It’s probably permanent

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I think after 27 months it’s a safe bet that what I am left with is permanent. There are very few stories of healing after the 2 year mark. Even the 3 year stories said they started feeling better after about 2 years but just wanted to wait to be sure. I always wonder if we are the majority or the minority. There are so few success stories compared to how many people have been on this forum. Even the big name coaches and doctors in this field have no client success stories. Look at Witt-Doerring, no successful clients on either his web page or his you tube channel. I equate this to having a traumatic brain injury and with those they say that after 2 years what you’re left with is likely permanent. I really don’t want to be a negative Nelly but after 27 months of insomnia, very strange brain symptoms, buzzing and jerking body sensations, and super loud tinnitus, I just feel like hope is gone. The only symptom that I can say has actually left for good is the akathisia. That lifted between 14 and 18 months. Since then I have had no improvement. I’m just trying to figure out how I can live any kind of life with these crazy symptoms. The only people that really understand are those of us in this long haulers group.  What do you guys do to keep yourself going everyday? For me it just my children. Even though this has made me a terrible father I know it would destroy them worse if something were to happen to me. So I drag my toxic brain out of bed every morning after my 4 broken hours of unconsciousness and try my best. It’s weird to me but my scariest of all the symptoms is that I no longer ever get sleepy. If I don’t go to bed and close my eyes and pray I would never even get any unconscious time. I guess I am just scared now of what the future holds for me. Thanks for reading this shit show of a post.

[[lo...]]

I can understand how terrible it must be trying to deal with insomnia as well as the other symptoms you describe.  What did I do to keep going?  I really don't know how I ever got through it.   Most of it is just a blur now.  I do recollect that the end of the second year was very difficult, it is natural to hope for recovery in that time frame.  In the third year I had to adjust my expectations and started to realise this was likely going to take longer.  

I am nearly 11 years off benzos.  I did come off Effexor as well a couple of years later.  At 27 months it is really far too early in this process to know what will happen with your symptoms.  At that stage I was still mostly in bed being tortured hour after hour.  It is indeed a traumatic brain injury.  I think my lowest point was in 2018, around the 5 year mark, but I had a setback at that stage, I was forcing myself to walk (a huge problem for me) and that caused another really bad reaction in my brain.  This may have prolonged my recovery process.  Since 2018 each year has got easier and most of my symptoms have either gone or are considerably reduced now.  If you want a success story where things are back to normal again I cannot give you that but my quality of life is a million times better than it was in 2018, it just isn't what I would hope for in an ideal world.  I see no reason why I should not improve even further unless I am unfortunate enough to be faced with some other health crisis.  Your symptoms may diminish with time, they usually do for most people, there may be residual problems you have to deal with but it should get easier. 

Edited February 21 by [lo...]

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@[lo...] I’m sorry to hear that you’re still in it. You’re one tough buddy. Unfortunately I’m just not as strong as you. I’ve been struggling to hang on to everything I’ve worked for but I think I’m about to lose my job and from there it will just be a downward spiral. Thank you for responding. Sometimes it’s just nice to have people respond even if there is nothing they can do to help

[[lo...]]

Edited February 21 by [lo...]

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@[lo...]yes the insomnia is what is killing me. I don’t even get sleepy anymore. My brain is just exhausted and wants to quit. Without sleep I will never recover.

[[bw...]]

I feel you. I remain sensitive at 6.5yrs off and back in acute again. Now reacting to all foods and medications. Lost my job. Lost friendships. Bassically anything. I have a chronic pain condition that cannot be treated because I react to everything now.

[[Ne...]]

Xray...you are AWESOME to keep hanging in there for your children!!  You GOT this!  It's so hard.  Believe me I know.  9 years and currently in my 6th setback.  And short term user as you.  6 months from start to taper.  I've been sick longer than I took the med for sleep.

I just really wanted to encourage to keep going as best you can!!  Someday this hell will be over!!!

KEEP BELIEVING!!  KEEP FIGHTING!!

[[Sl...]]

@[...] I am sorry for ongoing insomnia. I am 14 months out and short term user as well and insomnia has been one of my top symptom out of many others.

I went through your older posts and comments. I read you mentioning about remeron(Mirtazapine) . Do you still take them ?If so, how often? 

Insomnia, not feeling sleepy and loud tinnitus could have been ongoing due to remeron use.It is one of the hardcore AD that hits 4 different receptors at once, taking it as needed or changing doses is not recommended. AD damage people as  much as Benzo does.

I wish you speedy recovery ❤️‍🩹.

 

 

Edited February 22 by [Sl...]

[[Sh...]]

Mirtazapine is WORSE than benzos. WD from benzos is nothing compared to that.

Don't even consider unless you absolutely must..

[[lo...]]

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@[Sl...]i only tried mirtazipine for about a week. I have been completely drug and supplement free for over a year

[[ma...]]

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Thank you all for the encouraging words but I can tell this is permanent. I am slowly losing my mind like I have progressive dementia. I realize now that not everyone recovers. If it wasn’t for this unrelenting insomnia I might have a chance but recovery is not possible without sleep. I spend my days in a fog that is caused from lack of sleep. I can barely use my brain and it is slowly getting worse. I fear that it won’t be long before my brain just quits. It makes me so sad that I have put my family thru this for the last 27 months. At this point I really believe that they would be better off without me.

[[Na...]]

Sometimes I tell my wife she'd be better off without me, but she never agrees.

I bet your family wouldn't either.

 

[[Kr...]]

I.m probably not going to make it through this since you all have husbands or wives or kids. I have no one.

The odds are clearly against me. It's easier to want to give up when you have nobody to fight for, and I can't feel love for myself because of anhedonia. 

 

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@[Kr...]i think it’s the opposite. Going thru this with people that depend on you makes it so much harder. I have kids that depend on me for food, shelter, etc. That means I never have any time to spend on my recovery. I sometimes think this just makes me sicker. Of course I also think to myself, what good is it to live a life that you cannot do normal living things without making yourself worse.

[[Kr...]]

I guess. But you have kids to stay alive for.

And if being alone means more time to work on recovery, I’d be better already.

it sux both ways. I’m sorry to see you suffer, though ❤️

[[ja...]]

Hi.  Two things stood out for me....

I wonder if we are in the minority.... and your 4 hours of broken sleep.   I too wonder if I'll recover fully.  Ever.  And 4 hours broken is a triumph for me, considering the many months of zero or one or two.

I'm a 20 year benzo user, and I'm 70 now.   Xray, you and I are about the same time off.  27 months since jumping for me too.   Clearly, some of me is healing.... like you most of the akathesia is gone.

But my tinnitus remains.... and recurring waves of head pressure,  visual stuff....weakness and lately dizziness.... Just last week, I was headed into town to shop, and had to turn around because I felt so awful.  Benzo damage awful.

My sleep cycles are all over the place....for no reason that I can see.  I had given up, like you, for the umpteenth time a month or so ago.   It's a natural place to go, when symptoms are unbearable for too long.   And I concur.  Insomnia is the Worst.  

But then I slept 8 hours last night.  I woke heavy with sleep.  And this morning, I felt all things are possible.

I'm hoping both you and I will be on here down the road... that other long haulers can see and hear the hopelessness,  and then hear how that changed, and we healed.

Not to sound like a Pollyanna.... I believe our cells are affected by our psyche.... our beliefs...  I hope, my friend, that you (and me), can leave a crack open on the door of despair.... many have said healing came between the 2 and 3rd year, or the 3rd and 4th....

Big hugs... and keep checking in.....

[[Sh...]]

I totally relate to this.

Edited February 25 by [Sh...]

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@[ja...] thank you for the kind words. I hope you are right but I just don’t see it. Last night I was having major jerks during my sleep. They are very painful. They start in my brain and travel thru my body. Almost like a seizure. There is something really wrong and the doctors cannot find anything wrong. They just say they are harmless hypnic jerks. They sure don’t feel harmless to me. I think my brain is very close to shutting down because I seem to be getting worse. Sometimes I hope this is true. I have fought hard for 27 months but I am tired. 

[[ma...]]

[[Ma...]]

My heart is bleeding reading all of these posts. I only hope you can and will keep fighting, somehow keep the hope alive.

Maybe, I honestly do not know, but if it’s been a long time since you have tried supplements perhaps something has resolved within your system so that magnesium can help with sleep?

I’m at 17 months and pushing through. That’s all. Push, push, push; collapse, collapse…rinse and repeat. 🥹

[[Ma...]]

My heart bleeds too. 
I am injured 28 months ago, 14 months off. And much worse than the first months off. 
severe neuropathy, severe pain, too weak to stand; became severely obese, I have Dystonia , and I have full numbness, I don’t feel my body anymore all is damaged. I have never felt any internal sensation and my head feels as if it’s on the floor behind me. 
24/7 I feel like I have to propped up in a dark room. 
I am beyond tired and I wish that I could skeep forever but I have a child .

its unfair. I have no strength left anymore to keep on fighting

[[Ma...]]

@[...]

all I can do is send you a hug

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