How I improved from very severe to moderate in 14 days

[sb4]

I had terrible sleep about 8yrs ago for a month. Felt like 2-3hrs per night. It was was caused by using a transcranial device meant to help sleep. For the first month it didn't seem to effect sleep so I didn't realise it was that causing it.
Anyway I didn't notice anything beneficial from the sleep deprivation.

 

[Garz]

so happy to hear of your improvement Martin -

i sincerely hope it leads to a path to further improvements for you

i have heard about pretty remarkable effects from transcranial treatments with powerful electromagnetic fields - i think in people with things like treatment resistant depression, suicide ideation etc - but not from direct DC currents. Intriguing

in the interests of scientific rigor - should the tramadol be added the the list of possible causes?

 

[Garz]

since, in your account, the improvements in fatigue came after the tramadol - i did a quick search on Tramadol and CFS - and this link came up near the top of the page

https://www.healthrising.org/forums/threads/tramadol-does-more-than-relieve-pain.6027/

i hope its of some help

 

[Slushiefan]

I personally have put a lot of effort into sleep management after I observed some improvements following nights of reduced sleep. At most, the benefits would extend into the next day. After the next night of sleep the improvements would promptly reverse. Never did I once have more than one day of improvement. And after that day, once I slept again, even if I reduced the time spent sleeping the second night, symptoms would always worsen significantly the following day. This worsening would slowly return back to my regular state by 3 days.

As for tramadol I have found it does improve things as well, but that would also reverse once I stopped, within a day.

All in all, I think these two factors could explain some improvement, but to me neither would adequately explain the description by Martin.

I for one would like to experiment with the TDCS hearing these results.

 

[Mary]

I went through a period of often getting 2 hours of sleep a night - once 4 days in a row. It was hell, and scary. I began to wonder if my body was incapable of sleep. I've gone through bad lack of sleep patches for many years and it's never had a beneficial effect on my ME/CFS. I did get in a car accident once while severely sleep-deprived. I try not to drive if I've only had an hour or 2 of sleep, but it was some errand I felt I had to do. The accident wasn't my fault, but I believe my reaction time was slower than it should have been - I might have been able to avoid the errant other driver altogether if I'd been well-rested. But no one was hurt - whew!

Anyways, lack of sleep has never done anything good for me, just another way of destroying my life.

So I'm voting that the tDCS caused the improvements for @MartinK I'm really glad to hear about this @MartinK and very glad you shared it with us -

 

[lenora]

As a lot of you know, I've had severe, complicated insomnia for a good part of my life.

When I was not sleeping well, a severe type of insomnia (two sleep clinics and prescriptions of tramadol for each) I discovered that I really wasn't any worse the following day. As long as I had one night of decent sleep per week, I did OK...well, more or less. Tramadol was useless for me, so I stopped relying on it. ALL sleeping meds have proven useless, so I don't take anything apart from my regular night meds. Yours, Lenora

 

[Slushiefan]

Guys, I checked tDCS montage guide here: https://tdcs.com/montage-guide/
I think it was F3 / F4 or C3 / C4.
I go for tDCS on monday so I will take a picture of my head.

Hi @MartinK, wondering how Monday went for you, when you have time?

 

[hapl808]

Anyways, lack of sleep has never done anything good for me, just another way of destroying my life.

Same. I had a period of time where new MCAS and MCS symptoms ruined my sleep for a few months. It basically dropped me from moderate into the beginning of severe and I never really recovered.

 

[MartinK]

Hi all, so, now I know - places on head are C3 and C4 - anode left, cathode right side.
I do tDCS again now, for 5 days, but without success. :-/ It's very disappointing but i will continue.
So, I will definitely keep trying, but now the thought comes into play if my improvement was really due to sleep deprivation! As if it changed something in the brain and it started to function normally and stopped sending faulty signals about pain and inflammation to the body - it really felt like that 2 months ago. But first days with 1-2 hours of sleep was hell.

@Garz Tramadol helped me to overcome the massive pain and burning sensations when I was extremely sleep deprived, it worked really well, but the effect of tramadol was gone the very next day after I stopped it - so it wasn't behind the overall improvement.

If i try sleep deprivation again I'm wondering how to do it right... But if it works it will be worth it! Those more than two months have been so amazing!

 

[lenora]

Hi @MartinK.....I'm in the midst of sleep deprivation at the moment. I'm planning on sleeping for 2-3 hrs. this a.m. and then staying up the remainder of the day. I have gone much, much longer without sleep...and have been able to function as well as someone with it. Unfortunately, my eyes are now giving me trouble and as I've aged, it's harder for me to not get 8 hrs. or thereabouts of sleep.

I've had family members who have had ECT and it has crossed my mind that it may be helpful in our situation. It doesn't scare me as much as it may many members....probably b/c I've seen years and years of it being used with absolutely no after-effects, except keeping the patients (my biological family) on an even keel. A lot of them were bipolar. Anyway, if you or anyone on the Forum has read anything about ME and ECT, please let me know. I'd be interested.

Everything seems to be trial and error, very few definite answers. Hope you will do better. Yours, Lenora

 

[MartinK]

@lenora are you still in sleep deprivation?
I want to do it again to see if I get results, but I'm also worried because I had really painful PEM when I had massive sleep deprivation for the first time.
But the improvement, the breakthrough after a few days with minimal sleep - it was just amazing! I want so much to get better again.
But I want to do it right - I'll try to read about it as I suppose there may be risks involved.


Does anyone else here know anything more about sleep deprivation? What happens in the brain during this?

 

[lenora]

Hi @MartinK......I took two sleeping pills last night and actually slept. I feel much better (definitely not crabby) than I did yesterday. Everything hurts, so perhaps that's playing into it. I'm going to get a 'script for the ointment my usual (now deceased) neurologist gave me a few years ago. It helped considerably, but had to be done at a Compound Pharmacy. I'm sick of hurting again....well, I'm sure you know.

You're much younger than I am now. When I was young I could bear endless nights of no sleep...not so now, it really gets to me. Probably pain as much as anything, although I'm a cheerful person and no sleep now makes me downright grumpy.

I don't know how much a sleep study of "normal" people would help us. I think even among our group, we have different sleep deprivation. I don't blame you for trying though...and would encourage you to do so. I wish you well. Lenora