Post Benzo Protracted Withdrawal Support Group

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Hi Buddies,

 

I have been reading that it can take up to 5 years or more for some of us to recover. 

 

Good post rondomanic53.

 

Patty  xo

 

*head desk*

 

Is it odd that I feel both encouraged and discouraged by this thread all at the same time? 

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Hey Rondo,

 

Yes you described it head on....I'm so sorry that you are also having to endure this....maybe we'll be much better when it's over?  27 months is a ton of progress too.  Maybe we'll at least see less symptoms after this if we don't come out of it completely healed.  It really does wear one our huh?  Hang in there!  We have to get there eventually.

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What do you all have in common if anything? I have a very strong suspcion I am going to end up here in protracted since my symptoms at 10 months out are very severe (like acute w/d).

 

Is polydrugging a factor in long protracted recoveries?

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I don't believe it is MMIR - I only took Klonopin and Prozac - I don't think that is polydrugging and here I am along with the rest of you.....but I did take it for over 15 years and I did c/t the K....I am going very very slowly off the Prozac...23 months out nnow....pretty discouraging.

Hoping2BFree

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I have heard my share of stories with regard to poly-drugging from a very reliable source,and the answer is THERE IS NO ANSWER!

It varies with our own individual DNA makeup,so length and severity of wxs cannot be predicted .

I have heard horrific stories mostly about people who ended up in physc wards of the State they reside in and yeah they had hard wxs being poly-drugged but I was reminded the worst of the worst cases recovered all at different timelines.

There is no real answer to our number one question we all share-how long to suffer ,look at me yes I am older but never had any mental issues ever in my lifetime,no past drug use,3 plus months on .5mg Ativan daily and a  very quick taper and here I type 2 years 3 months in an extended nightmare.

Everyone is different,everyone recovers in there own timeline according to genetics more than any other reason,some taper for many months and it helps shorten things and others it just extends the misery.Low dose high dose again ,time on just doesnt seem to really reflect in the stories I have heard.

I so wish I had an andedote to all our sorrows caused by Benzos,we heal by Threshold principles,and everyones is a little unique.

Although one note of interest I can share the younger patients stories that was shared with me all seemed to recover  on average quicker although they suffered as much as anyone.I believe this is supported by a 350 person wxs survey done some years ago on recovery timelines,it was very thorough.http://www.benzosupport.org/recovery_times.htm

Normal Life Wishes,

Rondo

 

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Just wanted to chime in here too. i am now 22 months out from a c/t of ativan. I went into a bad wave a few days ago also. not sure why. I may have overdone it on the swimming and walking but not that much. I am really feeling bad right now. Sure hope this settles back down soon. Sure could use some support right now or a few encouraging words to keep me going. Thanks.

 

Rain

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What do you all have in common if anything? I have a very strong suspcion I am going to end up here in protracted since my symptoms at 10 months out are very severe (like acute w/d).

 

Is polydrugging a factor in long protracted recoveries?

 

Hi mmir.  I think it is too early to predict at 8 months out about becoming protracted.  I had a huge wave at 9 months out, partly as a result of drinking some alcohol and caffeine, junk food... while on vacation the first summer off the benzo.  BP was elevated too.  I subsequently embarked on a moderately intense exercise program, lost 30lbs and got back some health, but my CNS was not ready for so much radical change, so another setback occurred at about 14 months.  I found that things really didn't start to feel great til about 16 months.  It never occurred to me that I was going to become protracted since I knew the definition to be 18 months or longer plus I saw some improvements along the way.  As far as polydrugging, I don't believe there is any hard proof that being on other medications would lead to protracted withdrawal off the benzo.  I think a greater factor is one's mindset, working on developing coping skills  and trying to stay in reasonablly good physical health via exercise and nutrition that can have a strong impact on the trajectory of healing.  I think it's important not to overdo the exercise or dieting either, something I learned the hard way .

 

Vertigo

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Just wanted to chime in here too. i am now 22 months out from a c/t of ativan. I went into a bad wave a few days ago also. not sure why. I may have overdone it on the swimming and walking but not that much. I am really feeling bad right now. Sure hope this settles back down soon. Sure could use some support right now or a few encouraging words to keep me going. Thanks.

 

Rain

 

Hi Rain ... it was good to see a post from you but so sorry to hear that you've been hit with another bad wave.  All we can do is hang-on and just keep getting thru the days till the healing happens.  You are not alone in your suffering even though it feels like that.

 

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What do you all have in common if anything? I have a very strong suspcion I am going to end up here in protracted since my symptoms at 10 months out are very severe (like acute w/d).

 

Is polydrugging a factor in long protracted recoveries?

 

Hi mmir.  I think it is too early to predict at 8 months out about becoming protracted.  I had a huge wave at 9 months out, partly as a result of drinking some alcohol and caffeine, junk food... while on vacation the first summer off the benzo.  BP was elevated too.  I subsequently embarked on a moderately intense exercise program, lost 30lbs and got back some health, but my CNS was not ready for so much radical change, so another setback occurred at about 14 months.  I found that things really didn't start to feel great til about 16 months.  It never occurred to me that I was going to become protracted since I knew the definition to be 18 months or longer plus I saw some improvements along the way.  As far as polydrugging, I don't believe there is any hard proof that being on other medications would lead to protracted withdrawal off the benzo.  I think a greater factor is one's mindset, working on developing coping skills  and trying to stay in reasonablly good physical health via exercise and nutrition that can have a strong impact on the trajectory of healing.  I think it's important not to overdo the exercise or dieting either, something I learned the hard way .

 

Vertigo

 

Thanks vertigo! I see what you mean. I know things can change for the better and fast...but the thing is I am having a lot of severe symptoms still and I just have no idea how my CNS can miraculously heal from all that (akathisia, psychosis, anger, anhedonia, anxiety, agitation, DP/DR, intrusives, etc. and some relatively infrequent physical symptoms). I know one cannot predict how healing is going to unfold, but I've found that the majority of those who were this bad at 10 months off had long protracted withdrawals.

 

I am trying to stay positive as much as my brain allows me to. Exercise is out of the question for now since just cleaning the bathtub revs me up I know it can be very beneficial and I hope my brain can reach a state where I can reap its many benefits. Regarding nutrition, I'm eating very well but haven't been juicing as frequently lately...should get back to that

 

Thanks for your support,

--mmir

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Another rough day I'm afraid.  Yesterday I had some real hope that this wave was on it's way out but as usual it has pulled me back in!  I slept 4 hours and the wave was at it's worst on Friday night.  Saturday night slept 10 hours!!  Felt MUCH better.  But then last night could NOT fall asleep until about 3 and slept till 6! Then woke up with massive histamine and swollen right eye which is a pattern from the past and due to swelling/facial muscles/nerves I think.  My nose just burned SO badly.  I'm hoping for better sleep tonight.  I have noticed the head pressure is lifting very sloooowwly each day so I'm really hoping this thing won't linger much longer!  Hope to report back much better progress when this is over but I guess I'll just have to wait and see.....

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Just gonna give my two cents. I am 4 years off. I think everyone needs to realize that our nervous systems have been through hell. We are gonna be so sensitive to every situation and products that we put into our bodies. You will have to learn to be strong again. This all takes time. You are healing! This does not happen overnight. You have gone through withdrawals and now you have a very weakened state of mind and body that you are dealing with. You will get stronger and stronger. Rest when you need to push yourself when you feel you can. You have to handle yourself with TLC! Only you and others that have been through this will understand. Be patient with your loved ones. They don't really know how we have felt. This has been so draining and hard on them too. If we don't get it they sure don't. You will have moments that you don't feel good and you will have waves. I look back and it has been so hard but I can say I have gotten better and better. I am in a setback at the moment. Was taking vit D for bone density and it seems I have had a reaction to it. Feeling like crap but knew this might happen. We are sensitive to everything. Please be strong, stay the course. You will look back and know that as time has gone on you have gotten better. Speedy healing to all of you!

 

mal

 

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Great post Mal ... thank you. 

[Guest [Po...]]

I had a bad reaction to Vit D too. It took me many months to recover, but then it has a half life of 5 -8 weeks and you have to allow many half live for it to be out of your system.  So don't be discouraged if it takes a bit longer than you were expecting.  There is a great blog on Vit d, I will try and post a link here for you

 

ctheblog.cforyourself.com/.../overdosing-on-vitamin-d-side-effects.htm

 

will try again:

ctheblog.cforyourself.com/

if it doesn't work, you can copy and paste it

 

best wishes

 

Polenta

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Thanks all.  Today I am feeling much better.  Got my usual 8 to 9 hours of sleep and started feeling better physically yesterday.  Still dealing with the head symptoms and histamine but I am feeling better about it being on it's way out and probably back to my usual consistent plateau stuff.  I just really have to hope that some healing has come from this whole nightmare but we'll see...lol I'm still too afraid to knock wood and say this wave is over but I don't feel like it should last much longer but I'll let you guys know what comes of it all.

 

Thanks to so many of you that have helped me through this.  I don't know what we would do without each other!

[Guest [Po...]]

If you speak to Una Corbett at BAT (who has years of experience of dealing with benzo people), you can't  call yourselves "protracted" until 4 years are over - she says 4 years is the average.

 

Polenta

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If you speak to Una Corbett at BAT (who has years of experience of dealing with benzo people), you can't  call yourselves "protracted" until 4 years are over - she says 4 years is the average.

 

Polenta

 

Four years sounds like a long time.  I found that I had what I'd call a fairly "normal" progression of CNS healing over the first 18 months with one exception (getting shingles at six weeks post taper).  After the acute withdrawal and shingles was over, some health improvements came by the fifth and sixth month.  There was a fair amount to deal with in acute withdrawal (rebound anxiety, a couple of mini panics and elevated blood pressure, visual problems, sleep disturbance, nerve tingling from the shingles and GI issues to name some)  in that first six months.  There were also a couple of setbacks in months 9 and 14 as posted in my signature.  I also had a kind of stubborn subtle CNS sensitivity that continued into the 2nd and 3rd year, particularly when a particular challenge or stressful experience came up. It's hard for me to say whether it was shingles or post benzo withdrawal that led to  the CNS sensitivity after the first year was up.  Is it the chicken or the egg?  The initial "acute benzo withdrawal" probably in part caused the immune system break down which in turn led to shingles, something not usually common for one to get in one's forties .  Yet once that CNS damage was done, was it the benzo or the shingles virus to blame?  Also, as someone who had lifelong anxiety "sensitivities", I think at some point,  there may be a  possible convergence of post benzo and what may have been "pre benzo" condition(s).  I assume I am not the only one who took a benzo for a reason?  I don't wish to offend anyone, but I think it can become a grey area at some point, where one has a healing CNS from benzo use and some initial period of "withdrawal" after c/t or taper, but also a possible resurgence of issues for which the benzo was taken in the first place? 

 

There may also be the possibility that other health conditions or medical problems could evolve out of the benzo use, taper or c/t off it.  Ongoing anxiety, depression or other condition (perhaps some of which started before the benzo)  could become separate medical conditions to address.  Some may have or develop thyroid, adrenal problem, diabetes, neurotransmitter imbalance or deficiency, autoimmune disorder, hormone imbalance, chronic fatigue...  Some symptoms or seeds of a condition may have already been planted before the benzo or one may have been predisposed to them already!  Might be food for thought as opposed to singularly focusing on "post  benzo withdrawal" or "protracted withdrawal" as a term to potentially describe one's health condition(s) that extend beyond some period of time.  I hope this does not offend anyone.

 

Alas, I've gone on a tangent.  Back to the topic highlighted- I think four years for "normal" post benzo healing  might be less common, though perhaps possible for some cases.  However, extending the definition of "protracted"  from 18 months to 2 years for the average benzo user sounds reasonable but others can weigh in.  To clarify, I think if one has not found at least some significant healing in several areas by 2 years post benzo, it might be reasonable to use the term "protracted".  My doctor would laugh at me (and has smirked) if I brought up "withdrawal" off the valium as potential causes for conditions beyond a few months off the benzo.  No doubt others have experienced this. It may be worth considering dropping the "withdrawal" term from "protracted withdrawal" and use other descriptors when talking with one's doctors, a point that was made by another buddy on my c/t and detox thread last year. 

 

Vertigo 

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Thanks Polenta! Very interesting. Yes I was on it for 3 months and having a toxic reaction I believe to the vit D. Reading this helped and I appreciate you posting this.

 

mal

 

[Guest [Po...]]

I am very glad it helped, I hope you managed to get to the blog!!!

 

Polenta

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Yes, Polenta, your article on Vit D helped me, too.  I think the way to go is a UV light for many of us.  I know that sitting in the sun revs up my symptoms and makes my already burning foot less tolerable.  Thank you.

 

Patty  xo

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well, this post gave me one thing to be grateful for today...i seem to be ok with the high doses of vit d i'm currently taking daily.  at least as far as i know...i am trying to get my levels up, as i have been diagnosed with osteoporosis at the age of 36. no doubt accelerated by the non stop diarrhea/inability to chew solid food/lack of appetite/nausea that i suffered during tapering and for a good 8 months afterwards.  reading vertigo's post, i feel like he is one of the lucky ones for feeling mostly healed at 18 months off. for me, i started using ativan because i'm an addict and i loved the way it made me comfortably numb, i was instantly hooked. there was no 'reason' for me to take it...i am almost 22 months off and still suffering a LOT.  I spoke with Una when i first started on my valium taper, and i remember her very straightforward and 'knowing' way of speaking about benzos.  I believe what she says is the truth, i have no doubt that i'm in for another two years of 'healing'.  I also found out i have insufficient levels of cortisol, meaning my adrenals are shot and I am, admittedly, addicted to caffeine.  These things are hampering my recovery, and I know it.  I continue to have pain, severe at times, jerking of my limbs and whole body as i'm trying to fall asleep and in the middle of the night, insomnia, tinnitus, jaw pain, teeth pain, muscle fasciculations (lately it has been my chin that will quiver nonstop for hours, today it was my right upper back), severe weakness, depression, anxiety, etc etc.  This is not all the time, some nights i sleep well, others i sleep hardly at all. some days i cannot hardly walk up the stairs, others i have the energy to do my 1 and 3# dumbbell exercises.  i asked my doctor to test me for lyme, which came back negative, but i'm thinking of going through igenix and doing the western blot test that they have available.  money is pretty much nonexistent though, and i can't afford to go to any more doctors or have any more testing done.  i feel pretty hopeless at the moment that i'm ever going to feel 'normal' again.  i know the benzo permanently altered me, i have no doubts about that any longer.

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Polenta. I see you are benzo free since 1993 and you still consider yourself in protracted withdrawal. Could you say a little more about your present situation and what symptoms you have. Maybe I've missed other posts from you that explain this. That's nineteen years of withdrawal. Am I the only one shaken up by that statistic?

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Hi JJKale,

 

It is very possible that you are still experiencing protracted withdrawals.  I got hit pretty hard at the 24 month mark.  Regarding lyme's disease.....I think the #6050 blood test from Igenix is around $240.00.  I am sure you have checked out their site.  Hang in there.  Most people heal as long as there isn't something else going on. 

Patty  xo

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Thank you so much for the D information everyone. I will not be taking the 50,000 IU's tomorrow or every again. So sick of being sick.

 

KID

[[Wh...]]

 

 

Polenta. I see you are benzo free since 1993 and you still consider yourself in protracted withdrawal. Could you say a little more about your present situation and what symptoms you have. Maybe I've missed other posts from you that explain this. That's nineteen years of withdrawal. Am I the only one shaken up by that statistic?

 

No you are not Lionasi.  I'm also thinking about Polenta too and how awful it would be to suffer that long. 

[[be...]]

 

 

Polenta. I see you are benzo free since 1993 and you still consider yourself in protracted withdrawal. Could you say a little more about your present situation and what symptoms you have. Maybe I've missed other posts from you that explain this. That's nineteen years of withdrawal. Am I the only one shaken up by that statistic?

 

YES!  That is VERY disturbing indeed!  I'm not so worried about the majority of people here because I feel they will heal.  Over the last 2.5 years here I have seen alot do so.  But what angers me  is the poor souls that are still sick after that long.  My heart goes out to you Polenta.  Dont be afraid to post here.  We need to face the truth about how long this can take.  Plus you need the support!  Please let us know what you have learned in that many years about wd.  If you are too afraid to post here then PM me.

 

We have a date of after 18 months is protracted wd, at what time should it be considered permanent?  10, 20 50 years?  A lifetime? 

 

I will confess that I was better on than off.  Ive been sick with little quality of life compared to the way I was living before my ct.  I often ask myself, how long will I allow myself to suffer before I decide to do something like another med.  After 10 years I think i will.  What good is it to wait for 20 years just to see if im healed by then.  That is wayyyyy to long to suffer.  :-(