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Clonazepam (Klonopin) stops my symptoms almost completely

Rvanson

Senior Member
Messages
312
Location
USA
You'll find that life can be full of surprizes .... most of them unpleasant ....

I am in my 60's, so I've seen it all, YippeeKi YOW !!. There is no way you could have known of that, so I thought I'd let you know. Thanks for the support you've given me, and I DO appreciate it.

Sincerely,

Rvanson
 

YippeeKi YOW !!

Senior Member
Messages
16,064
Location
Second star to the right ...
I did not ask for this condition, but I am not going to go on living life without being able to sleep quite soundly and wake up with no hangover symptoms whatsoever.
I couldn't agree more.

One of the more debilitating (altho it's hard to chose among the raft of unpleasantnesses this creepy little ball-buster of an illness generously provides) aspects of ME is the incredible devastation and destruction of the ability to sleep. Even tho we don't get all the benefits, like waking feeling refreshed ad ready to take on the day, we DO get other benefits, without which life rapidly starts looing like a vastly losing proposition.


I'm definitely not criticizing or questioning your use of Alprazolam to help in that regard, I was just hinting that there may be unseen pitfalls.

Thank you for your kind words RV, and your understanding of what I was trying to say .... much appreciated !!! :thumbsup::thumbsup::thumbsup: :hug:
 

2Cor.12:19

Senior Member
Messages
280
Hello friends, I’ve been on a relatively “low dose” of Xanax every day for 23 years and have been slowly weaning off since 2019. Although it seemed like a life saver at first, I rue the day I ever got started on it. Although my ME/CFS predates my Xanax use by more than 10 years, I seriously wonder how many of the new symptoms I’ve developed in the last 20 are due to benzo damage (peripheral nerve damage, tinnitus, POTS, to name a few). The memory loss due to benzos was confirmed by my neurologist as my memory tests have significantly improved since weaning. Getting off this stuff is sheer torture no matter how slow you go.

What happens after building up a tolerance to benzos is that the relief we feel when we take it isn’t really curing the underlying anxiety and other symptoms. Rather, it’s oftentimes simply keeping the withdrawal symptoms at bay.

I hope anyone considering starting on this drug class will spend a good deal of time looking around on the benzobuddies website first to see what you’re in for.

I want to add that I was always a big defender of my daily Xanax use because I truly thought it was helping me, until I learned otherwise. I still believe it’s an excellent medication for VERY short term use, as in no more than 3 days.
 
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YippeeKi YOW !!

Senior Member
Messages
16,064
Location
Second star to the right ...
What happens after building up a tolerance to benzos is that the relief we feel when we take it isn’t really curing the underlying anxiety and other symptoms. Rather, it’s oftentimes simply keeping the withdrawal symptoms at bay.
I've been shrieking this, over and over, and enduring various attacks as a result.

BENZOS, OF ANY TYPE, DO NOT 'CURE' ANYTHING ..... they may make you feel better (who wouldn't, with the massive doses of artificial GABA being pumped into the brain, neuros, and CNS), but it's as artificial as the pain relief from opioids. Yes, opioid pain killers greatly limit or even eliminate the pain, but underneath that comfy blanket, whatever is causing it continues, unabated, while the potential damages from extended opioid use are quietly, and often devastatingly, accruing in the background, just waiting around patiently for the moment of attack.


It's good to hear from you @2Cor.12:19 .... I've observed and communicated with you on your journey to get off benzos for 3 years now, and I can't even begin measure the amount of respect I have for you and the battle you're so fiercely fighting. It's one of the toughest mo-fos around.

KEEP ON PUNCHIN' ... :woot::woot::woot: :thumbsup::thumbsup: :trophy::trophy::trophy::trophy: :hug::hug::hug: .....
 

2Cor.12:19

Senior Member
Messages
280
Hi 2Cor -- how are you tapering Xan? Dry cut or other way. Did you try to transition on to longer acting ben like Val. Curious you you are doing.
Hi @josephine2 - I’m doing a direct dry taper using a jewel scale and razor blade. I’m down to .114 at night. I considered using the Ashton crossover method but didn’t want to risk reacting to the Valium. I’ve been doing abt 10% cuts every 2 weeks- except I held for over a year. It’s gone pretty well overall, but still difficult.
 

2Cor.12:19

Senior Member
Messages
280
BENZOS, OF ANY TYPE, DO NOT 'CURE' ANYTHING .....

KEEP ON PUNCHIN' ... :woot::woot::woot: :thumbsup::thumbsup: :trophy::trophy::trophy::trophy: :hug::hug::hug: .....

☺️ Awww, thanks so much @YippeeKi YOW !! Good to see you too! 😃
The cool thing I’ve learned about long term users is that most of the time the original anxiety disorder that was treated is long past. In my case a flu and pneumonia combo triggered severe panic disorder that disrupted my autonomic nervous system. I was such a mess for so long that my cardiologist said he’d never seen anything like it. I eventually recovered from that but believed I needed to be on Xanax for life because of the anxiety I got between doses - which was nothing more than interdose withdrawal.

I’ll probably always deal with anxiety and panic attacks- I had them long before taking X, but CBT is an effective and healthy alternative.
 

YippeeKi YOW !!

Senior Member
Messages
16,064
Location
Second star to the right ...
I eventually recovered from that but believed I needed to be on Xanax for life because of the anxiety I got between doses - which was nothing more than interdose withdrawal.

I’ll probably always deal with anxiety and panic attacks- I had them long before taking X, but CBT is an effective and healthy alternative.
Interdose withdrawal is an ongoing biatch, sort of the gift that just wont dtop giving.

The longer you take a benzo, the more frequently you run into inter-dose withdrawal anxiety, because your own GABAa system is being gradually destroyed, and your body can't provide any inter-dose buffer. Eventually you reach total zero, where your GABAa receptors have been completely down-regulated, and you have to keep upping your dosage to get the same response you did previously, at lower levels.

If CBT works for you, great. Personally, I've never found it helpful, but that was for other issues.

Just in case, keep magnesium glycinate (or whatever form works with your system .... for me, it was mag gly and nothing else did the same thing) in mind. It has numerous beneficial effects, one of which is blocking the NMDA receptor and reducing the prominence of glutamic acid/glutamate, which is responsible for a lot of anxiety responses. It also assists in the production of natural GABA and the up-reg of GABAa receptors. Melatonin can also help, as can Vit C.


I'm absolutely over the moon about your determination, discipline, and commitment to this arduous battle !!! You're totally BOMB !!!! :hug::hug::hug:
 

Rvanson

Senior Member
Messages
312
Location
USA
Hello friends, I’ve been on a relatively “low dose” of Xanax every day for 23 years and have been slowly weaning off since 2019. Although it seemed like a life saver at first, I rue the day I ever got started on it. Although my ME/CFS predates my Xanax use by more than 10 years, I seriously wonder how many of the new symptoms I’ve developed in the last 20 are due to benzo damage (peripheral nerve damage, tinnitus, POTS, to name a few). The memory loss due to benzos was confirmed by my neurologist as my memory tests have significantly improved since weaning. Getting off this stuff is sheer torture no matter how slow you go.

What happens after building up a tolerance to benzos is that the relief we feel when we take it isn’t really curing the underlying anxiety and other symptoms. Rather, it’s oftentimes simply keeping the withdrawal symptoms at bay.

I hope anyone considering starting on this drug class will spend a good deal of time looking around on the benzobuddies website first to see what you’re in for.

I want to add that I was always a big defender of my daily Xanax use because I truly thought it was helping me, until I learned otherwise. I still believe it’s an excellent medication for VERY short term use, as in no more than 3 days.

I hope you the very best. That said, I have tried everything to get a good night's sleep, without Alprazolam. But so far nothing has come close. And my intake is the same as it was, so increasing the dose is not necessary for me, despite the notion that it is. Perhaps so for others, but not for myself. My .02 centavos.
 

YippeeKi YOW !!

Senior Member
Messages
16,064
Location
Second star to the right ...
If the many negative effects of Clonazepam are related to it's influence of the GABA system, perhaps this substance could help.
What an uber cool link !!!

You never fail to delight, amaze, or inform with your links, at least down the few years that I've been around to enjoy them.

But this one is really, really, REALLY cool !!! Thank you for posting this info C. Cat ...:thumbsup::thumbsup::thumbsup: :squee::squee: :hug::hug::hug:

PS .... Do you think this deserves a thread of its own? There are more than a few members here who could probably benefit from it, and might not find it on PG 7 of this thread, no disrespect intended ....

PPS .... This is the only part that gives me pause ....

"The USC team also has a plan for tackling a key challenge of translating
Chinese traditional medicines into approved pharmaceutical products:
reliable ingredient sourcing and batch-to-batch consistency."

EDIT .... For PPS, and what might have been a typo, I dont remember ....
 
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SlamDancin

Senior Member
Messages
557
Hey guys I am in touch with a researcher from Stanford who is looking into benzos in ME/CFS. I’ve been asked to share a little about my onset and which symptoms benzos improve. It’s been more than a year since my last dose so if anyone wants to explain just a little about exactly which symptoms are improved with benzos I will gladly be a liaison for the forum. Thank you in advance
 
Messages
62
Location
Philadelphia
Hi @josephine2 - I’m doing a direct dry taper using a jewel scale and razor blade. I’m down to .114 at night. I considered using the Ashton crossover method but didn’t want to risk reacting to the Valium. I’ve been doing abt 10% cuts every 2 weeks- except I held for over a year. It’s gone pretty well overall, but still difficult.
Yep, I remember scraping off a tab every night for months of eszopiclone with a razor. I, too, was afraid to crossover to Val -- the devil you know, etc. I think if I had to do it again I would, though. These fast acting, short half life BzRAs are so difficult. I was able to hold for a long time until I could stabilize a bit and then keep going. It was a marathon and not a sprint. Good on you for persevering.
 
Messages
62
Location
Philadelphia
Hey guys I am in touch with a researcher from Stanford who is looking into benzos in ME/CFS. I’ve been asked to share a little about my onset and which symptoms benzos improve. It’s been more than a year since my last dose so if anyone wants to explain just a little about exactly which symptoms are improved with benzos I will gladly be a liaison for the forum. Thank you in advance
I'd be glad to contribute. Let me know where and how. Decades ago I was prescribed Ativan by a shrink working with an M.E. doc when I was first diagnosed with CFS. I cold turkeyed Ativan and had no idea I was in acute withdrawal for weeks. I had panic for the first time in my life when I stopped the Ativan. So I'm probably kindled since I started Lunesta not too long after. Another M.E. doc said that BzRAs are essential for the quality of life for their patients. I wasn't going to argue with them. If I had not been kindled and did not have interdose withdrawal on the Lune, I'd still be taking it. If my 90 year old Mom wanted to start a benzo - I'd say - go for it, quite honestly - (but she'd be a fall risk).
 

YippeeKi YOW !!

Senior Member
Messages
16,064
Location
Second star to the right ...
Another M.E. doc said that BzRAs are essential for the quality of life for their patients. I wasn't going to argue with them. If I had not been kindled and did not have interdose withdrawal on the Lune, I'd still be taking it. If my 90 year old Mom wanted to start a benzo - I'd say - go for it, quite honestly - (but she'd be a fall risk).
Benzodiazepine receptor agonists attach to a site on the γ-aminobutyric acid type A receptor, but when they're used for an extended period of time, usually defined as anything more than 1 to 2 weeks at the most, the receptor physically changes, eliminating the drug's potential for sedation and anxiety relief, or any other benefit, and often leaving in its wake what the glossy brochures chirpily dismiss as " .... persistent amnestic effects...", along with tardive dyskinesias, recurring panic attacks, pretty severe and undefeatable insomnia, diplopias, severe cognitive impairments, and a host of other unwelcome guests.

Although they are beneficial for short-term improvement in sleep onset latency and duration, along with anxiety, social phobias, etc, they also have substantial associated side effects, including problems with dependence and withdrawal, and some of these issues can be very long-lasting.


They can be especially destructive to older patients, whose brains and central nervous systems aren't as resilient as they might have been when they were younger.
 
Messages
62
Location
Philadelphia
Benzodiazepine receptor agonists attach to a site on the γ-aminobutyric acid type A receptor, but when they're used for an extended period of time, usually defined as anything more than 1 to 2 weeks at the most, the receptor physically changes, eliminating the drug's potential for sedation and anxiety relief, or any other benefit, and often leaving in its wake what the glossy brochures chirpily dismiss as " .... persistent amnestic effects...", along with tardive dyskinesias, recurring panic attacks, pretty severe and undefeatable insomnia, diplopias, severe cognitive impairments, and a host of other unwelcome guests.

Although they are beneficial for short-term improvement in sleep onset latency and duration, along with anxiety, social phobias, etc, they also have substantial associated side effects, including problems with dependence and withdrawal, and some of these issues can be very long-lasting.

They can be especially destructive to older patients, whose brains and central nervous systems aren't as resilient as they might have been when they were younger.
Yes - thoroughly aware of all of this, tnx.