I desided long ago that it's good to be seen as is, and most people, if they want to can ask questions if they really cant figure out what your writeing, I'm just being real and my handicaps are real and I have managed what was very hard to do and that's research , I'm not perfect and don't pretend to be, the brain damage is real and I believe it is good to let people see that like it is, it doesn't mean I'm stupied, I never was.
I understand where you are coming from now. You are clearly pretty smart to understand these complex studies on MCAS, etc. So I was a bit perplexed as to why you were not writing more about them; but now I know your story and medical history, I completely understand why.
I hope you will stay on these forums, because I would like to share some ideas with you about brain repair.
I can really relate to your struggles, as I had significant brain damage from meningitis, though perhaps not quite as severe as yours. I lost the ability to recognize faces in the months that followed my meningitis, which was quite worrying. And I could not read even simple short paragraphs of text for many years. Ever since my meningitis in 2005, I have not read a single new book, due to the ADHD (and I used to be a voracious reader). The brain fog of ME/CFS also makes reading more difficult.
I have a folder on my computer about various drug and supplement treatments that may help repair brain damage. I'd like to talk about these with you, if you are interested. I research things like stroke damage, and the treatments used to try to heal this, in the hope that these treatments might also help help meningitis.
Have you tried any nootropic supplements ("smart drugs") for your cognitive difficulties? I found that piracetam 1000 mg daily works pretty well to improve memory, learning and concentration. You can buy piracetam
here,
here and
here.
(Unfortunately, if like me you live in the UK, supplements like piracetam are now harder to get hold of, due to the silly UK Psychoactive Substances Act, which bans all supplements or drugs that affect the mind.)
Did you experiment with any antihistamines and mast cell stabilizers to treat MCAS, and reduce mast cell activation? The sort of drugs used in MCAS are these:
H1 antihistamines — hydroxyzine, cetirizine
H2 antihistamines — ranitidine, famotidine
Mast cell stabilizers — NasalCrom, GastroCrom, ketotifen
when I post stuff it's on a note pad and I usually can cut and paste in that order and it goes in that order but for some reason now when I try to post here by cutting and pasteing it basicly gets backwards and all together and I have to try to cut and paste every line seperatly under the other and its very time consuming.
It might be easier for you if you write your post directly in the PR forum post box. The post post automatically saves what you write, so even if you leave it and come back the next day to continue writing, it will save what you have written so far.