Looking for Benzodiazepine Damaged pwMEs (Klonopin, etc.)

[Hd-x]

Benzodiazipine were a life saver during my bedridden time.
The Dr had no clue why this drug class helped, it took several years and the doctors figured out MCAS, nowadays I know those drugs just helped because off it´s mastcell damping/stabilizing effects.

I believe there is a ME/CFS subset group where the disease is (partly) triggered by mast cell activation and that this is pretty under diagnosed, this may explain why few take benefits from Benzodiazipine, while others are getting serious tolerance & withdrawl trouble.
While tolerance to sedative and anticonvulsant effects seems to build quickly, there seems to be a lack of tolerance regarding some other effects of long-term benzodiazepine use. I personally never noticed any tolerance regarding mastcell modulating effects (never had any problems to get off cold)

Imo it depends on the case,
if such a drug class is a worst or helpfull medication.

 

[YippeeKi YOW !!]

@olegsel

How to remove the excitement, as a result of the disease ???

Read back through this same thread for some input and ideas on this.

 

[hikinglo]

You are talking about the problem of benzodiazepines. But with what to replace them, when you need to decide what they decide .... Kava kava ... this is not serious ... How to remove the excitement, as a result of the disease ???

Benzodiazipine were a life saver during my bedridden time.
The Dr had no clue why this drug class helped, it took several years and the doctors figured out MCAS, nowadays I know those drugs just helped because off it´s mastcell damping/stabilizing effects.

I believe there is a ME/CFS subset group where the disease is (partly) triggered by mast cell activation and that this is pretty under diagnosed, this may explain why few take benefits from Benzodiazipine, while others are getting serious tolerance & withdrawl trouble.
While tolerance to sedative and anticonvulsant effects seems to build quickly, there seems to be a lack of tolerance regarding some other effects of long-term benzodiazepine use. I personally never noticed any tolerance regarding mastcell modulating effects (never had any problems to get off cold)

Imo it depends on the case,
if such a drug class is a worst or helpfull medication.

Thank you both for your input.

1) olegsel: There are many alternatives. There are many posts about this on Phoenix. Try the Treatment & Therapies section.

(Just to note though... The 'excitement' of this disease was magnified exponentially by the damage Klonopin - prescribed longer than the recommended 2-4 weeks - did to my GABA receptors. It's like high voltage currents vibrating throughout my bones and brain 24/7 for 2.5 years now, so that I have a paradoxical or super-hypersensitive reaction now to things I didn't before. I will be trying CBD oil as soon as I feel stable enough to attempt something to ease the pain of the benzo damage, which is much worse than my prior moderate-severe ME.)

2) Hd-x: Klonopin (K) helped me for a while too. I never noticed 'tolerance' for 10 years at the same dose... until I started weaning off. In hindsight now, there are many, many issues that developed while on K that were indeed tolerance - they were just so subdued while I stayed on the drug, and so slowly insidious, that I didn't recognize it or blew it off as the natural progression of my ME.

Thanks again, and I'm so glad you both are doing okay. Both of these comments are great subjects for other posts. But the heading of this post is Looking for Benzodiazepine Damaged pwMEs, and I emphasized that this post wasn't intended for those who are satisfied with their benzo.

(Just trying to keep the subject basic and stay on topic for my own poor cognitive function.)

 

[YippeeKi YOW !!]

@hikinglo
I have a lot of thoughts on my experiences with these toxins, and I'll come back and post them when my brain kicks in and I have more oomph. Right now, oomphless and partially brain dead.

Just want to say that you're on the right track, and one that I'm deeply familiar with. And thumbs up for the gentle reminder to posters here about the nature and intent of this thread. Very kind, very thoughty .

 

[Hd-x]

@hikinglo
I understand the sense off this tread, my question is still:
If for exampe an overall healthy person just with insomnia claims Benzodiazipine badly impaired his cognitive functions + memory = this sounds very logical if he hadnt take any other drugs.

On the other side,
many ME/CFS sufferers try a lot off different drugs + therapies, noone knowns for sure how some drug combinations conteract. So how can ppl. be sure drug XY damaged/impaired e.g. their cognitve functions further and not just a worsened ME and/or any drug combination?

 

[hikinglo]

@hikinglo
I understand the sense off this tread, my question is still:
If for exampe an overall healthy person just with insomnia claims Benzodiazipine badly impaired his cognitive functions + memory = this sounds very logical if he hadnt take any other drugs.

On the other side,
many ME/CFS sufferers try a lot off different drugs + therapies, noone knowns for sure how some drug combinations conteract. So how can ppl. be sure drug XY damaged/impaired e.g. their cognitve functions further and not just a worsened ME and/or any drug combination?

I understand your question.

I would NEVER suggest anyone ever do this, but if someone (pwME or not) has been on a benzo long term and cut it by a quarter or half for 5-10 days without doing anything else with drugs or supplement or exertion, they would know. (Don't take my word for it - take it from the 62,400 members of the BenzoBuddies forum! BTW, that's an 8,000 member increase from just 7 months ago.)

The severity, intensity and relentlessness of a rapid withdrawal from a benzo doesn't compare to anything you've ever experienced. (If you know anyone who has had a 'bad trip' on acid or THC, picture that sort of intensity for months on end, day, night, unforgiving.) Even a slow withdrawal results in intolerable symptoms for most people. You'll know if you are one of those "most" if you try it. (Still NOT suggesting anyone ever do that without doing your research first!)

So again, if you're satisfied with your benzo and you feel it's good for you, I'm not here to judge. I'm just here seeking the pwMEs who know they were harmed by their benzo.

And I'm also just going by my own experience here: I personally was never on any other prescription med long term, could not tolerate most of them even short term. (I had dropped to 98 lbs during acute ME, and could tolerate nothing, including most foods. I had to force water down, though it was painful.) Like everyone else here I invested everything in all the pills, potions and lotions for ME, tolerated some, not most, and have been off most for many years. By Year 8 of ME (I'm heading into Year 23), I found that a low carb diet with some modifications was my best medicine.

But at Year 10, I decided to blindly trust something I'd read some years earlier about klonopin for ME, even though there was no research to back it up, and decided to try it to get some better sleep. My doctor was happy to find something he could 'help' me with. The rest is history. (I think I mentioned my taper was fairly rapid, so that I could distinguish withdrawal symptoms from the ME symptoms I was familiar with for 20 years. I tapered 1 mg klonopin over 4 months; should have been at least 8 mos., or even double that.)

 

[belize44]

I want to ask a question about this topic. How do I know what to look for, in terms of long term damage? The first time Benzos were given me, it was through vaginal suppositories for severe pelvic pain. My use of the suppositories was intermittent, and then I stopped altogether. A few years later, I was seeing a different doctor who prescribed Valium, stating that they helped with muscle relaxation. I have been taking it, on and off, for about a year. At no time have I been able to tolerate the full dose, but have been taking from one quarter to one half a tablet before bed. I also use over the counter GABA for keeping things even in the brain. I think that the GABA helps with any withdrawal symptoms, but I am not sure. So, are there any links to websites or even other posts here to tell me what to look for? Thanks!

 

[hikinglo]

So, are there any links to websites or even other posts here to tell me what to look for? Thanks!

The links provided in the first post in this thread (at the bottom) would probably be the best places to start.

 

[YippeeKi YOW !!]

@belize44

I also use over the counter GABA for keeping things even in the brain. I think that the GABA helps with any withdrawal symptoms, but I am not sure.

OTC GABA supplements can be comprised of any number of things. But generally, OTC GABA can't cross the BBB, so they provide very little meaningful protection.

 

[Hd-x]

@hikinglo
Just to clarify;
I wasnt permanently on any Benzo;
longest period was 1year (quit cold) and after this still occasionally usage (it fixed some MCAS related problems).

Even a slow withdrawal results in intolerable symptoms for most people. You'll know if you are one of those "most" if you try it.

There was a Klonopin survey: https://forums.phoenixrising.me/thr...klonopin-benzodiazepine-survey-results.59919/
unfortunatly the chart seems broken, here is the doc: http://phoenixrising.me/?attachment_id=14550
The conclusion seems to be withdrawal symptoms disappeared for 70% within 2 weeks. vs. 14% reporting that it took more than six months for the symptoms to disappear.

 

[Stretched]

I was on Klonopin for 30 years and tried a few times to get off only to reinstate. In 2018 I decided to give it another go. I titrated down to .5 and switched to Valium this year, similar to the Ashton Manual Protoco. I’m
currently taking 3-4 tabs daily of the small 2mg pills. The goal is to titrate down and off, maybe by year’s end.
It may work or I may choose to stay on them at minor doses and sporadically try to abate.

FWIW, Lisa Ling of CNN just did a report on Benzos. It’s likely available ‘On Demand’ on cable. She came at
Klonopin from a tyro’s POV and was overly alarmist, IMO. After all, this med did serve a purpose for awhile but
we just didn’t know how inhibiting, addictive they were. BTW, try getting off SSRI’s, e.g. Zoloft after years of
use. I have found it nearly impossible and have always reinstated... .

 

[belize44]

Benzodiazipine were a life saver during my bedridden time.
The Dr had no clue why this drug class helped, it took several years and the doctors figured out MCAS, nowadays I know those drugs just helped because off it´s mastcell damping/stabilizing effects.

I believe there is a ME/CFS subset group where the disease is (partly) triggered by mast cell activation and that this is pretty under diagnosed, this may explain why few take benefits from Benzodiazipine, while others are getting serious tolerance & withdrawl trouble.
While tolerance to sedative and anticonvulsant effects seems to build quickly, there seems to be a lack of tolerance regarding some other effects of long-term benzodiazepine use. I personally never noticed any tolerance regarding mastcell modulating effects (never had any problems to get off cold)

Imo it depends on the case,
if such a drug class is a worst or helpfull medication.

I have never gone through any severe withdrawal from Benzos, but then I have never been able to tolerate above 5 mgs. your comment about MCAS has given me food for thought, though. Valium has helped with scary Tachycardia episodes, calming things down admirably. Amazing how people can respond so differently to the same drug!

 

[Mary]

I was on lorazepam for 11 years for sleep middle of the night - started at 0.5 mg and then went up to 1 mg. I stopped it after I heard and read about benzos' connection to Alzheimer's, plus I knew I had to either increase my dose or stop it and I knew it was addictive etc. It took about 2 years to get over the worst, although I was very lucky compared to many. My worst symptoms had to do with insomnia, I was okay during the day.

Fortunately I read that high dose vitamin C was helpful for excess glutamate - I took 2000 - 3000 mg every couple of hours and it really made a difference in my sleep. https://www.ncbi.nlm.nih.gov/pubmed/25701025

But the high dose vitamin C ended up making me acidic - got very achy and tired. When I figured out what was going on, I used baking soda and that helped a lot with the acidity. I tried a buffered form of vitamin C and it didn't help with the excitotoxicity and actually just made me feel flat.

Taurine is also helpful for neuro- excitotoxicity.

This article has some good suggestions for things that can help as well: https://drnicolecain.com/blog/the-t...ed-to-help-you-get-off-of-your-benzodiazapine

I was already taking l-theanine, glycine and inositol, so that might be way my withdrawal didn't hit me as bad as others.

I know there's debate about whether l-theanine crosses the blood-brain barrier, but we also have gaba receptors in our gut, so I think it can help calm us down. And I know that l-theanine can go either way - helping produce GABA or glutamate, so you'd have to experiment with it and see how you do. I do well with it, others don't.

 

[YippeeKi YOW !!]

The goal is to titrate down and off, maybe by year’s end.

At 6 to 8 mgs of Valium or Diazepam a day, titrating down by the end of this year is extremely optimistic and waaaaaay too fast.

But then, we're all different. Maybe that schedule will work for you, who knows?

After all, this med did serve a purpose for awhile but
we just didn’t know how inhibiting, addictive they were

Whatever the purpose it served in your own life, keep in mind that this med was developed as an anti-seizure med, primarily to compete with Dilantin, and draw some of that medication's money into the capacious pockets of Klonopin's manu, Roche Labs I think. When that income flow didnt prove exciting enough, they started pitching it to Drs as an anti-anxiety med, and the $$$ floodgates opened wide and high. Much to their delight.

 

[Stretched]

At 6 to 8 mgs of Valium or Diazepam a day, titrating down by the end of this year is extremely optimistic and waaaaaay too fast... .

You’re probably right. There’s really no hurry, for me. My main reason for stopping (at my age, 70+) is emotional bluntness, but then is that a big deal? Consider the opposite state, up emotions, anxiety isn’t too desirable either.

Some otherwise no no drugs can help with a life diminished. For example, I went back to low-dose 10mg x 1-2 adderall or amphetamines for cognitive clarity and/or a boost in energy. I stopped that stuff in 2018 just to ‘clean up’ with no problem, after 25 years of strict limited use. It and Benzos can be helpful given CFSME lability. The
early years of treatment focused on these and SSRIs.. .

 

[YippeeKi YOW !!]

Benzos can be helpful given CFSME lability... .

One of the many, many withdrawal effects on benzos, whether tolerance withdrawal or otherwise, is emotional lability ....it's really a weasely little drug

 

[2Cor.12:19]

@hikinglo - Great questions! I didn't see this thread when I posted mine here: https://forums.phoenixrising.me/thr...al-success-stories-please.78239/#post-2240943

1) Like me, did you mistake the slow, insidious side effects (and/or tolerance effects) of your benzo as ‘just’ the long term ravages of ME?

4)... Benzo Buddies is a great forum, but most there didn’t start out with ME at baseline.

Yes! I'm currently very slowly tapering off Xanax after 20 years on 4 x daily - total daily dose .75 mg. I'm using a direct dry-taper 10/2 method. 10% of total daily dose decreased every two weeks or more, depending on comfort level.

I had moderate-severe ME/CFS for 13 years prior to being put on Xanax for severe panic attacks.

In the past 10-15 years I've developed many new conditions I assumed were part of the "aging with ME/CFS" package. I've had extensive testing for all of these with no known cause determined. I don't know how many of them can be attributed to ME or to benzos - or maybe a combination of both, but I hope to know once I've completely withdrawn from Xanax and heal - which may take a couple of years. I will post here if any of these improve or disappear after discontinuing. These include:

1. Idiopathic Polyneuropathy (severe peripheral nerve damage - motor, sensory, & autonomic)
2. Sleep apnea (although I believe I already had this)
3. Chronic tinnitus
4. Sinus inflammation & ear pain (one side only)
5. Chronic constipation
6. Chronic low-grade generalized anxiety & muscle tension
7. Vertigo (occasionally)
8. Blurred vision (comes and goes daily for no reason)
9. Extreme dry mouth & eyes
10. Dry skin
11. Hair thinning
12. Mild pulmonary hypertension
13. Low grade depression and unfounded insecurity over friendships/relationships
14. Startle easily
15. Memory and cognitive issues - need help following a TV show and can't read a whole book. Word finding is worse than ever.
16. Fatigue that feels different than ME/CFS fatigue - hard to explain.

I have the same issue with Benzo Buddies which is why I started a thread here to here ME/CFS benzo withdrawal success stories. It's impossible to know which symptoms are ME and which are benzo related.

Being on Xanax, a short acting potent benzo, I was greatly helped by Stuart Shipkos book "Xanax Withdrawal" available on Amazon Kindle.

 

[SlamDancin]

@2Cor.12:19 Hey man good for you for getting off Xanax first of all. Secondly good for you for doing it with such dillegence and intelligence.

I had no plans. About five years ago, all I knew was I felt absolutely horrible sober, and especially Xanax made me feel “normal.”

It gave me some functionality for a while but I was basically cut off and probably went from 4-5mg a day at least to none in 3-4 months. It definitely worsened aspects of my ME. I still am dealing with this, and I super hesitate to recommend this medication to anyone, but I take 2-4 mg Etizolam a day. It has some interesting aspects where it is a GABAA-BZD agonist but has opposite effects on the receptor as Ativan but the study only lasted a week. A clinical trial showed increased efficacy between 2-4 weeks which is opposite of Xanax. However, it still has to be taken everyday. It’s not even a matter of forgetting a day of dosing because it still has a strong and immediate withdrawal. I wouldn’t go more than 2 days without it without going to the ER. PwME already have a lowered seizure tolerance and it makes it much worse upon withdrawal.

Having said all that, I do believe it helps as part of my medication regimen to support my recovery from ME imho caused by idiopathic joint instability and weakness like so many else here. My ankles up to my neck, everything with cartilage, seem to have their own distinctive problems that cause a number of local hypoxia including in my abdomen, neck, face and head

Etizolam is a platelet activating factor inhibitor along with its GABAA agonism, that with it’s lack of escalating dose problems like Xanax, can be effective in this illness.

I’ve even offered to help Janet and Ron obtain some for testing (it’s developed as a “research chemical”) and explained that it specifically seems to lack the problems Ativan has that limits its use for Whitney but I got no response. No worries.

Are you familiar with the drug at all 2cor?

 

[2Cor.12:19]

@2Cor.12:19

I super hesitate to recommend this medication to anyone, but I take 2-4 mg Etizolam

Are you familiar with the drug at all 2cor?

@SlamDancin - no I’m not. Thanks for mentioning it. I’m glad it’s helping. I’m really hoping not to have to take any new drugs, and especially any that are habit forming. I take Low dose naltrexone which has helped enormously with pain.. I believe the underlying anxiety I was initially treated for 20 years ago was resolved long ago so hopefully I won’t be needing anything like that once I get through withdrawal.

 

[Stretched]

@2Cor.12:19 ”...I hope to know once I've completely withdrawn from Xanax and heal - which may take a couple of years. I will post here if any of these improve or disappear after discontinuing... .

Medicine doesn’t pursue drugs for the purpose of doing harm, though they often get a bad rap for reasons like being mis-prescribEd, extended or unintended uses, or due to side effects or abuse. Even food has side effects and many times unintended consequences...weight gain, tooth decay, etc. What I’m getting at is that if medications can ultimately provide some relief or respite from an invisible illness why give them up just to be in an arbitrarily desired state of being ‘pill free?’ For example, in considering the possible pros agains the likely cons of drug therapy, cancer patients put up with horrendous side effects, hair or teeth loss, and isolation hoping they’ll recover some of their pre illness healthy state and abilities... .

So, while the Ashton Manual is helpful in withdrawal from benzos and the like, it also starts with the question of
a patient’s decision if quitting is really their best option. Sometimes, these and other drugs are useful to help PWCs relieve some of their otherwise misery caused by symptoms not likely to go away. We’re talking judicious considerations, here, otherwise less consequential than the progressive affects of MECFS.

I hope you do get some satisfaction in knowing the cause(s) of your symptoms. IMO, from a very long time dealing with CFS I think you’ll come to the conclusion that they remain a manifestations of this illness.