Post Benzo Protracted Withdrawal Support Group

[[Wh...]]

Congrats on the 3 years off Jarocho!!!

[[Ne...]]

Hello, I was very glad to find this "thread" which differentiates between the initial withdrawal process and what goes on afterwards, when though the attachment to the med has been conquered, the residual toxicity is stored in our brain's fat cells.

 

Actually, when I joined BB I was surprised this support group was not a separate subject category; my symptoms during withdrawal were quite different than now, seven months post withdrawal. 

Someone mentioned that you need be 18 months "free" before it is considered "protracted" withdrawal, while my thesaurus defines "protracted" as "long-drawn-out..prolonged..lingering.."  I believe this is more than a semantics issue.

 

comments please,  New Life

 

 

 

 

 

 

 

 

 

[[we...]]

well, ashton published a "thing" on protracted symptoms which she defined initially protracted as 18 months, and now 12 months.  We sort of define it using her terminology. 

[[Ne...]]

Wellness, thank you for clarifying that point...In trying to write something to explain to my family what I am dealing with months after dropping the benzo, I pulled the following language from the 200 pages I've collected to explain to myself what has happened to me  :(

 

Protracted Withdrawal Syndrome:  It is first important to understand that..a syndrome is not a disease, per se;...it is a collection of symptoms associated with a particular condition where the causal mechanism is unknown...If withdrawal symptoms continue for many months after you have finished your taper, then your symptoms can be said to be "protracted"; this does not mean permanent!...Protracted Withdrawal Syndrome (PWS) is a label to indicate that you have not been lucky enough for your withdrawal symptoms to have cleared up (or largely cleared up) within some weeks or a few months of taking your last dose of a benzodiazepine.

PWS is characterised by a group of symptoms that are assessed clinically (not by blood tests etc.). Because the cause for these protracted symptoms is not understood and these symptoms go on for some time, then the term "PWS" is appropriate, but not very helpful. Some of us take longer to get better, that is all. It would be a mistake to think that you have another disease - PWS is not a disease! It is probably better to think of PWS as "protracted withdrawal symptoms", because this is exactly what they are."

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[[st...]]

HI Jaracho,

 

You are going to find some good healing in the next year.  You have toughed it out and you are winning.  Congratulations!

 

Patty  xoxo

[[2w...]]

I am almost 13 months free. I have such severe brain fog I can't even remember when I will be considered in protracted withdrawal.

 

I've read so many places how hard it is to deal with when family doesn't understand. There seems to be a shame factor in all of this.

 

I'm pushing forward......feeling rather down and discouraged but I've healed so much I have to believe that this is just another wave.

 

My worst symptoms are severe headaches/head pressure, neck/shoulder pain when I sleep and intrusive thoughts.

[[Al...]]

Hey 2WriterLou,

 

It is just another wave. Guaranteed.

 

Had so many I lost count many, many months ago. But now they're relatively rare and mild at 2 years out.

 

Things continue to get better and better... only problem is, healing isn't linear, so one never knows when or even why things ebb and flow as they do.

 

Remember one thing though, all you need to do is find some way to pass the time and enjoy life as best you can when you can, while just getting through the rest of the time. Do the time and time alone will do the rest.

 

Hang in there,

 

Albie

[[Ne...]]

Question for postmenopausal women in this protracted withdrawal support group:

What is your opinion about going on hormone replacement therapy..ie: bio-identical recipe..for repetitive clammy sweats?  (my bloodwork indicates that my hormone levels are within a normal range for someone of my vintage and the doctor is leaving it up to me. I think I read somewhere that they could rev up my nerve wracking symptoms.

 

[[2w...]]

Hey 2WriterLou,

 

It is just another wave. Guaranteed.

 

Had so many I lost count many, many months ago. But now they're relatively rare and mild at 2 years out.

 

Things continue to get better and better... only problem is, healing isn't linear, so one never knows when or even why things ebb and flow as they do.

 

Remember one thing though, all you need to do is find some way to pass the time and enjoy life as best you can when you can, while just getting through the rest of the time. Do the time and time alone will do the rest.

 

Hang in there,

 

Albie

Thank you Albie.....that was well said. You're right it's very important to stay busy, continue to live and enjoy life and I believe it's very important to find acceptance and learn how to surrender during this process. It makes things a lot easier.

 

Thanks again for your reply.

 

Love,

Lou

[[Ja...]]

Congrats on the 3 years off Jarocho!!!

Thank you!

[[Ja...]]

HI Jaracho,

 

You are going to find some good healing in the next year.  You have toughed it out and you are winning.  Congratulations!

 

Patty  xoxo

Thanks a lot Patty...still have some to go that's for sure...one day at a time!

[[2w...]]

Question for postmenopausal women in this protracted withdrawal support group:

What is your opinion about going on hormone replacement therapy..ie: bio-identical recipe..for repetitive clammy sweats?  (my bloodwork indicates that my hormone levels are within a normal range for someone of my vintage and the doctor is leaving it up to me. I think I read somewhere that they could rev up my nerve wracking symptoms.

 

This is just my opinion. I tried bioidenticals while I was on and off benzos and every time it would make my symptoms worse. I'm not sure of your age or situation but I had to have a total hysterectomy before I was even close to menopause so my situation was a little bit different. I've had night sweats while on and off benzos but they have gotten a lot better over the past year.

My hormone levels were in the normal range and I am just on a hormone patch. I just wanted to post and let you know what I went through.

 

I hope this helps.

[[Ne...]]

2writerlou, thanks for your input...New Life

[[2w...]]

sure no problem. I'm glad to help.

 

Love,

Lou

[[ru...]]

Hello everyone.

So sorry to be posting here. I'm nearly 18 months out from a 6 mo taper off 9mg diazepam. It's been very horrid with the psychological symptoms the worst. I was experiencing glacial improvement until a few months ago when I started tapering off mirtazapine, I was on 15mg for 2.5 years, and am now down to 7.5 mg.  OMG!! things have been so very hard and the days when things are not so bad have disappeared. I am doubting that I can make this- I am so exhausted from trying to get through the day....anxiety and depression are crushing me.

[[we...]]

ruralie,  The double benzo/ad taper is horrid.  Just know that it is drug induced, this is not "normal".

[[ru...]]

Thanks wellness. It seems that others have experienced this also. I have seen Princezz and Kmarie have had similar. It's so so hard to have felt better and then have it taken away. I'm going to hold here on my ad taper hoping that I will get a bit of a breather before I keep going down.

 

[[km...]]

Ruralie,

Hang in there is does get really rough tapering the a/d after the benzo and I waited a year to start my taper.  Yes Princezz and I are struggling but we are making it.  I'm almost 8 months out and I see some improvements with the anxiety but it's a day to day basis nothing that really sticks.  Seems I have the anxiety really bad the week before and week of my monthly cycle and it is brutal.  I can say that the a/d w/d is worse than the benzo w/d as far as mental symptoms.  Just hang in there it gets better but very slowly. 

Hugs

Kristin

[[Ho...]]

Question for postmenopausal women in this protracted withdrawal support group:

What is your opinion about going on hormone replacement therapy..ie: bio-identical recipe..for repetitive clammy sweats?  (my bloodwork indicates that my hormone levels are within a normal range for someone of my vintage and the doctor is leaving it up to me. I think I read somewhere that they could rev up my nerve wracking symptoms.

 

 

Hi New Life,

My doc had my bio-identical progesterone for a bit for my adrenals - they made me have extreme adrenaline rushes and severe anxiety.

That was when I was 5 months off.  I had to stop. Hope this helps.

 

Christina

[[Ne...]]

Regarding hormone replacement while in PAWS, the consensus seems to be NOT TO..unless there is definite evidence that ones hormone levels are extremely low..which, apparently min are not.  Thanks for the input.  NL

[[...]]

Hi all,

 

Almost 28 months free.  Over the past month I have notice things changing which is great because from month 18-26 I was completely stagnant and lost almost all hope. 

 

For the most part, I have some days where I feel pretty good but my CNS is still so very fragile.  It's like, if I stand still and don't move, all is well, but add any normal life stress and I'll have symptoms.  Can I get off this merry-go-round, please??  28 months is a looong time to be in constant motion but getting nowhere.

 

Chemicals seem to be a real problem for me, not as bad as the first year, but still bad.  My ears have never once stopped ringing this entire time and that is getting old. 

 

Also, has anyone noticed getting an increase in symptoms while out at the store?  Do you notice it has anything to do with your eyes moving quickly from left to right while trying to making a decision with many options available?  I just recently connected those dots and it happens every time.  I start to get dizzy, irritable, overwhelmed.  The only thing that helps is to hold onto something and close my eyes for a few minutes.  What is that?  Anyone else get it?

[[li...]]

LI23 Your post reminded me that I had exactly the same symptom in supermarkets of being overwhelmed by the sheer quantity and colour of good on the shelves that had my eyes spinning and my head dizzy. I used the same tactics as you to get over it. I'm glad to say that it's gone and I haven't noticed it in months. There are so many symptoms that you can even forget you ever had one when it goes. You'll be OK on that one I think. It'll go.

[[Ja...]]

LI23, I noticed the eye thing when I was chatting on my web cam the other day. It's as if I hard time staying focus and mostly I bet it has to do with running throughts of anxiety. One good exercise would be to stare at a nice painting and see how long you can look at it without moving your eyes. The more I read about neuroplasticity the more I believe in these type of exercises and how they may help recovery.

 

Ed

[[ru...]]

Ruralie,

Hang in there is does get really rough tapering the a/d after the benzo and I waited a year to start my taper.  Yes Princezz and I are struggling but we are making it.  I'm almost 8 months out and I see some improvements with the anxiety but it's a day to day basis nothing that really sticks.  Seems I have the anxiety really bad the week before and week of my monthly cycle and it is brutal.  I can say that the a/d w/d is worse than the benzo w/d as far as mental symptoms.  Just hang in there it gets better but very slowly. 

Hugs

Kristin

Thanks Kristin,

I'm stopping where I am with the AD taper to see if I can get some relief before I go lower. I waited 14 months before I started....bloody drugs! I'll just keep holding on. I'm so glad that yourself and Princezz are getting some relief. My cycle seems to have an impact too, but for me it's most commonly the first 2 weeks of my cycle that is the most anxiously awful. I'm sure that I'm perimenopausal and that this is having an impact.

[[st...]]

Hey guys,

 

Well looks like this wave still continues...things got really rough last night (physically) so I am guessing this is one of those flaring waves.  I haven't had one of these since last November and this one has been really bad.  I am trying to stay hopeful that after this is over that maybe more receptors have come online and I will start to feel better.  So in some ways I am glad for the wave since I have remained at such a constant plateau for SO long.  But on the other hand while I am going through it I think Holy Cow!  When will this end???  This wave has been like waves I have had in the beginning!  But over time I have read on this site and others that it can get really bad towards the end so these are the things I keep telling myself to console me. 

 

We must be really strong people.  To endure this kind of agony for so long....but the pattern has always been that things improve although very slowly so I am trying to stay strong knowing this....

 

I just still have such a hard time believing it.  I walk around for the most part 80% healed most of the time.  And I have had a hard time being patient throughout this long plateau.  But yesterday when I got hit with just about every physical symptom imaginable and into today, well, even my patience is being tested....

 

Sorry, I just had to get this out.  Sorry if it sounds like rambling....I just wonder if anyone else feels like this?? And I wanted to post partly to help others that may be this far out and going through the same thing.  I will report back any progress made when this wave leaves.