How Might Benzodiapines (Ativan, Clonazapem) help with ME/CFS?

I use a split pill of the lowest dose pill of clonazepam to get some sleep when trazodone has failed.

Also, when my FM symptoms are extreme, a higher dose does tone things down, providing some sense of sanity possible.


So, occasional or intermittent use for me has never resulted in any need for dose escalation (physiologic dependence).
 
A firsr time beginner dose of diazepam this evening took me from angry ragey panic (at the my surgery, who messed up my meds yet again) to some sort of focused task orientated energy without panic. Not sure if this is the prior state minus the anxiety but still with the anger energy. Either way I feel I have more energy, perhaps because I'm not clouded by the panic.

Eta: to be clear, no fatigue here whatsoever.
 
I used to take a temazepam tab once a week at bedtime That was all I was allowed. I felt as though I had a proper, truly refreshing sleep and I had what felt like normal energy levels for half a day at least. I felt well and it was wonderful. My GP told me that now in Australia it's only possible to have it prescribed by a psychiatrist and she (my GP) considers me too well adjusted to justify a referral.
 
It sounds really complicated and difficult to plan an ethical trial. And yet, people continue to be prescribed these drugs, probably often without the protections such as close monitoring that a good trial would give. And some people report benefits.


Yes, maybe this is the way to start.


I’m sure that the same will be said for most drug trials but I can’t be the only one who I’m really not keen at all in going anywhere near benzos.

All for I think good reasons some of which are solid guesses based on how I react to things and family does, some guesses or presumption I suppose based on my ‘type’ of ME , some just plain I don’t like being out of it and reckon I’d end up being the group who couldn’t get off it if I had effects.

those who have sensible guts that come up similar to mine will probably be the same. Those who’ve sensible gut ideas the other way -perhaps due to other things that worked well for them etc I’d imagine would be more attracted to participate.

I don’t know how you balance that one other than to hope that such things would only ever be ‘an option’ ie a real choice and would continue being closely studied longitudinally given the nature of ME. So this could be borne in mind if there are likely to be types more vulnerable to issues or it working less well vs those it does. Because I don't think it is wrong if it is tested in those who put their hands up because their personal knowledge of themselves leads them to think they'd be more likely to benefit that be collateral damage for the validity of the outcome of the study. I could just see the nightmare if people got coerced onto them because the results were used to say 'most with ME benefitted' when the sample would surely self-select given the heterogenity of the condition.

Either way I’d be fascinated to know the why and the changes and where in the body and upstream/downstreams given as others have said the dramatic and perhaps counter intuitive to normal use/purpose effects
 
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Just to chime in as yet another person with very severe ME who finds all symptoms (e.g. muscle fasciculations, tinnitus, pain, fatigue, brain fog, diarrhoea) either reduce or completely disappear on a small dose of lorazepam (1mg). I take it occasionally for panic attacks, the cessation of my symptoms is just a welcome side effect. My mind gets so clear, and I become so energised and full of creativity. It's kind of similar to the rush of energy I get after really overdoing something - like it kicks my body into overdrive, temporarily.

I also have been taking 7.5mg zopiclone nightly for about 18 months, and I think it has a similar effect - the strain of lying on my side makes my back muscles shake, but if I do it about an hour after taking zopiclone, there's no shaking and I can sleep.
 
Read Whitney’s description here of how much Ativan helps his ME symptoms:


Does anyone know if there was ever any outcome on this?

My doctor prescribed lorazepam for my sleep problems, and as a positive side effect it dramatically improves my ME/CFS (very severe).
Reading through this thread, it seems that several people have benefited as well. The problem, of course, is that it’s addictive and the effect only lasts 6h or so.
 
I’ve finally made up my mind (although of course I can’t know in advance whether it will truly be the right choice for me) to try taking clonazepam (Klonopin/Rivotril) on a daily basis.

I’ve already been taking a small dose of bromazepam (Lexomil) every evening for quite a long time to help me sleep, roughly equivalent to 0.25 mg of Ativan. Since becoming severe, sleeping without a benzodiazepine has become practically impossible.

My plan would be to try to obtain clonazepam in France, which is not particularly easy, and take 0.25 mg in the late morning, around 11 a.m. or noon, and another 0.25 mg at night to sleep.

I am fully aware of the issues of tolerance, dependence and withdrawal that can come with benzodiazepines. So this is not a decision I’m taking lightly. But when you have severe ME/CFS, I also find myself wondering how to balance those risks against the possibility of regaining even a small amount of quality of life.

If it could simply help me tolerate noise and light a little better, talk a bit more with my children, or spend part of the day doing something other than lying down in silence, that would already be a huge improvement. I would love to be able to watch television again, or perhaps even read a few pages, provided of course that clonazepam does not leave me too sedated or cognitively dulled.

So I do not see this as an ideal solution, nor as a treatment for the underlying disease. It is more of an attempt to regain a little more tolerance and, with it, a small part of everyday life.
 
According to this paper, Benzodiazepines can increase the firing rate of dopamine neurons by inhibing their Inhibitors, which is also made responsible for their addiction potential.

I thought this might be interesting, as there seems to be some preliminary evidence of dopamine anomalies in ME/CFS, so this might be an alternative (or complementary) mechanism of action as opposed to the more immediate glutamate/GABA action.
 
According to this paper, Benzodiazepines can increase the firing rate of dopamine neurons by inhibing their Inhibitors, which is also made responsible for their addiction potential.

I thought this might be interesting, as there seems to be some preliminary evidence of dopamine anomalies in ME/CFS, so this might be an alternative (or complementary) mechanism of action as opposed to the more immediate glutamate/GABA action.
Thanks for the article @fst. Thats very interesting. I am a big fan of the dopamine theory and never thought that the positive effects felt on Klonopin could be also due to this mechanism. Maybe thats another clue we should dive on.
I’ve finally made up my mind (although of course I can’t know in advance whether it will truly be the right choice for me) to try taking clonazepam (Klonopin/Rivotril) on a daily basis.

I’ve already been taking a small dose of bromazepam (Lexomil) every evening for quite a long time to help me sleep, roughly equivalent to 0.25 mg of Ativan. Since becoming severe, sleeping without a benzodiazepine has become practically impossible.

My plan would be to try to obtain clonazepam in France, which is not particularly easy, and take 0.25 mg in the late morning, around 11 a.m. or noon, and another 0.25 mg at night to sleep.

I am fully aware of the issues of tolerance, dependence and withdrawal that can come with benzodiazepines. So this is not a decision I’m taking lightly. But when you have severe ME/CFS, I also find myself wondering how to balance those risks against the possibility of regaining even a small amount of quality of life.

If it could simply help me tolerate noise and light a little better, talk a bit more with my children, or spend part of the day doing something other than lying down in silence, that would already be a huge improvement. I would love to be able to watch television again, or perhaps even read a few pages, provided of course that clonazepam does not leave me too sedated or cognitively dulled.

So I do not see this as an ideal solution, nor as a treatment for the underlying disease. It is more of an attempt to regain a little more tolerance and, with it, a small part of everyday life.
Please be aware (in case that you dont already know) that Clonazepam dose equivalent is twice bigger than that of Lorazepam thus 0.25 Clona will be equivalent of 0.5 Lorazepam/Ativan. Wish you good luck, in a ideal world a medicine with same effects as Benzo’s without the tolerance, dependence and withdrawal horrible risks should exist.
 
Please don’t worry, I’ve looked into this carefully and I know exactly what I’m doing. At this stage, I would rather accept the risk of tolerance and dependence if it gives me back even a small amount of quality of life — being able to watch a little television, talk with my family, or tolerate stimulation better — than take nothing out of fear of benzodiazepines and spend my entire day lying in the dark waiting.

I also see a huge cultural gap between some of the discourse I read online and medical practice in France. Here, bromazepam, for example, is still prescribed quite commonly for sleep problems or anxiety in relatively young adults. In my own family, both my mother and my grandmother have taken a small dose of a benzodiazepine for decades without constantly having to increase it.

As for me, I’ve been taking the same very small dose every night for more than a year to help me sleep, without needing to increase it. For a long time, I was heavily influenced by alarming stories online, and at times I was more afraid of taking a benzodiazepine than of the consequences of repeated sleepless nights.

Looking back, in my situation I would rather sleep properly thanks to a small dose than go through repeated nights without sleep and risk getting worse, as has already happened to me when I was afraid to take this kind of medication.

Of course, everyone should be free to make their own choices while being fully informed of the risks. And yes, it would obviously be ideal to have a medication that could provide some of the benefits of benzodiazepines without the issues of dependence, tolerance, or withdrawal. But the benefit-risk balance is not necessarily the same for everyone, especially depending on the dose, the duration of use, and above all each person’s clinical situation.

Thank you in any case.
 
I appreciate its amnesic effect. When I wake up, I no longer feel as though I’ve spent eight hours crawling through the mud. The night may have been tough, but I can’t remember it.
Basically, I take it in cycles ranging from 10 days to three weeks. As soon as the effect starts to wear off, I reduce the dose until I stop completely, then a few days or weeks later, I start again at the maximum dose.
(I’ve been prescribed 10 mg of oxazepam)
Whether from a behavioural or molecular perspective, in my case, taking benzodiazepines has coincidated with the way out of hell: an end to the tinnitus, improved sensory perception and a return to some restorative sleep.
A ‘blank brain’ sensation might be a side effect, but how can I be sure? It might as well be ME/CFS without the ‘wired’ aspect.
Unexplained bouts of sadness, too.
But that’s nothing compared to what I was going through before.
I only took it when I needed it; in other words, I was barely sleeping at all two years ago, and now I only need it for about a week a month.
 
Please don’t worry, I’ve looked into this carefully and I know exactly what I’m doing. At this stage, I would rather accept the risk of tolerance and dependence if it gives me back even a small amount of quality of life — being able to watch a little television, talk with my family, or tolerate stimulation better — than take nothing out of fear of benzodiazepines and spend my entire day lying in the dark waiting.

I also see a huge cultural gap between some of the discourse I read online and medical practice in France. Here, bromazepam, for example, is still prescribed quite commonly for sleep problems or anxiety in relatively young adults. In my own family, both my mother and my grandmother have taken a small dose of a benzodiazepine for decades without constantly having to increase it.

As for me, I’ve been taking the same very small dose every night for more than a year to help me sleep, without needing to increase it. For a long time, I was heavily influenced by alarming stories online, and at times I was more afraid of taking a benzodiazepine than of the consequences of repeated sleepless nights.

Looking back, in my situation I would rather sleep properly thanks to a small dose than go through repeated nights without sleep and risk getting worse, as has already happened to me when I was afraid to take this kind of medication.

Of course, everyone should be free to make their own choices while being fully informed of the risks. And yes, it would obviously be ideal to have a medication that could provide some of the benefits of benzodiazepines without the issues of dependence, tolerance, or withdrawal. But the benefit-risk balance is not necessarily the same for everyone, especially depending on the dose, the duration of use, and above all each person’s clinical situation.

Thank you in any case.
Oh yes I definitely agree. I wanted to give a head up (just in case) regarding the dose equivalent. I share also a similar story in in-house use of benzos. My mother has used (as you said) the same dose for many years without the need for increase (eventhought on demand and not daily) while my brother stopped abruptly after 2 years of very high dose usage (ativan up to 10mg!!!) without withdrawal effect ( he was on an antipsychotic thought and maybe that mitigated the effect).

As for me I feel lucky that I found Clonazepam as this medication saved me many times from very bad crashes ( I still think how the course of my disease would have ended up during my first PEM/Crash episode if I knew that I had ME/CFS and used Clona before the exertion (international trip+ relevant activities).

I use it up to 4 times per month at a 0.25 mg dosage. And even after a year it hasn't lost its effect honestly and yes everyone should consider and evaluate its risk and if you think that France is a bit loose on benzo prescription you should see my countries were you can have them in the pharmacy without prescription if you push a bit let alone the rule that Antipsychotic like Zyprexa or Aripiprazole dont need presciption while antidepressants yes. There are a lot of things that dont make sense in this story.
 
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Given the good effects benzos have on many ME patients, I’m very curious whether anyone has ever tried ganaxolone (almost certainly not) or the new postpartum depression drug zuranolone. Anyone heard reports of trying these?

I was offered zuranolone recently but would’ve had to stop my sleep drug for it, so unfortunately I can’t report anything!
 
As a follow up thought, benzos have by far the strongest anecdotal signal of any drug at least in severe ME. I think it would be a good idea to think about whether some other drug could reproduce their effects while being more viable for consistent use. That’s why I bring these drugs up.

For those who take benzos during outings, do you do this because it reduces PEM or it just makes the outing more tolerable?
 
Given the good effects benzos have on many ME patients, I’m very curious whether anyone has ever tried ganaxolone (almost certainly not) or the new postpartum depression drug zuranolone. Anyone heard reports of trying these?

My close friend took benzos for years and slowly tapered off, he replaced it with Flexeril (cyclobenzaprine) which helped reduce PEM, it made his day more tolerable. His symptoms were mostly feeling "poisoned".

My ME doctor recommended this for some of his patients.

Not a recommendation, just sharing
 
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