GI ATTACKS from Mastocytosis
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Does anyone else experience the piercing, cramping abdominal pain, nausea & diarrhea when degranulation occurs? It hits me so fast, I must carefully, but speedily get the the restroom! My lower back spasms while my GI track empties, leaving me extremely fatigued & deep aching bone pain in my back and hips.
Was curious how you handled these episodes or any all natural approaches to managing the symptoms. I have Rx meds, but love to learn new ways to combat the distress. Does anyone have a signal their body gives that helps you recognize that moment before your triggered? Thanks!!!
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StridAst Aphra
Posted
I have very similar symptoms. For me, I have kind of an odd feeling when I'm triggered that preceeds the diarrhea by a good 5-10 min. I can't really explain the feeling very well, it's kind of a cross between a feeling of unreality, and anxiety. This is usually followed withing a minute or two by the abdominal cramps. The diarrhea hits within 5-10 min. I usually experience massive soul crushing anxiety that starts within 15 min or so (feels like I'm about to lose everyone and everything I hold dear. "Feeling of impending doom" just doesn't quite describe it well enough).
The exhaustion and fatigue hit next, and I get this really weird symptom where it's like I start dreaming the instant my eyes are closed (even if I only close them for a couple seconds). Makes it hard for me to tell if I'm awake or asleep for a few hours.
As far as treating them,. Zantac, Zyrtec, and Montelukast serm to be enough to seriously blunt the symptoms. But I'm up to 4 Zyrtec per day so it's not a small amount that I'm prescribed to take. I've had 2 of those degranulation episodes since being put on all this in January, and both were perhaps 10-20% of normal severity of symptoms. Other then that, my strategy for dealing with these is stay within 15 seconds of a restroom for a few hours, get water or Powerade or something, grab a blanket for the chills, and a fan for the hot sweats, and proceed to curl into the fetal position for the few hours.
Aphra StridAst
Posted
Thank you for your reply! You made me think about that anxiety. I was raking leaves when it hit. It was about 10 minutes before it hit, that I felt very strange, like a bad intuition feeling. It was so strong, I stop what I was doing & began cleaning up. Which I know realize was anxiety!
I would love to be able to learn that moment, where I could disengage from something that triggers & not go into degranulation at all. Every gal's got a dream, right!
I'm taking Zyrtac bid, Zantac bid, Cromolyn Sodium tid, but not the Montelukast. My recent trip to Mayo, my GI doctor recommended to add the Montelukast, but my local hasn't added it yet. Do you feel that Montelukast has helped your symptoms? I already feel like a walking pharmacy with meds & emergency meds of Benadryl, inhaler, epi pen, nausea meds, etc.!
StridAst Aphra
Posted
I hear you on wishing to know the moment before it hits, so you can prevent it! As for the montelukast, I do think it helps, I would suggest giving it a try, as it's unlikely to hurt. My dermotographia seems to have faded much more on it. I no longer look like I've been whipped when I get out of the shower. (unless I'm in the middle of a bad flareup)
I also feel your pain on the walking pharmacy. lol toss in my own inhalers (one for asthma prevention, one for attacks, and a third one, swallowed instead of inhaled, for eosinophilic esophagitus), epi pen, the previously mentioned drugs, sumatriptan for the migraines, and a fluticasone propionate nasal spray. it tends to add up. on paper it sounds like I must be miserable, but everything's normal 95% of the time. *shrug* its the other 5% that I get annoyed with. lol And I'm not even on the mastocytosis side of things. MCAS is however quite similar.