Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

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(If you are on a benzo and are satisfied with it, this post is not for you.)

I wanted to get an idea of how many pwMEs were damaged by a prescription benzo for ME symptoms.

My reason for asking is multi-faceted (in no particular order of importance):

1) Like me, did you mistake the slow, insidious side effects (and/or tolerance effects) of your benzo as ‘just’ the long term ravages of ME? Or did you stop for other reasons, only to be left with further neurological damage (beyond your initial baseline ME) you didn’t have before taking this class of drug?

2) I hoped someday to recover enough cognition to write an article or two about benzo damaged pwMEs (but have not had the cognitive stamina to do it along with my routine ADLs, yet).

3) I tend to be proactive when the going gets tougher. A mission or goal helps distract me from nasty neurological symptoms that linger and easily flare 2.5 years after finishing a fairly rapid taper off 1 mg of clonazepam prescribed for ME sleep issues:

I’d like speak up so that our numbers are recognized, to help educate medical providers and others, and to talk to ME researchers about this problem, if I eventually improve enough do it coherently, if not cohesively. (I found that many – perhaps most? - benzo-damaged patients meet “chronic fatigue” definitions. There are WAY more folks in the benzo-damaged community, and they/we are far more maligned and stigmatized than even ME & cfs patients!) This #3 is over ambitious, I know. It’s the damaged GABA receptors talking.

4) I haven’t been able to hop onto forums for many, many years (too draining), but for me benzo damage is far more isolating than even moderate-severe ME. Feeling isolated was never an issue for me during my first 10 years of unmedicated-but-disabling ME, or for the first half of the 10 years I took clonazepam as prescribed. So I guess I’m reaching out here. Benzo Buddies is a great forum, but most there didn’t start out with ME at baseline. (Note: It might take weeks for me to produce follow-ups or replies though. Don’t take it personally.)

There is so much more that I’d like to cover on this issue, but can only handle small bits for now. And I know most like me can only handle a paragraph or two (sorry for exceeding that). Thanks for bearing with me!

P.S. If you are on a benzo prescription and want to get off, NEVER stop suddenly, take your time and do your research (I have no affiliation with any of these groups):

Benzodiazepine Information Coalition
https://www.benzoinfo.com/

World Benzodiazepine Awareness Day
https://w-bad.org/

The Ashton Manual for Benzo Withdrawal
https://www.benzo.org.uk/index.htm

Benzo Buddies Forums
http://www.benzobuddies.org/

Alliance for Benzodiazepine Best Practices
https://benzoreform.org/

As Prescribed documentary trailer
https://www.asprescribedfilm.com/
 

perrier

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I agree; it is criminal, yes criminal, for doctors to prescribe items such as klonopin, and not to follow up, and not to warn that this is highly addictive. And this is done to young people.

Please let me know, what are the side effects of trying to wean off Benzos. Our family member is doing it so slowly, we get compounded doses. But because of the severity of illness, it is so hard to progress reasonably.

How much damage has been done I have to ask to an already sick body, with some of the addictive substances which have been prescribed: Benzos, hydrocortisone, etc.

I recognise that doctors just don't know what to do when confronted with a patient who cannot get up, and and cannot sleep and is just totally collapsed. This means a treatment/cure is urgent. This means that doctors need in the interim to be more careful.
 

JES

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Ironically, benzodiazepines (especially ativan it seems) provide a working short-term treatment for some severe PWME. Ron Davis' bedbound son can only move and talk when under ativan (source), another member here said it's their rescue drug, a third member who is bedbound reported improvement here.

Now given that some patients improve in short-term after taking benzos, I hypothesize it could also explain why some people like OP could end up with worse ME/CFS symptoms with long-term benzo usage, especially after they try to quit the drug. As well-known by now, benzos cause issues with dependency and tolerance, which is due to the body desensitizing and downregulating GABA receptors as a response to the drug. As a further counter effect, the body sensitizes excitatory NMDA receptors.

So following long-term benzo use, it could be that PWME end up in a situation that could potentially be a double whammy if they try to quit the benzo, as PWME have already been found to have neuroinflammation and glutamate excitotoxicity.

I wonder though if a drug acting on GABA without tolerance development could provide a long term solution for some of us, similar to the short-term benefits some PWME experience with ativan.

I personally found benzos somewhat helpful several years ago when taken a few times a month for sleep or anxiety. Nowadays, there is hardly a doctor that prescribes benzos in my country anymore, so at least from my perspective, it isn't true that doctors don't take issues with benzos seriously.
 
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https://cdn.shopify.com/s/files/1/2161/5909/files/SL.pdf

Not a crazy idea in the least. One of my favorite papers right here proposes benzodiazepine use/withdrawal contributes to unexplained chronic illnesses that involve the unbalanced GABA/GLU receptors and the resulting NO/ONOO- viscious cycle such as ME/CFS has been proposed to be.
Thank you for this awesome article. My cognition is variable & slowly on the mend - even putting together an IKEA chair is tough - much less molecular biology. But I get the gist. (Haven't made it through BIC's entire website yet. Great site and great folks though!)

I went down with ME in late 1996. Way back in the early 2000s, one of Marty Pall's "Oh-No!" articles was the first ever I took to my PCP. Thank goodness doctor was receptive to the many future articles I brought him.

Funny, one of the things I wondered but edited out of my original post was how many of the pwMEs' triggers was unrecognized chemical/toxic "exposure" to prescription meds, namely benzos, but who knows what else.

Thanks again, Dancin'!
 
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I agree; it is criminal, yes criminal, for doctors to prescribe items such as klonopin, and not to follow up, and not to warn that this is highly addictive. And this is done to young people.

Please let me know, what are the side effects of trying to wean off Benzos. Our family member is doing it so slowly, we get compounded doses. But because of the severity of illness, it is so hard to progress reasonably.

How much damage has been done I have to ask to an already sick body, with some of the addictive substances which have been prescribed: Benzos, hydrocortisone, etc.

I recognise that doctors just don't know what to do when confronted with a patient who cannot get up, and and cannot sleep and is just totally collapsed. This means a treatment/cure is urgent. This means that doctors need in the interim to be more careful.
I'm sorry you have a family member going through this. This is what makes me so angry is to know how really, really bad it is to come off these drugs, and yet no one believes it, just like ME.

My ME was moderate-severe, I was a 98lbs skeleton in the early acute stage. Not knowing what it was and not having doctors believe was hard. But made it back to at least low functioning, mostly homebound. I sort of knew what to expect withdrawing off clonazepam, but it is much, much worse than the long list of symptoms could ever describe. So many folks say their cancer treatment was easier. So many people just kill themselves.

I don't mean to frighten. Again, my withdrawal was fairly rapid. I did that to be able to distinguish between w/d symptoms and what I knew as my original ME smymptoms. It worked for that, but has ended up a double edged sword in that I had a higher risk of this protracted syndrome.

Please tell your family member it DOES get better, even though it seems endless!
 
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Ironically, benzodiazepines (especially ativan it seems) provide a working short-term treatment for some severe PWME. Ron Davis' bedbound son can only move and talk when under ativan (source), another member here said it's their rescue drug, a third member who is bedbound reported improvement here.

So following long-term benzo use, it could be that PWME end up in a situation that could potentially be a double whammy if they try to quit the benzo, as PWME have already been found to have neuroinflammation and glutamate excitotoxicity.

I personally found benzos somewhat helpful several years ago when taken a few times a month for sleep or anxiety. Nowadays, there is hardly a doctor that prescribes benzos in my country anymore, so at least from my perspective, it isn't true that doctors don't take issues with benzos seriously.
Bingo! "Double whammy" is the more concise version of what I'm getting at:thumbsup:

I found it helped at first too. The sedating quality was more than welcome, but that only masked the damage done over the longer haul. I worry about Whitney Dafoe and others when I read descriptions of "kindling". But I know they are all more informed than I was, and can weigh the benefits versus the risks.

I'm glad doctors are informed where you are, JES. They still suck here, and hand this stuff out like candy. Xanax is the flavor of the day!
 
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Benzos are what PUT me here
I'm sorry to hear that, 91. I suspect you aren't the only one; this was part of what I was curious about.

So, chemical/toxic exposure (benzos) was your trigger that led to your ME (or cfs) diganosis? Or did you have a ME or cfs dx first, then was prescribed benzos? I'm assuming you're off benzos?

I hope you are slowly healing. I still hold out hope that I can at least get back to somewhere close to my baseline ME. (I'm not getting any younger though!)
 
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Only think i know from personal experience about benzodiazpam is I had the worst drug reaction ever when it was given to me IV in the hospital. I had severe vertigo with vomiting that would not stip every time i sat up, so I agreed to a very small dose of reglan and very small dose of benzodiazepam. They knew i had med intolerances so they gave me small doess and watched me. They pushed reglan first and it was just fine so i figured all would be well. But after a couple of seconds of the benzo, i had such a bad reaction i don't even know how to describe it

i felt AWFUL. I felt like i had to rip my skin off. It was the closest i have ever had in my life to a mental illness or mental side effect. Again i don't even have the words for it. I screamed at them to make it stop and asked them to give me absolutely anything to make it stop. It took all my will power to not rip my clothes off - i figured if i did that i'd end up being sedated or wprse amd kist agpmozed as silently as i could. I still dont' know how to describe the feeling. head and body felt so messed up and uncomfortable. Mercifully, its topped after maybe 15 minutes. The nurse said the speed of infusion meant the body was trying to shut itself off but fighting it, or some such talk. she said was the iv and probably orally would be fine. my primary doc (the last time i had a trustworthy primary ) said, nah, do not risk every taking that orally given the reaction. Damnest thing though is it worked on the vertigo and i was able to get up and go home (of course repeat vertigo at home for next 6 weeks but that's another story).
Wow, that sounds almost like cold-turkey benzo withdrawal! (Except the symptoms are that severe and relentless for weeks-to-months, then don't get much better than that for a very long time.)

Mercifully is right! I'm so glad you made it through that - it sounds horrific!
 
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(If you are on a benzo and are satisfied with it, this post is not for you.)

I wanted to get an idea of how many pwMEs were damaged by a prescription benzo for ME symptoms.

My reason for asking is multi-faceted (in no particular order of importance):

1) Like me, did you mistake the slow, insidious side effects (and/or tolerance effects) of your benzo as ‘just’ the long term ravages of ME? Or did you stop for other reasons, only to be left with further neurological damage (beyond your initial baseline ME) you didn’t have before taking this class of drug?

2) I hoped someday to recover enough cognition to write an article or two about benzo damaged pwMEs (but have not had the cognitive stamina to do it along with my routine ADLs, yet).

3) I tend to be proactive when the going gets tougher. A mission or goal helps distract me from nasty neurological symptoms that linger and easily flare 2.5 years after finishing a fairly rapid taper off 1 mg of clonazepam prescribed for ME sleep issues:

I’d like speak up so that our numbers are recognized, to help educate medical providers and others, and to talk to ME researchers about this problem, if I eventually improve enough do it coherently, if not cohesively. (I found that many – perhaps most? - benzo-damaged patients meet “chronic fatigue” definitions. There are WAY more folks in the benzo-damaged community, and they/we are far more maligned and stigmatized than even ME & cfs patients!) This #3 is over ambitious, I know. It’s the damaged GABA receptors talking.

4) I haven’t been able to hop onto forums for many, many years (too draining), but for me benzo damage is far more isolating than even moderate-severe ME. Feeling isolated was never an issue for me during my first 10 years of unmedicated-but-disabling ME, or for the first half of the 10 years I took clonazepam as prescribed. So I guess I’m reaching out here. Benzo Buddies is a great forum, but most there didn’t start out with ME at baseline. (Note: It might take weeks for me to produce follow-ups or replies though. Don’t take it personally.)

There is so much more that I’d like to cover on this issue, but can only handle small bits for now. And I know most like me can only handle a paragraph or two (sorry for exceeding that). Thanks for bearing with me!

P.S. If you are on a benzo prescription and want to get off, NEVER stop suddenly, take your time and do your research (I have no affiliation with any of these groups):

Benzodiazepine Information Coalition
https://www.benzoinfo.com/

World Benzodiazepine Awareness Day
https://w-bad.org/

The Ashton Manual for Benzo Withdrawal
https://www.benzo.org.uk/index.htm

Benzo Buddies Forums
http://www.benzobuddies.org/

Alliance for Benzodiazepine Best Practices
https://benzoreform.org/

As Prescribed documentary trailer
https://www.asprescribedfilm.com/
There is a doctor at UCLA who helps people to
stop taking benzodiazepines.
 

Aerose91

Senior Member
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I'm sorry to hear that, 91. I suspect you aren't the only one; this was part of what I was curious about.

So, chemical/toxic exposure (benzos) was your trigger that led to your ME (or cfs) diganosis? Or did you have a ME or cfs dx first, then was prescribed benzos? I'm assuming you're off benzos?

I hope you are slowly healing. I still hold out hope that I can at least get back to somewhere close to my baseline ME. (I'm not getting any younger though!)
Yup. I was sick first but not with M.E. I had adrenal fatigue and was given ativan to sleep. After 2 weeks I was in a complete zombie-like daze so they pulled me off cold turkey and I went into severe withdrawal. Had protracted withdrawal for about a year then got encephalitis and that's what finally triggered the M.E. Been here since. Sometimes I cry at the fact that all these years and all this health has been lost solely at the hands of that pill
 
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Yup. I was sick first but not with M.E. I had adrenal fatigue and was given ativan to sleep. After 2 weeks I was in a complete zombie-like daze so they pulled me off cold turkey and I went into severe withdrawal. Had protracted withdrawal for about a year then got encephalitis and that's what finally triggered the M.E. Been here since. Sometimes I cry at the fact that all these years and all this health has been lost solely at the hands of that pill
I hear ya! To know that a bad situation made MUCH worse could have been avoided if all parties involved were just educated (or not in denial, like so many prescribers) makes me angry and sad (understatement), not just for me but for the millions who have been damaged and who have lost so much.

I know we'll have our day in class action court, but don't know if our generation of benzo-damaged souls will get at least a little satisfaction before our time is up. Living to see this happen, though, is what keeps me going!
 
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@hikinglo
This is what makes me so angry is to know how really, really bad it is to come off these drugs, and yet no one believes it, just like ME.
What's really angrifying is that, contrary to what all the prescribing Drs tell patients ("I've never heard of that reaction ...." or "No one else has reported this ...." or "That's impossible with this prescirption, it's all in your head ..."), they know fracking well what these drugs do, and how impossible it is to get off them, and they know that even as they write up your first script.


They wont admit that because it opens a door to the bottomless hell of endless lawsuits and possible loss of their med mal insurance which is the end of the road for a Dr, and they wont help the patient they've damaged with careless prescribing or treat them because it takes a LOT of time and way more patience than most Drs can muster.

You're left on your own, and the number of deaths from benzos just keeps mounting while the medical community all huddle around the comforting fire of "But we;re fighting opioid addiction ..... really, we are ...", which generally means that a lot of patients who really need pain meds arent getting any, again, because Drs tend to cover their own soft, rosy bulging behinds ahead of everything else.

I re-state what @hikinglo referenced above, the Ashton Manual. Not perfect, but the best way known, so far, for getting off any form of benzo. The difficulty is finding a Dr who'll prescribe for what could well be several years of agonizingly slow withdrawal.
 
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You are talking about the problem of benzodiazepines. But with what to replace them, when you need to decide what they decide .... Kava kava ... this is not serious ... How to remove the excitement, as a result of the disease ???