![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 10 of 10. This is the beginning of the thread.
Posted by NancyDenver on June 23, 2006, at 0:10:56
I've done alot of research since I first discovered I was suffering from effexor discontinuation syndrome. I had to diagnose myself (thank God for the internet) on April 29, 2006. I started taking effexor in 1995. I reduced gradually down from 150mg over a period of 4 months (Jan-Apr 2006). I had no idea what was happening to me! In March, I became so sick, I had to quit working. It's been 8 weeks since my last dose (April 27) and I'm still too sick to work. I've seen no improvement at all. This is not your grandmother's withdrawal people--this is something new entirely. With heroin withdrawal, for example, you go through a week of hell and you're free--and it's the same for everyone. EDS (effexor discontinuation syndrome)is "individual." Some go off with no problem, and some--no one knows what percentage--can't even reduce their dose without a severe, debilitating, and sometimes fatal reactions (see serotonin syndrome). The only proven cure for EDS is keep taking the drug. But what about those suffering severe side effects? They are stuck between a rock and a hard place as they say. It appears, I am one of the unlucky ones. I suffered a little known and easily misdiagnosed side effect: very heavy, prolonged uterine bleeding (up to 6 weeks at a time).
EDS (effexor discontinuation syndrome)is difficult to understand because it's "individual." Some people are able to reduce their dose and discontinue with no problems, but some suffer unbearable, debilitating, and potentially fatal reactions. Reducing "gradually" as Wyeth and many doctors recommend, is not a scientifically proven method for avoiding severe EDS. That some can reduce gradually with no symptoms does not prove all can. In Wyeth's recent effexor label (updated June 2006), they claim that for most, EDS is "self-limiting," meaning it will eventually go away, but for others it is "serious"--what does this mean? If it's not self-limiting, then it's permanent. (Unfortunatley, it will be years before permanent damage can be proven.) Horrible isn't it, but not unprecedented. It has happened before to patients on anti-psychotics in the the 70s--PERMANENT and debilitating brain damage from an FDA approved class of drugs. I'm afraid I may have suffered permanent brain damage. What concerns me, is that I continue to be sick 2 months after taking my last tiny dose and that I have no improvement in my symptoms. EDS boggles the mind because it challenges established ideas about addiction and withdrawal. At least with heroin addiction, you go through cold turkey and a week of hell, then you are free. EDS is something all together different. Doctors are in denial. I haven't found a doctor yet who has even heard of withdrawal symptoms from taking antidepressants--(apparently, they are just too busy to read the 47 page effexor drug label). I don't blame the doctors as much as the manufacturer, Wyeth. For years, they denied EDS existed until they were forced to include it in the drug label (in 2004?). Wyeth has suppressed negative studies, stalling as long as they can so they can continue to make the big bucks on the second best selling antidepressant in the world. Did you know that babies are being born addicted to effexor? Again, you have only to read Wyeth's recent label update in which it reports "complications" "arising immediately upon delivery" which are "possibly" caused by "a drug discontinuation syndrome" (p 24) These babies are suffering from EDS! Imagine the poor mother who tries to stop taking the drug during pregnancy, but can't because of the severe withdrawal symptoms--which are often misdiagnosed as relapse. People get upset about the relatively small number of babies born addicted to crack--this is worse!! Addicted by prescription with FDA approval, and in the case of these poor babies, there is no "informed" consent. They have no words to write their suffering only their "constant crying" (all quotes are taken directly from Wyeth's drug insert). I cried too when I read this, and I have promised myself, I will not rest until EVERYONE knows about this the same way everyone knows about the horrors of crack babies. I'm on a mission from God now. Thank God, I can still sit in front of the computer if I don't move my head and eyes. I'm going to write my congresswoman, Diana DeGette, and I hope you will too. (Sen Charles Grassley of Iowa is another one who cares.) I was so happy to see DeGette giving it to the FDA, threatening to pass a law banning antidepressant use for anyone under 18 (England has already done this.) Maybe when she learns about effexor addicted babies, she will act to ban this drug.
Posted by slipknot on June 23, 2006, at 0:10:56
In reply to Effexor withdrawal, posted by NancyDenver on June 19, 2006, at 23:12:20
I stopped effexor after 3 years at 300mg /day. I had to go cold turkey for reasons I wont get into. Never-the-less, my pdoc has stopped prescribing this stuff simply because of the discontinuation syndrome. More it seems are following - the body of evidence is just too great now.
Regarding your situation, all I can say is hang on. It DOES go away, and I dont buy into the "permanent mental side effects" discussion. Most people I have discussed this with have found that the "shocks" can last up to 3 months after discontinuation. Mine didnt last that long and I wonder sometimes if its because I went cold turkey. Either way, there are medications that can be taken to mitigate the effects - if I recall, many SSRI's can be used to lessen the severity.Anyway, good luck. It will pass, unfortunetly patience is your only option.
Posted by NancyDenver on June 23, 2006, at 0:10:56
In reply to Re: Effexor withdrawal, posted by slipknot on June 21, 2006, at 7:28:30
I'm so glad to hear your doctor stopped prescribing Effexor because of the severe discontinuation syndrome. I understand your reluctance to "buy into" the discussion of permanent damage, but I have found some information to support the possibility. See "PANES: Persistent adverse neurological effects following SSRI discontinuation." by Dr Ben Green. (http://www.priory.com/psych/panes.htm). Another article" "Venlafaxine--long term adverse effects" by Richard Lathe (http://www.priory.com/psych/venlafax.htm) Both doctors are British--for some reason the Brits are way ahead of the Americans on this, but I also found Harvard Dr Glenmullen (Prozac Nation) admitting in an interview the possibility of permanent brain damage from SSRIs. According to Dr Green, there seems to be a similarity here with the "the effects seen after benzodiazepine discontinuation (Ashton 1987)." Of course, doctors will be reluctant to admit that a drug they have prescribed for years may be maiming people for life. It's important to rememember, effexor discontinuation syndrome is "individual" (a word used in Wyeth's British label). Just because you didn't experience persistent neurological events, doesn't mean others aren't. Even Wyeth in their most recent drug label (June 2006) says in most cases discontinuation effects are "self-limiting"--meaning they will go away on their own, but in some cases they are "serious"--what does this mean? If they are not self-limiting, then permanence is implied. Unfortunately there are no controlled studies of EDS, and if we just rely on anecdotal evidence, we won't know for years. It took doctors 20 years to admit the permanent neurological damage caused by anti-psychotics in the 70s (see tardive dyskenesia). The discussion continues. You need to have an open mind if you are to understand EDS.
Posted by linkadge on June 23, 2006, at 0:10:56
In reply to PANES-persistent adverse neurological events, posted by NancyDenver on June 21, 2006, at 10:35:08
I believe in the possibility of SSRI induced neurological dammage, because I am living it!!
Anyhow you are right, could you imagine being born into this world only to suffer effexor withdrawl? What a sh*tty way to enter the world.
Effexor withdrawl can scar an adult for life. It is likely to do much more psychological dammage to a developing brain.
Early childhood tramatic injuries can often cause permanant changes in the way the HPA axis
functions. A child born to effexor would have a high likelyhood of developing some type of psychiatric disorder in my opinion.Linkadge
Posted by Bonnie_CA on June 23, 2006, at 0:10:57
In reply to Re: PANES-persistent adverse neurological events, posted by linkadge on June 21, 2006, at 15:28:27
> Anyhow you are right, could you imagine being born into this world only to suffer effexor withdrawl? What a sh*tty way to enter the world.
>
> Effexor withdrawl can scar an adult for life. It is likely to do much more psychological dammage to a developing brain.
>Effexor withdrawel was so awful, I can't imagine being born into the world feeling that way. I wanted to die... can you imagine a newborn somehow wanting to die? SIDS?
I wonder about permanent damage. I only took it for three months, but I wonder if it is damage from the Effexor that is causing me to have so many problems on Prozac. On the other hand, it could just be that Prozac isn't the right one.
It seems like it takes physical (easily seen) birth defects to cause the FDA and other countries' drug administrations to disapprove of a drug. (Thalydimide, anyone? I still see armless people around.) The problem with drugs like Effexor is that there ARE people that are very successful and happy with the drug, so they highlight those cases and ignore the cries of the people (and babies) who have EDS. I just sent the rest of my old prescription to someone who is very happy with Effexor. I told her it was pure poison to me. What I wonder is with those cases from the 70s with the antipsychotics, were there people that were successful and pleased with their results? Also, does anyone remember when they pulled quinine from over the counter, just because some people died? My dad took quinine a lot for leg cramps, and when they did that, we didn't have insurance (back then), so it caused real problems (he had to drink A LOT of tonic water). Why does the FDA do that? Oh wait, don't answer, I think I know... no one was giving the FDA kickbacks for keeping quinine OTC. Right. I wonder how much Wyeth is giving the FDA to keep only the positive results alive?
The FDA should be disbanded and reorganized. But, I guess at the end of the day, it's still a GOVERNMENT agency. I can't expect anything less from the government. :-\
Wow, sorry I just ranted a lot, but I feel very strongly about Effexor, since I had a hellish time getting off of it. (Worse than Paxil by far.)
-Bonnie
Posted by linkadge on June 23, 2006, at 0:10:57
In reply to Re: PANES-persistent adverse neurological events, posted by Bonnie_CA on June 21, 2006, at 15:56:34
I wonder if the drug companies have employees who visit sites like this to get information about how people are reacting to many of these medications.
I wish they would.
Linkadge
Posted by Bonnie_CA on June 23, 2006, at 0:10:57
In reply to Re: PANES-persistent adverse neurological events, posted by linkadge on June 21, 2006, at 19:05:12
> I wonder if the drug companies have employees who visit sites like this to get information about how people are reacting to many of these medications.
>
> I wish they would.
>
>
> LinkadgeOf course they don't, then they might feel bad about all the money they're making. Why would they want the bad news here when they suppress their own negative findings? :-\
-Bonnie
Posted by musky on June 23, 2006, at 23:22:58
In reply to PANES-persistent adverse neurological events, posted by NancyDenver on June 21, 2006, at 10:35:08
>
interesting article.. thanks for posting.. I always feared this.. i normally am not on this thread but just glanced at it.. I have been on Remeron which affects even more pathways than effexor, etc.. I worry that I too may have long lasting Panes.. I have been off 1month and still have that agitation... scalp twitching that is described "fluttering sensation" in one article, and off and on muscle tension in face, jaw. scrunching etc, and disconnected feeling..
they need to ban all these drugs!! i just hope that I fully recover.. been on it 3yrs. with no permanent damage..damn those drug companies and the docs who push stuff under the rug.. they never tell you the risks when you take it .. figures...
Musky
I'm so glad to hear your doctor stopped prescribing Effexor because of the severe discontinuation syndrome. I understand your reluctance to "buy into" the discussion of permanent damage, but I have found some information to support the possibility. See "PANES: Persistent adverse neurological effects following SSRI discontinuation." by Dr Ben Green. (http://www.priory.com/psych/panes.htm). Another article" "Venlafaxine--long term adverse effects" by Richard Lathe (http://www.priory.com/psych/venlafax.htm) Both doctors are British--for some reason the Brits are way ahead of the Americans on this, but I also found Harvard Dr Glenmullen (Prozac Nation) admitting in an interview the possibility of permanent brain damage from SSRIs. According to Dr Green, there seems to be a similarity here with the "the effects seen after benzodiazepine discontinuation (Ashton 1987)." Of course, doctors will be reluctant to admit that a drug they have prescribed for years may be maiming people for life. It's important to rememember, effexor discontinuation syndrome is "individual" (a word used in Wyeth's British label). Just because you didn't experience persistent neurological events, doesn't mean others aren't. Even Wyeth in their most recent drug label (June 2006) says in most cases discontinuation effects are "self-limiting"--meaning they will go away on their own, but in some cases they are "serious"--what does this mean? If they are not self-limiting, then permanence is implied. Unfortunately there are no controlled studies of EDS, and if we just rely on anecdotal evidence, we won't know for years. It took doctors 20 years to admit the permanent neurological damage caused by anti-psychotics in the 70s (see tardive dyskenesia). The discussion continues. You need to have an open mind if you are to understand EDS.
Posted by Poet on June 28, 2006, at 13:53:16
In reply to Effexor withdrawal, posted by NancyDenver on June 19, 2006, at 23:12:20
Hi Nancydenver,
It took me a full year to taper down from 300mg to 75mg of Effexor XR. I see pdoc in two months to see if I can go down to 37.5 and then hopefully completely off.
It was another pdoc who had me at way too high of a dose. Switching pdocs did a service for me as the old one didn't think I should taper down at all. I think he was wrong, and I'm glad new pdoc seems to agree. She also knows how long it takes to get me off of it.
So far I've been pretty lucky with withdrawal effects, but until last week I didn't know that angry outbursts was one of them. I wish I had known when I blew up at work and got called in on the carpet. It's too late to say it's meds withdrawals even if I want to open up the I'm on pysch meds can of worms.
Good luck getting of it. You'll can do it.
Poet
Posted by gingerlyn67 on July 4, 2006, at 15:06:49
In reply to Re: Effexor withdrawal » NancyDenver, posted by Poet on June 28, 2006, at 13:53:16
I sometimes wished I could have opened up the can of worms to several of my friends and neighbors and told them why I was acting so crazy, but, people will turn and twist everything to make the situation seem so much worse. I have lost several friends due to this medication. Most of my neighbors avoid me like the plague and won't let their kids come up to play with my daughter. It's so sad too. If they only knew and understood, then, they wouldn't treat me and my kids like freaks.
I was also called a "toxic" friend. Thanks Effexor! You've made my life a living nightmare in my own neighborhood. I am even embarassed to go for walks now. I leave and go elsewhere.
This is the end of the thread.
Psycho-Babble Withdrawal | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
Copyright 2006-17 Robert Hsiung.
Owned and operated by Dr. Bob LLC and not the University of Chicago.