Clonazepam (Klonopin) stops my symptoms almost completely

[Davsey27]

Thanks for your reply. Just out of curiosity, why do you think 4x a day is too much if the dose is the same as 2x per day .5? My doc said it wasn’t an issue although I’m not sure he’s an expert on taking benzos. Curious to hear your thoughts.

Given that the elimination half life is roughly 30-40 hrs dependent on your metabolism it's really unnecessary to be dosing 4x a day unlike Xanax which has shorter half life

Yes it would be equivalent to .5 2x a day.

I know you mentioned. .5mg was to sedating so perhaps. 5mg 2x a day may be too much

CFS doctor Paul Cheney had a protocol where he used .25mg in the morning another .25 in the afternoon and 1mg at night.Mentioning that this helps the seizure threshold as with ME brain is closer towards seizure than comatose

If you chisr to take it,lowest dose with most benefit may be a way to go

If I took .25mg more frequently like 4x a day it seems that the body may be more likely to get use to the drug,not that dependency doesn't occur after longer term use

 

[YippeeKi YOW !!]

Given that the elimination half life is roughly 30-40 hrs dependent on your metabolism it's really unnecessary to be dosing 4x a day unlike Xanax which has shorter half life

There's a deep misunderstanding of 'elimination half life' and metabolic/active half life.

'Elimination half-life' is the point at which, if you were drug-tested, there would be no metabolic traces left in your system to trigger a positive response.

'Active half-life' is the point at which the EFFECTS of the drug are no longer active, or have decreased enough to make it ineffective against whatever you were taking it for, ie, it ceases to offer relief of symptoms.

The active half life of Klonopin depends on your P450/3A4 pathway, and whether you're a fast eliminator or a slow eliminator. This will also depend on other prescription and non-prescription drugs you're taking at the same time, some of which may be inhibitors (they slow that pathway) or inducers (they speed up that pathway).

Drs and manufacturers really like to exaggerate the effective time of what they're prescribing or selling, so you have to do a bit of guessing, as well as personal observation, to determine the actual effective time of whatever you're taking.

In the case of Klonopin, its active level peaks at about 3-4 hours, and it's downhill from there. How fast you roll downhill depends on the factors I outlined above, and will vary from individual to individual.

To call Klonopin a 'long-lsting' relief option is deeply misleading. For comparison, Valium/diazepam has a half life as long as 48-72 hours, and it's active in your system for as long as 12 - 15 hours. It's ne of the reasons diazepam is used in so many tapering programs ....

EDIT, FOR CLARITY .... While it's true that Klonopin is hardly a long-lasting relief option, it's INFINITELY better than the Ativan and Xanax that Drs hand out like stocking stuffers at Christmas or party favors at a kids birthday ....

 

[Davsey27]

There's a deep misunderstanding of 'elimination half life' and metabolic/active half life.

'Elimination half-life' is the point at which, if you were drug-tested, there would be no metabolic traces left in your system to trigger a positive response.

'Active half-life' is the point at which the EFFECTS of the drug are no longer active, or have decreased enough to make it ineffective against whatever you were taking it for, ie, it ceases to offer relief of symptoms.

The active half life of Klonopin depends on your P450/3A4 pathway, and whether you're a fast eliminator or a slow eliminator. This will also depend on other prescription and non-prescription drugs you're taking at the same time, some of which may be inhibitors (they slow that pathway) or inducers (they speed up that pathway).

Drs and manufacturers really like to exaggerate the effective time of what they're prescribing or selling, so you have to do a bit of guessing, as well as personal observation, to determine the actual effective time of whatever you're taking.

In the case of Klonopin, its active level peaks at about 3-4 hours, and it's downhill from there. How fast you roll downhill depends on the factors I outlined above, and will vary from individual to individual.

To call Klonopin a 'long-lsting' relief option is deeply misleading. For comparison, Valium/diazepam has a half life as long as 48-72 hours, and it's active in your system for as long as 12 - 15 hours. It's ne of the reasons diazepam is used in so many tapering programs ....

EDIT, FOR CLARITY .... While it's true that Klonopin is hardly a long-lasting relief option, it's INFINITELY better than the Ativan and Xanax that Drs hand out like stocking stuffers at Christmas or party favors at a kids birthday ....

Appreciate your perspective,

Good to learn something new

 

[YippeeKi YOW !!]

Good to learn something new

I know, I feel the same way. I tend to dig deeper for information, especially when what I 'know' comes from the medical community ....

Which is fortunate, because the medical community is pretty reluctant to supply actual, real information, and seem content to coast on the bullshit machine that most of BigPharm provides. Go figure ....

 

[Davsey27]

I know, I feel the same way. I tend to dig deeper for information, especially when what I 'know' comes from the medical community ....

Which is fortunate, because the medical community is pretty reluctant to supply actual, real information, and seem content to coast on the bullshit machine that most of BigPharm provides. Go figure ....

Appreciate your input,

I was curious given that there isn't really any cure for Me/Cfs what are your thoughts on Long term daily low dose benzo usage if one gets improvement in brain fog,fatigue,reduced duration of pem?
Thank you

 

[YippeeKi YOW !!]

what are your thoughts on Long term daily low dose benzo usage if one gets improvement in brain fog,fatigue,reduced duration of pem?

I think long term use of any benzo is potentially dangerous and asking for even bigger problems than the ones you're trying to ameliorate with their use.

The problem with low dose daily use of a benzo is that, unless you're one of the really lucky ones who are genetically protected to some degree, low-dose use inevitably creeps up to medium-dose use, the to higher dose use, and then to the sudden realization that you're pretty far out on a limb with no help in sight. Your prescribing Dr will tell you that he/she has NEVER seen this kind of reaction, that they shocked, absolutely shocked, and imply that it's all in your head .... there will be NO help in tapering you off this stuff or even any suggestion that you should do so, until ultimately, fearing for their license or a hearing on their prescribing, they'll just cut you off cold.

That said, I know how hard it is to not use something that you think might provide relief, but I think it's important to roll those dice with some basic understanding of what the results could be ....

Whichever way you decide to go, good luck with it, and I'm here should you need any follow-up input or info ....

 

[Seadragon]

I think long term use of any benzo is potentially dangerous and asking for even bigger problems than the ones you're trying to ameliorate with their use.

The problem with low dose daily use of a benzo is that, unless you're one of the really lucky ones who are genetically protected to some degree, low-dose use inevitably creeps up to medium-dose use, the to higher dose use, and then to the sudden realization that you're pretty far out on a limb with no help in sight. Your prescribing Dr will tell you that he/she has NEVER seen this kind of reaction, that they shocked, absolutely shocked, and imply that it's all in your head .... there will be NO help in tapering you off this stuff or even any suggestion that you should do so

That said, I know how hard it is to not use something that you think might provide relief, but I think it's important to roll those dice with some basic understanding of what the results could be ....
....

Yes, agree with this. It happened to me 10 years ago and to several other forum members here. And the other thing is that they stop working after a while for most people if used regularly due to tolerance. @Davsey27

 

[dannybex]

Thanks - that is reassuring. Last night I had a major adrenaline rush, barely slept through the night, high HR etc. Theoretically this could also be because of a virus, what do you think? I’m still not sure it’s the clonazepam because this whole episode started so suddenly…

There could be dozens of reasons, but I really doubt it's the clonazepam, especially since it was a low dose and you were only on it for 7 weeks. Sometimes adrenaline or cortisol kicks in because one's blood sugar is low from not getting enough carbs/calories/...food. Extra stresses earlier in the day could've depleted your 'fuel'...

And if it is from the clonazepam, then just know you're not going crazy, you're experiencing normal withdrawal symptoms. But I still doubt it's from that.

 

[Replenished]

I've been having this strange pressure in my chest and a weak, fluttery insufficiency feeling on the heart for months and it's been at it's worst in recent days/weeks. I'm sure it's due to some low blood issue and POTS like automatic issues. Anyway, I took a Clonazepam earlier, not for that symptom but in general I've been feeling really really bad the last few days, worryingly so. Just so uncomfortable, thirsty, dizzy, tense, disorientated, just odd, malaise. Anyway I had to go out and I took a Clonazepam on the count it might help me get through the couple of hours of being out but also that it might give me a little break from my symptoms or reduce them a little. And low and behold, something that I wasn't expecting at all, the chest fluttering insufficiency feeling has all but gone. I don't understand how or why but again Clonazepam regularly stops many of my symptoms and usually leads to a better day or two even after the drug has worn off.

I've read Clonazepam is a mast cell stabiliser? Although not prescribed for this. I wonder if it might be worth trying one of the mast cell stabiliser drugs. Not sure if this is the particular mechanism of Clonazepam that helps me or something else. Any ideas?

 

[dannybex]

I've read Clonazepam is a mast cell stabiliser? Although not prescribed for this. I wonder if it might be worth trying one of the mast cell stabiliser drugs. Not sure if this is the particular mechanism of Clonazepam that helps me or something else. Any ideas?

That could be one reason, but the other is that it lowers overall stress reactions -- the almost automatic 'fight/flight/freeze' reactions -- so your body can heal. And stress raises histamine as well. The key is to learn ways bring stress levels down without the addictive drug.

 

[YippeeKi YOW !!]

@Replenished

The key is to learn ways bring stress levels down without the addictive drug.

At the risk be being boring, let me underscore @dannybex ' warning ..... clonazepam is really really really addictive, and it's so sly about it that you wont know til you try to cycle off ....

Proceed with caution ....

 

[YippeeKi YOW !!]

Hiya @Wayne, good to see you, and here's hoping it's a happy New Year ..... what're the odds ....

And @dannybex .... thank you for chiming in with your warning, which kept me from being the Lone Voice of Doom .... Happy New year !!!!

 

[Replenished]

@Replenished

At the risk be being boring, let me underscore @dannybex ' warning ..... clonazepam is really really really addictive, and it's so sly about it that you wont know til you try to cycle off ....

Proceed with caution ....

I hear you. Although, I pretty avoid taking at until I feel it's absolutely necessary. I don't feel drawn to taking it. It's just when I get in a phase of days and days or absolutely hellish symptoms and awful sleep that I eventually say, you know, it's probably best if I take a Clonazepam to put a holt to this, and typically it gives me a little respite, and then the days after I invariably am quite a bit better and then try and build from there. This is probably once every couple of months that I resort to taking Clonazepam.

And yes, if I had a way of bringing similar stress reduction / reset without the drug I would do it. I'm yet to find that. Plus it feels as though the effects are more then stress reduction and it's actually in the day or two after taking the drug that I feel most benefit in terms of symptom reduction.

 

[Replenished]

That could be one reason, but the other is that it lowers overall stress reactions -- the almost automatic 'fight/flight/freeze' reactions -- so your body can heal. And stress raises histamine as well. The key is to learn ways bring stress levels down without the addictive drug.

For sure. Any recommendations on bringing the stress down naturally?

Meditation I find does very little for me, TVNS doesn't help, mindfulness doesn't help. If it's stress - fight/flight/freeze, it feels very under the surface/physical rather than me consciously being very stressed.

 

[YippeeKi YOW !!]

Any recommendations on bringing the stress down naturally?

In terms of dealing with the effects of stress, like severe anxiety and panic, for me the magical fix was patient application of mag glycinate, along with a small amount (0.25 mg) of melatonin, and about 250 mgs of Vit C .... all work at blocking the NMDA receptors, and reducing the dominance of glutamate/glutamic acid.

It wasn't a quick fix, but by taking it steadily, in small amounts (50 mgs of mag) at very tight intervals (sometimes 1 hour apart), I defused the panic/anxiety attacks, and have continued to use mag glycinate, Vit C and occasional melatonin, to keep stress responses at bay ever since, while also boosting my calcium ..... mag and calcium compete for absorption, so it's essential to maintain a decent balance of calcium. The tricky part is that calcium can also trigger stress responses, because things like the NMDA receptors and AMPA receptors are calcium ion-gated .... so continuing with the mag gly at spaced intervals with whatever form of calcium you chose, is essential .....

 

[Replenished]

I made thise thread a few years ago and still Clonazepam is the only thing that helps reduce my symptoms. On the day of raking the clonazepam but also for the following couple of days.

I talking I'd flag this post up again to see if anything might have any new ideas on how clonazepam might be helping and anything that could be taken instead to get symptom improvement, given taken benzodiazepenes regularly isn't a good idea.

 

[perchance dreamer]

Since my experience with clonazepam was overwhelmingly negative, I turned to other treatments of an overactive sympathetic nervous system. These are some of things that helped me.

Training myself to breathe through my nose instead of my mouth has had a great effect for calming my nervous system. I had to have ENT procedures done so I could breathe comfortably through my nose, which I do all day and night now. Nasal breathing has so many advantages over mouth breathing.

Breathing exercises can be very calming and help with sleep, so at night or if I'm stressed, I do 4,7,8 or box breathing. Youtube has tons of guided breathing exercises.

Calming supplements help such as magnesium glycinate and magnesium lactate. I also bathe in either magnesium sulfate or chloride.

A really helpful combination supplement for calming is Neurobiologix GAD Enhancer. Recently, Neurobiologix was sold to NBX Wellness, which did not change the Neurobiologix formulas, but repackaged and renamed some of them. GAD Enhancer is now called NBX Wellness Neuro Calm & Rebalance. It's a combo of magnesium, zinc, glycine, theanine, and kava kava. It's a GMP product, so the quality is high.

Here's an example of how well breathing exercises and calming supplements work for me. Six weeks ago I had the worst shock of my life. My heart was racing, and I probably had buckets of excess cortisol.

I did two 5-minute rounds of 4,7,8 breathing and took a 70 MG capsule of magnesium glycinate. They greatly calmed me even though I was still immensely upset. I slept well that night even though I dreamed vividly about the shocking incident. Calming the physical manifestations of stress helped me process what happened over the following weeks.

If you are interested in learning about proper breathing and its importance, I highly recommend James Nestor's book The New Science of a Lost Art. Patrick McKeown is another breathing expert. His most famous book is The Oxygen Advantage.

Good breathing is so important to health that I think it should be taught early in childhood and that doctors should mention it to their patients as a useful tool for those who have conditions like high blood pressure, hypoxemia, or stress problems.

 

[Seadragon]

I made this thread a few years ago and still Clonazepam is the only thing that helps reduce my symptoms. On the day of raking the clonazepam but also for the following couple of days.

I talking I'd flag this post up again to see if anything might have any new ideas on how clonazepam might be helping and anything that could be taken instead to get symptom improvement, given taken benzodiazepenes regularly isn't a good idea.

No-one really knows.

I really wish researchers would look into this as it might offer clues about the illness.

@Janet Dafoe I hope you don't mind me tagging you but wondering if Ron Davis has any theories about this phenomenon?

Benzodiazepines helped me the most also but I can't take them anymore as I ran into problems of tolerance and withdrawal symptoms so had to taper off about 10 years ago.

 

[kushami]

I made thise thread a few years ago and still Clonazepam is the only thing that helps reduce my symptoms. On the day of raking the clonazepam but also for the following couple of days.

I talking I'd flag this post up again to see if anything might have any new ideas on how clonazepam might be helping and anything that could be taken instead to get symptom improvement, given taken benzodiazepenes regularly isn't a good idea.

No ideas on how it might be working, sorry, but as autonomic problems were mentioned as a possibility earlier in the thread, have you thought of seeing an autonomic specialist?

 

[BaileyBeached]

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.

I guess this is old and I didn't read all 17 pages of responses, but some from my list of things that increases gaba activity and/or lower glutamate activity.

Taurine is what works best for me, licorice works but raises bp and does other stuff which you or may not want, lemon balm lowers cortisol which you may or may not want, l-theonine, bpc-157, Kpv, tb4-frag (last 3 are peptides),

Peptides helped in many ways but spiked my mcas