Need od advice with Myalgische encephalomyelitis and withdrawal benzodipine

[[re...]]

Do you think it could be endocrine related?

[[re...]]

Oh I believe you that it is real no doubt.

I have seen so much on it on here and other places like this one lady Raelen Agle that has a youtube channel talks about her struggles with this very thing. 

[[re...]]

So would it be similar to Epstein Barr? 

I am just trying to learn.

[[Ka...]]

It arises post virus and ultimately affects our whole being 

[[re...]]

Ok I understand a bit better now. 

Thank you for clarifying. 

[[Bi...]]

@[re...]

I really appreciate your words.

But I am sick for 19 years. 

That will see: i tried hundreds of methods and diets etc 

Also the Wahls protocol for 4 months. My situation worsend through that. I list 10 kg and I had to stop . They gave me nutridrink to get weight back. I can't walk or do things, I am surving minute for minute. Most of the time O can't read and movement I can only for a few meters a few times a day.Please look for several Myalgische encephalomyelitis and especially for PEM. Again I really appreciate your efforts, but want to advise you too first ask more about a situation before give so much things. People have there journey after 19 years. I have to find my way in this situation with the benzo. And thinking of slow tapering. I can't build up my strength first... Blessings!

[[re...]]

I apologize if I sounded assuming and that my advice was "well just do this" and it will all be fine. That was not my intention. 

I hope you find a solution to your issues. 

Praying for your health

[[...]]

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

@[...]

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! 

Thank you, @[Bi...]!) You know when reading your posts i've had a feeling that you have some true thing inside to "fight" for yourself and win. Really.

I'm not sure what tapering strips mean. Hope it's a good decision. Are you tapering under a doctor observation? I think you know it but just in case - the lower doses you reach the smoother the process should be. Perhaps, that's why your Klonopine reduction kind of failed, no? I tried to calculate the rate of your K tapering and the thought crossed my mind.

I think you may have difficulty exactly with diazepam. I tried different benzo and diazepam caused the most unpleasant feelings of all. But... It took my pain away best of all too... A really weird stuff.

Yes, i'm taking steps to recovery after some hard time but it was the hardest WHILE i was still on benzo. I do understand what you mean talking of surviving minute by minute. I did it too. 

Wish you everything good and healthy! I do believe everything will get better for you one day

 

[[Ka...]]

@Kate here is link: 

https://www.benzoinfo.com/benzodiazepine-tapering-strategies/#tapering-strips

Another member in NL used these. 

[[Bi...]]

@[...]

Hello Kate,
Thank you!
I'm grateful for you that you're mostly out of it.
By tapering I mean that the idea is to reduce the doses by 0.1 mg every 2 days. I think the diazepam is working completely wrong for me... It's a nightmare. I often have to cry at night to take that 10 mg because the days are so horrible, really traumatic. I'm thinking of breaking up the tablets myself and going to 9,825 mg (that's the smallest dose I can share with a pill cutter). The doctor has been taking weeks before they can reach an agreement with the pharmacy... But yes Am I doing the right thing here? I'm also still dealing with the ME. Sorry I can't discuss your situation in more detail. Typing this is already costing me everything. Blessing!

 

 

[[Bi...]]

@[Ka...] thanks for the link. There is one pharmacy in the Netherlands who make special taperingstrips. My dock is in contact with them 

[[Ka...]]

Is it rainbow pharmacy? 
 

[[Bi...]]

Yes it is

[[...]]

On 11/05/2024 at 14:06, [[B...] said:

@[...]...

I'm thinking of breaking up the tablets myself and going to 9,825 mg (that's the smallest dose I can share with a pill cutter). The doctor has been taking weeks before they can reach an agreement with the pharmacy... But yes Am I doing the right thing here? I'm also still dealing with the ME...

 

@[Bi...], i'm endlessly sorry for you being in such a state. I do understand it and remember the time when typing even in my own language was a torture for me. You don't need to answer or discuss anything if you don't feel well enough. 

Not sure whether it's the right thing or not (the quotation in the box) but absolutely sure that you will feel better when you're off benzo, perhaps not straight away but soon afterwards.

Do wish you brighter days to come! And i hope they will!)

 

[[Bi...]]

@[...]

Thanks. I totally broke.

I find a coach and she explained me that I have a severe withdrawal syndrome way to fast dropped the dosis and also a bad response on the valium. So she advised to do a crossover back to Klonopin. Then first find a balance in higher doses and after that we can lower down in small steps. So I am in the middle of the crossover and it's extremely hard and complicated with the myalgische encephalomyelitis.

Blessings 

 

[[...]]

@[Bi...], oh, whatever it's good news you managed to find a couch who seems to be understanding. I think it might be a good idea to cross over to klonopin bc of your bad reaction to diazepam. How much higher a k dose is supposed to be? 

I do feel for you and, think, can somehow imagine what a bad time you're living through. Please, post on your progress here, at least, from time to time. Good luck to you May your journey to the better be as comfortable as possible.

[[Bi...]]

@[...]

I try to switch tonight again with 2mg diazepam replacing with a drop of K.Then I am on 4V and 5K. In daytime I use 4x1 dr of K for the blood level.

So when I am totally switched it  will be 7 or 8 K for the night and 4K in daytime. (11 dr of K= 22 V)

I am very nervous for switching another 2mg.

The lost switch was very heavy.

I am completely bedridden exhausted the whole day or have sometimes very heavy panic attacks (for which I have to take extra K) so it feels like I am in the middle of a road with no end or asking if I took the right decision/way 

 

Thanks!!🙌🏻

[[...]]

@[Bi...], just don't expect anything too awful to happen. Everything will be all right in the end. I'm sure. And, yes, i think you're doing the right thing bc diazepam just doesn't agree with your body. Switching from benzo to benzo can be hard. I do know. I did lots of the switching. It felt torturous but i survived.

So sorry for your condition. Just keep going! When we start badly, we tend to finish well. I know panic attacks too but mine weren't so unbearable and since i knew they were caused by benzo or its withdrawal, i just waited them out.

I'd so much like your bumpy road to turn into smooth highway to take you to better days. I believe it's exactly what will happen!)

[[Bi...]]

@[...]thanks! You definitely know where you talking about!; what a hard road to switch multiple times from benzos! Did a switch give you relieve? How long did you need to switch? Also in little steps?

Unfortunately the panic attack don't stop and are not completely benzo related I quess. (Yes a bit worse!!)Before I used benzodipine had much anxiety and sometimes panic through myalgische encephalomyelitis. And I it cost me so much of energy what I don't have and makes me more sick.

And now with the switch I got them worse and they don't go away after waiting for hours. I see they are sometimes related. Yesterday when the doctor came with the idea to switch another 2mg I straight away I got a panic attack. Its not alone my experience with the withdrawal but also 19 years of sickness and all the bad responses on all the treatments. Its in my subconscious. And you know how it is when you can only stare to the wall and survive . Your thoughts are continuously looking for a way out or a solution.

 

The positive is with the diazepam I never had Panic attacks I could only breath and stare etc. I think it is the right dissision but when you are in the middle you think what do I do ..was this good? You don't know the perspective if the K is going to work like the past. And I thought in December I was close to the finish line and now I have to switch back and have to high up it seems I am further than ever🤔

My first night with 2 mg less was not a success. I barely sleep it feels horrible at the moment. It's crazy how much impact this have even I took a extra drup of K in place. In theory is should be the same. But ok.  One day at the time says that famous gospel song.

Thanks again!

Edited May 28 by [Bi...]

[[...]]

Hi, @[Bi...]! I'll never be tired of saying how sorry i'm for everything you're going through🥺 and, guess, right now, it's mostly due to benzo. Benzo can be cruel to us and revengeful when we try to part with it. And yet benzo can't kill us "just" torture for a while. Sure your ME doesn't make things easier either.

I reread all the posts of yours once again. Yes, i think you're doing the right thing in switching to Klonopin. I calculated a bit) Your dose of K (12 drops) will be much less than it was in 2022 (33 drops) when your benzo reduction journey started and once you're stabilised, you'll be able to taper off it. Just stick to the scheme, no more unsystematic jumping from medication to medication. It always makes things worse. I'd also try to avoid extra drops. I know it may seem unreal. I do remember myself. My thoughts were "Ok, i will just lie, grit my teeth and stay this way till i pass out. I never did and always got a bit better eventually.

Just bear in mind your road to better days is might be hard. Unfortunately, it's almost inevitable. Just try to accept it. I did and it worked, although the slow-motion hell of mine was horrible. 

About switching from benzo to benzo, it can feel excruciating. I always switched them just overnight, didn't know it was a bad idea.

I wanted to write lots more but not sure its ok for you to read much at the moment. I remember it was extremely difficult for me.

Hung in here and, please, update on your condition. I'm always ready to support you, really! ✨

[[Bi...]]

@[...] Thanks for your kind response. I know and feel that you understand everything I say. I have no energy to answer completely.

But it's a grazy road. I ask myself why I ever decide to stop. It feels like I further away than ever. When you can do nothing it feels like your whole live is around benzodipine. Wait for time to take it questions if I do the right thing etc. Especially when I have so much complains I never had before. Klonopin on day time they advised it, but I don't know what is what. Are I treating the withdrawal symptoms or did the day stuff have q huge impact either 

I decided to day to go to 4x2 drop of Klonopin on day time. Because 4x1 wasn't sufficient.. the afternoon everything increase. So one drop only worked for a hour.. I thought I was getting grazy. Today I had to take oxazepam to put me out of a deep attack because ai didn't now it anymore with the drops. I took 3 in 3 hours and it didn't worked so you think the Klonopin is the fault. But the problem was that the whole day I got to less. And the impact of changing the night meds!

And you get more afraid of taking it.   But okay tomorrow I try 2 drops and hoping it works longer and better. And when you can do some distraction everything is easier. If you can't your just surviving and constantly busy with the benzo. I wish I could drop everything out of the window especially my notebook we're I write everything about the time and doses. 😬

 

Enough now.

Thanks for reading and caring.

God bless you in Jesus Name.❤️‍🩹🙌🏻

 

[[...]]

@[Bi...], hi!) How're you with all the switching?

I think you decided to stop because you just felt that something was wrong and were right. Taking benzo hardly helps anyone, especially long-term but destroys our nervous system, luckily in a reversible way.

When i was suffering no end 2 years ago and didn't know why, i could never guess the little pill was to blame, neither could my doctors. 

No, you're not further from better days than ever You're in the middle, concerning switching from medication to medication. It always feels hard but will settle down eventually, and, really hope, soon. 

I feel for you and am sending rays of support, understanding and compassion!🌟 Hang in there!

[[Bi...]]

@[...] Thanks you so much!  I am struggling..

I stopped taking Klonopin 9 days ago during the day   It didn't go well..so bad that they want to high it up from 5 to 10 dr.

I used it for 3 weeks (daytime)

No I stopped for 9 days.

And it's a disaster 

Extreme dizziness and anxiety attacks for 9 days now.  but at the end of the afternoon it increases, it seems like a spinning top in my head and I can't handle smells or anything.  After 2h. it subsides a little and around 11 p.m. it becomes intense again and  through my sleeping medication I don't feel it anymore...is this a matter of persevering?  or ?

It's so strange everything is worsening around 16h.

When I used the diazepam I got around the same time much more complains.(In the past by only using Klonopin I don't have this issue)

But I think this relate to stopping Klonopin on day time but not sure ofcourse... I try to hold on.

For night I am on 11 dr K + 4 valium. 

I want to go on with the transition to Klonopin only when I feel a bit better on day time so I have hopefully a new baseline 

 

God bless you 🙌🏻

Edited June 15 by [Bi...]

[[...]]

Hi, @[Bi...]. Sincerely sorry to hear what a horrible time you're living through now.

Did you stop taking daytime K in accordance with your doctor? Of course it can be felt just awful and you're still crossing from valium to klonopin on top of it. Even if you've suspended the process right now it's yet affecting you.

I think the period of crossing from one benzo to another as well as any other changes in medications and time of intake is bound to be hard. It's about our unstable at the moment nervous system being kind of at a loss and trying to catch up on ever changing things. Its reaction can feel horrible. I guess, given some time and no changes, your nervous system should calm down. Just what i've noticed from others' and my own experience.

Sending my support and understanding to you💖. I wish i could help you more.

 

 

[[Bi...]]

@[...]

Thanks.

No my doctor didn't know it anymore. The K on day time was a disaster I had to put a alarm every 3 hours to not 'lose' it.

So they idea was you high-up the dosis from 5x1 to 5x 2 dr. I then desides to stop it. In a week I put it to zero. But I am know almost on to weeks and the dizziness is still grazy above of other things. I hoped it was less now...I only used it for 3 weeks in daytime.

Yes I am not planning to make changes in night medication. First it has to stabilize on daytime. But sometimes you thinking isn't the problem through the night meds.. I think I have to be patient. But only typing this everything getting worse. Indeed my nervous system.

Ps I couldn't talk to the coach anymore she only want to help through videocall and I am to sick for that. Mail wasn't possible for her anymore 

Thanks for thinking along ! Good to hear your input!

Thanks!