, but a significant number of them.
Also the number of signers as of yesterday, was approximately 11,000.
A lot of people but not hundreds of thousands.
Jost
Posted by SLS on September 29, 2006, at 9:41:20
In reply to Re: Effexor petition-- validity?, posted by Jost on September 29, 2006, at 9:06:35
> Also the number of signers as of yesterday, was approximately 11,000.
>
> A lot of people but not hundreds of thousands.Thanks for providing the actual number.
- Scott
Posted by SLS on September 29, 2006, at 9:52:46
In reply to Re: I signed the BAN EFFEXOR petition, posted by notfred on September 29, 2006, at 8:06:57
> > doctors have failed in their responsibilities to acknowledge this phenomenon and come up with a solution for how to discontinue the medication in a way that minimizes withdrawal effects. For now, doctors are failing to instruct patients explicitly how to taper medication.
> I agree some docs are clueless about this. But generalizing all docs is not fair. My present doc knows about the prozac method. Previous doc had me taper to get off Efexor, and use ativin during the taper.That was smart. I think there might be some kindling thing going on there with this withdrawal syndrome. A benzodiazepine or anticonvulsant might help prevent that. Did you experience any brain zaps?
You are right about the generalizing. However, sometimes it is necessary for effective writing. I still think the problem is pervasive enough so as to require more articles to be written in medical journals.
- Scott
Posted by frankie2120 on September 29, 2006, at 9:57:00
In reply to Re: Effexor petition-- validity? » Jost, posted by SLS on September 29, 2006, at 9:41:20
I like Effexor XR... It's working nicely for me.....
Posted by Phillipa on September 29, 2006, at 12:14:24
In reply to Re: I signed the BAN EFFEXOR petition, posted by tizza on September 28, 2006, at 2:00:37
Is this the same petition from two years ago? Love Phillipa ps my doc doesn't use it never asked why
Posted by Racer on September 29, 2006, at 14:24:31
In reply to Re: I signed the BAN EFFEXOR petition » notfred, posted by tizza on September 29, 2006, at 4:38:31
>
>
> That is my point exactly, most of my friends who have eaten effexor have become very ill indeed while stopping it.OK, granted, Effexor isn't very friendly when you stop it.
Did it work while you took it? Frankly, that's much more of an issue for me, when considering a drug. Don't you think?
>
>
> I'm only one of the thousands upon thousands who have reported this hell, I'm glad you got off with minor discomfort, but I didn't, so please let everyone explain their personal stories.
>
>OK, my personal story about Effexor is that it didn't work all that well for me, stopped working pretty much entirely within about two years, and withdrawal was hell.
It also saved my life.
My view on the drug? I wish it had worked better for me, I'm grateful that it worked as well as it did -- it wasn't great, but it was good enough for me to be functional on it, which probably saved my life -- and I had a hell of a hard time stopping it. It's a good drug, in this imperfect world. It certainly worked better than some of the other drugs I've been on, had fewer side effects for the most part, and the withdrawal, while uncomfortable, wasn't impossible. (Please don't try to tell me it must not have been as bad for me as it is for others. There's no heirarchy of suffering, and this isn't a contest.) And no drug is evil, which is a point I won't belabor.
Withdrawal is manageable -- but more importantly, it doesn't last forever. It may feel as though it does, but it really doesn't.
Let's allow the drug to be helpful to those whom it helps, and just regret that we weren't part of that number.
Posted by SLS on September 29, 2006, at 14:43:04
In reply to Sorry... » tizza, posted by Racer on September 29, 2006, at 14:24:31
> and withdrawal was hell.
How do you account for that?
- Scott
Posted by Racer on September 29, 2006, at 17:14:37
In reply to Re: Sorry... » Racer, posted by SLS on September 29, 2006, at 14:43:04
> > and withdrawal was hell.
>
> How do you account for that?
>
>
> - ScottI guess I don't know what you're asking? How do I account for withdrawal being hellish?
Ah, you know what I didn't mention in all that? The most hellish parts of withdrawal wasn't so much the final taper -- that wasn't a lot of fun, but certainly wasn't enough for me to demonize a drug that allowed me to function when I wouldn't have been able to otherwise. And even then, if I hadn't refused my then-pdoc's offer of Prozac to help with the taper, I probably wouldn't have experienced even that much trouble.
What was really hellish was a couple of periods when I ran out and had to go cold turkey for a few days. (Once because I couldn't afford the drugs, but two or three times because my then-pdoc hadn't responded to the pharmacy's calls for refills. If I knew then what I know now, I would have gone in there and stood at the counter begging for just a couple of capsules to tide me over...) Those cold turkey periods were pretty bad. I didn't even realize it was withdrawal the first few times, which made it worse.
Guess this is a case where you just can't say that ignorance is bliss, huh? *g*
Anyway, I'll stick with what I said to begin with: I think Effexor is a good drug, and that a smart taper schedule can minimize the discomfort of withdrawal. I certainly wouldn't discourage anyonne from trying it, because if it works, it works...
Posted by SLS on September 29, 2006, at 17:24:57
In reply to Re: Sorry... » SLS, posted by Racer on September 29, 2006, at 17:14:37
If you had to do it again, how would you discontinue Effexor?
- Scott
Posted by Declan on September 29, 2006, at 17:28:10
In reply to Re: I signed the BAN EFFEXOR petition » notfred, posted by tizza on September 29, 2006, at 4:38:31
IMO the response rate to Effexor is unknown long term. It's all preconceptions and ideology. The idea that this board is entirely unrepresentative of the AD taking population is simply an assertion that is interesting.
Posted by SLS on September 29, 2006, at 18:17:20
In reply to Re: I signed the BAN EFFEXOR petition, posted by Declan on September 29, 2006, at 17:28:10
> IMO the response rate to Effexor is unknown long term.
How long is that? Which drugs do we know this for?
> It's all preconceptions and ideology.
I don't understand what you mean here.
> The idea that this board is entirely unrepresentative of the AD taking population is simply an assertion that is interesting.
I guess this is nothing more than a logical deduction. A guess. What is interesting, though, is that the people who respond to medication while posting here seem to fly away. That leaves just us. An observation, perhaps? I'm pretty sure. I'll keep asserting.
- Scott
Posted by notfred on September 29, 2006, at 19:38:21
In reply to Re: I signed the BAN EFFEXOR petition » notfred, posted by SLS on September 29, 2006, at 9:52:46
Did you experience any brain zaps?
>At one point in the ~10 years I took effexor
I was under a HMO that did not carry Effexor on their approved list. I had to get approved every 3 months and was sometimes forced to stop Effexor w/o a taper. If I did not take Ativan I would get the zaps for a 1-2 days. Then it was over. I did not find the zaps a big deal as I already have a huge startle response and a very twitchy NS. To me the zaps seemed more of the same, though clearly caused by stopping Effexor.I do not understand how anyone would expect to stop a very powerful med at once and be free of problems. It is simply reckless. It is a **huge** shock to the CNS. How does kicking the legs out from under something help it to get better ?
Posted by SLS on September 29, 2006, at 19:50:13
In reply to Re: I signed the BAN EFFEXOR petition, posted by notfred on September 29, 2006, at 19:38:21
> > Did you experience any brain zaps?
> If I did not take Ativan I would get the zaps for a 1-2 days.
That is a salient observation.
> At one point in the ~10 years I took effexor...
For how many of those 10 years did you find it effective?
How are you doing now?
What are you taking?
(Personal questions)
- Scott
Posted by notfred on September 29, 2006, at 19:53:22
In reply to Re: I signed the BAN EFFEXOR petition, posted by Declan on September 29, 2006, at 17:28:10
The idea that this board is entirely unrepresentative of the AD taking population is simply an assertion that is interesting.
And logical. To draw any conclusions about how a med effects the general population you need a randomized sample. Voluntary and random do not go together very well. This board draws people who do not do well on meds. It also has a history of, for some reason, pushing away many very knowlagable people. Lar and Cam were pushed away.
People are motivated to seek out info when things do not go well. Why should someone who does well on meds come to a place that is very negative
about meds ? Some other lists I am on have a nice mix of those doing well and those not doing so well.
Posted by Declan on September 29, 2006, at 20:00:54
In reply to Re: I signed the BAN EFFEXOR petition, posted by notfred on September 29, 2006, at 19:53:22
Well, I have to say I'm doing pretty well on tianeptine. It is helpful, I leave the house, volunteer, I talk to people. This wouldn't have been possible before. But I'm still here. Another anecdote.
Posted by Declan on September 29, 2006, at 20:03:58
In reply to Re: I signed the BAN EFFEXOR petition, posted by Declan on September 29, 2006, at 20:00:54
that tianeptine is not available here or approved.
Posted by Phillipa on September 29, 2006, at 20:25:26
In reply to Re: I signed the BAN EFFEXOR petition, posted by Declan on September 29, 2006, at 20:00:54
What type of volunteer work and how often. I need to do the same myself. Love Phillipa
Posted by Phillipa on September 29, 2006, at 20:26:40
In reply to I should add » Declan, posted by Declan on September 29, 2006, at 20:03:58
Declan what is it. You can e-mail it to me. Love Phillipa
Posted by SLS on September 29, 2006, at 20:52:47
In reply to Re: I signed the BAN EFFEXOR petition, posted by notfred on September 29, 2006, at 19:53:22
> Some other lists I am on have a nice mix of those doing well and those not doing so well.
Are you on actual email lists (I forget what you call those thinge) or on bulletin boards like this one? It sounds like you lead a very active cyberlife.
- Scott
Posted by SLS on September 29, 2006, at 21:27:04
In reply to Re: I signed the BAN EFFEXOR petition, posted by Declan on September 29, 2006, at 20:00:54
> Well, I have to say I'm doing pretty well on tianeptine. It is helpful, I leave the house, volunteer, I talk to people. This wouldn't have been possible before. But I'm still here. Another anecdote.
Don't fly away, then.
When you say tianeptine is helpful, about how far towards 100% are you?
What dosage are you at?
How long have you been taking it for?
What else are you taking?
People keep reminding me that this drug exists, but I keep getting distracted by other things.
If you aren't up to 100%, you might consider adding low-dose lithium or perhaps Buspar.
- Scott
Posted by Declan on September 29, 2006, at 21:45:27
In reply to Re: I signed the BAN EFFEXOR petition » Declan, posted by SLS on September 29, 2006, at 21:27:04
When you say tianeptine is helpful, about how far towards 100% are you?
This is real guesswork but from 30% to 60% (don't quote me).
Doseage? 3 or 4 tablets (12.5mg) per day
How long? Umm, maybe 3 months or a little longer.
What else? Valium 10mg/d or so.
I dunno about lithium or Buspar. Didn't like Buspar much.
My krebs cycle is very low at the glutarate level. Perhaps alpha ketoglutarate will help.
Sometimes lately I've actually been feeling quite nice (how about that). I am encouraged that tianeptine is banned in Singapore (no plans to visit).
Posted by SLS on September 29, 2006, at 22:04:18
In reply to Re: I signed the BAN EFFEXOR petition » SLS, posted by Declan on September 29, 2006, at 21:45:27
Hi Declan.
Thanks for the quick reply.
> Didn't like Buspar much.
That may not be insignificant. How did you react to it?
> My krebs cycle is very low at the glutarate level. Perhaps alpha ketoglutarate will help.
How do you go about figuring out something like that?
> Sometimes lately I've actually been feeling quite nice (how about that).
Well, I remember that it took a good 3 months for things to get real solid the one time I did respond well to medication. Maybe things are still cooking.
> I am encouraged that tianeptine is banned in Singapore (no plans to visit).
What's that all about?
- Scott
Posted by Declan on September 29, 2006, at 23:14:22
In reply to Re: I signed the BAN EFFEXOR petition » Declan, posted by SLS on September 29, 2006, at 22:04:18
The tests had to be done in the USA. You can see it (perhaps) at http://metramix.com Perhaps you might find it interesting because fatigue is so pronounced for you. Fatty acid metabolism, carbohydrate metabolism, energy production and other stuff. No doubt some bright spark will say that this is all unproven, but I (like to) think that only through an understanding of our own individual chemistries can we get safe and effective treatments, or somesuch.
The thing I liked about tianeptine was that I knew from the first dose that it would most likely suit me.
Buspar? Well, I have/had a benzo habit, so it seemed expensive and almost useless.
They'll ban anything in Singapore. I take it as a sign that the drug is worth taking.
Posted by Declan on September 29, 2006, at 23:17:02
In reply to Re: I signed the BAN EFFEXOR petition » SLS, posted by Declan on September 29, 2006, at 23:14:22
Maybe try http://www.metametrix.com
Posted by Racer on September 30, 2006, at 12:54:49
In reply to Re: Sorry... » Racer, posted by SLS on September 29, 2006, at 17:24:57
> If you had to do it again, how would you discontinue Effexor?
>
>
> - Scottlol Differently?
How I'd go about it now... First of all, I'd talk to my doctor at more length, and I'd schedule more visits to get through it. That's the first part. (I didn't have insurance when I did it last time, so only saw the doctor when I had to -- twice a year, or less.)
Ironically, I think I'd taper faster than I did, too. When I stopped it four years ago, I took 8 months to taper off 225mg. That probably wasn't necessary -- I can't tell you why I did it so slowly, though. Can't really remember.
I'd also add in low dose Prozac, at least towards the end. My former pdoc offered it, but I just wanted OFF the dang drugs at that point, so wasn't really interested in adding Prozac back in. (I had been on a combo of the two, and stopped the Prozac first, since that was easier.) I'd probably also do smaller steps -- using 37.5mg capsules, rather than dropping 75mg at a time.
For all that it didn't do for me, though, let me say again: Effexor was far better for me than the other drugs I'd been on at that time. It wasn't earth-shaking as an antidepressant, but it was far friendlier in terms of how it made me feel. There wasn't that horrible feeling of wading through gelatin that I had on Paxil, for instance, nor the jumpy sleeplessness on nortriptyline.
Anyway, that's my thinking on how I'd taper if I had to do it again...
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