Clonazepam (Klonopin) stops my symptoms almost completely

Hip

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Would that be even more of an indication that it's a glutamate issue

I don't really know anything about the mechanisms of frequent nighttime urination, so cannot really answer that question.


Have you brought up frequent nighttime urination with your doctor, @Replenished? I can be a symptom of several underlying conditions. Might be a good idea to check with the doctor.
 

Replenished

Senior Member
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248
I don't really know anything about the mechanisms of frequent nighttime urination, so cannot really answer that question.


Have you brought up frequent nighttime urination with your doctor, @Replenished? I can be a symptom of several underlying conditions. Might be a good idea to check with the doctor.

It was more just in reference to Clonazepam / GABA appearing to reduce all my symptoms, frequent urination being the main one.

Yes, i've had every test imaginable for the frequent urination from multiple different doctors who initial thought it was Diabetes insipidus but more recent testing indicates it isn't this and they essentially have no idea whats going on. Hence my search along the GABA lines as Benzodiazepines is the only medication i've tried out of many, that seems to help.
 

Hip

Senior Member
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18,117
It was more just in reference to Clonazepam / GABA appearing to reduce all my symptoms, frequent urination being the main one.

There is this idea (which I believe originated with the late Dr Paul Cheney), that many ME/CFS symptoms may be due to brain inflammation and the high brain glutamate that results.

PR forum member Marco wrote an in-depth blog on this idea.

So if some of your symptoms are due to high brain glutamate, you might expect that by increasing GABA, it counters the effects of high glutamate.

But because of the major tolerance and withdrawal issues that some people get with benzodiazepines (it cannot be predicted in advance who will suffer tolerance and withdrawal), I avoided benzodiazepines, and experimented with reducing glutamate or the effects of glutamate, with NAG being the my best discovery.

Other treatments I tried involved high dose transdermal magnesium cream (listed in this post of my anti-anxiety thread). The high levels of magnesium you obtain by transdermal application actually serve to partially block the NMDA receptor in the brain (this is the receptor that glutamate binds to), resulting in less glutamate effects.

If we rate the efficacy of NAG as 100% on a scale, then transdermal magnesium I would put at say 10% to 20%.

In my case, the high glutamate I believe I had was causing generalized anxiety disorder, rather than any other symptoms; so I would gauge the efficacy of each supplement by its ability to reduce my anxiety levels.

Other anti-anxiety / anti-glutamate interventions I found effect are listed in the same post (my list of 29 anti-anxiety supplements).

If you have gut issues like IBS, note that gut inflammation can ramp up brain inflammation, so you can also consider some supplements which target the gut. I found prebiotics like inulin substantially reduced my anxiety (see this post), and turmeric (not the same as curcumin) reduces gut inflammation also.


Have you looked into kava kava? Unlike benzodiazepines which can desensitize the GABA receptor over time (leading to tolerance and withdrawal), kava actually increases the sensitivity of the GABA receptors over a period of a few weeks. So kava may act as a substitute for benzos.

However, be careful with kava: due to the increased GABA receptor sensitivity, it can make the effects of benzos too strong.
 

Replenished

Senior Member
Messages
248
There is this idea (which I believe originated with the late Dr Paul Cheney), that many ME/CFS symptoms may be due to brain inflammation and the high brain glutamate that results.

PR forum member Marco wrote an in-depth blog on this idea.

So if some of your symptoms are due to high brain glutamate, you might expect that by increasing GABA, it counters the effects of high glutamate.

But because of the major tolerance and withdrawal issues that some people get with benzodiazepines (it cannot be predicted in advance who will suffer tolerance and withdrawal), I avoided benzodiazepines, and experimented with reducing glutamate or the effects of glutamate, with NAG being the my best discovery.

Other treatments I tried involved high dose transdermal magnesium cream (listed in this post of my anti-anxiety thread). The high levels of magnesium you obtain by transdermal application actually serve to partially block the NMDA receptor in the brain (this is the receptor that glutamate binds to), resulting in less glutamate effects.

If we rate the efficacy of NAG as 100% on a scale, then transdermal magnesium I would put at say 10% to 20%.

In my case, the high glutamate I believe I had was causing generalized anxiety disorder, rather than any other symptoms; so I would gauge the efficacy of each supplement by its ability to reduce my anxiety levels.

Other anti-anxiety / anti-glutamate interventions I found effect are listed in the same post (my list of 29 anti-anxiety supplements).

If you have gut issues like IBS, note that gut inflammation can ramp up brain inflammation, so you can also consider some supplements which target the gut. I found prebiotics like inulin substantially reduced my anxiety (see this post), and turmeric (not the same as curcumin) reduces gut inflammation also.


Have you looked into kava kava? Unlike benzodiazepines which can desensitize the GABA receptor over time (leading to tolerance and withdrawal), kava actually increases the sensitivity of the GABA receptors over a period of a few weeks. So kava may act as a substitute for benzos.

However, be careful with kava: due to the increased GABA receptor sensitivity, it can make the effects of benzos too strong.

I've ordered the NAG. I'll see how it goes, thank you.
I'm also considering whether there may be any form of vasodilation ocuuring while on Benzos that somehow reduces my symptoms. I've always felt I have poor circulation and having read of some of the ME recovery stories from the use of nimodipine and/or Cinnarizine I'm considering trying these. The only thing is, my blood pressure is already on the low side.
 

judyinthesky

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381
I've ordered the NAG. I'll see how it goes, thank you.
I'm also considering whether there may be any form of vasodilation ocuuring while on Benzos that somehow reduces my symptoms. I've always felt I have poor circulation and having read of some of the ME recovery stories from the use of nimodipine and/or Cinnarizine I'm considering trying these. The only thing is, my blood pressure is already on the low side.

Can someone say the full name of NAG, I am finding different substances online
 

YippeeKi YOW !!

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N-Acetyl Glucosamine

I bought the Jarrows brand. Been taking it for a few days and haven't noticed much but will give it a good try.
OOPS ..... cross-post .... well, you can't have too much information, eh ........

RE Jarrow .... I find their products very uneven in terms of quality and performance, which is why I no longer order anything Jarrow. You might want to try NAG from another manufacturer before giving up on it ....

It's too bad about Jarrow. They used to be reliably good ....
 

judyinthesky

Senior Member
Messages
381
Might get a couple of these down me. It's the only thing that numbs the hopelessness of these symptoms.

I'm at a point where hour long torture and brain inflammation isn't touched anymore by benzo.

I checked regarding the NAG it was this and unfortunately also hasn't helped
 

Replenished

Senior Member
Messages
248
I'm at a point where hour long torture and brain inflammation isn't touched anymore by benzo.

I checked regarding the NAG it was this and unfortunately also hasn't helped

I hear ya. I've read your posts and it sounds so horrendous. I feel for you genuinely but I also believe there's a way out.

But yes, in regard to the benzos, I took some yesterday as I had to go to London and back. The effects weren't anywhere near as useful as usual.

I also have the NAG and haven't noticed any difference. I'm more of the belief it's the 'nervous system dysfunction / vagus nerve issue' issue rather than brain inflammation. Although I'm sure they all cross over to a degree.
 

YippeeKi YOW !!

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I ordered the Jarrow version as that was the one recommended and used by @Hip who had success with it.
@Hipstarted that thread ten years ago, in 2012 when Jarrow was generally better than it was the last time I bought anything manufactured by them, probably about 4 yrs ago ... but if it works for you, that's what matters, all other quibbles aside ...
 

YippeeKi YOW !!

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Might get a couple of these down me. It's the only thing that numbs the hopelessness of these symptoms.
Not dead sure what you're referring to here, but I'm assuming, based on your other posts, that it's benzos ...

But yes, in regard to the benzos, I took some yesterday as I had to go to London and back. The effects weren't anywhere near as useful as usual.
You may be building up tolerance withdrawal, which is a form of resistance that requires larger and larger doses to accomplish the same relief that previous lower doses were able to provide.
 

YippeeKi YOW !!

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GABA Calm lozenges from Source Naturals fixed this for me. Make sure you buy the lozenges, not the capsules. This donates the GABA rather than benzos which modify what GABA you have left. Better choice.
Functional GABA cannot be 'donated' via oral supplementation, which can't cross the BBB. And benzos dont really modify GABA, they render it redundant and pretty much shut down your natural production, which is in large part what causes the awful withdrawal symptoms that many members here have suffered.


When the Ativan or Xanax or Valium is stopped, the system generally can't just pick up the slack and go on as before. The roads and bridges have all been torn down, along with the transmiting towers adn receiving terminals. So until your system can rebuild those, which is a pretty long, arduous, and for the patient, unpleasant process, you're going to be one raw, bleeding, jangling set of nerve endings all screaming for relief.

There are multiple GABA sites in the body, so there may be some relief provided by the GABA receptors in, say, your gut or your liver, but it would be minimal, and as far as I can recall, those sites wouldnt cross the BBB either ....

I believe that the Source Naturals product has other substances in it to boost its effect. Forgive me for not looking it up, but pretty weary and wrung out right now.
 

YippeeKi YOW !!

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I'm more of the belief it's the 'nervous system dysfunction / vagus nerve issue'
Not quite sure what you mean here, but if I'm understanding correctly, I think that I agree, with small modifications.


The nervous system is a huge network, wide-ranging in both territory and effect. There's the CNS, which is attached to your spine, the peripheral NS, the autonomic NS, the somatic NS, the sympathetic NS, the parasympathetic NS, the enteric nervous system (which is in the gut and communicates back and forth with the brain via the vagus nerve), and on and on. It's a deeply complex, multi-faceted, and multi-variegated piece of machinery, and intervening with its functions can be awesome in the synergistic effect on everything else, including potential inflammation of the brain and nervous system.

This is one of the reasons that I preach so tediously about using caution with things like benzos, anti-d's, anything that fiddles aggressively with the brain's functioning. Throwing a sensitive system out of whack creates unpredictable, destabilizing problems that even the best-trained neurologists can only vaguely guess at ....

EDIT FOR VARIOUS TYPOS AND A SMALL CORRECTION TO INFO ....AND SEVERAL MORE TYPOS ....
 
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