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New to Mast Cell Disease

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I was just diagnosed with POTS, and my doctor feels that it is from some Mast Cell Disorder, but it is not yet diagnosed through objective testing. It came on somewhat suddenly, in the last 3 months or so I dealt with odd intermittent symptoms, but it has been with me almost all of the time for the last 4 weeks. I notice, that when I eat certain foods, or ingest something,  I feel odd, itchy, and my skin when scratched gets disgraphia, and I feel horrible.

I have to wait 3 weeks to see my doctor. And, since I can not bear the wait, I was thinking of learning about histamine foods, and putting myself on an antihistamine before diagnosis, for I am fairly sure that I have a mast cell issue. Can anyone explain how you started taking antihistamines? What ones are good, what to avoid? Dosages? Should I start with children's dosages just to see how my body reacts? I wanted to wait for my doctor, but I am not sure that I can hold out that long.  Thank you...

0 likes, 5 replies

5 Replies

  • alex92803
    alex92803 Stags

    Posted

    Be careful as not all mast cell disorders are created equally, it is pretty horrible, have you had medication for the POTS? My symptoms seem to be triggered with cold and stress and avoidance works wonders. The antihistamines that I was prescribed made my tachycardia worse. Good luck let me know how it goes my appt wait time for a specialist was 6 months, so still haven't been seen.
    • Stags
      Stags alex92803

      Posted

      No seen yet.  I do not have en epipen yet.  Mast cell doctor in a month and allegist in 2 weeks.  Until then, I have to deal with flushing, my throat seems like it has a lump in out, possibly from GERD, and fear of new meads and foods since, this came on hard and fast.  I am still on Metoprolol Succinate, and I am not sure what to do, for my heart rate and yes, my blood pressure raises, especially the diastolic whenever I do anything over the last few days.  I was getting around a bit to do shopping for meals and cleaning, but now I am shut in.  I was hoping the histamine would stave off some effects of possible the metoprolol.  

      When you take a new medication, or food, what precautions do you use?   

      Do you know of any POTS/Mast Cell Disorder--still not sure what one I have people that reclaimed their old lives?  I pray that with treatment, that this is possible.  I am a professional, with many student loans, high overhead, and I thought I would work for the next 20 or so years.  Now, I am afraid of not only death, but of being at a home on disability for the rest of my life.  I pray, this is not the case.  Best of luck to you and thanks for the reply Alex.

       

    • alex92803
      alex92803 Stags

      Posted

      I have ehlers danlos syndrome and have had a he tilt table test which showed that you was positive for pots with q heart rate of 135bpm within 5 mins of standing, The EDS clinic recommended to my gp that I see someone re MCD but the referral was to a local dermatology clinic and they had never heard of MCD. So I am waiting to see someone in Nottingham. I am hoping to get my life back after 5 years of poor care. I find you have to check out who you are going to see before you see them. Make sure they know of your ailment and how to treat it before you waste your time and theirs! Let's keep in touch smile
  • alex92803
    alex92803 Stags

    Posted

    I also wanted to yell you, the dermatoligist prescribed some inappropriate drugs despite me telling them of my cardiac issues so be careful with the anti histamines. I do think antihistamine or low histamine food can't hurt. Have you kept a diary? I have found that my uticaria ,dermatographia, bone pain etc is not influenced much by foods I react to stress so arguing with my husband=rash, watching David Cameron on the news=rash, bad news= rash. I aso react to cold, naproxen, codine & tramadol.
  • Hakan19
    Hakan19 Stags

    Posted

    It's been 7 years but how are you now?

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