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How I improved from very severe to moderate in 14 days

MartinK

Senior Member
Messages
376
I haven't been here for a long time because I was going through the most challenging time of my life. I began to suffer from extreme insomnia, which gradually worsened all my symptoms - pain, burning in the body, exhaustion. I was falling into a state where I thought I was going to die. And I collapsed...

The ambulance took me to the hospital, but from neurology I was transfered to another facility - I had no idea what was going to happen. They only told me that a new facility has opened where they will help me with sleep and where there is also a neurologist.

It was a shock for me when I found out that the facility is called a "mental rehabilitation center" and it houses mainly people with mental problems... However, they promised me that I would have an individual program, that they would help me with sleep and that their neurologist would take care of me.

The first week I was given tramadol to help with the crazy pain and feeling like my body was on fire. However, the insomnia was still extreme... And tramadol was taken from me after a week...

However, one day a wave of energy appeared… I tried to sit on the bed and i did it. The next day the same thing happened (and I only slept for an hour!). In these days I also received a tDCS device from the neurologist to stimulate the brain centers.
He told me honestly: we don't know exactly what's going on with you, how your past infections have affected you, but we're going to try to tell your brain that the signals it's sending to your body are faulty.

The next days i started to sleep a bit better (2-4 hours) and the increase in energy started to be higher again. The pain subsided, the burning sensation in my body, I was experiencing almost euphoria. I started to walk slowly, I was able to sit while eating and they helped me with rehabilitation, which I started to manage without PEM! Miracle!
To make a long story short, I got so fit that when I was released, I was almost independent again, I drove a car, I got out into the countryside after a few years, to my beloved places! When PEM occurred, it was only for a few hours - followed by a wave of energy that stopped it.

there are only two things that could have caused this:

- extreme sleep deprivation changed the brain chemistry and the brain went into the right mode after 14 days of total deprivation
- tDCS affected certain brain centers and they stopped sending false signals to the nervous system
Now I think there is a possibility that our bodies may be healthy, but false signals from the brain are affecting everything (perhaps this is why drugs like Pregabalin, Tianeptine, Benzos often help us).

I really don't know what happened but it worked extremely well! I cried that I was given the chance to live again! It worked great for almost two months now my condition is getting worse again. Sleep is good and I no longer go to tDCS. I guess it's time to explore it further... The most important thing for me is the realization that it worked once - why shouldn't it work again, and for other people?

So, let's discuss sleep deprivation, tDCS and the effects of these two things on the brain!
 

Faith2007

Senior Member
Messages
121
Location
Montana, USA
So this is a really interesting topic. I have been diagnosed with light wave intrusion of deep wave sleep, though other sleep docs disagree on this.

But what I am interested in is neurofeedback, but it actually has to train the brain waves, or it won't be helpful. But I'm not just interested in neurofeedback for sleep, because it can possibly help other things like HPA-Axis issues, which I have, plus more. So I don't think just fixing sleep disorders is the issue, though that would definitely help.

I'm including this article if you wish to read it: https://www.afme.org.uk/neurofeedback-therapy-and-me-chronic-fatigue.html

I have not yet tried neurofeedback due to lack of funds, but it is on my list and the treatment I am most excited about. I may need an EEG first, and will have to find somebody suitably qualified for the treatment.

There are people on here who have tried neurofeedback.

I have had biofeedback done on me for sleep, though that was before I was correctly diagnosed with the type of sleep disorder I had or CFIDS. So it didn't really help my sleep, but I was trained with a machine to be able to step down in my brain (this is not hypnosis) through visualization, which was tied to breathing and heart rate. I am still able to lower my heart rate this way.
 

Wishful

Senior Member
Messages
5,813
Location
Alberta
Interesting. I don't think direct current would retrain brainwaves. I think it might alter some brain cells slightly, shifting some thresholds, making transport channels more or less effective, that sort of thing. My favorite model for ME is a feedback loop involving brain cells, so shifting some parameters of some cells could affect that loop.

Wiki: "The way that the stimulation changes brain function is either by causing the neuron’s resting membrane potential to depolarize or hyperpolarize. When positive stimulation (anodal tDCS) is delivered, the current causes a depolarization of the resting membrane potential, which increases neuronal excitability and allows for more spontaneous cell firing. When negative stimulation (cathodal tDCS) is delivered, the current causes a hyperpolarization of the resting membrane potential. This decreases neuron excitability due to the decreased spontaneous cell firing.[19][26]"

Did you try changing the positions of the electrodes? That would change the path the DC takes and thus which brain cells are affected to which extent. Where did they place the electrodes on you?


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5702643/ "Transcranial Direct Current Stimulation (tDCS): A Beginner's Guide for Design and Implementation"

Seems simple enough to experiment with at home. ~1mA constant-current just needs a transistor and a couple of resistors and diodes, and a battery. Fancy commercial electrodes might be valuable for sensing weak signals from neuron firing, but for applying constant current, I don't see why stainless steel (spoons?) wouldn't be just as good for seeing whether there is any effect.

I didn't see any listings for commercial devices. When they do become available, I'm pretty sure they'd sell a dollar or two worth of parts for hundreds if not thousands.
 

Faith2007

Senior Member
Messages
121
Location
Montana, USA
I had to look up the acronym and I'm curious how anyone gets access to this.
I didn't see any listings for commercial devices. When they do become available, I'm pretty sure they'd sell a dollar or two worth of parts for hundreds if not thousands.
So I found this website that does reviews on tDCS devices, some of which are sold on Amazon:
https://tdcs.com/devices/tdcs/ But the website says these are not approved by the FDA and are not medical recommendations.

So I was looking into practitioners for tDCS and found out that the NIH RECOVER-NEURO long Covid clinical trial is testing tDCS, which you can read about here:
https://www.nih.gov/news-events/new...through-recover-initiative-opening-enrollment
 

Hip

Senior Member
Messages
17,962
I also received a tDCS device from the neurologist to stimulate the brain centers.

Do you know where the tDCS electrodes were placed on your head?

A common area to place the tDCS electrodes is the left and right dorsolateral prefrontal cortex, whose location is shown on this webpage.


I've tried tDCS on my dorsolateral prefrontal cortexes, using currents of around 0.5 mA for 20 minutes; but this has not helped my ME/CFS symptoms. It may improve my mental health a bit.
 

linusbert

Senior Member
Messages
1,207
I'm picturing that as a Far Side comic, with a cliff with a sign marked "Insomniac's leap", with people lining up for it.
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MartinK

Senior Member
Messages
376
Hi guys, thank you for all the discussion!

@hapl808 really hard to tell, what made me so much better. tDCS sounds more logical to me, yes, but what if prolonged sleep deprivation changes the brain chemistry somehow? The fact is that the improvement came while I was still sleep deprived, not after. Thank you for the link!

@Faith2007 thank you, I will check the article for sure! I need to research the effects of tDCS more myself as I will no doubt have to try it again, ideally in the comfort of my own home. I need to get in touch with the neurologist who gave it to me to know more info - now i only know the intensity i was getting and I also know the places on my head where the electrodes were placed.

@Rufous McKinney Yes, the sleep deprivation was extremely difficult to bear - I think the tramadol saved me because it was accompanied by severe pain and the feeling that my body was on fire. However, if it should help, I'd do it again (cautiously, I definitely wouldn't try to go without sleep for days at a time).

@Wishful interesting opinions! It also feels like something is stuck in the wrong loop and the body can be relatively healthy. When I was in the hospital, I got the electrodes in the same position - about the places where devils have horns in fairy tales. - @Hip ...this places

I did 1,8 - 2 mA for 20 minutes.
Device was Rebox - https://rebox.cz/rebox-physio-tdcs/

It seems like a very professional device (and I think the doctor said it was very expensive). I would prefer to rent the device at home. I'm really worried that my condition is getting worse again... I need to find out what worked so well and I'm going to do really hard! I definitely want to research what sleep deprivation causes in the brain...
 

Wishful

Senior Member
Messages
5,813
Location
Alberta
I would prefer to rent the device at home.
If you know of an electronics hobbyist, it's just a few dollars worth of parts. This isn't a case of creating a complex waveform that has to get feedback from the electrodes. Constant-current DC is simple. Actually, if you used just a battery and a resistor of fairly high resistance, variations in the electrodes or skin resistance could be ignored, so it would be effectively constant current.

The expensive professional version just has glitzy controls and displays and other features that make no difference in the current output. If the important quality is defined only as "2 mA DC", then it makes no difference how fancy or expensive--or simple and cheap--the source is. Oh, the expensive device also has expensive legal paperwork with it, not necessary for personal use. Professionals have to worry about being sued because "The device made me gain weight!!!" and it would be hard to prove that it didn't.
 

lenora

Senior Member
Messages
4,960
Well, @MartinK, you've confirmed my beliefs also. That being that a mental ward isn't exactly the worst place in the world for us to end up. I've been in two, and each time I came out feeling OK, like I had climbed some mountain. They weren't horrible experiences at all....frightening a little, but not horribly so.

Congrats on finding such a forward thinking unit. I still suffer from severe insomnia....it comes and goes and who knows why? I can't say that I'd be anxious to try to sleep therapy at home until it's a little more proven. However, under the care of a specialist, I'm glad that you're going for it.

Often times anxiety causes us to magnify every symptom we have. That's a problem in my case, but it's now under control thanks to a well-known medication (that most people think is really bad). The bottom line is that we do what's best for our individual cases, we trust certain doctors and expect that we'll feel better and worse....at times. I wish you well. Yours, Lenora
 
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