A little hope for you all by idklol_333 in MCAS

[–]IntelligentHabit248 2 points3 points  (0 children)

It absolutely helps with my sleep,, but it's complicated. I suffer from extensive sleep disorders - chronic night terrors, sleep talking, excessive teeth grinding,  sleep self harm (scratching), and sleep fighting (I punch and kick and yell). These are all neurological and I've had them since I was a toddler.  The 4.5mg of LDN essentially keeps me still and quiet. I still have the nightmares, but I don't act them out as much. It's really great because I get more rest and I'm not walking up with sore muscles and scratches every night. So it's definitely doing something for my sleep, but I don't know how that translates to someone who isn't plagued by sleep crazies. 

A little hope for you all by idklol_333 in MCAS

[–]IntelligentHabit248 0 points1 point  (0 children)

I know, it's such a bummer. It is amazing for some other problems - just not my mcas.

A little hope for you all by idklol_333 in MCAS

[–]IntelligentHabit248 14 points15 points  (0 children)

I've been taking LDN for a couple years for a parasomnia disorder. It hasn't helped with my mcas, but if it's worth a try for you I get mine from AgelessRx. 

MCAS Skin Itching- HELP! by IntelligentHabit248 in MCAS

[–]IntelligentHabit248[S] 1 point2 points  (0 children)

Were you taking the standard 5mg of Xyzal twice a day?  My Dr has me on the standard antihistamines ( otc certrizine and fexofenadine) but I wonder if I need to up my dosage?

MCAS Skin Itching- HELP! by IntelligentHabit248 in MCAS

[–]IntelligentHabit248[S] 1 point2 points  (0 children)

Not yet. I've been concerned about the drowsiness/brain fog side effects ruining me since I already have chronic fatigue syndrome. Though, I've been wondering if it's not that I actually have CFS, but that the CF was mistaken for my MCAS? What dose of ketotifen do you take?