• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

How I improved from very severe to moderate in 14 days

sb4

Senior Member
Messages
1,666
Location
United Kingdom
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

Senior Member
Messages
363
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?
 

Slushiefan

Senior Member
Messages
113
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

Moderator Resource
Messages
17,507
Location
Texas Hill Country
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 :nerd: I'm really glad to hear about this @MartinK and very glad you shared it with us -
 

lenora

Senior Member
Messages
4,958
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
 
Last edited by a moderator:

hapl808

Senior Member
Messages
2,178
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

Senior Member
Messages
374
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

Senior Member
Messages
4,958
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

Senior Member
Messages
374
@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

Senior Member
Messages
4,958
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
 
Messages
72
I have used a device like that going back years. I used it to lower blood pressure and heart rate which were both high. I recommended it to a friend who had super high bp like 170 over 100 something like that and it worked for her too. Might have saved her life cuz you can go at any time with high bp

What I used was a $20 machine I just looked at it and its a balego tens. A tens unit puts a tiny bit of electricity in the body to loosen up tight muscles or to create exercise. I've seen something like it on ebay for as low as $10 or 12. What I did was put the contacts on each ear. They recommend one on the ear lobe and the other terminal on the little ear flap that you push in to stop hearing something. There are other places on the ear you can put it. I suppose you could put it on your head, face or whatever but the ears do work. You will need contacts that attach to the ear, I got mine off ebay I believe

the vagus nerve contacts the ear, it goes from brain to all your abdominal organs and to the ears. The vagus nervous system is the parasympathetic system and calms you down where as the sympathetic system revs you up. I only used a tiny bit, I set it at about 30 micro seconds and a frequency of 10 to 50 hz, very low current, you can play around with it. Mine has 2 channels but I only used the one, one clip on each ear. You can set the intensity with a volume control. It puts a tiny current for a short interval and it works. I haven't used it in a while but this thread got my attention. I will report back if it snaps me into remission but I'm not holding my breath, just cautiously hopeful.

I've treated or cured a lot of problems I had by trying one thing after another. Sooner or later you find what works or at least helps. The nice thing about this is its drug free and who knows, it might just flip that magic switch we keep looking for
 

MartinK

Senior Member
Messages
374
Guys, after trying different intensities of tDCS again without success, it looks more and more like the massive sleep deprivation was the main factor in my amazing improvement. (or maybe tDCS + sleep deprivation, but not tDCS alone)

As I think back to those improvement days, it becomes more than obvious.
But honestly scared to do it again and looking for determination. Of course, if I knew it would work 100% again, I would do it without hesitation, because the improvement was significant and allowed me to live an almost normal life!

I plan to write to Cort about this, I need to get this news about my story to as many people as possible, I need as much discussion as possible about it - it is necessary to find out what could have primarily changed in the brain during sleep deprivation. Maybe we can figure out how to induce this state again without risk of sleep deprivation.

Can you think of anyone else who could help spread the word and help find what could have caused the improvement? Who to connect with who understands brain chemistry and what goes on in the brain when there is chronic sleep deprivation?

Wish it would work for more of us! Please, help ;-)
btw. do you have an direct email to Cort? Or for more people with big reach?

Thank you, Martin
 

Garz

Senior Member
Messages
363
HI Martin
i wish you nothing but success in replicating your amazing gains

but please be very careful and take strong precautions if following this course of investigation

there are documented studies of sleep deprivation where ALL PARTICIPANTS (not some - ALL of them) entered a state of psychosis after only a few days of sleep deprivation - including Schizophrenia, paranoia, delusions etc perhaps even suicidal thoughts.
( i don't recall all of the specifics - but it was definitely a severe and universal effect described as Psychosis)
and all of these people were healthy young medical students with no pre-existing physical or mental health issues.

in such a state. the risk of doing one self or others severe harm or even putting ones life in danger is dramatically elevated.

doing such an experiment would therefore be an extremely risky endeavour with unpredictable consequences - and i think some considerable scenario planning and safety precautions would be needed to do it safely

it sounds like you are already convinced that this must be the answer - which further raises the risk that safety measures might be missed or ignored ( as focus will be on expected outcomes - not unexpected ones).

i am not here to pour cold water on ideas - but please - if you are going to go down this path -
take a breath
take a step back
if you do decide to proceed
at the very least take steps to do so safely - i.e. not on your own -
and have plans for dealing with things like extreme paranoia - believing things that are not true etc
( i have been with people in that state and it is very distressing and often very difficult to manage)

all the best
 
Back