![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 3 to 27 of 32. Go back in thread:
Posted by Phillipa on February 16, 2009, at 12:14:04
In reply to 2-1/2 years later have permanent withdrawal sympto, posted by chinaroses on February 16, 2009, at 11:57:23
I'm so sorry to hear this that's devastating to you. Does your doctor offer any explanation? I've know a few who also took effexor some with wellbutrin and got off. I know a teacher that took it for a short time got off and just stayed with xanax she says she will never take an ad again as the withdrawal even after a short time was horrible. But maybe the short time she was on it is why no permanent damage I don't know. I'm so sorry. hence still on a low dose of an SSRI with benzos as for me anxiety leads to depression . Phillipa
Posted by fayeroe on February 16, 2009, at 12:15:00
In reply to 2-1/2 years later have permanent withdrawal sympto, posted by chinaroses on February 16, 2009, at 11:57:23
I imagine if the people who have had trouble on Efexxor were laid head to toe...the line would reach around the world. :-)
Getting off of Efexxor is, indeed, very difficult for some people. I had trouble and it took a very long time to get "clean".
How long did you take Fluoxetine? Frequently it will take awhile for a med to work properly. I would even throw a guess out there that it might take longer having been on Effexor so long.
Pat
Posted by chinaroses on February 16, 2009, at 13:03:08
In reply to Re: 2-1/2 years later have permanent withdrawal sympto » chinaroses, posted by fayeroe on February 16, 2009, at 12:15:00
Thanks to both who replied. It is a comfort.
Unfortunately my doctor(s) don't say much. The only one who believes that I could still having symptoms from Effexor is the Alternative MD (he IS a doctor) who helped guide me though the withdrawal. He provided the reduced prescriptions, and the supplements we've tried. (He also provided the Fluoxetine prescription for that experiment.) My Primary Care, the two Neurologists, the Psychiatrist, the Chiropractors, the Chiropractic Neurologist, the Physical Therapists, the Vestibular Rehab Specialist, etc... they pretty much shake their heads and say "I don't think it could be the Effexor after all this time. I think it might be your neck/allergies/diet/sleeping patterns/reflux..." (And I have pursued these also, from allergy shots to sleep apnea testing to reflux meds to dietary changes.) When I tell them the symptoms are just like missing a dose of Effexor, they shrug, and say, "Well, it could be, I suppose, but that would be unusual" and that's all I get.
I was only on the Fluoxetine for less than a month, 10 mg for a week, then up to 20. This was, I think, about a year or a little more after I finished taking Effexor. Symptoms actually seemed to get worse almost immediately. Because of that, I chickened out after a few weeks. (Guess I was afraid--and rightly so, I think--that the doctors and pharmaceutical companies really don't understand what what they're messing with, especially when things go wrong, like it did with me. And when someone is messing with MY BRAIN, I'm just not tolerant of experimentation (ie. the Fluoxetine).
I wish I would have known/realized how "experimental" anti-depressants are, as a whole, before I started taking them. These days I don't take any prescription, or even supplement, before doing research on the Internet and deciding for myself whether the risk/reward balance sounds like it is worth it. Unfortunately, the Internet, when I started Effexor in the mid/late 1990's, just wasn't the resource that it is now... Back then, you just had to trust the doctors, drug manufacturers and the FDA...
Posted by garnet71 on February 16, 2009, at 13:57:32
In reply to Re: 2-1/2 years later have permanent withdrawal sy, posted by chinaroses on February 16, 2009, at 13:03:08
""I don't think it could be the Effexor after all this time. I think it might be your neck/allergies/diet/sleeping patterns/reflux..." (And I have pursued these also, from allergy shots to sleep apnea testing to reflux meds to dietary changes.)"
Wow-you really have been through it all in terms of meds and doctors! That seems to be a rather holistic point of view there. What did your sleep apnea testing conclude?
When I was on Effexor, I did a sleep study that revealed I had central sleep apnea, which is the kind of apnea where your mind 'forgets' to breathe (not to be confused with obstructive sleep apnea). I will probably never know whether or not Effexor was the cause, and I'll probably never have the chance to do another sleep study to see whether or not I still have the apnea; not anytime soon anyway.
Just looking at the 'vivid dream' side effect alone, the xxRIs really do mess up your normal sleep patterns. Beauberry, a member here, posted above regarding the importance of sleep.
If your issues are not sleep related, why the determination to find out whether or not Effexor has caused your health problems? Unfortuantely, the Western health care system is designed to treat and manage symptoms, rather than find cures. I've concuded that for me and many others, we just have to take the risks of undesirable side effects in order to strive to be at our most productive state of functioning, our best. I'm afraid there's not going to be a lot of research out there trying to find whether or not xxRIs cause permanent damage--studies are expensive--and with the economy as it is now, funding is probably going to be more scarce, although Obama's admin. wants to allocate more for R&D. Imagine all the lawsuits that would follow any strong findings. From a political view, drug company stock effects everyone either directly or indirectly - 401ks, pensions, and capital investments necessary for businesses and institutions to thrive. If there were class action lawsuits about SSRIs (the 2nd most highly prescribed drugs in the US, or has this ranking changed??), I would guess the courts would decide for the drug companies--any other decision could have huge consequences for our economy that is too fragile as it is. Our economy has become our #1 national security risk--it just passed up terrorism, which held that slot since 9/11. I'm waiting for the day where our health, for the U.S., is on the list of top national security risks; I have a little theory of my own on that.
It's unfortunate so little is known about brain chemistry, and that our medicine - both in theory and clinical practice - is partitioned.
Oh-you didn't mention an endocronologist--did you get your hormones tested? Hormones guide all your bodily functions, not sure if such doctors as endo-psychiatrists exist; maybe they should.
Side note: I once read an article--many years ago an before the internet was used--about a man who didn't sleep for something like 20 plus years. It was a short article in a newspaper; it just said something like the only man ever known to not sleep for xx years has died at age xxx. It didn't say how or why or what this man did. I have googled and googled, and could never find out more about this. I think the unknown world of sleep and dreaming is fascinating. And underrated.
Posted by SLS on February 16, 2009, at 15:15:15
In reply to 2-1/2 years later have permanent withdrawal sympto, posted by chinaroses on February 16, 2009, at 11:57:23
It would be an interesting experiment to take Ativan for a few days to see if your symptoms disappear. If they do, you might need an anticonvulsant to help stabilize hyperexcitable tracts in the brain that a prolonged exposure to drug withdrawal may have produced. The prolonged withdrawal may have had a kindling effect.
This suggestion is in accordance with a personal theory of mine. You might not find anything on the Internet to corroborate the theory except for a few abstracts that indicate anticonvulsants can help mitigate the intensity of withdrawal syndromes.
Good luck.
- Scott
Posted by chinaroses on February 16, 2009, at 16:07:47
In reply to Re: 2-1/2 years later have permanent withdrawal sy » chinaroses, posted by garnet71 on February 16, 2009, at 13:57:32
garnet71, Your fascination with sleep matches my own... especially as I miss the lucid (and somewhat controllable) flying/power dreams I had up until the late 1990s early 2000s...! I don't know if Effexor contributed to their slow die-off, but I miss them.
My sleep apnea test was negative for both types. I sleep fairly well now (after years of misery including RLS), thanks to the alternative doc who put me on high doses of Magnesium Lactate. (I'm still a night owl, but now when I go to bed, I fall asleep within 20 minutes or so (no RSL) and usually wake only once or twice, briefly.) I HAVE put a lot of effort towards the holistic approach, as I became more and more leery of drugs...and because Western medicine continues to shrug, I haven't had many other choices offered to me. (I've paid for more dang physical therapy than I care to think about. And I have no respect whatsoever for the neurologist who was convinced it was a neck problem and was ready to shoot cortisone into my neck without doing any tests first--not even Xrays.)
I did get the hormones tested. I had low adrenal function (adrenal fatigue); we are addressing that with supplements and dietary/lifestyle changes--successfully, it appears, as I used to have debilitating fatigue. The fact that the symptoms are so constant leads me to consider that it is not related to diet/sleep/hormones, etc. You'd think I'd see more fluctuation if that was the case; rather, I think something fundamental has been altered. (Yes, someone did an MRI and EEG too. No tumors or other weirdnesses.) The alternative approach has found some solutions for me; but has been unable to help me with the continued post-Effexor symptoms.
Yeah, I have pretty much tried everything I could think of. (Including acupuncture and hypnotism). You should see my medical bills for the last few years...
Regarding your comments on lawsuits, have you seen the Effexor Petition on line? Nearly 20,000 signatures so far...The main point of this site's home page is to point out that we all understand prescription meds involve some risk of adverse results; however, neither the medical community nor the public realize the extent of the problem. The risks have not been adequately communicated. Certainly no information was given to me about withdrawal issues. I remember asking the psychiatrist at the time: "Is this safe?" "It's very safe" was the reply... and he probably did have 100% confidence in his answer.
Posted by chinaroses on February 16, 2009, at 16:14:45
In reply to Re: 2-1/2 years later have permanent withdrawal sympto » chinaroses, posted by SLS on February 16, 2009, at 15:15:15
SLS: Hmmm. Ativan, is that Lorazapam? I had a prescription for that once for a high-anxiety plane ride situation. I still have a couple left. I could try it for a couple nights, I guess...although the thought makes me uneasy...
How did you come about formulating your personal theory that anti-convulsants may help with SSRI withdrawal?
Posted by SLS on February 16, 2009, at 16:29:38
In reply to Re: 2-1/2 years later have permanent withdrawal sy, posted by chinaroses on February 16, 2009, at 16:14:45
> SLS: Hmmm. Ativan, is that Lorazapam? I had a prescription for that once for a high-anxiety plane ride situation. I still have a couple left. I could try it for a couple nights, I guess...although the thought makes me uneasy...
>
> How did you come about formulating your personal theory that anti-convulsants may help with SSRI withdrawal?It comes from an understanding of kindling theory and the supposition that the symptoms of withdrawal come from the hyperexcitability of neurons along the pathways that serotonin normally modulates (inhibits).
Check out my reposts at the bottom of the Withdrawal board.
I understand your uneasiness of wanting to introduce another drug to your system. Ativan (lorazepam) for two or three days shouldn't produce tolerance or withdrawal, although this would be an interesting set of observations in an unbalanced system like yours. You might have your answers after a single dose. You could just try a single dose and report what happens.
- Scott
Posted by SLS on February 16, 2009, at 16:36:36
In reply to Re: 2-1/2 years later have permanent withdrawal sy » chinaroses, posted by SLS on February 16, 2009, at 16:29:38
Hi Chinaroses
Just a thought.
If you were to take Ativan at night, you might sleep through the window of therapeutic effect. I think you might want to try taking a single dose during the day so that you can watch carefully what happens. Maybe you can do this on a day off when you have nothing better to do but to relax.
If you decide not to try the Ativan, I won't take it personally.
:-)
- Scott
Posted by Jim45 on February 16, 2009, at 18:05:39
In reply to 2-1/2 years later have permanent withdrawal sympto, posted by chinaroses on February 16, 2009, at 11:57:23
DEAR Chinaroses.
Feelin for ya.
Was on the stuff for 5-6 years and when I had to suddenly stop, I went through hell I wouldn't wish on my worst enemy.
Tried to stop after 2 years on it, but it was so bad that instead I kept taking it. Doc upped the dose because I'd acclimated to it and it had stopped helping. 2 years after that I acclimated to the higher dose. REALLY couldn't stop then though. Nausea, vomiting, etc. was just too much to take. Kept taking the same dose to prevent withdrawal though, but was just miserable daily. Got suboxone and then selegiline added to my meds to compensate, but there was something the FXR - and possibly situational stuff - had done to my brain. I'll stop there. Getting carried away :)
The worst part stopping the 150-300 mg daily FXR was that the incredible misery, while it SLOWLY got better, was still there after 2 YEARS.
I finally gave up on waiting to get better and resumed taking low doses - 1/2 to 1 37.5 mg tablet - of Effexor. That helped a LITTLE but I had to supplement it with other things to get anywhere NEAR back to normal.
Hang in there, and thanks for spreading the word about Effexor. I wish someone would've warned me about it. Like you, I try to warn folks about it.
I've HEARD cymbalta does the same thing.Wish someone out there would research the stuff. I have a hunch it's acting on endorphin/endokelphin(?) receptors and/or other receptors that aren't mentioned in manufacturers drug data and that it's not FDA approved for.
Best wishes.
Jim
Posted by SLS on February 16, 2009, at 18:15:45
In reply to Re: 2-1/2 years later have permanent withdrawal sy, posted by Jim45 on February 16, 2009, at 18:05:39
What types of supplements do you use to?
How do you benefit from them?
Thanks.
- Scott
Posted by Connor on February 17, 2009, at 0:43:26
In reply to 2-1/2 years later have permanent withdrawal sympto, posted by chinaroses on February 16, 2009, at 11:57:23
I don't have any answers. But what I can tell you is that you are just another victim in a long line of people who feel that ssri's have screwed them up for the longterm. Of course no doctor will acknowledge what these drugs are capable of..
Posted by Jim45 on February 17, 2009, at 14:41:21
In reply to Re: 2-1/2 years later have permanent withdrawal sy » Jim45, posted by SLS on February 16, 2009, at 18:15:45
Dear SLS,
I'd hate to say. Cut WAY down because of BP and other problems with the stuff.
Gonna try Clonodine with them, and whenever I find a safe and effective regimen, I'll let others know.
It's low-dose Effexor, Selegiline and Phenylethylamine, but it's DANGEROUS. I tell others to avoid it. I'll be a guinea pig.
G'luck!
Jim
Posted by 49er on February 17, 2009, at 17:46:33
In reply to Re: 2-1/2 years later have permanent withdrawal sympto » chinaroses, posted by SLS on February 16, 2009, at 15:15:15
> It would be an interesting experiment to take Ativan for a few days to see if your symptoms disappear. If they do, you might need an anticonvulsant to help stabilize hyperexcitable tracts in the brain that a prolonged exposure to drug withdrawal may have produced. The prolonged withdrawal may have had a kindling effect.
>
> This suggestion is in accordance with a personal theory of mine. You might not find anything on the Internet to corroborate the theory except for a few abstracts that indicate anticonvulsants can help mitigate the intensity of withdrawal syndromes.
>
> Good luck.
>
>
> - Scott
>
>
Scott,With all due respect, adding drugs compounds the withdrawal problems and is essentially medicating side effect after side effect. Then you have the problem of withdrawing from the drugs that have been added. So instead of dealing with withdrawal symptoms from 1 drug, you're now dealing with WD symptoms from the drug you added if you intend to get off of it.
I realize sometimes you have no choice. In order for me to sleep due to tapering Doxepin (a sleep med) and having rebound insomnia, I have to take a herbal supplement. I am concerned that down the road, it could be hard to get off of it.
But generally, adding a drug to deal with the problems caused by another drug is playing with fire.
For most people, time is the solution and letting the brain get back to homeostasis.
Finally, the key is to taper slowly. I know people are tired of me saying this but that hasn't stopped me:)) For antidepressants, taper 10% of the current dose every 3 to 6 weeks. For drugs like cymbalta or effexor that have short half lives, it is better to taper at 5%,
Too long of a taper you say? If you taper too fast, you will most likely add years of suffering so actually, you're not saving any time.
Posted by 49er on February 17, 2009, at 17:49:57
In reply to 2-1/2 years later have permanent withdrawal sympto, posted by chinaroses on February 16, 2009, at 11:57:23
> I was on Effexor 37.5 for nearly 10 years. I originally went on it because of a difficult job situation. I stayed on it a lot longer that I needed to because of the severe withdrawal symptoms every time I tried to quit. It took me 6 months, in autumn of 2006, to wean off, very slowly, with the help of "theroadback.org". Unfortunately, despite moving slowing and taking all precautions I could, I seem to be permanently damaged. The heavy head pressure, eye/vision issues and balance problems are there, 24/7, 365. It is the weird feeling you get when you miss a dose of Effexor, but it never leaves. I have tried fish oil and whey protein isolate, St John's wort, Cysreplete/Neuroreplete and even, briefly, Fluoxetine. The symptoms show no sign of leaving; they are there whether I am dealing with a hectic day at work or sleeping under the stars in Idaho. If anyone has any ideas, great... but I think I'm pretty much out of luck. It has had a dramatic impact on my life. I used to be very active, but now I sit around a lot because any sort of movement, especially of the head, is so uncomfortable.
>
> Guess I just have to say that I feel this drug is dangerous, and it is possible to be permanently damaged from it, even a low does.Hi,
I have tapered off of a cocktail of 4 meds and am down to 1. These meds left me gifts of a hearing loss and cognitive issues. You have my complete sympathy.
I never tried the Road Back but many people on the Paxil Progress Boards had a bad experience.
Unfortunately, I have no suggestions but wanted to tell you that I definitely understand how you feel.
Posted by garnet71 on February 17, 2009, at 20:31:31
In reply to Re: 2-1/2 years later have permanent withdrawal sy, posted by chinaroses on February 16, 2009, at 16:07:47
Hi Chinarose,
Hey I know all about lucid dreams; have been having them for years. You might be happy to hear that post-Effexor, I've still had them frequently. To me, they are more of an annoyance. My dreams are usually very boring, especially the lucid ones. Every once in a while, though, I'll have some very fascinating types of dreams that leave long-lasting impressions on me. However, I used to be able to get into a state of deep meditation where my heart and breathing would be so slow they would almost stop. I haven't been able to do that since I started on psych drugs, which corresponded with a really bad relationship experience; it could be just a coincidence.
Thats great to hear you could take magnesium for your RLS rather than some whose doctors put them on Topomax. So there, something's looking up for you. Another thing going for you is that you have the financial ability to try all the treatments, especially the alternative ones that most insurance policies don't cover.
No, I haven't bothered to look into the lawsuits, but I already made my point about that (national security/politics). But yes, I understand that some PDocs don't tell you ANYTHING about the meds they are prescribing; it's happened to me probably 90% of the time. That is plain wrong. I'm not sure why it would be so difficult for PDocs to have files in their desk drawer/cabinet --one for each med--of copies of summary sheets providing general information for each drug and give the respective sheet to the patient to look at while going over the content with them.
You should read Bleauberry's post, below, about Lyme disease since you mentioned your symptoms have been consistent despite your treatment. Actually, more of us, I think, should pay attention to that possibility.
Posted by SLS on February 18, 2009, at 6:37:22
In reply to Re: 2-1/2 years later have permanent withdrawal sympto, posted by 49er on February 17, 2009, at 17:46:33
Hi 49er
> Scott,
>
> With all due respect, adding drugs compounds the withdrawal problems and is essentially medicating side effect after side effect.I guess we must disagree on this one. It is good to see both sides of an issue.
Not that there is anything wrong with medicating a side effect, but many people use remedial pharmacological measures to ameliorating the intensity of a withdrawal syndrome. Prozac can help with most cases of SRI withdrawal. My guess is that magnesium might help as well. If it can make life more tolerable and the person more functional, why not opt for remediation? Using your taper schedule would actually take longer and possibly allow for more withdrawal symptoms than crossing over to Prozac and allowing its week-long half-life serve as a gradual taper. Using an anticonvulsant might be the way to go if kindling is indeed involved in the precipitation and persistence of the withdrawal syndrome. There is usually no withdrawal syndrome at all from coming off of an anticonvulsant if it is tapered, which can sometimes be accomplished within 2 weeks.
> Then you have the problem of withdrawing from the drugs that have been added.
Not so. You don't have to "withdraw" from these other drugs, just discontinue them appropriately so as to prevent withdrawal.
> So instead of dealing with withdrawal symptoms from 1 drug, you're now dealing with WD symptoms from the drug you added if you intend to get off of it.
Can you provide an example? You might have some worth noting.
> I realize sometimes you have no choice. In order for me to sleep due to tapering Doxepin (a sleep med) and having rebound insomnia, I have to take a herbal supplement. I am concerned that down the road, it could be hard to get off of it.
I think it is matter of using the tools responsibly and with understanding.
> But generally, adding a drug to deal with the problems caused by another drug is playing with fire.
Can you provide an example?
> For most people, time is the solution and letting the brain get back to homeostasis.
*Ease* back into homeostasis so as not to overshoot and produce more persistent problems - like the post-discontinuation persistent withdrawal effects that some people are reporting with SRIs and Remeron.
I have learned to taper using a flexible dosing method that does not confine one to one dose per day of a fixed amount. It is much quicker and much more tolerable. I can get off of 300mg of Effexor within 2 weeks with no withdrawal symptoms except for those that I purposely allow to occur. There is more than one method of taper, and there is more than one kind of drug remediation strategy.
My suggestion to Chinaroses to take a single dose of Ativan was to use it as a biological probe, not as a method of remediation. There would be no withdrawal syndrome to experience. However, if the symptoms described by Chinaroses were to disappear or ameliorate for a few hours after the dose, it might provide information on the state of the glutamate or GABAergic systems.
Believe me, I am no big fan of replacing one medicinal trap with another. But that is not what is going on with these discontinuation strategies.
- Scott
Posted by jim45 on February 18, 2009, at 13:53:11
In reply to Re: 2-1/2 years later have permanent withdrawal sympto » 49er, posted by SLS on February 18, 2009, at 6:37:22
Dear SLS.
I think there's wisdom in your last thread/post.
Things depend on the individual and what they're going through.
Sure, some may be able to move on without something, but for some - like me, either they just keep suffering and missing out on life and the associated limited precious moments or they have to finally do something.
My Dad is slowly dying, and for two years I waited and tried virtually every common supplement to help me get better to no avail.
I hope those who are truly deeply suffering and dysfunctional thanks to downregulation and/or other neurological damage from anti-depressants will heed your advice.
Again, certainly some can stop everything and move on. BUT....some people are losing precious time waiting to get better. The things you mentioned are good advice for such people.
Kudos and thanks!!
Jim
Posted by bleauberry on February 18, 2009, at 17:41:39
In reply to 2-1/2 years later have permanent withdrawal sympto, posted by chinaroses on February 16, 2009, at 11:57:23
I wonder if the symptoms are indeed related to effexor? It would be easy to test, just so you can be sure you are pointing the finger at the right thing. I mean, I agree it looks obvious, but...it could be something else, it could be coincidental timing of something else. Every so often things that look obvious trick us in the wrong direction.
To rule that out and be 100% sure, you could try a challenge experiment. That is, get some effexor and take some for, I don't know, a day, a week, two weeks. Feel it out. Just see if those symptoms go away when you give your body the effexor molecule. If they don't, then you have to reconsider the diagnosis maybe?
On any topic I like to study the pro side and the skeptic side, so I can see the whole picture. I am on the pro side of psych drugs mostly. On the skeptic side would be Breggin. He claims ADs do permanent damage in a way that we require the drug for life, kind of like a permanent addiction, even long past the point of the drug doing us any good, even after it has pooped out. Somehow our biochemistries become dependent on that molecule and cannot regain normal chemistry without it, he claims.
It might be so, I dunno. I mean, we do know that ADs reduce or increase the numbers of receptors depending on the drug, they make receptors more sensitive or less sensitive, they change the way the body decides to convert tryptophan to serotonin, they turn the volume of certain genes up, some down or off. How are we to know that any of these changes aren't permanent? I do believe in the resiliency of the human body, but I'm not sure it was built to take on the power of these drugs? Dunno, just a thought.
I wish I had some ideas to help you. My gut instinct tells me the problem is likely in the opioid circuitry. Serotonin and NE circuitries just don't cause those kinds of symptoms. Other symptoms yes. It just feels more like an opioid thing. Effexor does have some unknown opioid effects, and it is similar to its cousin the opioid painkiller Tramadol. I have always felt that the difficulties of Effexor withdrawal were somehow tied into some unknown opioid connection. That would explain it a lot more the serotonin or NE.
Anyway, if you are brave enough to endure the startup and another short withdrawal, you could always test the theory just to be sure.
Posted by SLS on February 18, 2009, at 20:33:02
In reply to Re: 2-1/2 years later have permanent withdrawal sympto, posted by bleauberry on February 18, 2009, at 17:41:39
Hi Bleauberry.
You may be right about the opioid system being involved with venlafaxine specifically, and it probably has nothing to do with its molecular similarity to tramadol. It does not act directly at opioid receptors.
http://cat.inist.fr/?aModele=afficheN&cpsidt=15767650
I found a few interesting articles on Google attributing the analgesic (antinociceptive) opioid properties of venlafaxine to effects secondary to its actions upon neurotransmission in the locus ceruleus. Apparantly, both venlafaxine and mirtazapine are the only two antidepressant drugs for which this is true. Perhaps this is why there is a special synergism between venlafaxine and mirtazapine when combined to create "California rocket fuel".
http://www.opioids.com/depression/antidepressants.html
- Scott
Posted by Jim45 on February 19, 2009, at 13:09:45
In reply to Re: 2-1/2 years later have permanent withdrawal sympto, posted by bleauberry on February 18, 2009, at 17:41:39
Bleauberry -
Hey. I too think you're onto something about Effexor (FXR) opioid connection. SLS references some websites that have researched the "possibility". I've bookmarked then for reference (Thanks SLS!!). I'd theorized that there was such but could find no published - intentionally or not - data from the manufacturer or others about it.
I also liked the approach you mentioned in determining whether FXR was to blame, but from personal experience I'd wager the outcome would implicate it.
I tried MANY anti-depressants for YEARS until my Doc gave me FXR. In a week or two I was doing fine. Upped my dose and was doing great.
I could write a long story about it all, but basically after 2 or so years it stopped working, but the withdrawal was terrible. Doc upped the dose and I was okay again for another couple or so years. Had to stop taking it when my Doc lost his license in Jan.07, and I went through INCREDIBLE misery for 2 years.
Back to the opioid thing: in curiousity sometime after I started taking FXR - I'm thinking it might've been after my first 2 year acclimation, I started researching it in an attempt to figure out why it helped when all the other stuff, including NDRI's hadn't. It didn't make sense. If all FXR was doing was affecting Serotonin and Norepinephrine (while it affects dopamine too, that's supposedly only at high doses) the SSRI's I'd tried in combination with the NDRI Wellbutrin should've had at least a similar effect. But they didn't.
Towards the middle/end of my time on FXR I experimented with opiates. They brought me temporarily right back but tolerance limited their use to only 2-3 times a week. Then I read about opioid agonist/antagonist combos reducing/stopping tolerance and dependence. I acquired some naloxone, started taking low doses of it with the opiate........AND IT WORKED!! I could take the combination daily and it kept helping!!
Unfortunately soon afterward I got a nastygram from the FDA about importing controlled substances (the opiate) and had to stop. My wonderful Doc had heard of all that though (he was a cutting-edge Psychiatrist) and prescribed Subutex at my next appointment. Well, I quickly developed a tolerance to that too and asked if he'd let me try Suboxone - an agonist/antagonist combo. He did, and I successfully took that for about 2 years. Had to stop that too though when he lost his license. However - my supply of Suboxone lasted until March or April of 2007. The incredible misery started when the FXR ran out. The Suboxone only helped a little. Curiously, when the Suboxone finally ran out all I suffered was some crampy legs and strange thoughts for a few days.
Well I got carried away there, but thanks for your posts.
I hope Chinaroses quickly gets through all this. I waited unsuccessfully 2 years to get better.
Jim
Posted by 49er on February 21, 2009, at 11:08:43
In reply to Re: 2-1/2 years later have permanent withdrawal sympto » 49er, posted by SLS on February 18, 2009, at 6:37:22
Hi Scott,
<<Not that there is anything wrong with medicating a side effect, but many people use remedial pharmacological measures to ameliorating the intensity of a withdrawal syndrome.>>
Cold turkeying Prozac caused me to have suicidal ideation.
But don't take my word on the negatives. You might want to go to Paxil Progress Boards and read the post by Laurie Yorke, an RN who is the board administrator, on using Prozac to alleviate withdrawal symptoms from Paxil.
"I'll take them on one at a time. Paxil/ssri withdrawal happens to approximately 70% of users...this is probably lower than the actual number since so many don't know what they are experiencing and don't report it.
Switching, in our years of experience here hasn't proven out to work. Paxil is just unique enough that most experience withdrawal regardless of what other ssri they switch to. Prozac had caused anxiety in alot who have tried this and they ultimately went back to Paxil and weaned slowly off from there. The major problem with switching is you have no idea what are withdrawal symptoms and what are start up symptoms of the new drug.
Taking two ssri's together is potentially dangerous. Serotonin Syndrome is warned against when taking two serotonin enhancing drugs at the same time.
As for the Prozac...it has the same sexual side effects that Paxil does, so I'm not sure what information your doc is basing his recommendations on."
By the way, I have permission to repost anything she says so I am not violating confidentially rules.
She was responding to someone whose doctor suggested switching from Paxil to Prozac for side effects. But what she said is applicable to our thread.
She has become a staunch advocate after her son, Ryan, became psychotic on an MD tapering schedule for Paxil. He is fine now that he is off the med although I think he has lingering physical problems
<<My guess is that magnesium might help as well. If it can make life more tolerable and the person more functional, why not opt for remediation?>>
The difference is that many people are deficient in magnesium. But even there, you have to be careful as taking it can cause deficiency in other areas.
Also, many people are so hypersensitive in withdrawal, that even supplements aren't a good idea.
<< Using your taper schedule would actually take longer and possibly allow for more withdrawal symptoms than crossing over to Prozac and allowing its week-long half-life serve as a gradual taper.>>
Scott, with all due respect, I couldn't disagree more and feel like what you are advocating would make the situation alot worse.
This isn't a case of simply lowering the level of a medicine in the body. Psych meds make numerous changes throughout the body and you need to give the brain time to adapt to these changes.
Quickly tapering a med is like putting the car in reverse at 60 miles per hour. Adding prozac is the equivalent of putting gasoline on the fire since you can have start up side effects and there is no guarantee that you won't have a problem free withdrawal.
Also, what about situations like mine where Prozac obviously can't substitute for Doxepin as a sleep med? Anyway, if most people's (not all) goals are to be med free when they taper, why would they want to substitute another med and take the risk of side effects that they aretrying to get away from? That makes no sense
<<Using an anticonvulsant might be the way to go if kindling is indeed involved in the precipitation and persistence of the withdrawal syndrome. There is usually no withdrawal syndrome at all from coming off of an anticonvulsant if it is tapered, which can sometimes be accomplished within 2 weeks.>>
Scott, again, with all due respect, I feel that statement is very wrong and could cause people numerous problems for a long time. Even psychiatrists who are pro meds would never make a statement like that.
Anyway, you might want to read these comments by people on the Furious Seasons Blog regarding Lamictal withdrawal. I think they would greatly disagree with you.
<< Not so. You don't have to "withdraw" from these other drugs, just discontinue them appropriately so as to prevent withdrawal.>>
Scott, if you want to avoid having problems for life, you need to taper psychotropic medications. You might be one of the lucky few who avoids problems but you won't know until it is too late.
I respect your right to feel differently but I am very concerned that people reading this thread will do something they will regret down the road.
<<Can you provide an example? You might have some worth noting.>>
Laurie Yorke's example.
<<I think it is matter of using the tools responsibly and with understanding.>>
No argument there but most psychiatrists do not fully inform their patients.
<<But generally, adding a drug to deal with the problems caused by another drug is playing with fire.>>
><<Can you provide an example?>>Hypothetical situation. Let's say I was given Seroquel to remedy the rebound insomnia caused by tapering off of Doxepin. My hearing loss caused by Remeron, which I was previously on would be mild compared to what even a low dose of Seroquel would cause.
What you are suggesting would be the equivalent of giving someone Cocaine to deal with heroin withdrawal. Of course, that is absurd but in a way, that is what you are unintentionally suggesting.
<< *Ease* back into homeostasis so as not to overshoot and produce more persistent problems - like the post-discontinuation persistent withdrawal effects that some people are reporting with SRIs and Remeron.>>Yeah, but I feel your suggestion would lead to more post-discontinuation problems. You might be rid of the ones with one SSRI but you would be essentially trading problems.
>
<<I have learned to taper using a flexible dosing method that does not confine one to one dose per day of a fixed amount. It is much quicker and much more tolerable. I can get off of 300mg of Effexor within 2 weeks with no withdrawal symptoms except for those that I purposely allow to occur. There is more than one method of taper, and there is more than one kind of drug remediation strategy.>>I don't doubt you but again, even pro med psychiatrists would agree that Effexor is the worst drug to taper off of and needs to be done carefully do to is very short half live.
Again, you may be one of the lucky few who can get away with this but the problem is that most people can't and they will find out when it is too late which may destroy their lives for years.
49er
Posted by SLS on February 21, 2009, at 13:26:31
In reply to Re: 2-1/2 years later have permanent withdrawal sympto » SLS, posted by 49er on February 21, 2009, at 11:08:43
I do what I do. It works.
You should read my work in the Withdrawal archives before you comment any further on my belief systems.
- Scott
Posted by NewQuestions on February 23, 2009, at 14:47:30
In reply to Re: 2-1/2 years later have permanent withdrawal sympto » 49er, posted by SLS on February 21, 2009, at 13:26:31
Garnet--have you read any posts on paxilprogress.org? There is a lot of good information on that site. Look in protracted withdrawal. I have concluded I need to go off of EVERYTHING until my body heals.
Posted by garnet71 on February 23, 2009, at 22:01:02
In reply to Re: 2-1/2 years later have permanent--Garnet, posted by NewQuestions on February 23, 2009, at 14:47:30
Hey NewQuestions. That's probably the best experiment for you right now. You won't know if you don't try. As long as you can hang in there with work or school, or whatever you are doing at the present time.
I've seen the PaxilProgress site, but can't use more than one forum at a time (personal decision). I saw the post about the discontinuation syndrome you had linked for another. That could very well be the case for me as well as for you. How can they prove the symptoms wouldn't exist if not for the meds? I don't understand about the brain chemistry.
My recent best was during the summer for a month and a half-I was off ADs for a few months prior. I felt so normal. My mind and body felt so balanced. I was so sure I was getting back to the way I was 8 years ago, pre-SSRI. Then with high-stress and too many demands, even for a totally healthy person, I fell ill to anxiety again. However, I never had this kind of anxiety before I took the SSRIs. It could be a coincidence; it may or may not be.
I did a last-minute risk-benefit analysis and came to the conclusion I have to stay on meds at least until I finish grad school (3 more semesters starting this fall). I can't take another chance of falling out mid-semester like I just did. I don't think one can take 2 leave of absences in a row. I fear I wouldn't be allowed back in; its just too great an opportunity to take the risk. After grad school, yes, I'm going back to being med - free. For me and perhaps others, I think regular exercise, good diet, adequate sleep, and a stable schedule could let me be well. With everything I was doing when the semester was in session, I could not take care of myself as I would have liked to. Just not possible.
Please keep me posted on your progress. Maybe I'll be in a mood for change and migrate over there too.
Thanks for note and best of luck to you. :))
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