squirrel

Protracted Withdrawal or PAWS (post-acute withdrawal syndrome) how long does it last?

145 posts in this topic

I have been searching the internet to try and find people who have experienced symptoms as long as I have without any success.I know there are a few on this board.When do we say this far out its either something else or this is my state of health now.Even looked at Benzo withdrawl and found nothing.

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Squirrel, I hear what you are saying, but I don't have an answer. That's why I would like to try an antihistamine for my allergies. I'm tired of sitting around "waiting" for everything to go away. My allergies for example I had as a kid...I do understand that antihistamines work on the same receptors as Paxil and maybe I wouldn't have had a resurgence of hay fever had I not taken Paxil, but how do I know.

 

(I do understand that some symptoms for some are residual of the w/d though too.)

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squirrel, no one can say what to do about treating protracted withdrawal syndrome overall because it's a lot of different symptoms. The primary cause probably is a brain center that was affected by the medication -- see http://survivingantidepressants.org/index.php?/topic/392-one-theory-of-antidepressant-withdrawal-syndrome/

 

From there, a lot of systems in the nervous system and the body get bad signals. The symptoms become diffuse.

 

The best we can do is try to reduce symptoms one by one.

 

I've still recovering, at nearly 7 years off Paxil.

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I wanted to share that I did a lot of research on withdrawal and why some of us are so severe. Dr. Keri Buck's lab at Oregon Health Science University (I think it was around 1996) first discovered that genetics were the determining factor in sedative/hypnotic tolerance and withdrawal (steroids, benzos, alcohol, barbiturates). It was later found that all drugs that alter brain function have a genetic link to how fast and how much neuroadaptation we incur.

 

Some people can have their nervous system bathed in numerous chemicals and have no structural or biochemical changes occur. Others of us a few doses are enough to destabilize the system.

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I've heard this put as: People with higher neuroplasticity are more affected by withdrawal because their brains and nervous systems have adapted more completely to the drugs.

 

The good news implied in this: If you had higher neuroplasticity before, you've still got it, and your brain can re-adapt.

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True Alto

 

You have to have the ability to conform to these drugs in the first place. I know from anxiety conditions it is harder to heal after a breakdown than to stay on the right side of the condition in the first place

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I know this is about Benzo's but can someone explain if this means the damage is reversible or not please?

 

Long-Term Damage and The Post Withdrawal Syndrome (PWS)

The existence of the post withdrawal syndrome is recognised and accepted for other drugs like the barbiturates, opiates and alcohol. (See references 3, 20, 26). Its occurrence is routine enough for it seldom to be commented upon. Although many alcoholics and hard drug addicts receive primary treatment for four to ten weeks, a minority need and receive residential treatment and rehabilitation for up to 12 months.

 

It would be appropriate if similar opportunities were available to benzodiazepine therapeutic addicts. There is a desperate need for them. Just as there was (and is) a strong resistance from the medical profession and the drug companies to recognising and accepting therapeutic dose dependence there was (and is) a similar reaction to the benzodiazepine post withdrawal syndrome.

 

There is a strong knee-jerk reaction geared to diverting the blame from the drugs and prescribing practices onto the patients. A range of speculative reasons is offered e.g. the symptoms are a return of the original complaint, latent mental problems exposed by the drugs and the old chestnut, personality disorders.

 

Contrary to these myths are the following: Few if any studies have actually checked the original records for prescribing diagnosis, most information is anecdotal. The best evidence there is suggest that at least 85% of prescriptions are given for non psychiatric disorders. There is no evidence that personality traits or characteristics predispose anyone to dependence (Royal College of Psychiatrists, 1987). The few before, during and after dependency studies show no correlation. All aspects of drug dependency can be fully explained by biochemical factors (World Health Organisation 1993).

 

The claim that drugs expose latent problems is unprovable, unsustainable and unscientifc. What is provable is that psychoactive drugs cause psychiatric disorders and marked changes in personality. From the mid-1980s to the mid-1990s there was an increasing number of papers studying this syndrome up to five years after discontinuation of drug taking. These studies were sometimes in parallel with investigations of the nature of long-term damage and conclude that it is an iatrogenic condition. In addition, there is a significant overlap between the syndrome, acute withdrawals and long-term ingestion of benzodiazepines, clearly establishing a link between the post withdrawal syndrome and adverse reactions caused by these drugs.

 

Summary

There is a very wide range of physical and psychological symptoms for example: paranoia, delusions, shaking and trembling, paraesthesiae, depression, behavioural disorders, unstable mood, headache, irritability, insomnia, anxiety, malaise, poor concentration, gastrointestinal problems, abdominal discomfort, depersonalisation, derealisation, emotional instability, sensory disturbances, perceptual changes, auditory changes, tinnitus, vulnerability to stress, unsteadiness, neck tension, neuro-muscular problems, "bursting head", phobias, panic, obsessive features and palpitations.

 

The post withdrawal syndrome is largely responsible for relapse - from 30 to 70% in different studies, up to five years after discontinuation.

 

The studies have established that the PWS is:

  • Linked with biological abnormalities - up to 3.5 years Is reversed for short periods by flumazenil, an antagonist, up to five years.
  • Associated with a non-reversal of tolerance up to 3.5 years.
  • Linked with permanent changes to the central nervous system. Patients with a history of benzodiazepine dependence are unlikely to respond normally to these drugs after discontinuation.

 

There is a 1:1 correspondence between long-term damage and the post withdrawal syndrome. Careful management of the PWS is required and should include help from doctors, family, friends, support groups, stress management, cognitive behavioural therapy, knowledge and information - to help the patient come to term with the patients changed life situation.

 

At least 30% of benzodiazepine dependent patients experience the PWS rising to nearly 100% for long-term chronically dependent patients.

Edited by Altostrata
added paragraph breaks

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hey squirrel,

 

well, this is a cheery one!

 

Do you have a link?

 

alex

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yes Alex;

 

 

www.benzo.org.uk/vot4.htm

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hi,

 

i based my taper on benzo org uk because i found nothing else at that time, and i see benzo and antidepressants are similar;

the manual benzo becomes a little old, Ashton tried to give hope, and do not long explain her failure examples, we do not know what they become today, but she speak about them(people who were not able to wean for example), her conclusion was to wait, improving can always happen;

but she never wrote all people have improved, many have improved.

I read some have still little improvements such as 5/6 years off, but more i have no testimonies actually.I know i have neurological damage today at 28 months.

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Linked to permanent changes to the central nervous system. That does not sound good.

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My feelings exactly Maybe, its scary to read stuff like this, especially as ssri wd is very similar to benzo.

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Please, guys, no one could know if there are "permanent" changes in the CNS. That would take autopsies, and I don't believe you can view the CNS with any imaging device.

 

Anytime you read something like this, please take it as conjecture.

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It scares me too, while I try not to read too many of those articles, when I see something like this I feel really upset. I do not want to believe in permenant damage but now about 4 years on the road in fact 2 years more counting the previous failed attempts) the drug has already consumed about 6 years of my life. I cling to the reports of people who did recover after 5 or 6 years...

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Claudius,

 

do your symptoms still change or do you now have remaining symptoms that are always the same?

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I have persistent nausea and pretty awful jolts in the chest which never are away but sometimes they are less prevalent. These are the still scarce moments I feel lots better. But I feel still pretty debilitated due to these symptoms and am still unable to resume a working life. Really hope they will finally vanish... :o

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Please, guys, no one could know if there are "permanent" changes in the CNS. That would take autopsies, and I don't believe you can view the CNS with any imaging device.

 

Anytime you read something like this, please take it as conjecture.

 

 

I agree with you Alto. Autopsies would be the only method, that we presently have, to determine the alleged "permanent" damage.

 

 

TBH, while there are many valid points mentioned in the article, there are many areas that need to be challenged.

 

Too many unknown variables and unknown complicating factors that couild exist, within any given individual, and thus, I feel the report is making some general assumptions, as well as taking a few leaps, based on very limited research and/or based on insufficient information.

 

There's a lot of speculation going on within this report IMHO.

 

 

Just my humble 2 cents.

 

 

Pun

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Claudius,

 

some things seem to take much more time to heal than others. That is the fact with every other part of the body also. I always have to think of Goldenbawls (or so) whose remaining symptoms went from 100 to 0 over the course of a few days.

 

Did those symptoms develope earlier or late in your wd exerience?

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MAybe, yes I remember the story of Goldenbawls and he was surely an inspiration for me. I thought his turning the corner moment was at about 32 months. BEcause I am now at 46 months, I am really getting the creeps :(

There has been some evolution in my symptoms, the nausea was there from the beginning, the twitching eyes started at about 14 months in WD (!!) and the overall crappy feeling was from the beginning. THe intestinal mess is gone and the overall feeling of total derealization is way better now, 2 years ago I had no slightst idea about my future and now I am very eager to resume life and career but am still hindered by these nasty symptoms. I still have hope but 4 years is a tremendous long time.

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Well, I think it is a good sign that you did not develope any new symptoms way out and I am sure your remaining symptoms will resolve or get much better. I read about people who were as far out as you and still improved more and more. And the best example is Charlie.

Heads up, Claudius, even if it is a long road!

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We have to Maybe! Charly is one of my heroes too. Indeed I have no new symptoms last 2 years but very little progresion in the remaining ones. I will really celebrate the corner moment if it ever comes.

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I recovered from benzo's and know of another who did too, so there is no reason why we should not recover from a/d's. I did taper off benzos and c/t off a/d's which I think makes a lot of difference. The other person I know took 6 years to come off benzos on a slow taper and one more year to completely recover, so hope this gives you more hope squirrel

 

poodlebell

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The information I have read in the past regarding PAWS was related to Effexor not benzo's. I had no idea it was a term related to benzos. i don't recall there being any discussion of permanent damage but there may have I am going to look for it and get back to you.

From what I recall it was at either of these sites.

effexoractivist.org

http://theeffexoractivist.org/forum/index.php

or

sister site

which I cannot recall sorry I will get back later.

think it may be here

http://theeffexoractivist.org/forum/viewforum.php?f=52&sid=eaf85188e66e44d781073faf53e9da3c

under long term effects

it is here but sorry it is not called paws it is called panes may not be the same but seems like it is to me.

Persistent Adverse Neurological Effects Following SSRI Discontinuation (PANES).

http://theeffexoractivist.org/forum/viewtopic.php?f=52&t=2425

Sorry for all the links took you with me on a trip if you like the last link is all you need to get to panes.

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...I would like to try an antihistamine for my allergies. I'm tired of sitting around "waiting" for everything to go away. My allergies for example I had as a kid...I do understand that antihistamines work on the same receptors as Paxil and maybe I wouldn't have had a resurgence of hay fever had I not taken Paxil, but how do I know.

 

 

Hi -- I had the same problem with very severe allergies. I stopped consuming dairy (hard for me -- I love dairy) and was amazed that my allergies went away. I didn't even need the Clarinex-D I had been taking, in addition to a lot of other allergy meds. My allergies were so bad I felt sick all of the time. I still experience other w/d symptoms, but allergies are basically gone. It's worth a try -- it might help. I don't remember how long it took for my allergies to go away, but I remember it was pretty fast improvement.

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PAWS is a term originally referring to long-term damage from addictive substances, such as alcohol or methamphetamine.

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According to Robert Whitaker.. benzos are the second most difficult of the psychotropics to withdraw from, after antipsychotics. Ashton did a great deal of valuable work.. but her taper rate is too fast for many, including yours truly. If people come down very easy like it is possible to withdraw with little difficulty. But unfortunately, many end up reinstating because they have heard they should be able to get off in 12 months. I'm on month 14, and figure it will be free in another 8 before I'm off.. total 22 months. There is no free pass on benzos, if one comes off too fast.. the chances of PWS (Post Withdrawal Syndrome) are greater. For those who have previously come off, and then reinstated, kindling may make the next journey more perilous.. but doable. Where benzos are concerned, the Turtle wins the race.

 

Georgie

 

Used the TRAP 10% reduction rate from each previous dose, and held for one month for each cut. Slow.. but largely asymptomatic.

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Thanks, Georgie. Really appreciate your adding your experience to our knowledgebase (such as it is).

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Hey, Hopeful, good to see you!

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I know a few people who are having prolonged recovery from benzos, years out. All of them are very slowly improving. I'm not sure if it's a "turn the corner" kind of thing or just a very gradual return of health. Benzo recovery is typically three steps forward, two steps back, so it's not linear, but over time the trend of improvement becomes apparent.

 

More so to me than to them, I think. That's an odd thing about drug recovery--it seems like the people who are recovering are less aware of how improved they are. I suppose it's partly because the process is so much slower and more agonizing when you're inside it than when you're checking in intermittently from outside. You know, the way other peoples' kids seem to grow so much faster than your own.

 

For me, journaling my symptoms helps with this; I can look back and read and see that there has been improvement.

 

Anyway, as far as benzos and permanent versus reversible, it seems like for most people recovery takes longer than they wanted or expected it to, but it does happen, sometimes very very slowly, and almost always erratically.

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This is the first summer I have been vegetarian and mostly vegan (I have rice or oat milk instead of dairy) and I have had no allergies or hay fever so far. Up to now I have had really bad hay fever every year and needed anti-allergy meds. I have also read about staying hydrated helping with the hay fever. This has worked for me so far!

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Squirrel you have been off all medications since 2005? Alto's explanation is the only one I have heard of and it makes sense to me.

 

Are you affected daily? Or are there windows of good days followed by the not so good windows?

 

What prompted you to take Paxil? For me it was really bad anxiety and depression. It did work. None of us knew there would be all of these residual issues.

 

I don't know if I would be able to tell the difference between Protracted WD and anxiety/depression (original symptoms). I have thought about that for years now. I guess "it's putting the cart before the horse" right now as I have a long way to go to get off Celexa.

 

Hugs

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It is 7 years since I went cold turkey from 150mg of Effexor use. You can see my signature if you want more details.  All this time I have been thinking I would be well by now normal even back to my life or some type of life.  

I still have symptoms get drug reactions some scary and serious to me. 

I have been reading sites like this for 6 years at least and most say you get well in time.  Don't get me wrong I am much better than I was but not where I expected to be. Now that I have reached this 7 year mark I wonder about others who may have reach it too and what life is like for them. 

So if there are any people who fit this category on here maybe even new here... come talk to me. 

 

Things I want to talk about.  Did you taper slow fast or go cold turkey. 

What symptoms are you left with.. do you still have waves? 

Are you functional?  how functional?  Can you tell somebody you will be at an event and actually go long before the event or do you have to say I will see how I feel when the time gets closer? 

 

Can you get up everyday or even some days and go to work?

 

Was there a point where you had to skip the no drug mantra and take something?  

What did you try... did it help. 

Are you still hypersensitive to drugs... which ones have cause reactions lets say 5 years after being off antidepressants?

 

How do you see your life going forward?  

If you did not completely recover and have accepted that this is how the rest of your life will be... how have you coped with the realization?

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