Post Benzo Protracted Withdrawal Support Group

[[we...]]

thanks for posting.  It is comforting to know what others are going through.  It's forums like this one that give us the courage we need to succeed.  What a long wave, geezzz.  Hope it ends soon for you. 

[[st...]]

Thanks Wellness, I'm sure it will end in time.  I just never knew that it would take so much of it lol.  I know it will end eventually but it sure is rough when you're going through it and when you are used to feeling mostly good to being back in the throes of something so awful.  But maybe being at the 24 month off mark is bringing this on and maybe it's nearing the end (I hope!).  Fingers crossed.

[[Wh...]]

Hi Stronger ... thanks for posting.  I identify completely with what you're saying.  I'm in one now after 2 weeks of feeling 90%.  Feels like back at the beginning.  The hard part is that I forgot how I coped and I'm so mad that this happening again.  It may be my own doing because I had a couple of drinks one night.  Can't do that I guess.  Dammit benzo's!!!

[[to...]]

I just want to ask something I am 21 months off....do you get strong waves out of the blue without doing anything to aggrivate the sxs or you do?....cause I know as we get better and better we eat or drink stuff that makes things worse? like 10 days ago I ate nuts and I was feeling better before it and it jacked me up pretty bad and after a while things get settle again....so I write about the things I eat and drink and when I feel good I experiment with stuff....hard not to do it...but we have to keep the pace we will get there

[[st...]]

Yeah Whoopsie you described it to a tee!  Just like being back at the beginning after just dealing with the normal chronic/plateau stuff which I can normally cope with and still live life.  And you're right....how we forget to cope....have had to go back to laying around the house this past week but hopefully this will ease up in the next couple of days.  Doing nothing strenuous for sure.  Hope it passes for you soon too!  Oh and yeah I haven't touched alcohol this entire summer even though I have been so tempted with all the yummy fruity drinks out there!  I just know if I do I will usually suffer for a few days so right now it hasn't been worth it to me.  I know....frustrating!

 

Tommy I get what you are saying as well.  There is definitely no predicting these waves.  I haven't had one since November that I noticed.  Was mostly just at my normal plateau.  I will say that I had been overdoing things this summer so that may have contirbuted to this one.  But I can usually eat pretty much anything in moderation and have caffeine in the mornings/noon and be just fine so I don't think that's what triggered it for me. I'm really hopeful that it's just more receptors coming online and am anxious to see what comes after all this pain/wave....this has been the usual pattern for me though when these big waves hit.  It's just been crazy this time.  But you are right....we will get there no matter how long it takes right?  Don't be afraid to experiment though....I had to do that for a long time until I could tolerate sugar, caffeine, etc.  and I still can't overdo it really.

[[ro...]]

Hey Fellow Longtimers,

 

I am 27months out and I am back at day 1 in absolute torture of a wave.I may have brought this one on though,had surgery 3 weeks ago and was ok for a week then I started on the supplement regime to prevent a recurrance of the problem I have.

My Dr. gave me a natural anti-inflamatory,folate drops,vitamin D,L glutamine,plus I started adding a tablespoon of Tumeric to my meals-suppose to help with inflamation.

Well I guess Duh!!! I over did it a week plus after starting this protocol whamm,a major increase in symptoms!!!

Unbelievable anxiety,dizziness,insane thoughts completely agitated,deja-vu acute withdrawals at 27 months off!!!

I got scared and stupid thought I could handle it-NA!!!!

i WILL GLADLY TAKE MY CRAPPY FEELING DAILY PLATEAU BACK!!!

Rondomanic

[[Ja...]]

Hi Ron, sorry about the symptoms coming back in a "nasty" way.  How long do you have to take those supplements? Maybe once you're off then you can start feeling better...just a thought...

 

Ed

[[ro...]]

Hey Ed,

 

I only took the supplements for a week or so then Bam!!!!

 

I am off everything,ya know since the beginning of this horrific episode I must have spent $1000 or more on supplements either my own idea to try or my Docs.

 

I am convinced now more than ever less is more regarding withdrawls at least for me!

 

Rondomanic

[[Ho...]]

Hey Rondo, I hate to hear about your return of symptoms. I know how discouraging it can be. I am only 2 days behind you and I'm also getting hit pretty hard.

 

Maybe since we are a long way out, this won't last too long. 

 

Feel better soon,

 

 

Donny

[[to...]]

Yeah Whoopsie you described it to a tee!  Just like being back at the beginning after just dealing with the normal chronic/plateau stuff which I can normally cope with and still live life.  And you're right....how we forget to cope....have had to go back to laying around the house this past week but hopefully this will ease up in the next couple of days.  Doing nothing strenuous for sure.  Hope it passes for you soon too!  Oh and yeah I haven't touched alcohol this entire summer even though I have been so tempted with all the yummy fruity drinks out there!  I just know if I do I will usually suffer for a few days so right now it hasn't been worth it to me.  I know....frustrating!

 

Tommy I get what you are saying as well.  There is definitely no predicting these waves.  I haven't had one since November that I noticed.  Was mostly just at my normal plateau.  I will say that I had been overdoing things this summer so that may have contirbuted to this one.  But I can usually eat pretty much anything in moderation and have caffeine in the mornings/noon and be just fine so I don't think that's what triggered it for me. I'm really hopeful that it's just more receptors coming online and am anxious to see what comes after all this pain/wave....this has been the usual pattern for me though when these big waves hit.  It's just been crazy this time.  But you are right....we will get there no matter how long it takes right?  Don't be afraid to experiment though....I had to do that for a long time until I could tolerate sugar, caffeine, etc.  and I still can't overdo it really.

 

Stronger:

Thanks for the explination it assured me very much: my humble opinion is that out GABA receptors are not YET at the normal levels that will counter the excitetory transmitters....that's why when we do things or eat or drink stuff that aggrivated or erritates mainly the stomach...which is our second brain...

 

I think that our receptors are still off limits so it can't yet quietly calm us down...as for food I think I will give my self some time until I experiment more...I just want to see some more improvments on my baseline...it feels good when you don't feel your stomach )))

 

I eat vegatable (summer squash) very soft on the GI system and cornmeal with some seed and wheat flour Geluten free I buy, and I bake them myself...with those at the moment I still get sxs...but less in intensity and the duration is less...but when I tried the Almonds and walnuts they got me soo bad even the coping techniques didn't work for this ...I even didn't have a wave like this for months...and I knew the reason, is that they were raw and offcourse the fats hard to digest....I am glad you starting to eat everything and drink Coffee I am dying for one...I guess my time will come sooner that later.....before these drugs I was eating like a crocodile everything no limits and alchohol too...we just have to give our bodies what it can handle at this stage thanks for the reply

[[...]]

Hey, all my heroes...

my hub just ran out the door screaming "I can't go back there!!!!" and jumped in the car before we could stop him and drove down the road screaming like a mad man. We had an argument...or more like it was all my pent up frustrations let loose about how he's been doing better than I am...apparently not. He was fine and then turned in a split second.

 

He called later to say he was safe...but I can't #*@% believe this is happening again at 31 months off!!!!!  Does anyone still not believe there's a hell? Because whatever the root source of this evil needs to be eternally banished in my weary, fed -up opinion.

 

Anyway...is this unheard of for any of you this far out to have this happen after being okay for months? I already know the answer...I've been here for years now...just want some kind of encouragement and acknowledgement of suffering from the best people on earth. (You all are, ya know.)

 

He was only on EVIL ativan for 5 months mostly trying to get off. 

Are our lives permanently ruined? or does it just feel that way right now? Will I always feel like I'm in post traumatic stress? Does it EVER go away? Hasn't it stolen enough from us?

 

For all you people who think it's scare tactics to tell the truth about c/t ...well...don't read any of my stuff. This is among the worst thing that could happen to a family. Period.

 

Thank you, dear, dear Colin & mods for keeping this place going...there is no other help...and I feel a tiny bit better already just having those who know to rant to. Love you all!

 

Puffin(BW 's wife)

 

[[km...]]

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?

 

I have the same problems in stores like you described.  I also get clammy and sweaty.  Hang in there.

Hugs

Kristin

[[ro...]]

Hi Puffin,

 

Well the answer regarding when is it truly over a Doctor friend who has quite a bit of knowledge about Benzos and there aftermath shared with me sometime ago a very sobering facts based on actual cases.

First your husband based on what you said was fine for an extended period that is fantastic,beyong great news.He is officially in recovery final stages-celebrate that a huge blessing.

But what was shared with me is we heal by way of threshold principle increments of sorts very tiny minute percentage changes in our brains-this explains windows of sorts-back and forth quite small a differnece in threshold and we can feel more like ourselves and it also works the opposite.

 

Stress is the main catalyst for many to cross back this tiny threshold to hell,and stress has many forms for each of us-our DNA writes that script.

Anyway after symptoms subside for an extended period this is just a transition period again of sorts-the way it was explained to me a Remission Period.

How long we experience a remission period I am sure varies but the timetable quoted to me was

2-5 years to completely recover our CNS after we are no longer symptomatic.

 

Translation we need to be very gentle with our bodies and brain for an extended period of time after we feel better -and well if you broke your arm-had it in a cast then when out after the cast was removed and started working that arm again hard well can re break happens all the time.

 

Your husband will come down to baseline and feel better but you both need to be very careful about stressors-the yellow caution flag is out we can relapse I have heard of too many real stories regarding that.

 

He is very lucky to have reached remission ,treat  it with

the upmost respect-

I soo wish all of us here would reach Remission and give our bodies ,mind and souls a break from this agony.

Peace,

Rondo

[[Wh...]]

Hey, all my heroes...

my hub just ran out the door screaming "I can't go back there!!!!" and jumped in the car before we could stop him and drove down the road screaming like a mad man. We had an argument...or more like it was all my pent up frustrations let loose about how he's been doing better than I am...apparently not. He was fine and then turned in a split second.

 

He called later to say he was safe...but I can't #*@% believe this is happening again at 31 months off!!!!!  Does anyone still not believe there's a hell? Because whatever the root source of this evil needs to be eternally banished in my weary, fed -up opinion.

 

Anyway...is this unheard of for any of you this far out to have this happen after being okay for months? I already know the answer...I've been here for years now...just want some kind of encouragement and acknowledgement of suffering from the best people on earth. (You all are, ya know.)

 

He was only on EVIL ativan for 5 months mostly trying to get off. 

Are our lives permanently ruined? or does it just feel that way right now? Will I always feel like I'm in post traumatic stress? Does it EVER go away? Hasn't it stolen enough from us?

 

For all you people who think it's scare tactics to tell the truth about c/t ...well...don't read any of my stuff. This is among the worst thing that could happen to a family. Period.

 

Thank you, dear, dear Colin & mods for keeping this place going...there is no other help...and I feel a tiny bit better already just having those who know to rant to. Love you all!

 

Puffin(BW 's wife)

 

Oh BW, I'm so sorry you have to go thru this with your husband.  I wish I knew what to say and how to best support you.  This whole thing has been very traumatic for you too!!!  I love you BW. 

 

[[ma...]]

Hi Puffin,

 

Well the answer regarding when is it truly over a Doctor friend who has quite a bit of knowledge about Benzos and there aftermath shared with me sometime ago a very sobering facts based on actual cases.

First your husband based on what you said was fine for an extended period that is fantastic,beyong great news.He is officially in recovery final stages-celebrate that a huge blessing.

But what was shared with me is we heal by way of threshold principle increments of sorts very tiny minute percentage changes in our brains-this explains windows of sorts-back and forth quite small a differnece in threshold and we can feel more like ourselves and it also works the opposite.

 

Stress is the main catalyst for many to cross back this tiny threshold to hell,and stress has many forms for each of us-our DNA writes that script.

Anyway after symptoms subside for an extended period this is just a transition period again of sorts-the way it was explained to me a Remission Period.

How long we experience a remission period I am sure varies but the timetable quoted to me was

2-5 years to completely recover our CNS after we are no longer symptomatic.

 

Translation we need to be very gentle with our bodies and brain for an extended period of time after we feel better -and well if you broke your arm-had it in a cast then when out after the cast was removed and started working that arm again hard well can re break happens all the time.

 

Your husband will come down to baseline and feel better but you both need to be very careful about stressors-the yellow caution flag is out we can relapse I have heard of too many real stories regarding that.

 

He is very lucky to have reached remission ,treat  it with

the upmost respect-

I soo wish all of us here would reach Remission and give our bodies ,mind and souls a break from this agony.

Peace,

Rondo

-------------------------------------------------------------------------------------------------

rondomanic53

what a great piece of information.  i wish we had more of it on this forum because knowledge is truly power. 

[[st...]]

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

[[Ne...]]

Stoneyco, thank you for leading me to the following from Rondomanic (I hope it is ok to do this): This should be placed on many BB threads.

"..we heal by way of threshold principle increments of sorts very tiny minute percentage changes in our brains-this explains windows of sorts-back and forth quite small a differnece in threshold and we can feel more like ourselves and it also works the opposite. Stress is the main catalyst for many to cross back this tiny threshold to hell,and stress has many forms for each of us-our DNA writes that script...after symptoms subside for an extended period this is just a transition period again of sorts-the way it was explained to me a Remission Period. How long we experience a remission period I am sure varies but the timetable quoted to me was 2-5 years to completely recover our CNS after we are no longer symptomatic. 

[meanwhile]...we need to be very gentle with our bodies and brain for an extended period of time after we feel better -and well if you broke your arm-had it in a cast then when out after the cast was removed and started working that arm again hard well can re break happens all the time."

 

[[...]]

"Oh BW, I'm so sorry you have to go thru this with your husband. I wish I knew what to say and how to best support you. This whole thing has been very traumatic for you too!!! I love you BW."

 

Thank you so much, Whoopsie! You did say the right thing...I love you too. Just needed some love and validation. It's just the worst when it all returns, isn't it? I heard you're going thru it again also. Wish I were there for a real long hug for you too.

 

He's better now btw. Hope tomorrow is okay.

 

puffin

[[Wh...]]

You're so welcome Puffin ... happy I could be there for you because you matter too.  You've been right down in the trenches for so long and must be played right out.  Keep reaching out when things get too tough okay?

 

[[to...]]

When did your brain stopped telling you WHAT IF!!!

[[st...]]

Hey guys,

 

So I am looking for some more reassurance today.  For about a month now I have been in this horrid wave.  One of the worst I have ever had.  I thought it had flared at the beginning of this week and was on it's way out but boy was I wrong again.  Last night was what I have to say is one of the worst nights I have ever had in all this withdrawal experience.  I found myself unable to sleep.  Then my chest started hurting, tinnitus started, skin was tingling, got that agitated feeling, and probably what was the worst was it felt like my skin and brain was on FIRE!  I have never had that much pain and was seriously worried that something else was wrong...but took my temp and blood pressure and everything was mostly normal except for a racing heart.  I woke up with my nostrils feeling like someone took a blowtorch to them and the worst pressure and pain in my forehead that I have ever had.  Does this sound familiar to anyone???  Most of my remaining symptoms are head symptoms so that is the only way I can explain that maybe this wave is trying to heal that area???  I just don't know but anyone here had that burning and inner inflammation in the head?? 

[[to...]]

Ya I used to have it but gone for me....it will go for you...do you still having any stomach issues...probably you ate something that stimulated you?

[[ma...]]

Hey guys,

 

So I am looking for some more reassurance today.  For about a month now I have been in this horrid wave.  One of the worst I have ever had.  I thought it had flared at the beginning of this week and was on it's way out but boy was I wrong again.  Last night was what I have to say is one of the worst nights I have ever had in all this withdrawal experience.  I found myself unable to sleep.  Then my chest started hurting, tinnitus started, skin was tingling, got that agitated feeling, and probably what was the worst was it felt like my skin and brain was on FIRE!  I have never had that much pain and was seriously worried that something else was wrong...but took my temp and blood pressure and everything was mostly normal except for a racing heart.  I woke up with my nostrils feeling like someone took a blowtorch to them and the worst pressure and pain in my forehead that I have ever had.  Does this sound familiar to anyone???  Most of my remaining symptoms are head symptoms so that is the only way I can explain that maybe this wave is trying to heal that area???  I just don't know but anyone here had that burning and inner inflammation in the head??

-------------------------------------------------------------------------------

like you, i'm off benzo for a significant time,  and like you most of my current symptoms are related to the head.  energy is pretty good, but foggy head, tinnitus and peculiar sleep pattern remain.    it seems that physical OVEREXERTION sets me back.  if i do too much in the gym i get more sore than i should be, and the hurt lasts longer.  but things are so much better.

[[st...]]

Thanks guys....yeah right before the beginning of this wave I was pushing myself physically.  I knew I was getting some of the old symptoms but a lot of times I am able to just push through.  So I kept ignoring them and swimming, etc. and that's when all you know what broke loose.  But I have mostly rested all week long and it's still not helping.  The only thing I can determine from all this or at least hope for is that maybe this is the last big hoorah of withdrawal since I have read others say that you get hit hard in the end before you get totally healed.  I have had some of the stomach upset also with this but no throwing up yet thankfully although the nausea can be intense at times.  I can tell it is overstimulation of the cns because I am having the twitches/vibrations too.  You name it, over the past month it's like a little of everything from the beginning has hit me with this one!

 

I don't know how people make it through that burning brain thing though!  I have always had part of this but not flared to that extent where the pain was so intense!  And at the base of the skull in the back too!  OMG!  The worst pain I have EVER felt in all this I think besides the stomach stuff.

 

Sheesh guys!  This has been just crazy! 

[[ro...]]

Hi Stonger,

 

I am in a very similar wave,although I may have caused mine with supplements,and tumeric for unrelated health issue just not sure anymore really.My worst wave in over a year maybe my worst from the get go!!

I am 27 months out ,all this started a week ago,mind you I wasnt great before this increase in symptoms.

Anyway started with an increase in dizziness,stuffed head feel,pains in back of my head,then couple days later,anxiety really took off along with heavy head sensations,just feels like my brain is just bruised badly to put it simply.

Almost all my strength is gone,coping thru this is just soo difficult -just so burned out from it all also.

I hope we both recover from this soon and just really start to feel better.

Normal Life Wishes,

Rondo