Post Benzo Protracted Withdrawal Support Group

Hi Buddies,

 

The reason for this post is that I keep seeing a good number of posts from buddies who are done tapering benzos but feel they may be in protracted withdrawal and recovery.

 

Though, at 18 months out, I would say that I'm 75% recovered, I count myself among those who believe they may be in protracted withdrawal. And I fit the classic pattern:  huge amounts of benzos, Z drugs and loads of other meds, followed by very fast C/T off of most of them.

 

Anyway, this thread is open to anyone who'd like to chime in, but I wanted to start it in the hopes that we can have an ongoing thread that differs slightly from Vertigo's Post Withdrawal Freedom Support thread, in that I'd like to focus more upon supporting one another who believe they are somewhat stuck or frustrated about the lengthy recovery process that is known as "Protracted withdrawal" from benzos.

 

I'm hoping we can share experiences, symptoms, frustrations, support and successes in order to find common ground, comfort, empathy and perhaps even find some new things to try to continue to facilitate the remainder of our recoveries. Again, I'm 18 months out, have experienced lots of healing and recovery, but sure would like to know what the secret sauce is to capture that last 25% of my recovery, or at least to support, comfort and commiserate with those experiencing the frustrations of this lengthy healing process.

 

So please chime in with your experiences,

 

Best wishes,

 

Albie

I'm adding you to my list of Protracted members over 18 months Albie ... I wasn't aware of you.  This thread is a proactive measure to solve a problem and I hope that it stands.  I would love to be able to post openly here. 

Hey Albie, well, I am 26 months on the 17th. I'm all #1 interior- physical brain neuro, head eye pressure, helium head, electric brain inside, rapid thoughts from the physical overactive cns base. Wound pain on brain. (Short broken sleep)  #2) Exterior - I still feel (though less) a dull deep ache wound pain in bones around eyes, head, face, but of course it's the cns. Visual distortion, everything moves and is heat wavy. Stiff fascia tissue occipital bone - Now the 1) Interior - are what is preventing me from being daily functional. 2) Exterior - I could get back to life with these though no problem, no prob at all,  and they could linger and dissipate, they're not impeding.

 

So, my personal concern about this is NOT "will I heal?" I know I will heal. My concerns are when can I get around without my impeding head stuff so I can get back to life and with "energy" and no pain or disorientation, repair the damage this did to my life, and create it............................the way I could if healed. 

 

*In the meantime I do literally everything I can on paper and small bits I can do "outside" to execute for my future so when I can hit the ground healthy I'm on course and not floundering going "I'm healed now what?" You know what I mean?

I really appreciate this thread. 

 

If I get a window as I have always been constant chronic, seriously, I have a place to go.......alright guys!! I'm comin around!!

 

Thanks Albie. 

I'll throw my hat into this ring...

 

I'm just over 1 year free from Klonopin.  (I used a "low" dose, 0.5 mg. daily for about 2 1/2 years.)

 

My biggest recurring issues are severe anxiety, food sensitivities (dairy, soy, some beans, some nuts, shellfish) which I never had before, and terrible sleep patterns where I wake up with a racing heart.  I also sometimes get periods of rapid, pounding heart and palpitations.  I also get a racing heart when standing.  It mimics POTS (postural orthostatic tachycardia syndrome) but it's not all the time.  I also get aches in my gut, just below the belly button.  It's like I feel jolts, or surges of something down there.  Almost like a crawling zap.  And my BP is up because of the lack of sleep and overall misery I feel.

 

I feel I'm worse off now than I was at month 7 or 8.  The anxiety is just awful.  Sometimes I get a small reprieve and feel almost perfectly normal for a few hours.  It never lasts.  In fact, as I write this I would say I feel 80% good.  Earlier today I couldn't even get out of bed for too long. I felt awful and VERY anxious.  I would have called myself at 20% this morning.

 

I'm sure there are other issues I have, but they all pale in comparison to the aforementioned.

 

I have done all the right things for my body.  I treat it well.  I eat very healthy and get a complete mixture of nutrition.  I gave up coffee and caffeine.  I gave up sodas.  And I still feel like I'm going backwards.

 

I'm almost convinced I have another medical issue - but my GP doesn't agree.  And going into the doctor's office just sends my anxiety through the roof.

 

Just a short 3 years ago, I could fly around and travel like nothing.  Now, I am afraid to leave home for too long.  When I do have to travel for work, I drive everywhere.  A plane ride would do me in.

 

 

My turn. Started with ambien because I could not sleep then doctor switched me to Xanax. Took .5mg off and on for a little over 2.5 years then this past sept 20 went c/t.  Not be because I'm some kind of tuff guy...I just didn't know any better.

 

The first 2 weeks were great and I thought this was going to be easy the around day 16 all hell broke lose. I did get windows fairly frequently during this time but that window slammed shut about 45 days ago and has yet to reopen.

 

My biggest problems now are physical with severe muscle/joint pain, cold & numb extremities, all kinds of digestive issues and now my face/neck/ears are constantly red and I have the low grade fever and ever-present headache.  The good news is I have no problem falling asleep and. Luke sleep all dAy. 

 

I've tried all kinds Of self help remedies and none have worked so I'm hoping that time truly does heal all wounds.

I'm 15+ months off and feel I'm in protracted wd.  Some of my earlier symptoms - anxiety, skin issues, insomnia, tooth pain, - have gone away.  My worst symptom is still with me but getting a tiny bit better.  It's burning, tingling skin that can get quite painful.  I have also felt very hot for the last 6 months and I've had that checked out since it doesn't seem to be a common symptom. Gastro issues continue to be a problem.  I had awful insomnia for the first 4 - 5 months, but that is only intermittent now.  So, I can say that I feel a LOT more energetic and enthusiastic about my day to day life, and that has helped me accept the other symptoms.  I'm hoping that as each month goes by my burning skin will start to heal.  I'm 75 and have read that the average length of the protracted wd for my age group is 21 to 22 months - so I guess I have a way to go.  I'll get there - we all will. 

 

Paresthesia

I'm in.

 

Here is my 10 month update, essentially. I'm about 30% healed. I still have had head stuff and physical.

 

I'm glad you started this thread, vertigos  thread was good but old. Hopefully we can keep this one going

 

http://www.benzobuddies.org/forum/index.php?topic=43135.0

Soon to be 24 months here.

 

I during my days i feel thick headed, slight DR, slight headache, cognitive dysfunction, extremely heavy, muscle tension, benzo belly, vibrations, and fatigued.  Some days are better than others.

 

At nightfall, i get hit with mod/strong DR, intrusive thoughts, internal pressure, major abdominal destention, insomia, strong muscle aches, sometimes RLS, and waves of anxiety along with what i mentioned above but alot stronger.

 

I have made alot of improvements, but frustrated now with how long this is taking.  I want to get on with life already!!

I'm 15+ months off and feel I'm in protracted wd............

 

I have also felt very hot for the last 6 months and I've had that checked out since it doesn't seem to be a common symptom.

 

Paresthesia

This doesn't matter as we can still all listen, love and support one another. I'm just throwing it in so those that are new and below the timeline of what is considered protracted withdrawal, realize they are in post withdrawal frow a benzo if under 18 months. It's not "technically" called protracted withdrawal YET. That's the only reason I brought it up, to explain the timeline for the term. That's all. Not to dissuade from sharing. 

 

Therefore you may be out of "post" withdrawal before the "protracted" withdrawal timeline starts. Not to say that makes it any easier. Withdrawal for one day is unnecessary and tough enough.

 

Believe me, I'm not proud or happy about posting being this far out.

 

Anyway, you're close Paresthisia. And I am saddened and shocked you are 75 years old, in your golden years going through this. I am so sorry.  :'(

 

I was fever but no fever symptom for well over a year among other things. I didn't see it often either for that type of length and if that's what you were describing I wanted to validate you. Occasionally I'd get a low grade on a thermometer. Regardless of registering though, I always felt like I had a fever. Hot skin. And felt toxic virused. It could be a late "new symptom" for you coming in at 9 months out which was 6 months ago. Many of us get later symptoms added. I did. That happens. I'm glad you're sleeping more too. Thankgoodness your insomnia is now intermitten.

 

Matthewonline I was severe chronic at 12 months and got 2 new physical symptoms at that time frame. So I understand what you are saying feeling worse at 12 mos than you did at 7 - 8. Though I was in no way feeling good before that, I'd started sleeping. But I had strong painful neuro stuff showed up and got short to none or broken sleep at 12 months out and noisy head and ears. More physical head stuff @ 12.

 

Sorry Sooner, you got the c/t huh buddy? We all know where you're at. Keep sleeping. that's where you'll get healing time. If you can sleep, no guilt, sleep. You're toxic sick too with the fever huh? Ugg.

 

Whoopsie, I know where you live, still. Right? Too long.

 

Wellness, you too with the physical head huh? That's been my WHOLE withdrawal. Sorry buddy. Hard when you're still so far out at 10 months. (((Wellness))).

 

Believe buddy, you at 24 and me one week shy of 26. We have a lot of different stuff going on but who cares right? I hear ya, "we need a life already!" Slowly slowly huh believe?

 

Hi Albie, I hope you don't mind me talking to everyone here like this. How are you?

 

Love you guys, xoxo

We'll make it. I'm just shaking my head out of words........... so many of us strangers you know?

 

:smitten:

Hi,

Think I will add my name to this.  I am now 21 months off now after a 14 month taper so my life has been on hold for now almost 3 years. But, I see the end coming soon .  I have heard that alot of people see a turning point around the 2 year mark.  Maybe we are not the minority.....food for thought.  I was also on a high dose for a long time and had a rediculous tolerance.  80 mg. of valium did not even make me tired or have any effect.  Today and yesteday were great days for me.  I call them low, medium and high days.  I almost always have some symptoms, but they are pretty much nonesixtant on low days which I had today and yesteday.  I pretty much have the head symptoms such as tooth nerve pain, clogged ears, numb gums and salivary gland issues and some mild itching at night.  Thank God all the DP and DR left.  I would say I am about 90 % healed am driving more and even going out and enjoying life again.  But, I have learned that with the withdrawl syndrome that things can change over night and how I feel today might not be the case next week.  So, I am greatful for the good days as they come.  Must say that I am seriously weary of this though.      But, we will get better.  That's a given.                          Ginia

Hi Buddies,

 

I was going to reply to posts to this thread one by one, but with the site being down and, with duty (aka: work) now calling, I'll have to try again later.

 

So for now, I'll just say thank you very much for replying and say that with the number of us that have already replied to this thread, I think it's safe to say, that there is a pretty significant subset of BBs in this group, experiencing Protracted Withdrawal. And, while that PW may not be the best news for us, I'm really hopeful that in addition to all of the means of getting support on BBs, perhaps we can continue to support each other over the long haul within this thread.

 

Thank you very much for replying and hang in there.

 

We've made it this far and I think we can all get through this together.

 

Best wishes and talk to you again soon,

 

Albie

Albie - thank you so much for starting this thread - I am 15 months and two weeks benzo free, not legally

protracted yet, but feel like I am.  I don't post too much on the forum anymore because I feel like there is no place for me here anymore - I mean, what can anyone really say anymore when it goes on this long?  But we long time sufferers STILL need support.   

    MatthewOnline - so glad you listed your sx - the sentences where you described the cramping below your belly button is exactly what I have - it starts out as a cramp and then surges into a body jump or up to my chest and my chest goes like a jackhammer.  I have never seen anyone else talk about a sx like that.  So that was very helpful to me.

      I guess I believed the Ashton manual when she said six to eighteen months and as I near that and am not better, I just want to give up.  I do get windows - and they are wonderful.  That is something else I would like to talk about here so if anyone can comment on this, please do.  My windows are hardly ever longer than a day and a half and mostly just a day long.

Does anyone else ever get windows for that length of time.  I know several people who get windows that last for a week or two - and it worries me that my brain just won't allow that to happen for me and therefore there could be some kind of brain damage. 

      I am really down in the dumps today, crying, anxious, hopeless and depressed.  I am not like that every day and I try to remember that on bleak days like this.  I try to be positive, but it takes a lot of energy for me to get to that point and my brain just won't allow it most of the time. 

      How do we KNOW that we can really heal?  I just don't have the incentive anymore to keep doing this - but I don't know what to do - go back on the drugs, the other unspeakable alternative?  What - WHAT DO WE DO?

Thank you for listening and sorry to be so negative.

Love and courage to all of you

Hoping2BFree

....and wanted to congratulate Parasthesia for having the courage to do this w/d at your age.  I am 66 and thought I was the oldest person on the forums.....and everyone keeps telling me "well, it takes longer for older people to heal."  I hope we can help each other through this.

Hoping

Great thread Albie, not quite protracted 15+ months free but with all the sx's still coursing through my body and mind I have no doubt I will be joining my protracted buddies in a couple of months.

Amy

Technically, 11 months off, I'm not protracted, but there is no way that I'm going to be well in a month or two. There was another person on the post who pointed out that we still need support but it's difficult to get it from somebody who is are tapering. I hope we can keep bumping this post up.

 

It would be nice if we could get a chat room for old timers, I don't mean to be exclusive, but it can scare the people who are just off.  Or even a section that would be reserved for old timers where you have to have 12 months off in order to be able to access. I doubt that the moderators would go for this because they seem to support the inclusiveness of the process, but it does leave us out a little.  I don't always want to share with newbies, because they are too vulnerable emotionally, and if I told them what my symptoms were this far out, it would be unfair to them.

 

I totally agree with Wellness - but I guess this thread will have to do for now!

 

Thanks for your encouragement.  Age is a bit of a puzzle because my doctor and neurologist are having a hard time sorting out what is "normal" aging (balance primarily) and what is w/d.  This website validates my feeling that most if not all of my symptoms are withdrawal.  I can't tell you how many times I have wished I had someone who understood what I was talking about when I would relate my weird symptoms, and now I have you!  Many thanks to all of you,

 

Paresthesia

Hey everyone,

 

I was wondering how people would feel about having a forum that is more tailored to people who are experiencing protracted benzo withdrawal? I have been thinking for sometime now to create a forum where people who are still suffering after many months could go and talk with others who are in the same situation without the fear of scaring someone who is still tapering or in the early months of their withdrawal. I by no means want to take anything away from this site, i believe this is one of the best places for someone who is attempting to get off of their specific medication, but i feel there is a need for a place for those who are still dealing with symptoms many months or years after finishing their tapers. Let me know what you guys think.

 

Thanks,

Hey everyone,

 

I was wondering how people would feel about having a forum that is more tailored to people who are experiencing protracted benzo withdrawal? I have been thinking for sometime now to create a forum where people who are still suffering after many months could go and talk with others who are in the same situation without the fear of scaring someone who is still tapering or in the early months of their withdrawal. I by no means want to take anything away from this site, i believe this is one of the best places for someone who is attempting to get off of their specific medication, but i feel there is a need for a place for those who are still dealing with symptoms many months or years after finishing their tapers. Let me know what you guys think.

 

Thanks,

 

A big YES vote from me.  I think that Admin here would appreciate it as well. 

in essence BW was well suited for long timers.

Hoping2Bfree -  It took me 13 months before I had good periods that lasted more than a day or day and a half.  I am now, at almost 16 months, hoping that today will mark 1 week of good days.  That's progress!  One thing I have done over the past 2 - 3 weeks is to take passion flower and lemon balm 2x a day.  These are herbs suggested by Mayo Clinic for anxiety, and although anxiety has not been a major symptom for me, these herbs seem to have calmed down my burning skin.

 

Paresthesia

Thank you for that tip Parasthesia - can you tell me how you take the Passionflower and Lemon Balm - is it true herbs that you steep in water, is it a tea that you buy - how do you take it and how much?  Thanks so much - I will try it asap - I have horrible anxiety...so lookin forward to it. 

Hoping2BFree

I just wanted to say ((((HIGUYS)))). xoxox

Please post the information you got from the Mayo Clinic about passionflower and anxiety. Reducing the anxiety by a few notches wouldn't hurt one bit.

 

I'll my protracted friend, are we all still having sleep issues?

I sure am, I don't get anxiety, it's my protracted head stuff. I feel it, it's so so strong so I only sleep broken short. A few days it's lightened up a bit "slower" movement, to allow more but it's like I sleep 12am - 2 - 3- 4 am. Then that's it. Or I've FINALLY gone until 7am but only three days in 3 weeks. Otherwise I average 4.5.  But so so broken. It's like in and out, I lay awake, in and out. Cycling.

 

Yesterday I was exhausted so slept, 7:30pm - 11  pm. Up until 4 am then back to sleep till 5 - 6:30 am.

 

It's ridiculous.

 

If I don't sleep when I can and I actually finally feel tired, I take it. The early evening sleep feeling is a second time thing, so I jumped at the chance to catch some zzzzz's knowing I may not sleep all night. I've held out once before and it did no good as it didn't make me sleep any longer or later forcing myself to stay awake the one other time the early sleep feel was so strong.

 

It doesn't at all feel restorative for me. My head is so helium and loud. Pressure and things move fast. It's like I dream,  & sometimes it feels like a "twightlight" not quite sleep, but I think it is "light" sleep. I just NEVER feel refreshed.

 

My brain "hates" waking every hour. It's feels like it is being pulled out of sleep like an engine that is working too hard and wants to slow down. I feel the raw physical head nerves more upon waking. No biggie there but just explaining it's weird how that is when it's stronger a lot.

 

I can't wait for this to heal more for something to feel physically normal on/in my head as well as feel it "function" physically normal by slowing and quieting with no pain or pressure. It's so strange to actually feel, physical "functional" injury to the degree I do.

 

I'm glad we can talk about it. I do talk lol.........................  xoxo * I know I'll heal. At least there's a chance in six month I can say "I'm daily functional!!!". I can't wait to get to lingering symptoms.