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

Read Whitney’s description here of how much Ativan helps his ME symptoms:

 

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I am female, experience a bit if an energy boost when zopiclon kicks in so much that I regret that I have to go to bed which was the reason for taking it. Dont feel hungover the next day as long as I've taken it early enough. Most say they can't function well the next day after zopoclon.

I have just been prescribed diazepam, also just for occasional use, which will be interesting.

I really believe that pharmacists could come up with some very useful reflections and theories if they were to look into how different drugs affect us, these are huge clues.

 

Ativan helps me but clonazapem doesn't. I would describe my gastro and muscle issues (which are my 2 most prominent symptoms) as being more relaxed and less painful when on the drug. I can also feel an energy boost which is odd.

 

What do we think Ativan is doing to make us feel better, slightly?

 

I would be wary of taking Ativan, which is addictive. It can also cause movement disorders such as ataxia, akathisia, and tardive dyskinesia. Having (briefly) had akathisia as a result of a drug I was taking to improve gut motility, and had to give it up after three days, I would never agree to take such a drug again. Movement disorders are very painful because your body starts moving in ways it isn't designed to do and you have no control over.

Ativan is also known as Lorazepam and is part of the same family of drugs that Valium (aka Diazepam) is part of.

Even if an addictive drug of any kind was amazingly helpful for me and caused me no side effects I would still worry that the drug would get taken away due to a change in medical practice. I wonder how many people in the UK are on opiates now, are addicted to them, and doctors want to take them away, or have taken them away? I'm not aware of there being a real opiate problem in the UK but there have been recent articles in the papers that I think are exaggerating the problem.

I'm sure Big Pharma loves to get people hooked on their addictive drugs.

 

May I ask what drug caused akathisia in you?

I think I might have had something like that after MCP IV at hospital. My body was like a puppet on strings that someone else pulled. I could controll my movements but not the strings. So I got up maybe a houndred times to go from bed to bathroom and back. Sitting still was impossible. With ME this is a combination that I think could actually kill you.

Ativan on the other hand I find very underwhelming. It did help with hyperventilating in acute panic attacks. But if I don't feel panic they do absolutely nothing for me, not even sleep.

 

Metoclopramide

The doctor who prescribed it described it as a Prokinetic Agent

I had to be given an antidote to the metoclopramide. There are a few available, but I can't remember what it was I was given. I only took 5 tablets in total (of the metoclopramide), but it took about three months for me to feel back to my usual self.

 

Oh then it was the same med!

Didn't know there was an antidote. My reaction wore off after this one I.V.

Very scary what these meds can do

 

I was first given a single injected dose of metoclopramide as an anti-emetic during a surgery in the 1990s. When I came round from the anaesthetic my hands and knees were flapping and jumping around even while I was lying down. The anaesthetist told me what she thought I was probably reacting to but she didn't use the name Metoclopramide she used a brand name - Maxolon. She told me to make sure I never took it again. It wasn't until after I'd had the reaction to the Metoclopramide in tablet form more recently (about 5 or 6 years ago) that I discovered that it was the same stuff as Maxolon.

 

I strongly disagree on ethical grounds. Benzodiazepines can cause physical dependence within a matter of weeks, so even a short clinical trial of 4 weeks would put these already severe patients at risk of developing it and suffering from withdrawal symptoms upon discontinuation at the end of the trial. In turn, these symptoms, such as panic attacks, restlessness or akathisia and intrusive thoughts, would cause uncontrollable overexertion (both physical and cognitive) that would seriously worsen their ME/CFS and potentially lead them to take their lives.

Given that benzodiazepines immediately appease the symptoms of ME/CFS, unlike drugs that need time to start having an effect like low dose antidepressants for chronic pain, a study of a single administration of a benzodiazepine may suffice to yield insights into their mechanism of action.

I recall that in 2020, Fereshteh Jahanbani from Ron Davis’ group at Stanford drew Whitney Dafoe’s blood before and after taking Ativan but there were no subsequent updates.

 

I had to start taking Zopiclone 15mg back in 2009. Without it I could not sleep, sleep deprivation lowers both my injury threshold and my deterioration threshold. I've caused my self permanent deterioration from sleep deprivation countless times over the years. So I think medication does play a crucial roll in reducing illness severity. Having said that, when I was sectioned back in 2014 they made me start taking Olanzapine 20mg (which was too high a dose and caused me panic attacks). Since then I've not been able to sleep without 10mg Olanzapine plus 7.5mg Zopiclone, 15mg of Zopiclone alone does not work any more.

 

Having taken various anti-depressants over the years, I've never noticed having to wait for an effect, they either had an effect within 24 hours or didn't work at all. I think the "needs more time" myth is just a scam to make co-incidental natural improvement be mistaken for the drug's efficacy.

 

Some people can indeed take benzodiazepines for an extended period of time without developing (too much) tolerance or even without experiencing withdrawal symptoms upon cessation. Unfortunately, we do not know who is at risk and who isn’t because the biological basis of individual differences in GABA receptor downregulation hasn’t been elucidated yet (and to my knowledge, this area is devoid of any active research), so taking a gamble with the health of severely ill patients is hardly justifiable ethically.

It is clear that the practice of prescribing benzodiazepines to people with severe ME/CFS is not uncommon and isn’t likely to stop anytime soon, but it shouldn’t be encouraged either — at the very least to ensure that when taking one is absolutely needed (e.g. an emergency like having to go to the hospital), it remains effective —.

 

I am very wary of taking benzodiazepines having lost a friend to an accident during withdrawal - at 21. I'll be trying them as one-offs to calm the extreme panic I've developed around dealing with healthcare and whilst so unwell in the first place.

 

I take benzodiazepines and they have been some of the most helpful medications for me, much more so than many other things I have tried. I have taken them for over a decade and do not have a dependence issue. As I got better in the past i could also lower my dose correspondingly - I didn't have to keep increasing my dose as time went on to get the same effect. Things I heard about the drugs were totally false in my case.

By contrast, that is what happened with antidepressants of various kinds (prescribed for sleep issues) - and it was hell to come off them. This idea of benzos as being "addictive" and dangerous, and other meds such as all types of anti-depressant benign, has been quite harmful and false for me personally.

 

Antidepressants and benzodiazepines, while they work differently on the brain, are two sides of the same coin when it comes to physical dependence. Some people can use a benzodiazepine continuously without developing withdrawal symptoms upon cessation but they do develop antidepressant withdrawal symptoms, and vice-versa for other people. More rarely, people can tolerate continuous usage of both benzodiazepines and antidepressants.

The idea is not to say that “drugs are bad” unequivocally. It is clear that benzodiazepines are some kind of a wonder when it comes to ME/CFS. Rather, it is important to point out that 1) we do not know who is at risk of developing tolerance, physical dependence and withdrawal symptoms and 2) because of the former, it is wiser to use them only occasionally, while recognizing that in very severe cases, the benefits may outweigh the risks and so there is a rationale for using them continuously.