Clonazepam (Klonopin) stops my symptoms almost completely

[Marylib]

@SlamDancin I'm happy to contribute from my own experience.

I've been able to have a small stash of clonazepam in liquid drops - called Rivotril. I've known since the beginning that many of us were prescribed this med (aka Klonopin) for sleeping and that it's a benzo, and many ultimately wanted out, so I have avoided regular or normal dose use. If my brain totally fritzes out - as in I can't think at all, but I need to, one or two drops 'unfreezes it' (for lack of a better word.) There's a sense of calm, and I can think and speak more rationally. If sleep is really bad, I'll take 3 drops along with my regular sleeping med at night. Next night I will take one drop and then none for as long as possible. (CBD cannabis has a decent effect on the thinking and speaking, but not the sleep.) There's a reason this stuff is so popular - it works. Until, for some, it doesn't.

I had an ME friend in her mid 70's by now who only stopped because the generic didn't work anymore and she was unable to find the formulation that did work. She has been bed bound for many years, has intractable sleep reversal, many gastro problems, pain - you name it, and this stuff enabled her to have a bare smidgen of a life. I hope someone can come up with something besides a benzo that does work.

 

[YippeeKi YOW !!]

All the best to you, YippeeKi YOW !! Your concern has not gone unnoticed by me. Thank you!

 

[Rvanson]

@SlamDancin I'm happy to contribute from my own experience.

I've been able to have a small stash of clonazepam in liquid drops - called Rivotril. I've known since the beginning that many of us were prescribed this med (aka Klonopin) for sleeping and that it's a benzo, and many ultimately wanted out, so I have avoided regular or normal dose use. If my brain totally fritzes out - as in I can't think at all, but I need to, one or two drops 'unfreezes it' (for lack of a better word.) There's a sense of calm, and I can think and speak more rationally. If sleep is really bad, I'll take 3 drops along with my regular sleeping med at night. Next night I will take one drop and then none for as long as possible. (CBD cannabis has a decent effect on the thinking and speaking, but not the sleep.) There's a reason this stuff is so popular - it works. Until, for some, it doesn't.

I had an ME friend in her mid 70's by now who only stopped because the generic didn't work anymore and she was unable to find the formulation that did work. She has been bed bound for many years, has intractable sleep reversal, many gastro problems, pain - you name it, and this stuff enabled her to have a bare smidgen of a life. I hope someone can come up with something besides a benzo that does work.

The non- Benzodiazipe's like Ambien, Sonata, and Lunesta simply work for a few hours, then I am wide awake. I can't take the antipsychotic medicine, like quetiapine, nor the TCA's like amitriptyline nor Desyrel/Trazodone. Belsomra is extremely expensive at $400 dollars without insurance, I still woke up way too early. They have a new med that is like Belsomra, called Dayvigo, but it's still much like Belsomra and
Dayvigo still can leave still you groggy and dependent on it. It will be classified as a controlled substance.

https://www.everydayhealth.com/insomnia/fda-approves-new-insomnia-drug-dayvigo/

 

[Marylib]

That doesn't leave you with many options, @Rvanson. I basically keep just switching the meds up to get some kind of effect, but trazodone does work for me - until it doesn't. I took nortriptylene for awhile, until the side effects got too much and I had to keep upping the dose beyond what I could handle. Same thing with me as far as the ezopiclone- style meds go. Antihistamines are also one of my stand by's - but the massive one - quentiapine - is only an emergency option to avoid hypnogogic hallucinations from sleep deprivation. Not a pleasant experience at all.

 

[josephine2]

I know folks believe the nonbenzo Z drugs are safer than conventional benzos. But they act very similarly in the brain/body. In a way they are worse since they are like a quick sledge hammer which wears off in a few hours. And then - there you are awake in bed with insomnia withdrawal that is relieved only by taking the drug again (or another Z drug). Its an endless cycle. And believe me, I understand. I really miss my Z drug.
I tried Benadryl and melatonin but reacted badly back in early espiclone w.d.. I might try again. I know folks who tried seroquel with some success. I tolerate tiny amounts of certain opioids on bad nights but if I take them more than 3 nights in a row -- the CNS withdrawal sx s start happening and so I lay off. I tolerate THC/CBD tinctures but rotate those and off, too. I actually have drug-free nights pretty frequently now.
It seems impossible to get off the Z drugs - but if I did after years on them --I think anyone can.
However, if someone who is getting by on them and not in tolerance -- I understand the desire to not rock the boat. But I didn't know how dependent I was until I tried to stop. And I think I was in interdose withdrawal and didn't know.
Well - I guess I've said everything that I can say on this thread. Peace and sleep.

 

[dannybex]

This thread reminds me of me, 23+ years ago when I was first prescribed klonopin in the ER. I thought, wow, well, that's great. Now I can calm down, get rid of that 'wired but tired' feeling, get some rest and I'll be fine.

Two weeks later when I went back for my follow-up, and mentioned how great the drug was. The nurse said, "Oh, you don't wanna take that for more than a couple weeks, or you'll end up in a psych ward."

Great. So I took it off and on for a few years -- only when needed -- but that eventually turned into daily use for years. Then I decided I had to come off of it, so went on the Ashton Protocol w/my then doc's approval -- only to have her stop it a couple years later because it was taking too long. (I'd tapered down by 80% using the equivalent dose of valium.) It was taking about six months longer than it should've, but the doc was frustrated and/or pressured to stop, so she stopped the valium, put me BACK on clonazepam -- the old dose -- and 8 years later, I'm only down to 1/2mg 2x day.

Probably could've gotten down lower than that sooner, but will try to make a better effort going forward.

The drug is indeed evil IMO. It messes up liver function, lowers white blood cell counts, can cause anemia, etc.. And now a new study came out showing long term use 'destroys neural connections in the brain'.

The study was done in mice, and probably used higher doses than we take, but still, another good reason to taper off of it. @ahmo and others from the ol' days found things like hypothalamus extract and b12/folate to help them become calmer. B12 lowers histamine, so that makes sense.

Anyway, hope everyone can find a way -- or ways -- to taper off, at least eventually.

 

[YippeeKi YOW !!]

It was taking about six months longer than it should've, but the doc was frustrated and/or pressured to stop, so she stopped the valium, put me BACK on clonazepam -- the old dose -- and 8 years later, I'm only down to 1/2mg 2x day.

I'm trying really hard to understand the logic behind your Drs decision.

If the taper was " .....taking too long ....", and this almost always translates to something involving their convenience (tapers are long, tedious, nerve-shredding things, requiring a great deal of empathy and patience on the part of the prescribing Dr, not to mention what it takes out of the poor paitient trying to gut thru it) and/ or standing with their medical community, including the hospital they have priveleges at, WHYYYYYY wouldnt she just hold you at the diazepam level you were on, which assuredly was lower than the old Klonopin levels. Or at the very least (which is what most Drs are apparently naturally inclined to do), put you back on the lower equivalent dose of Klonopin ...

The logic escapes me.

I cant begin to magine the varous levels of hell you were pushed, propelled, then drop-kicked thru, and the fact that you survived it is a testament to the tougness and durability of your being.

I'm so sorry, Danny ..... hang in, keep punchin', and know that there's an end to this.

And a special place in Hell for your Dr ....

The drug is indeed evil IMO.

It is. Vile and evil, and prescribed by some Drs as actual medicne. Which I suppose it would be if you were suffering from epilepsy, which is what Roche developed Klonopin for, hoping to drain off a large percentage of Dilantin's steady income stream.

Like all psych drugs, it can have what feels like remarkably positive effects for a period of time, different for everyone who takes it, but while it seems to be making everything better, it's also rewiring your brain, your CNS, your endocrine system, your gut, and disconnecting parts of your brain that generally like to chat with each other to keep up with the haps.

But it gives the Dr the God-like feeling of actually doing something, of waving the magical Cadeuceus that heals all ills, and it stops the patient 's whining (the Drs evaluation, not mine) about how tired and sick they feel, and the pharma gods smile down on all. Lavish speaking engagements and 'conferences' in exotic vacation spots all around ....

Well 2 out of three aint bad. And life goes on. Unless you're among the unlucky ...

 

[dannybex]

I'm trying really hard to understand the logic behind your Drs decision.

If the taper was " .....taking too long ....", and this almost always translates to something involving their convenience (tapers are long, tedious, nerve-shredding things, requiring a great deal of empathy and patience on the part of the prescribing Dr, not to mention what it takes out of the poor paitient trying to gut thru it) and/ or standing with their medical community, including the hospital they have priveleges at, WHYYYYYY wouldnt she just hold you at the diazepam level you were on, which assuredly was lower than the old Klonopin levels. Or at the very least (which is what most Drs are apparently naturally inclined to do), put you back on the lower equivalent dose of Klonopin ...

The logic escapes me.

Yup. Don't get me started. This all happened a couple years after having what I thought were bad reactions to methylation supps, where my anxiety/panic shot up 10x. But in hindsight, the anxiety/panic was a result of waaaay too many methyl-supps being prescribed all at once (by a different doc). As noted above, they've been really helpful the last year or so...just wish I had figured it out 10+ years ago. Oh well...

Anyway, that was my initial reaction as well. Did not compute on any level. I suppose I was nervous about going on the equivalent dose of klonopin due to the shorter time it stays in the system, but even if she'd met me halfway -- and switched back at a slightly higher level, things may have been different.

It gets crazier though. Ever since then, I've had to do random drug tests -- say every third visit -- because apparently she thought I was 'using'. Another incomprehensible conclusion, especially considering not one drug test (let's say eight of them?) has since come back positive for ANY drug. Including klonopin.

If there's anything good to come out of stories like this, is the fact that they do not prescribe ANY benzos anymore, at least not at medicaid clinics/hospitals in the state of Washington. I tried switching to a new doc back in 2014 (after I'd moved a good distance from my old clinic), and after some research online, found a guy with glowing reviews at a clinic maybe 3 miles away, so I set up an appointment.

The first five-ish minutes went okay. I explained what was going on at the time, and giving him some credit -- he was the first doc to confirm I had what was called 'stasis dermatitis' on the right side of my right leg.

Then I said, "Oh, and I'll also need a refill for clonazepam."

He instantly went from Mr. Hyde to Dr. Jeckyll, and yelled -- actually YELLED -- "Oh, so THAT'S what you're here for!"

Sigh. I guess I was so stunned that I didn't think of telling him he could call/fax my old clinic and confirm I'd been taking it for years. Not exactly wise to just stop it cold turkey. But that's what he suggested -- getting some counseling instead. And that's when I found out that it is no longer prescribed here, period.

Anyway, thanks for your kind words. This isn't about me (he says after writing a novel about 'me'), it's about making sure one takes these for very limited time periods, if at all. There are other options, as noted earlier, not to mention trying to address what things are causing the overstimulation/wired but tired issues.

I'm getting better. Seven years ago I switched to a younger/nicer/smarter doc at the same clinic, who has been really great, especially considering her limitations. Using mostly supps, different foods, etc., I've gone from about 15% to 35% in the last year, and would be happy if I can get to even 50%, especially at my age. And part of that will be getting off this drug, that Paul Cheney (may he not rest in peace -- kidding) insisted was not addictive.

 

[YippeeKi YOW !!]

It gets crazier though. Ever since then, I've had to do random drug tests -- say every third visit -- because apparently she thought I was 'using'. Another incomprehensible conclusion

Oh YIKES !!!

I dont know if I've posted the following on this thread already, if so. apologies, but it's important enough to repeat ....

SHE'S TOTALLY COVERING HER ASS, which seems to be proof that she knew that what she did was against even the most minimal performance of Standard of Care and all basic rules of " ....caring for the patient's needs ...". What she did amounts to reckless endangerment and callous disregard, both excellent grounds for an attempt at a malpractice lawsuit. She did what she did, even knowing the dangers it presented to you, the patient, and she didnt care.

An old friend who's an atty explained it to me, in relation to a mutual friend who was going thru absolute hell with the crap Drs were shoving at her and insisting she needed to take, and her personality had changed dramatically.

"It's called 'pre-impeaching the witness', and it's a standard medical technique. Should the patient decide to sue, the first thing that the Drs counsel would trot out would be the history of psych meds, along with the didactically stated opinion that the plaintiff was mentally deranged. It's a skeevy move, but Drs have a lot of income to protect, and they do it the same way the Mafia does ...."

This isn't about me (he says after writing a novel about 'me')

....

 

[Marylib]

@dannybex What a nightmare.

 

[frozenborderline]

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.

Clonazepam has helped my nervous system too but can't be used regularly without tolerance. : ideas for alternatives: any safe nmda antagonist --ketamine, memantine, xenon (expensive but safe)... iv or injected magnesium (more mild but worth a try), progesterone (@Hip has it in his nmda antagonist thread ), maybe taurine ...

Now for other things besides nmda antafonists that will do similar things to benzos wrt gaba/glutamate, if not acting by exact same mechanism: gabapentin or Lyrica, more subtle but still... some help. Phenibut: almost same level of dependence induction as clonazepam , probably not quite as bad I took it twice a week at full, high doses, for literally a whole semester of school with no withdrawal issues... phenibut has more effects on gaba b than a, unlike benzos, and it's got gabapentinoid effects, it affects cognition way less than benzos, you can be very lucid on it.

Kratom will help a little bit bc of nmda antagonist combined wjrh partial opioid agonism... the dependence caused by kratom is real but nowhere near as bad as benzos , but if you get stimulant strains it can mess wjth your pots. Opioid agonists lower glutamate indirectly and thus help with that brain on fire feeling that benzos are helping with...but kratom also has nmda antagonist properties, which makes it sort of like killing one bird with two stones??? Lol ... by which I mean using two things to do one thing at the same time pharmacological.

Imidazenil is something which could be very promising for me/cfs and for helping people with benzo dependence problems which can be hell, it's a drug that affects gaba and I believe agonized gaba receptors without causing upregulation or tolerance

On a note of more mild things, I really think that everyone should try California poppy. Not an opium poppy, it just has the same name, and is more a mild sedative without opiates in it, which has properties similar to benzos without the intense dependence, and more mild. It doesn't cause the possible liver problems that skullcap and valerian can.
Although if u don't have liver problems and don't take tylenol or drink I'd recommend skullcap and valerian

I hope this list of things helps

Gaba/glutamate imbalance is indeed one of the main issues in me/cfs but I would not recommend taking benzos more than once a week or even less. Whitney takes them I believe once a month. As far as I know taking them once a week it's almost unheard of to develop tolerance, but once a month even more so... like that would be genuinely unheard of.

For people already dependent on benzos things can be pretty bleak, although Italian doctors have a method for getting people off using flumazenil, a benzo antagonist. Which sounds insanely dangerous , but studies show it works , tapered up from very small doses.
Flumazenil is not something anyone should try at home though. I may go to Italy for that if I can ever be well enough to travel

 

[frozenborderline]

but if you get stimulant strains it can mess wjth your pots

This means you should get red, gold, or yellow strains. Avoid green and white ones. Herbal salvation was a good vendor but idk if they still sell stuff.

@Hip had some list of interesting gabaergics from Russia that aren't used as mucj here , that I may be missing some of when I talked about meds that aren't benzos that can affect gaba

 

[vision blue]

Y% to And part of that will be getting off this drug, that Paul Cheney (may he not rest in peace -- kidding) insisted was not addictive.

I remember back a really long time ago in my mothere generation, the prescribed drug of choice for occasional anxiety was phenobarbital. Then one day someone decided that was addictive and they pushed valium like crazy saying that wasnt addictive I wonder if that was by the manufacturer of valium. They stoped pre prescribing phenobarbital and substituter valium. My mother hated the effects of valium (must be genetic as i get pretty sick from it too) Anyway to hear you say thevev now stopped prescribing valium is i teresting. History of these drugs is interesting. I wonder how phenobarbital comoared to valium on long term saftey records. Not sure why barbituates were villified

Good look with continued weaning off that poison.
Amusing on the doc whonwent ballistic. Ive been doctor shopping lately and after i explained a bunch of complicated things asked if i scared him off yet. He said the only patients he ever turned away were drug seekers. That was a turn off actually. If peopke drug seek, its likely his system that made them that way and they really need it

 

[frozenborderline]

I remember back a really long time ago in my mothere generation, the prescribed drug of choice for occasional anxiety was phenobarbital. Then one day someone decided that was addictive and they pushed valium like crazy saying that wasnt addictive I wonder if that was by the manufacturer of valium. They stoped pre prescribing phenobarbital and substituter valium. My mother hated the effects of valium (must be genetic as i get pretty sick from it too) Anyway to hear you say thevev now stopped prescribing valium is i teresting. History of these drugs is interesting. I wonder how phenobarbital comoared to valium on long term saftey records. Not sure why barbituates were villified

Good look with continued weaning off that poison.
Amusing on the doc whonwent ballistic. Ive been doctor shopping lately and after i explained a bunch of complicated things asked if i scared him off yet. He said the only patients he ever turned away were drug seekers. That was a turn off actually. If peopke drug seek, its likely his system that made them that way and they really need it

Uhhh we can talk about the side effects of benzos within reason but phenobarbital wasn't "vilified" and there's no conspiracy. Benzodiazepines are literally safer than barbiturates. Granted, I'm for legalization of all drugs so people people take take with informed consent and I think barbiturates may have medical value , especially for euthanasia. But barbiturates could kill people in overdose easily. Benzos can only cause fatal overdoses when combined with other drugs. Seriously... it sounds crazy, but benzos are known to not have an ld50 or ld100, or if they do, it's so absurdly high its not possible to reach through accidental overdose. To be clear, so nobody twists my words--im saying benzos *on their own* can't kill in overdose. Obviously when combined with other drugs they can.

Now, barbiturates also caused just as bad or worse withdrawal than benzos... but i think the main reason they switched to benzos is that there was far less risk of accidental death. I mean seriously, people died all the time from barbiturates, it's unheard of with benzos *unless taken with other drugs*.

On the other hand barbiturates have value for helping people get off alcohol and for euthanasia

 

[YippeeKi YOW !!]

Then one day someone decided that was addictive and they pushed valium like crazy saying that wasnt addictive I wonder if that was by the manufacturer of valium.

Phenobarbital is truly lethal. And highly addictive. It forces a deadly increase in the length of time that chloride channels stay open, depressing the CNS dangerously, while also depressing the respiratory system, a very bad combination of actions.

I think the vilification came more from the ME's offices (medical examiners, who do autopsies on patients who die without clear underlying medical reasons or under unexplained circumstances) who were overloaded with phenobarbital overdose deaths.

I wonder how phenobarbital comoared to valium on long term saftey records. Not sure why barbituates were villified

Barbiturates were vilified because they're definitely very very bad. On long term safety standards, Valium or its generic, diazepam, is infinitely better. And I say this as someone who regularly rails against the excessive prescription of benzos, and their capacity for rapid habituation/addiction and the interminable agony of trying to get off them, unaided by the Drs who were the source of that dependence/addiction and who, to this day, continue to deny their danger.

 

[YippeeKi YOW !!]

Benzos can only cause fatal overdoses when combined with other drugs.

This is just patently inaccurate nonsense.

It's just as easy to overdose on Xanax, Ativan, or plain diazepam as it is on barbiturates. The only difference is how fast it can kill you.

Now, barbiturates also caused just as bad or worse withdrawal than benzos..

Again, not true.

Withdrawal from various kinds of benzos seems to be way harder than from phenobarbital, altho it's difficult to say, because phenobarbs are rarely prescribed anymore except in particular cases and needs.

As far as phenobarb's use in alcohol withdrawal, valium is just as effective, if not more so, with far less danger. Alcohol fiercely potentiates phenobarb's CNS and respiratory depressing effects, and while there's a similar effect with Valium, it's dangers are greatly reduced, comparatively speaking.

And the fact that phenobarbital is the preferred drug of choice for euthanasia really tells the story. It's a pretty quick, easy, and fairly painless way out, and is used extensively for this purpose.

I mean seriously, people died all the time from barbiturates, it's unheard of with benzos *unless taken with other drugs*.

AGAIN, THIS IS SIMPLY NOT TRUE.

Overdoses of short half-life benzos and even the longer-acting benzos are extremely deadly taken solo and absent any other precipitating drug in combination with them, and are increasing in this country dramatically, almost catching up with opioid overdose deaths on a per capita basis.

 

[vision blue]

But were they well founded accidental deaths from phrobarbitol? Meaning were they abused or used stupidly or irresponsibly in cases of deaths. Alot of people do stupid stuff like double the fose on their own or mix with things that dont mix or take when they already have respitory depression and arent supposed to. Prescribing barbituated with care may still be a better option than just blindly giving valium to everyone since its more idiot proofed. .

 

[SlamDancin]

Phenobarbital was used when I was in rehab for benzos and it actually worked pretty well to deal with withdrawal

 

[YippeeKi YOW !!]

But were they well founded accidental deaths from phrobarbitol?

Extremely well documented, which is why the switch to diazepam.

Meaning were they abused or used stupidly or irresponsibly in cases of deaths.

I'm sure in some cases they were, but that doesn't negate the fact that it's incredibly easier to die from phenobarb abuses than even diazepam.

Alot of people do stupid stuff like double the fose on their own or mix with things that dont mix or take when they already have respitory depression and arent supposed to.

Yes, and that applies equally to diazepam, particularly when patients hit tolerance withdrawal, which would be the same case in phenobarb ... the main difference is the speed with which phenobarb will kill you, and the much, much narrower and tighter window for error ....

Prescribing barbituated with care may still be a better option than just blindly giving valium to everyone since its more idiot proofed. .

No, it absolutely isn't for all the reasons that I've already stated.

Unless you're using phenobarbital for the express purpose of killing yourself, it's a good idea to avoid it entirely, except under extremely close observation by your deeply concerned prescribing Dr, and we all know how limited and rare that is ....

Prescribing barbituated with care may still be a better option than just blindly giving valium to everyone since its more idiot proofed. .

YIKES !!! It's exactly the opposite, altho I agree that the massive overprescription of diazepams (usually the quickly addictive and damaging Ativan and Xanax) is a real danger, and has been proven to be.

Pheno is NOT more idiot-proofed. It doesn't take a whole lot to depress your CNS and respiratory system dangerously, and it can be more easily misused. It's particularly dangerous in combo with almost anything else, including the readily available option of alcohol, which increases its effects dramatically.

 

[frozenborderline]

This is just patently inaccurate nonsense.

It's just as easy to overdose on Xanax, Ativan, or plain diazepam as it is on barbiturates. The only difference is how fast it can kill you.

Again, not true.

Withdrawal from various kinds of benzos seems to be way harder than from phenobarbital, altho it's difficult to say, because phenobarbs are rarely prescribed anymore except in particular cases and needs.

As far as phenobarb's use in alcohol withdrawal, valium is just as effective, if not more so, with far less danger. Alcohol fiercely potentiates phenobarb's CNS and respiratory depressing effects, and while there's a similar effect with Valium, it's dangers are greatly reduced, comparatively speaking.

And the fact that phenobarbital is the preferred drug of choice for euthanasia really tells the story. It's a pretty quick, easy, and fairly painless way out, and is used extensively for this purpose.

AGAIN, THIS IS SIMPLY NOT TRUE.

Overdoses of short half-life benzos and even the longer-acting benzos are extremely deadly taken solo and absent any other precipitating drug in combination with them, and are increasing in this country dramatically, almost catching up with opioid overdose deaths on a per capita basis.

Are there examples in the literature of benzo overdose deaths with no other drugs in someone's system?

If there were , I'd imagine the ld50 or lethal dose would certainly be far higher compared to therapeutic doze than the ratio would be with barbiturates ?