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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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That makes sense, to a degree ..... but your explanation of why benzos cause tolerance is a little wide of the mark.
It's virtually impossible to recreate a benzo effect naturally, but I'll think about it and see if I can come up with anything .... so far, crickets ....
Oh, @josephine2, thank you for posting, and I couldnt agree more with everything you've said.
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.
!!!!
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.
@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.’
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.
. 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.When you say 'aggressive reset therapy', what does that consist of? Just the meditation? It doesn't sound very aggressive
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 ....
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.
