Need od advice with Myalgische encephalomyelitis and withdrawal benzodipine

[[Bi...]]

 

Hello!

 

 I am in a very complex situations that no one knows what to do.

 

 I was diagnosed with severe ME (Myalgische encephalomyelitis)

 and a sleep disorder in 2009.

 In 2010 they started with 8  drops of Klonopin so that I could get some sleep again.  My situation has worsened over the years and I have tried hundreds of supplements and treatments without success.  I have been largely bedridden for years and surviving... but sometimes I was able to do something with consequences...

 In the meantime, the dosage of the Klonopin drops increased to 33-35 drops (3.3mg) until 2022.

 

 I then decided at the end of 2022 to slowly reduce it because who knows, the Klonopin might also have influence...?

 

 Reducing it to 20 drops went reasonably well (June 2023)

 From 20 to 10 it was hell... having to crawl on the floor for 5 months, etc.

 In November I had seizures at 9+10 drops and I thought I was dying.  The ambulance came twice.

 Then the doctor changed it to 20 mg Diazepam.  Had terrible attacks for 2 weeks after stopping which I had to replace with 40 mg oxazepam and 10 extra Diazepam.

 Eventually I was able to stop that.

 I then decreased to 10 mg diazepam in 1.5 months

 

 After 3 months I am still on 10 mg diazepam.

 

 And it only gets worse... I can't do anything anymore, everything makes me sicker.

 Is it the ME?  Or the withdrawal (BIND) or the diazepam?

 

 It seems that the Klonopin droplets were suppressed more widely.  I was also seriously ill at the time, but now all inhibitions seem to be gone.  The exhaustion is extreme, causing panic attacks because I can't do anything anymore.  I used to not be able to talk much, but the depth I now experience after a conversation is extreme.

 I can no longer climb stairs.  I have to gather everything together to walk to the kitchen twice a day.

 

 I can't handle stimuli.  No one can take me in, it's too complex and I don't have to think that someone comes into my room 10 times a day

 

 

 I had little quality of life but now.

 Did the  Klonopin drops suppress the severity of ME?  Or ..

 

 I'm thinking of switching back, but am I not too sick for that to cause as much misery as the other way around?

 Klonopin drops are known to suppress broader symptoms in the brain.  But I can't handle withdrawal symptoms or attacks again..

 

 But things don't go that way anymore.  We see my son and people around me deteriorate.  And even after a total of 19 years of illness and now even more deterioration, I am also at...

 

 I don't want to throw it all on the benzos because of course I was already sick before I started taking them!

 

 I'm leaning towards going back to Klonopin What do you think?

 By the way, I react extremely poorly to supplements or herbs. My GP is also an orthomolecular therapist and we have tried everything.

 

We can also try to withdraw further with the diazepam with taperingstrips. 0.1 mg in 3 days?  That's the option before us right now. 

 

But I am a bit scared that my situation will be worse. 

 

Please would you think with us?

 

Thanks in advance!

 

The Netherlands.

 

 

[[...]]

Hello, @[Bi...]! Welcome to BenzoBuddies! This community is the one where you can get true support, advice, hope and understanding concerning issues caused by benzodiazepine. 

I can't give you any advice of mine off head. It needs thinking over. I'll just approve your post for you to become one of us and for other members to take part in trying to solve your situation and give all help we can provide for you.

Send you my personal compassion and support! Good luck to you!)

 

[[Bi...]]

Thank you @[...]!

Really appreciate your words and kind welcome !

[[...]]

@[Bi...],hi again!

As i said i'm not an expert or doctor but have learned about benzo through my own and other people's experience. It's a very nasty thing, soft and comfortable in the beginning. It seems to me klonopin most probably caused the worsening of your situation. Benzo taking long-term is notorious in this regard. I think you were right when decided to taper off it but did it somehow in an improper way. And all the changes with medication made everything worse further. The symptoms you described are quite common for benzo/ its withdrawal induced issues.

I can't say i had the same situation but something of the kind. 

I think I'd try to stabilise on benzo and then taper it off but properly. And i also think an important thing is steadiness. I mean not to jump from medication to medication or a dose to dose unsystematically. I did a lot of it and was kind of "punished". Perhaps not the best advice and much to the point but at least something for a start. 

Wish you stabilising and getting better and better!

[[Bi...]]

@[...] Thank you very much for thinking with me! I understand it's only a advice on bases of your own experiences! But you not recommending to co back to Klonopin ? I am now for around 3 months on 10 mg diazepam and there is no stability it's still extreme bad... So try to less the dosis by taperingstrips? (0.1 mg in 2 days). You general think it's better to try to stop completely?!But if it is BIND? The withdrawal condition? Isn't it getting worse? And lost what do you think about asking a professional like Nicole Lamberson? It's very very expensive for me but can she help? Thanks again! My English is not perfect, sorry for that. My main language is Dutch Kind regards Arjo

[[...]]

22 hours ago, [[B...] said:

@[...] Thank you very much for thinking with me! I understand it's only a advice on bases of your own experiences! But you not recommending to co back to Klonopin ? I am now for around 3 months on 10 mg diazepam and there is no stability it's still extreme bad... So try to less the dosis by taperingstrips? (0.1 mg in 2 days). You general think it's better to try to stop completely?!But if it is BIND? The withdrawal condition? Isn't it getting worse? And lost what do you think about asking a professional like Nicole Lamberson? It's very very expensive for me but can she help? Thanks again! My English is not perfect, sorry for that. My main language is Dutch Kind regards Arjo

@[Bi...], yes, it's kind of thinking with you and sharing mostly my own experience, which was rather a tough one, + other people's who i know)

English isn't my mother tongue either, so no problem) Yours is good and, what's important, understandable.

Everything about benzo is so complicated and yet simple. I'm positive if you're somehow completely off it, you'll get better. But it will most probably be a difficult road, sure, to success. 

My opinion is BIND mainly comes from benzo use. A proper taper helps to avoid BIND, if any, caused by benzo withdrawal. I myself seem to be going to have it unfortunately, my muscles🥺, but in comparison to what i had while being in benzo tolerance, it's bearable and doesn't prevent me from being happy and enjoy life in general And i do hope my muscle issues will resolve in the end. I'm ready to wait)

I think you should try to stabilize on diazepam (updose ?) And then go down, steadily. I never stabilised myself and my taper was a hard one BUT it wasn't much worse than the state i'd started tapering off benzo. 

Unfortunately, i don't know about Nicole Lamberson. I think if you need opinions on her or help by such specialists in general, you can start a new thread on Withdrawal, Use and Recovery forum about this.

As for a good taper... I do hope some buddies will look in and share their thoughts on how to go about it better.

Have a nice day🌺)

[[Bi...]]

@[...]

thank you Kate! I don't dare increase the diazepam. When I did that I immediately became even sicker and when I lowered it by 0.5 mg it also went wrong. So actually since I switched from Klonopin things have gotten worse. maybe I'm just responding bad to the diazepam... I tend to reduce it very slowly using tapering strips. I understand that you are taking steps in your recovery after a very difficult road! I certainly hope that the pain in your legs will also decrease. If other buddies want to think along, that's always nice. I am now leaning towards tapering strips with a reduction of 0.1 mg every 2 days. I have to try something.. i am only survive in minute for minute now. God bless you! 

[[Ka...]]

Hello @[Bi...] I’ve no experience of klonopin so can’t offer any wisdom on that particular benzo. 

I have taken diazepam for several years and am prone to have ME relapses. I have a hunch that benzo in my case may have interfered somehow in underlying ME. 

*Tapering strips interest me. It seems sensible if this is a workable goal to follow incremental reductions in diazepam agreed between yourself & your prescriber. Wish you well. 

*For other members see taperingstrip.com for info & availability 

Edited May 10 by [Ka...]

[[Bi...]]

Hi @[Ka...]

Thanks for your response! 

It is so difficult, what is the ME and what the diazepam or the the 13 years of using Klonopin...

Before using Klonopin I was already sick.. so do I know feel the depths of the ME what was a bit suppressed by the Klonopin? Or is is the diazepam what I cannot handle...

But you have ME too? And do I understood it right that you still using diazepam? 

Greetz!!

[[Ka...]]

Hello again @[Bi...] it is tricky knowing what is causing which illness/symptom. Even more confusing that benzo can mimic other illnesses such as ME!

I was diagnosed with ME years ago recovered but tend to get fatigued & think it’s left a kind of weakness. I took diazepam for several years, tried to reduce then got stuck at a low dose which was neither therapeutic nor helpful at all. I wanted to stop so made a concerted effort and finally ceased diazepam in January. Early days. 

The connection between our underlying health and benzos is complex. I’m a firm believer in a holistic approach. I didn’t really want to take a benzo but found myself in a fix! 

[[re...]]

Hey there Bird. I am so apologetic for your suffering. Are you able to read a book? And are you able to eat? What is your current diet like?

If your diet is ok and you can tolerate food.  I would get "the wahls protocol" book. This woman is miraculous in her story and used serious dietary changes and her MS (that no one could help her with) went into remission. For a real brain issue like yours I would consider this. Look into the power of Omega 3 fatty acids as well as MCT oil. The brain needs major healthy fat consumption for optimal function. Nothing outside  can "heal" your brain except your own ability to heal it through a strict nutritional diet. And even then you actually may never heal 100 percent, but you will much lower in your symptoms and possibly symptom free if you continue this path. Also I understand you are bed bound, but if you could just start doing some stretches or walking in place or even outside around your residence this may help you. The brain needs movement i think. 

[[re...]]

I wouldn't even consider getting off the Benzo at all and not even tapering until you start implementing some other stuff first to build your strength back up. 

[[re...]]

Eating lots of foods high in B vitamins:

Beef, Chicken, Turkey

Nuts and seeds

Tuna, Salmon

Eggs

Legumes (if you can tolerate) Beans, lentils,etc

Leafy greens

[[Ka...]]

Just checking @[re...] are you confusing ME (also known as CFS) which is a chronic fatigue illness usually post virus with MS? 

[[re...]]

Oh no Katrina I am not actually. It is just that this diet (the wahls protocol) from what I have observed is great for OVERALL brain health not just MS. I have been obsessed with the keto style diets with lots of fats and they do seem to help with a variety of brain conditions as they are pack full of healthy fats and nutrients and B vitamins which give the brain it's proper energy. Just a thought. Unfortunately when there is a brain issue. 

She mentions alot about her extreme fatigue issues in her book as well. She became bedbound due to this nasty fatigue from her MS condition. Man is the brain so complex 

Check this article out:

https://pubmed.ncbi.nlm.nih.gov/25238862/

[[re...]]

I have seen so many times that brain illness is usually related to mitochondrial dysfunction and doing all one can to get that mitochondria a kick start is the best medicine. Although it will take much longer to see results. 

[[re...]]

More info on the importance of exercise. 

 

 

Exercise and mitochondrial health

Jonathan M Memme ^1 2, Avigail T Erlich ^1 2, Geetika Phukan ^1 2, David A Hood ^1 2

Affiliations expand

• PMID: 31674658
•  
• DOI: 10.1113/JP278853

Free article

Abstract

Mitochondrial health is an important mediator of cellular function across a range of tissues, and as a result contributes to whole-body vitality in health and disease. Our understanding of the regulation and function of these organelles is of great interest to scientists and clinicians across many disciplines within our healthcare system. Skeletal muscle is a useful model tissue for the study of mitochondrial adaptations because of its mass and contribution to whole body metabolism. The remarkable plasticity of mitochondria allows them to adjust their volume, structure and capacity under conditions such as exercise, which is useful or improving metabolic health in individuals with various diseases and/or advancing age. Mitochondria exist within muscle as a functional reticulum which is maintained by dynamic processes of biogenesis and fusion, and is balanced by opposing processes of fission and mitophagy. The sophisticated coordination of these events is incompletely understood, but is imperative for organelle function and essential for the maintenance of an interconnected organelle network that is finely tuned to the metabolic needs of the cell. Further elucidation of the mechanisms of mitochondrial turnover in muscle could offer potential therapeutic targets for the advancement of health and longevity among our ageing populations. As well, investigating exercise modalities that are both convenient and capable of inducing robust mitochondrial adaptations are useful in fostering more widespread global adherence. To this point, exercise remains the most potent behavioural therapeutic approach for the improvement of mitochondrial health, not only in muscle, but potentially also in other tissues.

 

[[Ka...]]

Really confused - people with ME should be very cautious with exercise 

[[re...]]

Bird:

I know you can't move much right now, but maybe try the eating thing for a bit and if at all possible then do small movements little by little until you are really going for it. 

I BELIEVE IN YOU!!!!!!!!!!!!!!!!!!!!!!1

[[re...]]

No definitely not too much exercise right away as it can be devastating. I am saying go with diet as medicine first. Then small movements of stretching, walking around the house, etc but ONLY if you feel up to it and are ready  and build it up from there. 

I put that article because CFS just like many brain disorders is a mitochondrial dysfunction problem many times and exercise gets those mitochondria kick started so to speak. 

 

[[Ka...]]

Having had debilitating ME/CFS I can vouch it is not a brain disorder 

[[re...]]

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6419524/

 

Highlights:

 

What does evidence from the review tell us?

Moderate‐quality evidence showed exercise therapy was more effective at reducing fatigue compared to ‘passive’ treatment or no treatment. Exercise therapy had a positive effect on people’s daily physical functioning, sleep and self‐ratings of overall health.

One study suggests that exercise therapy was more effective than pacing strategies for reducing fatigue. However exercise therapy was no more effective than CBT.

Exercise therapy did not worsen symptoms for people with CFS. Serious side effects were rare in all groups, but limited information makes it difficult to draw firm conclusions about the safety of exercise therapy.

 

 

[[Ka...]]

It’s an area of debate we can’t generalise - ME suffers ought be cautious with exercise 

[[re...]]

What would you consider CFS?

I am just trying to learn. It is more of a unknown syndrome?

Would you say that maybe benzos or other drugs can cause CFS?

I don't wanna assume anything. I just don't know. 

Mitochondrial dysfunction is still at the root cause of many syndromes and there are many in the modern world. I think it is our highly stressed and nutritionally lacking lifestyles. 

[[Ka...]]

We are hijacking this thread somewhat.  CFS is a very real, debilitating illness & is largely misunderstood. It is post viral. It is not a brain disorder. You cannot push through it.