Need od advice with Myalgische encephalomyelitis and withdrawal benzodipine

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Hi, @[Bi...]! So, you decided not to take daytime K on your own accord and did it like over one day? Sorry if i got it wrong. I've just come home and feel really tired and on top of it i had my last dose of rabies vaccine given a few days ago. It's really giving me a setback with my muscles.

Let's elaborate. What K dosages are you taking now and how many times per day? What other medications? I'm not an expert but i also was mostly my pwn doctor during the process and i do the thinking along with you🙂

[[Bi...]]

@[...] I am so sorry you feel so bad!! I really understand. And muscul pain after a vaccine..

You can always answer later! 

 

Yes I decided on my own. I notified my doctor about it and he didn't respond. I understand that it's so complex with my ME. And with the K in daytime it was a disaster 

 

So since 14 days I didn't take anything anymore on daytime.  I stopped with it in around  a week 

 

For night/sleeping (23.50) I take 4 mg diazepam and 11 dr of Klonopin this doses since 12 days. I high-up the K with to drops 12 days ago.

From 4pm onwards the complaints increase and it is like a spinning top in my head and body. sometimes it drops a bit around 8pm. but sometimes it lasts until my night medication. And then the medication has to suppress it, which also makes me sleep very restlessly and lightly. I sometimes think about taking some in the evening. or persevere...

Edited June 19 by [Bi...]

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Hi, @[Bi...], thank you so much for your compassion. I'm grateful to you and feel for you too💞

I tried to look through everything once again. It seems you've been changing the intake routine but not the total daily dosage, at least not much. And you're still switching from V to K, right? I know by my own experience how tough it all can be felt. Plus your ME... So hard and you're so tired and patient.

I'm sure you must begin feeling better some time after your crossing from V to K is completed. Perhaps, it can take quite a while. I wish i knew how to make this while easier but in our case, we can only wait.

As for your rough evenings, i'd bank on "persevere" but only you know how much it's actually bearable and what you can cope with. If not, perhaps to make it regular bc the goal is for you to stabilise first.

Wishing you stabilisation with all my heart and i believe you'll reach it in the end, just try to make as little ubsistematic changes as possible once you're on K only.

[[Bi...]]

@[...]

Thank you Kate. Of course I also sympathize with you. It's that I feel so bad otherwise I would have asked you more. But I can barely type. I prayed for you! Yes, it is true that I am still in the transition phase from diazepam to Klonopin. I'll just wait for now. I have taken an extra drop the last few nights and I immediately notice during the day that the dizziness and misery increase even more. But I wanted to sleep a little better because I hardly fall asleep due to that intense attack late at night. And indeed I now had much less due to stopping during the day! It's bizarre how intensely you can react to one or two extra drops. I will continue this for the time being because this change also has an impact..thank you again God bless.

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@[Bi...], it's so sad you kind of forced to choose between dizziness and sleep. Such an illogical process🥺.  Can understand you 100% about typing. I couldn't do it either as well as lots of other things and never enjoyed myself. Everything was trying no end. Guess it's our nervous sistem, temporally messed by benzo, reacting to all the changes inadequately. I think it must settle down eventually. I hope rather soon.

Thank you for your sympathy. As for me, it really helps. Stabilisation and healing to you!)