almost 27 months off

[[Gu...]]

Anybody else struggling this far out? I have gotten so much better in regards to symptoms my fear is gone. Sleep is mostly back to normal except maybe a day or 2 here and there. My looping thoughts seem to be gone, my extreme depression has gotten better. Im still stuck with head pain or pressure. Some backpain. DPDR and this horrible apathy and some cogfog here and there. It is very discouraging being this sick this far out. In the beginning of this month I had a nice 6 day window where I thought I was almost there. Then I had a week of waves then another 2-3 day window where I felt so close to being healed. Now I have been in a brutal wave and this is day 6 of it. Anybody else struggling this far out? It makes zero sense.

[[Bu...]]

Hey @[Gu...],

I'm so sorry you're still dealing with all this.  That's gotta be very frustrating.  You might look into the Long Haulers group.  I bet there are some folks there that can really relate and be helpful.

 

Oh, my apologies, I should have checked first, but I just saw that you are already a part of that group.

I would imagine they are still the folks who could understand your challenges the best.

Edited December 27, 2023 by [Bu...]

[[de...]]

Unfortunately there are some of us who continue to struggle many months after we have stopped taking a benzo.   At 27 months off I am sure you are frustrated with the continuing waxing and waning of symptoms.   This is very typical of recovery.   Your brain is trying to find its way back to normal functioning.   The fact you had a six day window is really encouraging.     Like @[Bu...] said, the Long Haulers group is where you will probably receive some good feedback.   Lots of members there who have been at this for a while.   

[[Gu...]]

Ya its insane how long this takes. I'm much better today thank god. Nice window opened up for me during the day today which was beautiful. My windows seem to be getting ALOT clearer but the waves stay very vicious. Im hoping this is the one the stays open. 

[[dj...]]

Gulled1, I’m sorry you’re struggling that far out.  I’m 15 months out and still acutely ill.  I don’t get windows but just different symptoms rotating in and out and hammering me every 2-3 days.  I can do basic stuff but am very non-functional.  
 

It sounds like it has improved so that’s good.  I guess it could all disappear tomorrow, right?  You never know with this stuff. 

[[Gu...]]

1 hour ago, [[d...] said:

Gulled1, I’m sorry you’re struggling that far out.  I’m 15 months out and still acutely ill.  I don’t get windows but just different symptoms rotating in and out and hammering me every 2-3 days.  I can do basic stuff but am very non-functional.  
 

It sounds like it has improved so that’s good.  I guess it could all disappear tomorrow, right?  You never know with this stuff. 

Ya man around the 2 year mark is when I started to get windows. We will heal just a question of when i guess.

[[dj...]]

24 minutes ago, [[G...] said:

Ya man around the 2 year mark is when I started to get windows. We will heal just a question of when i guess.

Got it.  From what I’ve gathered anecdotally on this site, it seems the 18-24 month mark is pretty big for a lot of the long haulers with severe symptoms.  Seemingly when windows start arriving and a lot of symptoms start to lighten up.  I’ve been relentlessly hammered with stuff every day since I jumped.  It has evolved over time.  A lot of my mental symptoms have improved but the physical ones have gotten a lot worse. 

[[Ma...]]

I hope you will heal soon.

I don’t understand this whole wd I have had 3 semi windows of all 1-2 hours and beside that no improvements physically very bad with stiff body dystonia muscles pulling me and turning into stone. 
 

i don’t know what to tell you as I am only a year , but I hope you feel better soon. Maybe try to find if there are foods or activities that increase your symptoms. For me bad food makes little worse but not to the point of eating only salads and meat  low carb didn’t do anything for me

[[jo...]]

I’m 30 months. Sorry you’re also still suffering this long. I don’t get any windows and I’ve actually gotten worse in terms of physical symptoms. Windows are a good sign of healing and you could be nearly out of it. Many of us suffer for a long time unfortunately. But I hear a lot heal by 3-3.5 years which is promising. 

[[dj...]]

17 hours ago, [[j...] said:

I’m 30 months. Sorry you’re also still suffering this long. I don’t get any windows and I’ve actually gotten worse in terms of physical symptoms. Windows are a good sign of healing and you could be nearly out of it. Many of us suffer for a long time unfortunately. But I hear a lot heal by 3-3.5 years which is promising. 

What are your physical symptoms?

The big ones for me are extreme muscle tension/pain/stiffness, absolutely crushing fatigue, and random nerve sensations like prickling and electric current moving through the body. 
 

Honestly, the sense of fatigue and exhaustion is easily the worst.  Just want and need to constantly lie down.  There is a very direct correlation between my mood and this fatigue.  

[[jo...]]

@[dj...] very similar for me. Crushing fatigue, muscle pain like tightness as if my head neck and shoulders are in a vice, migraine and stabbing and squeezing feelings in my head, nausea, nerve pain has popped up and happens all over my shins, soles of feet, back, neck and head. Exercise intolerance, heat intolerance, aches and pains and prickly feelings like you mentioned 

[[Ed...]]

Did anyone here come down with COVID?

I had two moderate bouts of it - in 2020 and 2022 (despite vaccines) - and I first developed or had a worsening of a number of these symptoms while recovering from COVID - the worst being crushing fatigue, exercise intolerance, head pressure, whole body nerve pain, and also dark depression.

Two different practitioners (MD and NP) believe that I now have "classic symptoms" of long-haul COVID. The symptoms of long-haul benzo w/d and long-haul COVID seem similar in many ways to me. I honestly don't know which one I'm suffering the most from now. Maybe both?

Edited December 30, 2023 by [Ed...]

[[dj...]]

47 minutes ago, [[E...] said:

Did anyone here come down with COVID?

I had two moderate bouts of it - in 2020 and 2022 (despite vaccines) - and I first developed or had a worsening of a number of these symptoms while recovering from COVID - the worst being crushing fatigue, exercise intolerance, head pressure, whole body nerve pain, and also dark depression.

Two different practitioners (MD and NP) believe that I now have "classic symptoms" of long-haul COVID. The symptoms of long-haul benzo w/d and long-haul COVID seem similar in many ways to me. I honestly don't know which one I'm suffering the most from now. Maybe both?

It’s probably benzo injury and not COVID.  A lot of the symptoms are the same and practitioners now are way more familiar with long COVID than BIND.  I don’t know your full timeline and the correlating symptoms though. 
 

Both are possible I guess.  

[[Gu...]]

I thought id put a update so future generations of benzo withdrawal suffers don't read this terrified. After that 7 day wave I have been feeling mostly healed. I am 2 days away from 27 months off. I still get some head pressure back pain and cogfog for maybe a hour or 2 throughout the day. So im not 100% but I am super close. Best of luck everyone

[[he...]]

On 26/12/2023 at 22:29, [[G...] said:

Anybody else struggling this far out? I have gotten so much better in regards to symptoms my fear is gone. Sleep is mostly back to normal except maybe a day or 2 here and there. My looping thoughts seem to be gone, my extreme depression has gotten better. Im still stuck with head pain or pressure. Some backpain. DPDR and this horrible apathy and some cogfog here and there. It is very discouraging being this sick this far out. In the beginning of this month I had a nice 6 day window where I thought I was almost there. Then I had a week of waves then another 2-3 day window where I felt so close to being healed. Now I have been in a brutal wave and this is day 6 of it. Anybody else struggling this far out? It makes zero sense.

I am 27 months out  and same as you never ending good bad good bad good bad... fee days good two weeks bad, week good few days bad and any combination of that, just keeps flipping from one thing to the next... most of my post acute has been like this... maybe i get more often many good days in a row then before, but its still always followed by brutal waves...

[[...]]

3 minutes ago, [[h...] said:

I am 27 months out  and same as you never ending good bad good bad good bad... fee days good two weeks bad, week good few days bad and any combination of that, just keeps flipping from one thing to the next... most of my post acute has been like this... maybe i get more often many good days in a row then before, but its still always followed by brutal waves...

I’m about the same as well. 25 months off and sleep has improved. I’m doing better than n terms of hours slept but it is still light sleep. As I am waking up I get body jerks that start in my brain and radiate out into different parts of my body causing jumps and jerks. I still have horrible head pressure and loud tinnitus as well. Some days I fell almost normal though. 

[[dj...]]

On 01/01/2024 at 10:47, [[G...] said:

I thought id put an update so future generations of benzo withdrawal suffers don't read this terrified. After that 7 day wave I have been feeling mostly healed. I am 2 days away from 27 months off. I still get some head pressure back pain and cogfog for maybe a hour or 2 throughout the day. So im not 100% but I am super close. Best of luck everyone

That’s good news.  When things get bad during waves, it would be nice if we could believe ourselves that this will all lighten up if we hang on a few more days, but it’s just so hard to see through it. 

[[he...]]

14 hours ago, [[d...] said:

That’s good news.  When things get bad during waves, it would be nice if we could believe ourselves that this will all lighten up if we hang on a few more days, but it’s just so hard to see through it. 

even after a whole week of feeling really well, nearly normal, when i get a wave, even if its just one day, it feels still as horrible and like pure torture and its hard to believe i ever had a good day.

[[he...]]