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Posts posted by cherichair19

  1. Morning all. I was tested for autoimmune stuff in the past, but not for awhile. I see my drs next week so def will talks to them about it. Thanks for responses and suggestions. I’ve been tracking temps and seem to be temp spike in afternoons, and I’ve been normal in am. Perhaps exhaustion idk. This is all a lot of info and crazy! 

  2. Good Afternoon All,

    I have noticed more fatigue this week and have had a low grade fever of 99.0 mostly. No other s/s. I'm thinking that the low grade fever is a sign of exhaustion? I have had them for years on and off and usually lasts for a couple of days to a week or so. I wasn't diagnosed with everything until a year and a half a go.

    I have had to switch my job from a floor nurse to a school nurse this year and have found I am quite frustrated, sad, pissed off and so much more. I am loving the school nurse gig, the different pace is much better for me, especially with the lessening in the hours a day, less stress and the minimization of position changes.  But, I find any time that I talk to a friend or spend time with friends from my old job I leave the time the together or end a conversation so sad and mad. I am not usually a crier, but boy oh boy have I been lately.  

    I know that this is a transition period, with alot of new things going on, but anyone else have some of these frustrations before? 

    Sometimes I feel like I don't even know myself anymore, so much has changed in such a short period of time...I miss my old self.



  3. Hello all those that responded to me, sorry kinda fell of face of earth for a few months, had to take a internet break for a bit. @Pistol I meant with my Orthostatic being positive that my blood pressure would significantly drop with position changes, by 20+ points, which is not my norm. I usually had the opposite of most pots patients and would get hypertensive and not hypotensive. My gastroenterologist was trying to get me to continue to socially drink and keep up some previous behaviors, but my neurologist has spoken with her and told her that alcohol is a no no for my mcad and should avoid it. I now am seeing a different gastroenterologist who is familiar with pots and what not. But thank you for your post, all things help in this crazy experience. 

    @Steph2397 hi. I was diagnosed from the neurologist. Some of my labs were elevated and off, sorry can’t remember which ones off the top of my head — last year been nothing but tests. But I can tell you some symptoms is severe allergies, dizziness, ear ringing, and an internal itch I could never cure. Hope thay helps some. I take Allegra twice a day and Pepcid 40mg daily for the mcad. The Allegra helps keep the histamines at bay, as well as the double dose of Pepcid which is a h2 blocker. 

    @KiminOrlando I have been on cromolyn for about seven months now which helps with the pots and mcad, and recently started mestionin which has helped me with having more regular bm’s and having more of an appetite. I am in the process of   Attempting to increase that dosing, but has not been super easy. It causes a lot of painful gas. I go to mayo again next month to see my drs. 


    I recently took a trip trip to Hawaii and greatly paid for it. Contracted a virus, bad cough & high fever for five days. I found myself admitted for severe dehydration and low potassium. I had bad diarrhea from the fever and was not hungry....24 hours was all this stay was but the aftermath of exhaustion and all has me super bummed. Feel like I’m backwards again. Luckily my mom has been here and been a huge help. Thanks everyone for responding. 

  4. Hello all. I'm new here and newly diagnosed within this last year with a mast cell overproduction, POTS and gastroparesis.  Its been an interesting year of trial and error, symptom management, job switching and so much more. I have had a pretty rough summer, got diagnosed with gastroparesis, went on vacation and had a flare up of all flare ups. Ended up in hospital for five days, dry heaving and vomiting so bad I essentially was given phenergan and ativan ever 6 hours to keep me from vomiting and dry heaving. That ended up with me being on clear liquids for almost three weeks, losing 20# and severely physically deconditioning. Since then, its been an interesting ride. But, I have been able to eat most days, have a lot less pain and am tolerating liquids and sleeping better.  

    However, today I feel like poop! My HR is lower than norm -- in the 60's today and 70's with activity. My normal resting is 80's and activity 90's to low 100's.  My orthostatic blood pressures are positive with position change. I am flushed, feel palpitations, I'm dizzy and so tired and brain fog today.  I have been drinking alot of water and gatorade. I have not been hungry today. I am off work here at 1:15 and trying to make it until then.  It is not normal for me to have a low HR when I'm not feeling well.  My hr is still as mentioned above with a high dose of metoprolol.  Any suggestions or insight would be greatly appreciated. 

    Last night I had a glass of wine for the first time in four months, per recommendation of my gastroenterologist. She wants me to try and add some things back, but I felt so sick afterwards and I even sipped on one glass over multiple hours.  I was flush, hot, high hr (120's to 140's) and had a lot of abdomen pain and tightening.  I won't be drinking wine or alcohol.  



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