For anyone suffering from IH
Hi all,
Here is something you can try for your Idiopathic Hypersomnia. This is dangerous but I know what it is like to live with this so it is up to you. You must test your tolerance to the medication first with the 1 week trial as Steven Johnson may be an issue for you, Antibiotic Resistance is a real threat long term so don't exceed the time here.
Clarithromycin 125mg for 1 week.
Clarithromycin 250mg for 4 weeks.
Clarithromycin 500mg for 4 weeks.
Clarithromycin 750mg for UPTO 2 weeks
Once you start feeling better then stop suddenly without tapering and do not continue beyond the 2 months I've done here as you will be on the medication too long. You should be getting a result within those final 2 weeks if not before.
750mg is the dosage that worked for me, it is above the official safe limit but that is the dose I responded to. I hope it helps someone.
Edit: This is purely acetodal but I believe the high dose with an instant withdrawl caused my body to panic and make the change.
The use of this medication is based on this research https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4732573/
I have modified the original researches method of applying Clarithromycin, I believe they are basing their dosing protocol off of the standard dosing of Clarithromycin for infection, their original protocol did not fully work for me so I made one that was more aggressive.
I have lived with Excessive Daytime Sleepiness for 16 years now(50% of my life) I managed to reduce most of my tiredness now, my doctor was floored when I explained it to him, I can now go an entire day and only need to sit down to recharge, if I've had a bad nights sleep a one hour nap will completely recharge me.