Clonazepam (Klonopin) stops my symptoms almost completely

YippeeKi YOW !!

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I was fully dependent aka could not stop cold Turkey without medical intervention and a phenobarbital taper. So yes, I was “addicted” and nothing I said was meant to downplay the risks. We’re talking here about different ways to get a GABAergic effect, hopefully without benzos and I was simply explaining why benzos cause the tolerance you describe. You may think it’s semantics but I think it’s fascinating .
That makes sense, to a degree ..... but your explanation of why benzos cause tolerance is a little wide of the mark.


But that's semantics.

Altho the phenobarbital taper doesnt make sense. It's extremely old-school, even barbaric. I'm glad you got through it ....
 
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I guess I'll jump in here since it took me months to taper off klonopin's ugly cousin, eszopiclone (lunesta) in 2016. I used a jeweler's scale. My receptors are still unable to handle stress.

Short term phenobarb makes sense in withdrawal since it may mess with a different part of the GABA receptor and you may get some relief in benzo withdrawal. BenzodiazepineInformationCoalition claims rehabs taper too fast and are worthless and even dangerous.. Cold turkey off long term benzo use can kill you.
The 2020 FDA black box warning for indicates that a person can develop dependency to Ativan in just one week! I would say that isn't "addiction".

Benzos are probably OK to take very infrequently - to get through jet lag, a funeral, a wedding or divorce court but, take it from me, withdrawal akasthesia is worse than anything I've ever experienced (and the doc wanted me to reinstate the Lunesta).
I loved my Z drug. But the docs should have warned me.
 

YippeeKi YOW !!

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I loved my Z drug. But the docs should have warned me.
Oh, @josephine2, thank you for posting, and I couldnt agree more with everything you've said.
The 2020 FDA black box warning for indicates that a person can develop dependency to Ativan in just one week! I would say that isn't "addiction".
You're right. But unfortunately, 'dependence' on a drug morphs very quickly into addiction when you find that you cant get off it, and the agony of attempted withdrawals leads you straight back to it, usually at a higher dose.

I can't congratulate you enough for sticking to your guns and at least getting free of the worst of it. The residual damage should rectify itself slowly and gradually as your brain and CNS slowly heal.


You're an unusual success story, and a beacon to other sufferers, fighting the same battle. Thank you for posting this :woot::woot: :thumbsup: :hug::hug: !!!!
 

Stretched

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As the title suggests. The Benzodiazepine medication Clonazepam, almost completely eradicates my symptoms.

I was first prescribed the medication many years ago when I had severe anxiety/panic attacks, before developing ME/CFS like health issues. I don't take the medication often now as my anxiety is typically under control/manageable, but I do have some spare in the case of emergencies if my anxiety gets to much to bear. I maybe take it 3 or 4 times a year at this point. That's just for one dose on those occasions.

I had noticed on previous occasions in recent years when I've been unwell, when I took clonazepam for anxiety, there was also a reduction in physical health symptoms.

Specifically today, I had been feeling really crappy, unwell, fatigued, depleted and couldn't stop dumping out clear urine along with being very thirsty. The dehydration type symptoms were the first that arose when I developed this condition and remain one of the main symptoms when I'm having a bad period. Today after all morning urinating clear urine non stop and feeling completely dehydrated and depleted, I took a Clonazepam, just one tablet 0.5mg. Partly because I was just so fed up and hopeless and wanted to numb myself to the pain of life with this condition, but also to see if it may help my symptoms.

30 mins later, I started feeling warm, after feeling cold all morning, my urination literally stopped, my appetite came back, and despite feeling a little slowed/relaxed from the medication I had an increase in energy and even went for a little walk listening to music.

I've read a couple of other threads here of people having success with this medication. I'm not saying it's something I can take every day or long term, because I know the dangers of dependency. But there must be something in this and why it causes a massive reduction in symptoms for me and many others. How can we harness this?

Of all of the theories around what causes CFS. The one that always seems to make most sense to me and matches up to how mine developed, is 'Autonomic nervous system dysfunction'. And now after finding clonazepam massively reduces symptoms, could it be that the medication is essentially calming an over alert and dysfunctional nervous system, which alleviates the symptoms? Only until the medication wears off unfortunately.

Clonazepam increases gaba and slows the activity in the nervous system. So it all seems to make sense.

Is there anything that could be done to somehow use this logic to find a way to regulate/calm the automatic nervous system, without an addictive drug such as Clonazepam?

I know there are a few programs/courses for ME/CFS that focus on the automatic nervous system idea and these now seem more appropriate for me. But if anyone has any thoughts or ideas on this, please do share. :)

There are reference articles by and on Dr. Paul Cheney from the early CFS journals onward touting the benefits of Klonopin. This is significant because it influenced many PWCs to become ethically addicted to it, myself included, i.e. continuously prescribed.

I used it for 30+ years and withdrew abruptly last year in June, 2021, having become emotionally blunted, which as it turns out is minimal compared to CFSME symptoms. Due to the misery of PWS (Post Withdrawal Symptoms) continuing to be a nightmare to this day, 10 months later I am seriously considering reinstating the clonazepam - for life!

Simply stated, in hindsight they worked to minimize many symptoms, most notably anxiety and its most severe symptoms. Since going cold turkey, an event most former users would advise against, my CFSME symptoms have escalated to near the 9 to 10 (worst) level. I am nearly incapacitated and some serious conditions have hugely manifested which I believe are related, Peripheral Neuropathy and DVT, Deep Vein Thrombosis, blood clotting in the legs. Prior to quitting the Clonazepam my symptoms were more moderate, progressing over the years from ~4 to ~7 level, and without the newfound misery of anxiety.

IMO, researchers, doctors and patients should revisit some of Dr. Cheney’s original views on Klonopin and related benzodiazepines and their pragmatic use in CFSME.
 
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There are reference articles by and on Dr. Paul Cheney from the early CFS journals onward touting the benefits of Klonopin. This is significant because it influenced many PWCs to become ethically addicted to it, myself included, i.e. continuously prescribed.

I used it for 30+ years and withdrew abruptly last year in June, 2021, having become emotionally blunted, which as it turns out is minimal compared to CFSME symptoms. Due to the misery of PWS (Post Withdrawal Symptoms) continuing to be a nightmare to this day, 10 months later I am seriously considering reinstating the clonazepam - for life!

Simply stated, in hindsight they worked to minimize many symptoms, most notably anxiety and its most severe symptoms. Since going cold turkey, an event most former users would advise against, my CFSME symptoms have escalated to near the 9 to 10 (worst) level. I am nearly incapacitated and some serious conditions have hugely manifested which I believe are related, Peripheral Neuropathy and DVT, Deep Vein Thrombosis, blood clotting in the legs. Prior to quitting the Clonazepam my symptoms were more moderate, progressing over the years from ~4 to ~7 level, and without the newfound misery of anxiety.

IMO, researchers, doctors and patients should revisit some of Dr. Cheney’s original views on Klonopin and related benzodiazepines and their pragmatic use in CFSME.

I am so sorry you are near 9-10 with CFSME symptoms. If you cold turkied off your benzo, it could explain why you feel you are in protracted. But protracted is generally beyond 18 months off the benzo or Z drug. I, personally, would wait until I have more time off only because reinstating may kindle you if it doesn't help. It may be hard to imagine, but could be worse if you quit or even taper off again. It's a gamble.
I am not an "addiction" person. And I am also not against benzos or Z drugs used short term - menstrual cramps, jet- lag, divorce proceedings, wedding, alcohol detox -- you get the idea. But any more long term use puts the GABA in our bodies on a too long kind of vacation and the brain/body up regulates to get back to whatever is "normal" for it. In our case - normal is often crap. But withdrawal produces all kinds of symptoms. What is what?
But it stands to reason that folks with screwed up immune systems would respond positively in other ways to this drug class.
From The Alliance for BenzodiazepineInformationCoalition Best Practices:
Benzodiazepines and Z-drugs also interact with peripheral benzodiazepine receptors. Peripheral benzodiazepine receptors were discovered in 1992, and are also known as tryptophan-rich sensory protein (TspO) receptors or translocator protein receptors. They are present in peripheral nervous system tissues, glial cells, in mitochondria (the cells’ energy factories) throughout the body, and to a lesser extent the central nervous system. These peripheral receptors are not structurally related or coupled to GABAA receptors. They modulate the immune system, possibly control cellular energy processes, and are involved in the body response to injury. Benzodiazepines also function as weak adenosine reuptake inhibitors. It has been suggested that some of their anticonvulsant, anxiolytic, and muscle relaxant effects may be in part mediated by this action.
 

Stretched

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I appreciate your thoughts and reasoning, concluding that using clonazepam again is a gamble.

IMO, benzo use again may be pragmatic since I am willing to commit to using them in perpetuity. Being in stage 3 of life this is predicated on the idea that resuming use will again calm my anxiety symptoms and ameliorate a number of CFS malaises. They were effective for 30+ years with relatively little side effects. I stopped voluntarily because of being somewhat emotionally blunted. That’s tolerable - severe anxiety, with GI issues, insomnia and nervousness are much less so.

It is difficult to start up again or proselytize benzo use when prevailing media-speak is against it. OTOH, some selective research and anecdotal evidence is suggesting they just may be effective in getting many of us up and running again, not cured, sic but a lesser of evils.
 
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SlamDancin

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I’m doing some research into benzos to get more clarity on why they may work for pwME. Interestingly, Klonopin doesn’t inhibit mast cell activation in the rat brain while Valium does. If Klonopin is still efficacious then im tempted to think it’s a different mechanism for how benzos are seemingly all effective. Perhaps it really is the benzodiazepine site GABA-A PAM.
 

Stretched

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I’m doing some research into benzos to get more clarity on why they may work for pwME. Interestingly, Klonopin doesn’t inhibit mast cell activation in the rat brain while Valium does. If Klonopin is still efficacious then im tempted to think it’s a different mechanism for how benzos are seemingly all effective. Perhaps it really is the benzodiazepine site GABA-A PAM.
@SlamDancin. FWIW, my long term use was largely with Klonopin, with a switch to Valium the last 2 years prior to stopping use of these as well as Ambien - a very severe withdrawal, got close to ‘the edge.’
 
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Long Haul Mono

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EFT Tapping, meditation, magnesium.

During the day I'll practice Aggressive Rest Therapy, during which I do a (lying down) body-scan meditation session. For me, it's like 'hitting the reset switch', although the tension/stress eventually returns regardless of my mental state of mind. For example, raking the leaves off my lawn can 'fire things up' leading to a crash.

I also had (and still have) frequent urination/nocturia issues and believe it's tied to (physical) stress. In my situation, the physical stress (sympathetic nervous system becoming 'overactive') was causing my kidneys to 'hyper filter', but (according to a Renal specialist, and thankfully) were not found to be failing... just 'running fast'. This apparently seemed to generate more urine.

@Replenished it's great to hear Clonazepam provides relief, but for me, my long-term preference for 'better health' involves no drugs. I live in hope. :)
 
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Doesn't Clonazepam make you tired like Valium? I have taken Valium recently after onset of tinnitus made me mental. It was great, but makes me sleep much more. I hear Clonazepam can be more addictive.
 

Replenished

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During the day I'll practice Aggressive Rest Therapy, during which I do a (lying down) body-scan meditation session. For me, it's like 'hitting the reset switch', although the tension/stress eventually returns regardless of my mental state of mind. For example, raking the leaves off my lawn can 'fire things up' leading to a crash.

I also had (and still have) frequent urination/nocturia issues and believe it's tied to (physical) stress. In my situation, the physical stress (sympathetic nervous system becoming 'overactive') was causing my kidneys to 'hyper filter', but (according to a Renal specialist, and thankfully) were not found to be failing... just 'running fast'. This apparently seemed to generate more urine.

@Replenished it's great to hear Clonazepam provides relief, but for me, my long-term preference for 'better health' involves no drugs. I live in hope. :)

My long term preference for better health also ideally involves no drugs, and I only take Clonazepam once in a blue moon when absolutely desperate with anxiety or physical symptoms. It's not something that's a good idea to take for long periods of time or regularly if it can be helped.

I like your renal specialists theory on the kidneys running fast. I certainly have that. Always dumping out fluids and it's dreadful on bad days.

When you say 'aggressive reset therapy', what does that consist of? Just the meditation? It doesn't sound very aggressive ;). I do meditate, sometimes with more success than others but am still looking for that thing that will really allow me to calm the nervous system / fully relax and snap me out of the overstimulated state. I'm yet to find it.
 

Long Haul Mono

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When you say 'aggressive reset therapy', what does that consist of? Just the meditation? It doesn't sound very aggressive ;). I do meditate, sometimes with more success than others but am still looking for that thing that will really allow me to calm the nervous system / fully relax and snap me out of the overstimulated state. I'm yet to find it.

Firstly, I'm happy to have anyone jump in here to clarify if I get this wrong...

In a nutshell, Aggressive Rest Therapy's main point is to rest periodically throughout the day, whether you need it or not. I guess the 'aggressive' part of the title could be changed to 'preemptive' or 'proactive'?

As I understood it, you don't wait for a crash as an indicator/motivator to rest. I personally felt I get 'more mileage' out of the day when doing this.

FYI, I found a website that has the body scan guided meditation recording here.
 

Replenished

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Does Clonazepam make you tired like Valium?

For me, Clonazepam makes me 'floppy' per say. My limbs feel a little heavy and floppy and everything slows down just a touch but I don't feel tired on it and my mind actually feels clearer. On the same hand, it certainly does help with sleep due to reducing anxiety so I suppose it does make you tired if taken of an evening with the intention of sleeping.

I've only taken valium a couple of times and for me it was useless compared to clonazepam. Valium just made me drowsy in an unpleasant way and didn't reduce my anxiety.
 

YippeeKi YOW !!

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But protracted is generally beyond 18 months off the benzo or Z drug.
This is a not uncommon misunderstanding. Protracted Withdrawal Syndrome can kick in as soon as 2 to 3 months into a taper, or even less, when your system can't cope with either the speed or amount of your taper cuts, and it starts as Acute Withdrawal Syndrome which, when it persists, gets renamed as PAWS ....
 

YippeeKi YOW !!

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Doesn't Clonazepam make you tired like Valium? I have taken Valium recently after onset of tinnitus made me mental. It was great, but makes me sleep much more. I hear Clonazepam can be more addictive.
It is, largely because of the various CNS/neuro systems it works on (is was originally developed as an anti-seizure drug for epilepsy), as well as its much shorter half life, requiring ever increasing and more closely spaced increases.

Regardless of what various 'experts' say about clonazepam, it's a deeply destructive, deeply dangerous drug, and very very hard to get off of ....
 
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