Multiple long severe setbacks...

[[Ne...]]

Here I am almost entering month 10 of my 6th setback.  I only ingested 85 pills (prescribed for sleep) from start to taper and that was 8 1/2 years ago.  I still cannot believe this has happened to me or any of us!!!  It is unreal the mental torture I go through day after day...no windows...no reprieve.  Still cannot feel joy and pleasure, severe depression, alone in the world feeling and abandoned by all friends.  I have to force feed everyday and have now lost 30 pounds.  I have the benzo flu everyday, internal tremors in my arms and legs and severe, severe fatigue.  Everyday!  No reprieve from the physical ailments either.

I have healed in between my setbacks and try to believe it will happen again.  I re-read my journals from previous setbacks where I wrote about all the same tortuous hell both mental and physical and then at the very, very end finally heal!  I truly don't heal until the end...it's not over until it is over.  My last setback was 18 months long and in my journal it wasn't until the very last month I wrote that I was able to eat again and feel joy and pleasure.  In all my setbacks absolutely no windows either.

Does this seem like a rarity?  How many more of us are in these long setbacks with healings in between?

 

[[Ch...]]

Same boat, except in-between weren't really full windows. Just somewhat better. This current bad wave is the worst I've felt since 2018 and it'll be 2 years long next month. And yes, it doesn't really get more bearable until right near the end of it, usually.

You're not alone.

[[de...]]

@[Ne...]  I am so sorry about the suffering you have experienced.   I know you have probably been asked this a bunch of times, but can you tell me about your history.    I looked for it on your profile, but did not see anything about the medication you were taking.   This process is inexplicable at times.    So hard to understand the why and how.    I know it has taken me so much longer than I wanted to get where I am today, and I am still not completely well.  

 

[[Ne...]]

 

These are my previous setbacks.  Each kept getting worse and longer.  I was only on benzos (lorazepam) for sleep and only for six months including tapering.  Last crumb June 1, 2015.  I was healed and back to me by November 2015.  And then the hellish setbacks happened...unbelievable!  My history is of no medications.  I rarely even took aspirin or antibiotics.  The one time I trusted my doctor because I wasn't sleeping has ruined my life.

MARCH thru JUNE 2016
First setback - I bounced right back into life not knowing anything about setbacks so I'm guessing stress and out to eat - not always eating pure - having cocktails out with friends - lasted 4 1/2 months

JANUARY thru MARCH 2017
Second setback – Severe emotional stress daughter moved out of state with my 2 young grandchildren and had only lived 5 minutes from me and possible internal nose cream antibiotic that I used consistently and November 30, 2016 took meloxicam for severe nerve pain in hands and November 21, 2016 had x-rays – lasted 3 months

FEBRUARY thru mid-AUGUST 2018
Third setback – The end of December 2017 or early January 2018 I supplemented with 5HTP and Vitamin D - lasted 7 months - WORST!!

JUNE 2019 thru MAY 2020
Fourth setback - I started Naturethroid 3/5/19 which I believed caused setback – stopped Naturethroid 6/17/19  lasted 11 months - HORRIBLE!!  ALL SYMPTOMS!!

Mid DECEMBER 2020 thru June 2022
Fifth setback - I think COVID stress/isolation, antibiotic nose cream and Vitamin D with K supplement and fluoride treatment triggered this setback - 18 months  and this was the most ABSOLUTE WORST EVER!!!! 

 

[[Ne...]]

19 hours ago, [[C...] said:

Same boat, except in-between weren't really full windows. Just somewhat better. This current bad wave is the worst I've felt since 2018 and it'll be 2 years long next month. And yes, it doesn't really get more bearable until right near the end of it, usually.

You're not alone.

Chigrrl...I don't think there are many of us that have had healings in between setbacks.  It's so hard for me to except that 6 months of a prescription from a doctor has ruined my life for 8 1/2 years.  

It's just so unreal how our setbacks can be worse as time goes on.  Do you have any idea what may have triggered yours?  Sometimes I just think our gaba receptors are just ruined for life.  Makes me so sad.  I know when I heal this time, I have to be so strict and not jump back into life and keep eating pure and stay away from anything stressful.  I won't even be able to go out with friends like I did in the past when I healed and have a nice dinner with a cocktail.

[[Ch...]]

I was prescribed them for a few years, but I wasn't taking them every day until my taper, so yeah, I get it. It really upsets me sometimes when I see literal street drug addicts and alcoholics and people with far more complicated situations than mine heal fairly quickly. It's not that I want them to take longer...it's that I don't get why I'm still being punished. 

Mine was triggered by stress and possibly the booster. Who knows.

I don't think they're ruined for life, but I think they are sensitive for awhile until they're not. You really have to baby step into things when you're feeling better and I really wouldn't drink until your feeling 100% for awhile. It tells me you weren't healed, you were in a window. If you were healed you could do whatever you wanted without a flare up.

[[Ne...]]

Chigrrl...you are right!  In between my setbacks even though I felt like me again, I'm sure my body was/is still super sensitive.  When I heal this time, I plan on not jumping back into life and being very careful and absolutely not even one cocktail.

I've been wondering the same thing...what have I don't so bad to be so punished and for so long!!  When I first tapered off, I really thought I made it through and was done.  I had no idea I would still be suffering 8 1/2 years later.

[[Ch...]]

None of us thought we'd be here. It stinks.

I try to still do some things, even in this bad wave, but I really pace myself. You can still do things (minus the alcohol), but I'd really pace myself if I were you. If you have food issues, introduce them gradually...that sort of thing. 

In my experience, though, you can be doing all of the things and still find yourself in a wave. That's just how it works until we've healed.

[[be...]]

@[Ne...]

You said you took Naturethroid and had fourth setback. Are you hypothyroid?

I'm still trying to adjust to my thyroid meds. I never know whats causing what.

Keeping the thyroid in balance is hard work but taking the meds are even harder.

[[Ne...]]

I was stupid and asked my doctor for thyroid meds because I was so lethargic so I thought it was my thyroid and plus my TSH was always a little high.  I know now the lethargy was all because of the benzos and not being completely healed from the benzos in that area of still feeling weak and tired.  My TSH is good now even in this current setback even though I am feel physically weak and lethargic.  I eat clean and eat two brazil nuts everyday for natural selenium.  I'm almost positive the thyroid meds caused the 4th setback.

[[Ca...]]

Ranty? Nope. It's quite familiar to most of us. The day to day mental torture without a break from it. And the darkest depression and the fatigue. I've not had lot of physical issues, thankfully, just the OCD legs kicking, fidgeting. But the mental has been a nightmare of anguish straight through 7 yrs. I'm on or in bed 22/7. Most days I finally break into a cry which does help a bit so I'm lucky if that happens.

[[Ne...]]

On 24/11/2023 at 05:10, [[C...] said:

Ranty? Nope. It's quite familiar to most of us. The day to day mental torture without a break from it. And the darkest depression and the fatigue. I've not had lot of physical issues, thankfully, just the OCD legs kicking, fidgeting. But the mental has been a nightmare of anguish straight through 7 yrs. I'm on or in bed 22/7. Most days I finally break into a cry which does help a bit so I'm lucky if that happens.

I'm so, so, so sincerely sorry.  I guess I am lucky that I have had months of reprieve from the mental torture.  If only you could even just get a small break!!  No one can relate to the most hellish, tortuous, inhumane and scary symptom of post benzo induced mental torture unless you are going through it.  I personally feel so alone in the world and I dread every single day.  You are an incredibly strong human being for battling through this mental torture for as long as you have.  My heart goes out to you!  

[[mo...]]

I have now been dealing with 3 major setbacks. First when I was hit by a car three years ago. Fractured my knee and my pelvis and took many months to recover my ability to exercise walk. Second, one year ago I fainted in the street and wound up needing a new heart valve and a pacemaker and now take all kinds of heart meds - after kicking all the meds that poisoned me. I also suffered a stroke while I was in the hospital. People say I recovered from that nicely but I wonder...  My latest setback is I now have breast cancer - more meds - trying to shrink the growths by abstaining from all estrogen which is now affecting my bones which require more meds. Surgery awaits. My exercise walking (which has always been important to me) is now more difficult because of side effects from the meds. I still manage - went a couple of times cutting my distance in half. Just last week I fell again but landed in grass so I didn't have to go the ER to stop the bleeding from my mouth which I had also fractured and needed stitches in my lips because my teeth had fused into my lips. A kind man helped me stand up and kept telling me I should get checked out. I asked him to please just hold my hand when I walked back to my house. I didn't tell him I was already checked out and wanted no part of that again. It took me a good year to recover from the traumas I experienced in the hospital and then I took on the lump in my breast which they found in the hospital. Which brings me up to date. DR and DP have always been a major symptoms for me.  It all seems like a dream (nightmare) and never could I tell any medical people I was suffering from benzo withdrawal because they didn't believe how long I have been suffering so I kept my mouth shut and did what I was told so I could get out of there. Anyway - just sharing and wondering about my ability to heal. But I will say one thing I am grateful for and that is music. It helps me to exercise walk - even dance and certainly to grieve and to pray and to realize my own strength to cope with all this. "As broken as I feel I am - I will recycle what is left - and simply try again". Thanks for listening...

[[Na...]]

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

I have now been dealing with 3 major setbacks. First when I was hit by a car three years ago. Fractured my knee and my pelvis and took many months to recover my ability to exercise walk. Second, one year ago I fainted in the street and wound up needing a new heart valve and a pacemaker and now take all kinds of heart meds - after kicking all the meds that poisoned me. I also suffered a stroke while I was in the hospital. People say I recovered from that nicely but I wonder...  My latest setback is I now have breast cancer - more meds - trying to shrink the growths by abstaining from all estrogen which is now affecting my bones which require more meds. Surgery awaits. My exercise walking (which has always been important to me) is now more difficult because of side effects from the meds. I still manage - went a couple of times cutting my distance in half. Just last week I fell again but landed in grass so I didn't have to go the ER to stop the bleeding from my mouth which I had also fractured and needed stitches in my lips because my teeth had fused into my lips. A kind man helped me stand up and kept telling me I should get checked out. I asked him to please just hold my hand when I walked back to my house. I didn't tell him I was already checked out and wanted no part of that again. It took me a good year to recover from the traumas I experienced in the hospital and then I took on the lump in my breast which they found in the hospital. Which brings me up to date. DR and DP have always been a major symptoms for me.  It all seems like a dream (nightmare) and never could I tell any medical people I was suffering from benzo withdrawal because they didn't believe how long I have been suffering so I kept my mouth shut and did what I was told so I could get out of there. Anyway - just sharing and wondering about my ability to heal. But I will say one thing I am grateful for and that is music. It helps me to exercise walk - even dance and certainly to grieve and to pray and to realize my own strength to cope with all this. "As broken as I feel I am - I will recycle what is left - and simply try again". Thanks for listening...

You really have been through the ringer. The fact that you've kept going through all this is really a testament to your strength.

 

[[Be...]]

Maybe you can try natural thyroid.  Desiccated pig thyroid instead of Synthroid.

[[Ca...]]

On 27/11/2023 at 08:57, [[N...] said:

I'm so, so, so sincerely sorry.  I guess I am lucky that I have had months of reprieve from the mental torture.  If only you could even just get a small break!!  No one can relate to the most hellish, tortuous, inhumane and scary symptom of post benzo induced mental torture unless you are going through it.  I personally feel so alone in the world and I dread every single day.  You are an incredibly strong human being for battling through this mental torture for as long as you have.  My heart goes out to you!  

You are so kind. It would seem we are quite similar with the ordeal in terms of symptoms, outlook. It is refreshing to see. Happened to come to mind a term you used - Benzo-flu. That is how it feels precisely. I just feels like I'm in a constant state of wreckage. But I did it when I would go to Tijuana to double the Rx. I'm afraid that did it.

I do still have hope, perhaps only a flicker, but that we do finally see the end of this hideous nightmare.