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Do we all heal ? To those who do not.


[Ma...]

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[Up...]

Here’s a suggestion to all who claim this.  Email every coach, BIC, Geraldine Burns, Dr. Witt-Doerring and Baylissa in your own words tell them your story.  Stand up and be counted.  Don’t hide in the shadows.  Let them know what is going on.  Did you take any more benzos, psych meds, antibiotics, have surgery or any other medication, supplements, THC or CBD, alcohol, diets, stress after original taper or ct?  They need the truth.   Be prepared to answer questions such as a complete drug history, health history and is anything better? Don’t depend on others to speak for you.  It costs nothing to do so.  
 

Also remember not everything can be blamed on a benzo.  If you were predispositioned to have a medical condition whether or not you took a benzo you were still going to get it.  Check your family medical history.  Certain conditions run in families.  I was tested for every thing under the sun because of the health anxiety I had. I was tested for Cancer, immune deficiency, hormone deficiency, MS, Lupus, CFS, Heart related issues, stomach issues, CT scan of my brain, MRI, blood work kidney, liver function you name it I tested it.  Guess what, NOTHING WAS FOUND!  It was withdrawal.  The whole darn mess.   
 

If enough of you tell your stories  then it can’t be denied.  Type it once copy and paste it to each person or entity. You have nothing to lose.  But sitting around waiting for a miracle and posting daily how bad it is has gotten nothing accomplished.  Try something different.   Advocate for yourself!  Yes I do believe we do get better because I lived it.  I can’t say I have not seen any healing in myself or every person who CT’d at the time I was active on this site. 
 

Stay in your world on your journey.  Don’t get caught in the obsessive rumination .  Do what ever you can to interrupt the cycle.  DONT LET A UNEDUCATED PERSON DIAGNOSE YOU.  STOP GOOGLING YOUR SX!  GO TO A DOCTOR GET EVERY TEST DONE AND ACCEPT THE FACTS!  
 

Edited by [Up...]
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  • 2 weeks later...
[Ms...]
On 25/03/2024 at 16:12, [[U...] said:


Stay in your world on your journey.  Don’t get caught in the obsessive rumination .  Do what ever you can to interrupt the cycle.  DONT LET A UNEDUCATED PERSON DIAGNOSE YOU.  STOP GOOGLING YOUR SX!  GO TO A DOCTOR GET EVERY TEST DONE AND ACCEPT THE FACTS!  
 

This is such a privileged take. Do you think most people really disabled by this harm can get to a doctor to get every test done? It also reads like you're blaming people for being harmed because you don't want to deal with the cognitive dissonance that some harm doesn't heal. If this situation doesn't apply to you because you healed, be grateful, but you don't have to have an opinion on it.

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[Up...]
45 minutes ago, [[M...] said:

This is such a privileged take. Do you think most people really disabled by this harm can get to a doctor to get every test done? It also reads like you're blaming people for being harmed because you don't want to deal with the cognitive dissonance that some harm doesn't heal. If this situation doesn't apply to you because you healed, be grateful, but you don't have to have an opinion on it.

Who are you to tell me not to have an opinion?  Here you are posting yours.  You do and believe what you want and I will too!  You are a good example as to why people leave groups .  I believe most coaches, therapists, admins and mods would advise to get checked out by a doctor and not assume everything is related.  
 

Privileged? Blaming? Nope nice try though. 
 

if Colin or any Admin has a problem with my post trust that they would have jumped in.  I don’t need you to do there job and they don’t either. 
 

Have a great day!✌🏼
 

Thanks 

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[Ms...]
54 minutes ago, [[U...] said:

Who are you to tell me not to have an opinion?  Here you are posting yours.  You do and believe what you want and I will too!  You are a good example as to why people leave groups .  I believe most coaches, therapists, admins and mods would advise to get checked out by a doctor and not assume everything is related.  
 

Privileged? Blaming? Nope nice try though. 
 

if Colin or any Admin has a problem with my post trust that they would have jumped in.  I don’t need you to do there job and they don’t either. 
 

Have a great day!✌🏼
 

Thanks 

 

Sure, everyone would advise seeing a doctor, but that's missing the point! How are they going to even get the testing? Just don't be sick that day? Being healthy enough to even go to the doctor and undergo testing is beyond the ability of many severely harmed. And, to be clear, as you suggested, I'm not assuming the role of an admin; I'm simply pointing out how your minimizing, privledged words can be perceived by others. Frankly, comments like yours are why I rarely participate in support groups. You say you are healed, but I am not. Who needs the support group more?

While you're entitled to your opinion, it's important to recognize that it comes from a place of privilege, with a perspective that is entirely irrelevant to those who are suffering for reasons unrelated to what you've listed. The reality is that benzo harm, for some, is incredibly severe and long-lasting. Nobody should be told their suffering is something else just to make someone else comfortable. Your response displayed a total lack of reflection and pure defensiveness so I won't engage further.

 

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[Wa...]

I would like to offer an opinion, a perspective, if that is okay. 

I am 5 years off and do not come here anymore because I decided a long time ago that it just didn't serve me to marinate in symptoms and talking of suffering every day. The support was great for the first 18 months and then after setbacks and things, I had to choose to go my own way. I didn't want to reinforce the damage and trauma that has already been so chemically ingrained in me. That was just what is best for me.  But I saw this thread and it made me think of my mom.

 

She developed breast cancer in her early 60's and she fought like hell to survive it. The chemo was so aggressive it actually nearly killed her. She eventually recovered as much as she was going to and tried living her best life for 9 years cancer free until pancreatic cancer took her. I saw that her health was never the same after chemo. I saw that she would always tire easily, always be at risk for developing secondary conditions, and she never fully got back to where she was after what she went through. But if she were here today she would probably say that she got back to 80% and was able to function and travel and live with limitations and enjoy things as best she could. My point is that she was never going to be "all the way healed" or back to 100%. It wasn't going to happen.

I think of that quite often in this experience as I am still nowhere near even 80% and deal with and wonder about the very fears posted here. Will I ever be okay? Will I ever be me again or feel like a real human being? Is this permanent? Are the coaches wrong? How much more can I lose and grieve? Where does it all end and will it every end? All the things. The answer is that I don't know. I don't know for me and I wouldn't ever presume to know for someone else. But I hope to get to a functional life at some point. A life worth living even with limitations and never being the exact same again. 

I know cancer isn't the same. Nothing comes close to this brutal existence we share here. But I choose to believe that healing is possible and I focus on improvements and will keep fighting. I hope you will, too and I hope we can support each other. 

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[Md...]
On 10/03/2024 at 04:53, [[A...] said:

@[Md...]..this "rare neuropathic condition" you have. What is it called?

So sorry for the late response.

Doctors don't quite know, so they have labelled it a few things: Aytpical Facial Pain, Post Traumatic Trigeminal Neuropathy, Type 2 Trigeminal Neuralgia, whatevever. Even the "experts" (and there are none when it comes to this condition) don't quite know how to deal with it, and it doesn't help that they keep changing the terminology. It was originally termed Atypical Odontalgia, but that term is supposedly obsolete now. 

Basically, the literature (which is nothing short of a bad joke) on this condition basically just states that it is some type of rare neuropathy...but in the face. 

There are no surgeries to correct this, and the only way the rare and few doctors that have come across it usually just prescribe anti siezure medications (including benzos), or antidepressants (especially TCAs).

Sometimes botox injections help. Sometimes SPG blocks help, but these are just band-aids, and there is no known cure.

My benzo psych is Dr Josef, and he himself even admitted that I am stuck between a rock and a hard place. 

It's funny, but I never thought I would be envious of people who only had to endure through benzo withdrawal.

Then again, I never thought I would be in this situation to begin with.

This is why I wonder If i should just stay on benzos indefinitely, or continue to taper in hopes that the pain doesn't come back full throttle, because it's constant pain that no one can live with.

If you're really interested, this is probably the best presentation of the condition. I bookmarked it, so you really only need to watch the first 10 minutes (if that) to get a somewhat of an understanding of it.

With all that said, my goal is to get off benzos and beat the odds of this condition. 

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  • 3 weeks later...
[ve...]

8 years here. 2/23/16 was my quit date, my life has never been the same since. I've been embroiled in quite a struggle ever since.

I never "healed." I have a nervous system that gets over-excited at the drop of a hat. My sleep has been permanently affected, it's very hard to get 6-8hrs of rest a night (I feel like I am fighting a battle to fall asleep and stay asleep every single night). I'm sure this has done a lot of damage on top of the direct neurological insult that my brain endured from the unchecked excitotoxic activity during cold-turkey and in the years of post-acute/BIND that followed it - we know lack of sleep exacerbates all kinds of diseases, namely cognitive and neurodegenerative diseases like Alztheimers, dementia, aphasia, etc.

But by far my biggest issue is the cognitive and memory damage. I literally lost something like 1/3 of my working cognitive capacity. My memory took such a big hit, it's been a really hard pill to swallow. The cognitive problems I have are on two sides of the same coin: my memory sucks, therefore my ability to learn/cogitate is greatly diminished. I have anterograde amnesia - difficulty forming new memories. I do not have any issue with retrograde amnesia (remembering old memories that had been formed before I went through withdrawal). So, for example, it is immensely difficult for me to memorize a song to a sufficient level to be able to sing along with it. There are new songs I've discovered after going through this whole withdrawal mess, and regardless of how many times I listen to them, my brain is unable to commit the lyrics to memory and be able to recall them quickly enough to sing along. I can listen to a song 50 times, or listen dozens of times back to back, and I'll try to sing along and I literally cannot due to not being able to remember the lyrics. At best, I'll be able to remember the chorus, or a few lines of the song. Before withdrawal, I had a great memory, I could memorize the lyrics to a song in as few as 5 or 6 listens and sing along flawlessly. Interestingly (and yet also tragically), I am still able to sing along to songs that I already knew before withdrawal. I am able to remember the words of those just fine and sing along like normal. It's the ability to form new memories, and sing along to new songs where my brain literally just can not do it any longer.

That's just one aspect of the memory and cognitive problems that I now live with, which I figured does a great job of representing/summarizing the nature of the problem (the problem being the anterograde amnesia - the inability to form new memories). I suffer all kinds of other cognitive and memory problems, to the point where I had to give up my career, as my brain is literally damaged to the point I am no longer capable of performing the intellectual work that I used to. I have a lot of worries about my future. I am only 34 (I cold turkeyed at age 25) and I have MAJOR memory problems, and they seem to be getting worse. I feel like I am now predisposed to early-onset dementia or Alztheimers. I literally cannot imagine what things are going to be like for me in say, another 20 years.

It's clear that I have damaged my brain permanently and in a profound way. The cold turkey and resulting excitotoxic neurological damage (which went on unchecked for years) permanently altered the way my brain interfaces with the environment. After researching this so much over the past 8 years (albeit with a very broken brain), it's entirely obvious what happened to me. I have literally damaged the very neurological mechanisms by which you learn: the gaba-glutamate system. The two have been out of whack ever since; any activity happening in my life and environment stimulates the glutamatergic system, and it no longer functions properly. Instead of glutamate (the neurotransmitter responsible for learning) being carefully checked and inhibited by GABA, it overstimulates the NMDA receptors, causes calcium ions to flow into the neurons, and causes excitotoxic brain damage instead of being cleared from the synaptic cleft. This is happening to me basically all the time, anytime I engage with the world my brain tries to file that data and learn from everything that is happening in my life and environment, yet the delicate balance of neurotransmitters responsible for that filing has been disrupted so that they no longer work properly. So I am, to a large part, unable to form new memories as easily as I used to. Basically I work only from short-mid term memory at this point in my life - if something is more than a week or two past, I have largely forgotten it. I can read a page of a book, close the book, and 10 seconds later try to remember what I just read, and I have very little recall of it. By the time a day or a few days passes, I have usually forgotten it entirely.

To add insult to injury, the withdrawal permanently affected my ability to get good sleep. The number 1 preventable predictor of dementia and Alztheimers is poor/insufficient sleep. Deep, restful sleep of long duration (8hrs +) is where you brain essentially cleans itself and moves memories from short-term memory into long-term memory. Sleep also has some role in literally every single function of the body. It is truly essential, good sleep is absolutely non-negotiable, and not getting good sleep has absolutely devastating effects on the body. Ever since withdrawal, I can almost never sleep a full 8 hours. I spend at least 2 hours each night laying there, breathing deep, trying to get to sleep with my overstimulated/over-excited brain - sometimes I lay there for 4+ hours and don't get any sleep whatsoever until 1 or 2am. Then I'm usually up by 6-7am. So most nights, I get 4-5hrs of sleep. On occasion, I'll get lucky and get 6+ hours of sleep, but those nights are very much the exception. Also, I wake like a half dozen times or more each night. Never do I just hit the sheets and sleep all through the night like I used to before this mess. It's truly a battle every single night (I will only take melatonin on occasion, and it doesn't usually help. I don't want to use sleep aids for many reasons I won't go into here, namely tolerance/dependence and the fact that studies show that while sleep aids may knock you out and make it seem like you're getting good sleep, in fact, you are not getting good sleep whatsoever - they entirely disrupt the normal brain functions that happen when you fall asleep, making them not a viable solution).

I could go on and on, but I know I'm rambling already. Just putting my .02 in. I'm sure there is a genetic component here - I probably inherited some gene mutation (or combination of gene mutations) which make this BIND permanent. But it is permanent, at this point I know that for certain. The mantra of "time heals everyone" that is repeated so often here without a shred of supporting evidence is totally exhausting and exasperating for someone in my situation.

 

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  • 2 weeks later...
[bw...]

I dont believe so. Im now at 6.5years off and worse than ive ever been.

I think mayne eventually we get to 80% but never to whom we once was.

Sorry.

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[OD...]
Posted (edited)

Several things have already been addressed, but adding to it, I think it's also important to create small challenges during the withdrawal process. I'm not sure if this example carries over, but I think of people who have had to re-learn to walk, or through a speech therapist re-learned to talk etc. after some sort of traumatic brain injury. Some of us may have done more damage than others due to length of time or dose, or just predisposition, and the idea that we will just recover and be back to normal at X number of years... I don't know, I'm far from an expert, but it seems a bit far-fetched.

For myself, as an example, one of my biggest struggles has been agoraphobia. For the first year and a half I had all my groceries delivered because I couldn't step foot in a store, I could barely even drive. I started to realize recently that I have be proactive about this, I started going to the store near closing time and just walking in, staying for 60 seconds, and walking out.

It's humiliating, I'm literally in there trembling and shaking and terrified, but more recently I've been staying in there for 10-15 minutes at a time and I only know that because I'm keeping track of it like I would a gym training session. If I wasn't making note of it, it would be really hard for me to be aware of such small progress, but progress is progress and builds up over time. The challenge I face now is being able to check out with one item... again, humiliating, but a few months ago I couldn't even fathom walking into the store. Making note of these small changes helps me to be more objective about how much I've improved, because during the bad days it doesn't feel like I've made any improvement at all, but I can look at my notebook and yeah, 10 minutes in the store with moderate anxiety is better than 60 seconds with unbearable anxiety, I'm making progress.

As to the actual question if everyone heals or not, the only answer is "I have no idea". I'm treating this as if it were a very traumatic brain injury and I basically have to re-learn some very basic things and hope that my brain is able to make those connections again. And I'm far from healed, some days my training is just playing some puzzles and memory games to try and get that back on track, some days its practicing standing on one leg to improve the vertigo I still have. Is some of this useless? Maybe. I might completely fail and not recover, but I feel like I can't afford to just "wait" to get better.

Edited to say this wasn't meant as a knock on anyone who has posted, just a realization I had about myself about 4 months ago, that if most people who go through some sort of severe injury (mental or physical) require extensive therapy and rehab, what makes me think I'm going to recover optimally just sitting and waiting.

 

 

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[Le...]
On 06/03/2024 at 13:54, [[C...] said:

That is amazing, Mary! I am on this poison because of my therapists lol so I am traumatized! But I mean I was a very very bad case, on this for no reason except cortisone withdrawal and my family, which I got for clogged ears, and seeking CBT therapy to help me deal with my symptoms then. A year ago when I first took this it damaged me immediately within the first couple of days. I could do nothing. I felt the electricity go out of my head and I could not eat, speak, walk, sleep for half a year. Now I can eat, I can speak, I can walk. So I have made progress. I don't think my brain will ever be the same again, but there has been healing. I could not play a boardgame or watch tv, now I can kinda sit in and watch a movie again, I can win at chess. There have been small improvements. 

sounds like an even more serious version of what happened to me. very very ill very quickly and noone ever could figure it out. i was told many times it isnt the drugs. funny how i recover off them

 

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