I also cannot continually take Montelukast because if I keep taking pieces of it, usually by day 2 or 3 of taking pieces here and there, even tho I am much better, I begin feeling the mental effects: Feeling extremely angry, restless, and "out of my mind".
I'm dying from malnutrition from MCAS, and not sure what to do. I have tremors from lack of vitamins now, and I have PEG-J, but when Montelukast wears off, I have to turn my feed down, because I react to my own feed!
I also can't swallow food when Montelukast wears off - I can only eat 3 crackers as 'food' as it is - nothing else works. Hard to get down any water. When it wears off I feel fire through my neck, chest arms and hands even from drinking pure water, sweating, sometimes get shaking even if I am totally calm. It gets worse with my feed, it gets infinitely worse until I become anaphylactic in the presence of known-true allergens such as dog dander, like for example if I'm at home with feed on I just feel shitty, then get into the car with dog dander and in 1 hr my whole body on fire, sweating, throat feeling like shards of glass, swollen eyes despite changing nothing except environment.
At the hospital at my worst point I became anaphylactic due to a shot of dextrose, something I am NOT allergic to, had fevers, my IV swelled and had to be removed, hives on my hands without even touching allergen (someone walked in with strong lavender perfume and my hands just broke out in hives randomly, I have a severe known-true allergy to lavender which has never ever given me hives unless I got liquid perfume on my skin) and all IVs caused severe fire/burning despite my not having any allergy to lactated ringers, saline, or dextrose-saline / dextrose-lactated ringers (tried both).
I also have to use Ostomy bags. I have reacted with skin glue allergy to Hollister, Coloplast and Convatec, least reaction to Hollister, I have already had to cover the bags with Flonase but it is not enough and I react in my whole body making everything worse.
My mast cells respond 0 to antihistamines. I am allergic to pepcid, tried Zyrtec and Claritin and reacted mentally (very angry feeling, restless) but no reduction in symptoms and also reacted to the liquid itself (the ingredients like the flavor and sugar alcohols, which I am not allergic to!). Tried Allegra, no mental effects but no effects at all except reacting to the liquid mildly. Tried Cromolyn, horrible reaction within 1 hr that hospitalized me for 10 days...
Hospitals have no idea how to treat. I can't have steroids because of mental side effects. I can't have Benadryl or Hydroxyzine or first gen antihistamines due to mental side effects. Singulair works, but gives me mental side effects from just pieces of a 5mg over 24 hrs. I have been described in the past as a 'see saw' when 'everyone else is a board', it has always been a struggle, as there is no known way to calm me down when these drugs hype me up and I simply had no need of them in the past.
I'm not even sure what to ask for from an allergist, except maybe Dupixent or Olumiant. Any ideas? I don't want to die... I don't normally need to rely solely on my PEG-J, and I have never had a reaction to my feed before. I am having so much "reaction" from my body.
Worst part. Blood tests come back totally average of course except every vitamin, protein and electrolyte showing severe malnutrition. Triptase is low 2.2. I have even had Psych evals, succeeding both with the psychs saying "This is medical, not mental, and they are seriously ill and need help!" but still, Hospital does not have any allergists or immunologists, and I fear I will soon return to them due to collapsing from low electrolytes or low B vitamins, as I cannot force them down and now moved back to my parents so they can discover me if I collapse so I won't go in a coma at my house alone...
I am on Medicaid. I can't go out of state. There's no hospitals in SC with allergists. I tried MUSC, they sucked so bad... (no offense) Beginning to fear for my life as I was quite unhealthy before this. This was brought on by Opiates legally used for severe pain control, specifically Hydracodone and Oxycodone, after subtotal Colectomy was performed, and also ate chocolate (another allergy, stupid me)...
Please stay safe and maybe keep those drugs in your mind, if you are offered them there is better safer choices for MCAS... it could save your life.