Clonazepam (Klonopin) stops my symptoms almost completely

[kushami]

This is a search on clonazepam from the DINET (dysautonomia) forum:
https://www.dinet.org/search/?q=clonazepam&quick=1

You might find some useful information there.

 

[mattie]

There are several threads on this forum regarding improvements / possible benefits from benzos.

I have been on and off Rivotril (= Clonazepam in liquid form) for 8 years now.
It was once prescribed to me by KDM based on Dr. Paul Cheney's protocol.

I never go above 0,6 mg and I always taper back to zero at least once or twice a year and stay off it for a couple of months.
This to prevent dependence.
Tapering down very slowly with 0,01 mg per day (easy with liquid form). So last time, tapering took 60 days,
Never had noticeable withdrawal symptoms using this method. I am aware that this may be different for others.

But: what I have noticed every single time: This dose of clonazepam seriously improves my symptoms:

- Stamina on average doubles when I am on it. My step count confirms this; I have data going back 8 years now. (apple watch)
- Orthostatic intolerance and POTS improve significantly. Walking without feeling faint / dizzy etc. Tachycardia also less.
- Generally feeling better, less sick / flu-like.
- Less PEM

None of the gazillion supplements I have tried over the years has ever helped.
This dose of Rivotril definitely improves my quality of life. A lot.

Be careful with the stuff. Discipline is needed and tolerance and withdrawal have lead many people into benzo-hell and made them permanent members of the
benzobuddies forum. For me it works and for now I will keep using it as described above.

 

[sb4]

@mattie Very interesting. Could you describe your dosage schedule in a bit more detail.
Like say January 1st you start with 0.01mg then 60 days later you reach .6mg and you maintain this until like September 1st were you titrate back down by 0.01 until November 1st were you have 2 months off.

Would you say you feel worse than baseline when tapering down and when completely off?

 

[mattie]

@sb4
I only use the slow tapering schedule when reducing dose to 0.
When I restart the Rivotril I just start by directly taking 0,3 - 0,4 mg per day. (3-4 drops of Rivotril).
After a couple of weeks I hold dose at 0,5 or maximum 0,6.
For me higher dose than that does not add benefits, would be more risky and would take longer to taper down.

After couple of months I start tapering down 0,01 mg per day. (1/10th of a drop of Rivotril, I use a 10 ml syringe for this)
So after 2 months I'll be at 0.
And stay at 0 for maybe 2 months. Sometimes longer.

When tapering down I feel a little bit worse than baseline. And when completely off I will eventually end up with lower baseline.
I do not think this is due to withdrawal symptoms; all my ME symptoms just get worse and will not improve even when I am off
the benzos for 6 months. (have tried that too).
I dont get the typical withdrawal symptoms like agitation, anxiety or added sleep problems.
Just less energy, less stamina, more POTS, more PEM.

 

[Strawberry]

Is this something that has to be taken daily for any benefit? Or is it possible to not take it daily to avoid tolerances?

 

[triffid113]

Um, dunno if this is a help, and I have no idea WHY, but some of you above mentioned a major symptom of anxiety / stimulous-overload, and DHEA takes care of that for me. I have had anxiety attacks all my life because it is a symptom of low blood sugar, which I had to find ever increasing ways to deal with. By my 40's, I had to rely on rhodiola or someone cutting me off in traffic (happened at least 5 times on the way to work) would cause a panic attack which would take half a day or more to dissipate. By 50, that was not enough. I had found rhodiola because of postulating that my adrenal gland was not telling my liver to break down glycogen, so I decided to focus on my adrenal gland and started researching DHEA, the actual adrenal hormone. I found you peak out at age 30 and by age 50 most people can feel the decline. Thousands of studies in people over 50 at 50mg were efficacious at attenuating or turning back the clock on many ailments of aging. I had developed constant anxiety of the sort that felt like I was getting way too much sensory input to process. Since I still had to go places - no grocery delivery at that time - I found that if I looked at my shoes, it limited the amount of sensory input enough to function, but not enough for long term. At the same time I had just been diagnosed with very high blood pressure and I had explored natural hormone replacement to fix it, since I observed my b.p. was only high during PMS. HRT did not lower my blood pressure and lisinopril 50mg made me feel like my brain did not get enough oxygen. So I decided - what the heck! - to try DHEA 50mg. When I took it, for 15 minutes it felt like I was in a fun-house mirror. (Do not be out and about if you start this!). It sorted my whole body out in those 15 minutes and I felt normal again - no more anxiety. I also found that whereas cal-mag citrate capsules would lower my bp by 30 points but only for 2 hours, the DHEA kept that cal-mag in my system for 24 hours so that it became a viable treatment method. Now 50mg is overkill for women and our dose is "somewhat less". It also makes you break out one time and that took about 3 days to heal up at age 50 - your results may differ. But for me, I would never ever be without DHEA again. And since you cannot get it w/o prescription in Australia, I would never move there.

Again, your results may differ...but it totally sorted out my stimulation overload / anxiety issues.

 

[dannybex]

Thanks @triffid113. Here's one such study:

https://pmc.ncbi.nlm.nih.gov/articles/PMC3717538/

 

[alcasa]

The fact that symptoms improve with these types of drugs further underscores that Marco and Goldstein were onto something significant. It strongly suggests that glutamate, excessive excitation, or poor excitation management are key culprits. In my opinion, Goldstein came incredibly close to identifying the root cause. However, at the time he wrote his book, the mechanisms of glutamate uptake weren't yet understood.
I believe glutamate uptake, noradrenaline activity driven by glutamate signaling, and calcium channel overactivity are the core issues underlying this disease.

How is it that so many of us see improvements with alcohol, benzodiazepines, or NAC? It’s too much of a coincidence to ignore—it points to a deeper, unifying mechanism at play.

 

[BaileyBeached]

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.

Not sure if you're still looking for answers to this, but I'd add, taurine, l theonine, magnesium, gaba, sometimes licorice and lemon balm but they have a lot of other effects. My right eye vision improves with things that increase gaba effects in relation to glutamate

 

[triffid113]

The fact that symptoms improve with these types of drugs further underscores that Marco and Goldstein were onto something significant. It strongly suggests that glutamate, excessive excitation, or poor excitation management are key culprits. In my opinion, Goldstein came incredibly close to identifying the root cause. However, at the time he wrote his book, the mechanisms of glutamate uptake weren't yet understood.
I believe glutamate uptake, noradrenaline activity driven by glutamate signaling, and calcium channel overactivity are the core issues underlying this disease.

How is it that so many of us see improvements with alcohol, benzodiazepines, or NAC? It’s too much of a coincidence to ignore—it points to a deeper, unifying mechanism at play.

I have glutamate toxicity / Chinese Restaurant syndrome (so bad I believe msg could kill me). Estrogen keeps glutamate in check so I benefit from bioidentical HRT.

I just read today that pantethine (active B5) is required to keep glutamate in check. I have been interested in pantethine for some years ever since I read on the website of a lab that performs blood tests that they found that their clients who took B100 or B50-type B vitamins (all doses equal to the extent possible) were always found by blood work to be low in pantethine. Which means pantethine needs to be supplied in a higher dose than the other B's...either because it's needed more or because it's needed to make cortisol and with our common overuse of caffeine this wears out the adrenal gland (uses up the pantethine). Caffeine is liquid cortisol - 2 cups of coffee raise cortisol 33%.

However, I got in here to share this from Reddit, of interest to those with the MTHFR genetic defect:

r/MTHFR - Vitamin B5 (Pantothenic acid) Changed Everything!
I’m surprised I don’t hear much of Vitamin B5 on this sub. As I’ve been struggling with MTHFR C677T, slow COMT, slow MTR/MTRR and MAO-A, and I’ve recently been testing taking just B5 and it’s changed everything, and I feel amazing.
And from the research I’ve done is B5 is the key to metabolism folate.
I’ve tried B-Complex etc, but just just by taking B5, with a little Folic Acid and B2, it’s transformed my mood and kept me stable throughout the day and night, and not just for a few hours.
Also I think B5 might be key thing for many people, as seen posts saying “methylfolate was amazing for a week, then it stop working” and that might be because the body has depleted its B5 stores and can’t keep up, and maybe even if a bcomplex is taken, it maybe completing for absorption, in turn limit B5 absorption, but was just a thought.
EDIT: also, B5 has completely eliminated my panic attacks, so there’s that.

 

[triffid113]

Thanks @triffid113. Here's one such study:

https://pmc.ncbi.nlm.nih.gov/articles/PMC3717538/

DannyBex, glad to see you're hanging in there! I think I overmethylated myself trying to get down my homocysteine... symptoms of possible low potassium, but I have to wait to get a blood test to see because my kidneys are slow and I don't usually have low potassium (have to be careful with potassium). In the meantime I can't bear to take the extra methyl supplements so I am improving (may not be able to prove one way or another by the time I get the test). It's so hard to fix things if you can't measure them at the right time. Se la vie! Life Extension recommended Pantethine to lower my cholesterol and I read up on it... seems like a good two-fer, helping with methylation. I hope you're doing better these last few years. I was really sorry to hear Freddd passed away. Take care of yourself!