What are the surprising treatments for severe CFS ？（NMDA？JAK inhibitor？）

[cfsJapan]

I am a Japanese university student suffering from CFS, brain fog, ADHD + mild ASD, and severe insomnia.

I developed CFS as a result of 3 years of chronic stress in my mid-teens (always in a state of fear and vigilance). I have had ADHD since childhood.

When I was tested, my cortisol levels were unusually low.

All common ADHD medications (methylphenidate-based) have had the opposite effect on me, and my hyperactivity and impulsivity have worsened significantly.

On the other hand, medications that act on norepinephrine have significantly improved my ADHD.

However, atomoxetine caused insomnia and I could only sleep 1-2 hours a day, and tricyclic antidepressants (especially those that act on norepinephrine) were effective for me, but I am very sensitive to the side effects of the medication, and even a very small amount can cause significant damage to my heart, so I had to stop taking them.

I am currently taking Prozac, which is very effective for my ADHD (I don't have much anxiety since I developed CFS, so I don't think that my ADHD is being alleviated by relieving anxiety).

However, even with Prozac, I wake up after 1-2 hours.

Are there any fundamental measures to address this?

The problem is that for some reason, even if I'm not taking these drugs, I often wake up after 1-2 hours recently. In particular, on days when I have no choice but to walk far for errands, I wake up after 1 hour, probably because of the brain inflammation caused by CFS. Even before COVID, I had a feeling that something was stuck in my brain, and it became very severe 1-2 days after walking far.

I have tried almost all common insomnia treatments (even if I take quite strong drugs such as Z drugs, I wake up after 1 hour. Of course, I also take trazodone).

In response to this,

①Are there any unexpected drugs that are effective for my type of insomnia? (Currently, I feel that NMDA antagonists have potential. I have tried almost all the normal drugs.)

②Until a certain point, SNRIs other than Prozac were extremely effective for my cfs and ADHD, but after 3 months they stopped working altogether. Or rather, they had the opposite effect of making me tired. Now only Prozac works. Why do you think this is?

③If there is a revolutionary method to fundamentally improve CFS and ADHD, I would like to take a gamble even if it is a small possibility, so please let me know. I don't mind if it is a method with risks. Regarding CFS, I feel that JAK inhibitors such as Rinvoq have potential. My life is already a mess, so I don't really care about the risks anymore.

④Are there any doctors, institutions, or information forums that are making cutting-edge attempts at cfs and ADHD?

For reference, other meds that worked for my CFS and ADHD:

① Almost all tricyclic antidepressants (especially Nortriptyline and Imipramine)

② Clonazepam

③ Prozac

④ Cymbalta, Desvenlafaxine, Trintellix (all three are now completely ineffective)

I'm 24 and my life feels like hell. Sorry for this long post. If anyone can give me some tips, I'd be very grateful.

My question is long, so even a partial answer would be greatly appreciated.

 

[Wayne]

③If there is a revolutionary method to fundamentally improve CFS and ADHDt

Hi @cfsJapan -- I believe there is, because I feel I've accomplished it. However, the methods I've found to be successful do not involve drugs. My own philosophy is that a drug oriented approach is not the way to go, so I hesitate to respond to your post, since that seems to be your focus.

If you're interested in some of my methods, do a search on this forum for some of my posts. Include search words such as mHBOT, recovery, energetic, polarity, methylene, enemas, Vitamin C, therapeutic, balancing the cortices, spinal flush, lymphatic massage, functional, thoracic, profilax, castor oil, etc. I'd be happy to answer any questions.

I sincerely believe that if more people with CFS tried some of my methods, they could also improve their situation, to some degree or another. I guess part of my own definition of "revolutionary" is "non-drug". BTW, I admire your spirit of inquiry (and courage), even though your orientation is different than mine. I think it's important to think creatively when trying to address our complex health issues.

 

[Treeman]

I find that melatonin helps me and my daughter. She also has chronic fatigue, adhd and autism.

I also recently started taking tofocitinib (I have diagnosed auto immunity) and have noticed a decrease in some symptoms (ibs-c) and an increase in energy. Good luck.

 

[Norwegianlad]

Have you looked into MCAS (Mast Cell Activation Syndrome)? Not that this is the cause of all your symptoms, but a lot of people with ME/CFS and Long Covid have these symptoms as well. When my MCAS symptoms get worse, I also have brain fog, ADHD, and severe insomnia.

 

[Wishful]

Humans have a 90 minute sleep cycle, at the end of which we normally almost wake up but not quite. I generally fully wake up every 90 minutes, but can fall asleep again after that. This started maybe year 20 of my ME. I did find that taking CLAs (conjugated linoleic acids) helped me sleep through one or more of those expected awakenings. It's most effective if I alternate canola and sunflower or safflower oil or if I take ruminant fat.

I also get insomnia if I do physical or cognitive exertion past 1:30 PM. Eating an egg in the afternoon or evening sometimes allows me to avoid the insomnia.

I'd rate these as surprising treatments for my sleep problems. I don't know if either would help anyone else, but it's simple/safe/cheap to try. It also point out that you shouldn't limit your search to pharmaceuticals or treatments that are commonly listed for sleep problems. I've never read of beef fat or eggs as sleep treatments, but they worked for me.