Clonazepam (Klonopin) stops my symptoms almost completely

[josephine2]

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 ....

I'm referring to the gold standard of the Ashton Manual regarding protracted and BIC https://www.benzoinfo.com/protracted-withdrawal-syndrome/
There's no need to cause undo stress on someone who only has a few months post benzo taper/cessation to believe they may be in protracted withdrawal. I don't need to feel right about this. I've counseled a lot of folks "heal" after 18 months. No misunderstandings on this end, anyway.

 

[dannybex]

The issue is not getting into the bloodstream but getting into the brain, as the blood brain barrier prevents GABA from crossing into the brain.
So i am surprised that the lozenge works. Are there other ingredients that might account for the lozenge having an appreciable effect?

Gaba supplementation works via the gut-brain axis. A lot of neurotransmitters in the gut.

But another way to lower glutamate levels (and thus indirectly raise gaba) is to take NAC or cysteine. Works for some people, and some studies have shown benefits, while others haven't.

 

[YippeeKi YOW !!]

Gaba supplementation works via the gut-brain axis. A lot of neurotransmitters in the gut.

But still the same problem. GABA systems in the gut still dont cross the BBB. They can synthesize GABA, they can absorb GABA, but they cant force it into the brain, even via the vagus/ENC system .... still some benefit may be found via that system, it'll just be really limited ....

 

[YippeeKi YOW !!]

I'm referring to the gold standard of the Ashton Manual regarding protracted and BIC https://www.benzoinfo.com/protracted-withdrawal-syndrome/
There's no need to cause undo stress on someone who only has a few months post benzo taper/cessation to believe they may be in protracted withdrawal. I don't need to feel right about this. I've counseled a lot of folks "heal" after 18 months. No misunderstandings on this end, anyway.

Someone who's struggling thru a taper but feeling worse might find it supportive to know that this isnt an isolated incidence, or unusual, and that there are ways to deal with it.

 

[CSMLSM]

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.

Hi Replenished my name is Daniel.

From Wiki,
Mechanism of action[edit]
Clonazepam enhances the activity of the inhibitory neurotransmitter gamma-aminobutyric acid (GABA) in the central nervous system to give its anticonvulsant, skeletal muscle relaxant, and anxiolytic effects.[106] It acts by binding to the benzodiazepine site of the GABA receptors, which enhances the electric effect of GABA binding on neurons, resulting in an increased influx of chloride ions into the neurons. This further results in an inhibition of synaptic transmission across the central nervous system.[107][108]

This means it is doing this-

Replenish said,

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.

You are very correct indeed.

Take a look at my threads for information that expands on this topic.

I hope this can help.

Daniel

 

[Alvin2]

Gaba supplementation works via the gut-brain axis. A lot of neurotransmitters in the gut.

But another way to lower glutamate levels (and thus indirectly raise gaba) is to take NAC or cysteine. Works for some people, and some studies have shown benefits, while others haven't.

I have tried GABA to no effect and NAC to little effect.

 

[Law2207]

It's funny. This is the same conversation people have around tinnitus: increased glutamate levels causing neuroexcitoxcity vs GABA inhibition. Clonazepam is the most often cited prescribed benzo for easing tinnitus (with the same discussion around dependence and withdrawal). Plus NAC is discussed for reducing neuroinflammation.

I am wondering what the link is between the conditions - both neurological conditions???

 

[SlamDancin]

My last benzo taper ended with me in rehab needing Phenobarbital to take the edge off the worst of the withdrawal symptoms. That was after a sucky Valium taper that didn’t fully take away the withdrawal from the Etizolam that I had been taking. Moral of the story is for us, with the chronic need for them, benzos are a dangerous and likely ineffective long term strategy. I’ve gone through withdrawal twice now and I probably won’t touch benzos again if I can help myself

 

[YippeeKi YOW !!]

Moral of the story is for us, with the chronic need for them, benzos are a dangerous and likely ineffective long term strategy

OMIGOD !!!! Thank you for posting that !!!

I couldnt agree more if I'd written that myself.

Just like pioids may kill the pain, but don't heal the source of it, benzos may make us feel soooooo much better, but it's the euphoric effect of the artificially, chemically pumped up GABA, and it isn't healing squat, or doing anything for the underlying issues and does deep, elemental damage to us into the bargain ....

Again thank you so muh for posting your first-hand opinion and experience. You'll probably never know how many people you saved from that trap .....

 

[josephine2]

Helping people get off this class of drug is a tricky business since the docs prescribing them believe that their patient's withdrawal symptoms are really attributed to an underlying condition. I've found that most docs know little to nothing about benzo or z drug interdose withdrawal or tolerance or kindling.

 

[SlamDancin]

Btw I’m off benzos over a year now and I still think about them every day

 

[CSMLSM]

Btw I’m off benzos over a year now and I still think about them every day

Glad to hear you are off of those meds but it is not cool what that medication has done to you. Medicine should help problems, not create them.

Daniel

 

[YippeeKi YOW !!]

Medicine should help problems, not create them.

Sadly, medicine is, or has become more and more, a business. This is something that we seem to lose track of, buried as it is under thick, clinging layers of hope and desperation and the illusions created by the lofty (and totally unheeded) Hippocratic Oath.

Helping problems would put them out of business pretty quickly, or at least limit that business considerably. Creating problems, on the other hand, well, there's a business plan that offers endless expansionary possibilities.

It's sad, but recognizing that is a form of protection, however fragile ....

 

[SlamDancin]

Medicine should* help problems and not create them but I’m under absolutely no false pretense that @YippeeKi YOW !! isn’t right. It’s a feature not a bug that these medications end up creating the need for more medications to treat the side effects etc.

 

[CSMLSM]

Medicine should* help problems and not create them but I’m under absolutely no false pretense that @YippeeKi YOW !! isn’t right. It’s a feature not a bug that these medications end up creating the need for more medications to treat the side effects etc.

 

[YippeeKi YOW !!]

It’s a feature not a bug that these medications end up creating the need for more medications to treat the side effects etc.

That you survived it is the best revenge.

Polypharmacy has become a serious and growing problem, carefully ignored by the medical community ....

It will get better, Dancin'. It just takes time and grit, and you've already proven that you have the grit.

Onward and upward !!!!

 

[SlamDancin]

Thanks Yippee. The best revenge now would be to figure out why benzos are helpful so we can find a better and more sustainable solution

 

[YippeeKi YOW !!]

The best revenge now would be to figure out why benzos are helpful so we can find a better and more sustainable solution

I'm not convinced that they are, or at least not on a basic healing basis.

They massively pump up GABA, which would make anyone feel better ... and they soothe the anxiety that's a distinct part of some subsets of this niggling little nagging badger of an illness, as it is of many illnesses, including cancer ....

All that said, there is some sort of neurotransmitter aspect to this illness. There's too many of us who, at oe point or another, develop incredible sensitivity to glutamate/glutamic acid. To the best of my knowledge, no one is really looking at that aspect too closely in terms of research ....

 

[Stretched]

Doesn't Clonazepam make you tired like Valium? I have taken Valium recently after onset of tinnitus made me mental. It was great, but makes me sleep much more. I hear Clonazepam can be more addictive.

Having had experience with both benzos led me to observe that Klonopin had a more pronounced, observable affect, in shorter time, perhaps because of the shorter half life. OTOH Valium‘s onset seemed smoother and less noticeable.

 

[Replenished]

Just to say, I want to make it clear, when making this thread I was in no way promoting regular use of Clonazepam. As with any benzodiazepine, regular use is likely to lead to serious problems. I certainly don't want this thread to encourage people to go out there and take this drug. It's simply an observation that the mechanism of this drug has a way of relieving my symptoms and this may provide clues as to the cause of the illness.

My use of clonazepam is once in a blue moon. A one of day here and there maybe a few times a year at most. And yes it does almost get rid of my symptoms and help me relax for that day but I make sure to never take it on consecutive days