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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 48 to 72 of 85. Go back in thread:
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...
Posted by tizza on September 30, 2006, at 16:05:20
In reply to Re: I signed the BAN EFFEXOR petition » tizza, posted by SLS on September 29, 2006, at 6:04:04
I tapered from 150mg to 75mg for a month, then I opened up my 75mg caps and took a few out pellets everyday for 6 weeks until I was down to nothing. I felt totally fine during this process, but after my last cap with about 6 pellets in it I totally lost my mind. I was bed ridden for 2 weeks, scattered for another 2 weeks and then started feeling better after about 6 weeks. My short term memory is gone and it has been 1 year now since I took an AD. Thanks for asking scott, I used benadry for the vertigo which helped a bit but if I had of known about the prozac thing I would have done it for sure. You're right too many doctors are clueless about this and need to get informed about it NOW. Thanks again for asking. Paul
Posted by tizza on September 30, 2006, at 16:14:26
In reply to Re: I signed the BAN EFFEXOR petition, posted by notfred on September 29, 2006, at 7:59:59
> >
> > Notfred you were one of the lucky ones, IMHO
>
> I have worked very hard at this, I do not think luck is part of this.
>
> Telling your story is fine. Demonizing Effexor, I feel, goes too far.
>
>
I have the right to demonise this drug because as I HAVE SAID before it made my life hell, please don't discredit my story again. It is very dismissive and it hurts me that you would do this. I want to tell my experience with this drug and you keep trying to disreguard what I went through. Please notfred, I find it very hard to deal with the fact that you keep trying to keep me quite about this and I find that disrespectful.
Posted by SLS on September 30, 2006, at 16:54:31
In reply to Re: I signed the BAN EFFEXOR petition » SLS, posted by tizza on September 30, 2006, at 16:05:20
> I tapered from 150mg to 75mg for a month, then I opened up my 75mg caps and took a few out pellets everyday for 6 weeks until I was down to nothing. I felt totally fine during this process, but after my last cap with about 6 pellets in it I totally lost my mind. I was bed ridden for 2 weeks, scattered for another 2 weeks and then started feeling better after about 6 weeks. My short term memory is gone and it has been 1 year now since I took an AD. Thanks for asking scott, I used benadry for the vertigo which helped a bit but if I had of known about the prozac thing I would have done it for sure. You're right too many doctors are clueless about this and need to get informed about it NOW. Thanks again for asking. Paul
That is absolutely horrible. You know, I hear stories like yours, and they are almost too brutal to believe. However, I have come to accept these stories. Either receptor densities are not reverting back to pretreatment levels or there is a kindling effect going on somewhere. 20/20 hindsight, but using a flexible-dosing strategy at the end would have been interesting, if not humane. Prozac, too.Sorry.
- Scott
Posted by tizza on September 30, 2006, at 16:56:42
In reply to Re: Sorry... » SLS, posted by Racer on September 29, 2006, at 17:14:37
> > > and withdrawal was hell.
> >
> > How do you account for that?
> >
> >
> > - Scott
>
> I 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...Racer I agree with you on that, it works well for my sister but not for me, I wish it did but it didn't. As we all know every drug works differently for everyone but effexor was toxic to my system. I have lost my memory and I don't think it's ever going to come back and I blame effexor for this. It's been a year now and things haven't gotten better in the memory stakes, but what most people out there don't realise is that when you have to come off it, you don't know what's going to happen.
notfred had a reasonably smooth discontinuation which is great, but not many people do and I think that there are so many people out there, that have stopped this drug and have had no idea that is why they got so sick. There are more reports on the internet about stopping effexor than any other psycho-active drug.
My question is simple, why is that? So many people don't realise what the hell is happening to them because of a lack of information from their doctors and drug companies. I read heaps of effexor horror stories before I started taking it but I thought if it's going to help me I'll give it a try, it wasn't until I stopped it that I realised that it was too late, the damage was already done. I thought my short term memory would come back but it hasn't and it been a year now.
I know it works for some people, but wait till they have to stop it. Thanks for your posts, they will help people realise what is happening to them if they miss a dose or can't afford to buy it, which is terrible, I'm sorry that you had to go through that. Paul
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