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merkat30

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About merkat30

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  1. I have mast cell activation syndrome I have tried antihistamines I have tried sodium cromoglaite which sent me into currant flare of very high blood pressure on standing high up 200 sometimes ๐Ÿ˜ฑ๐Ÿ˜ฑhigh heartrate .then it goes to low blood pressure on sitting laying down all the usual mast cell stuff lymph gland hurt everywhere my toilet is my new home hives flushing are my new fashion accessories bland boring few food diet ๐Ÿ˜”๐Ÿ˜”๐Ÿ˜” dont forget the swelling and endless epi pens muscle cramps dizziness migraines i also have a form dysautonomia that they cant pin point but do have appointment with new doctor in April. I guess what am trying say is I don't no if half this is of mast cell or pots. what medicine do they treat u with ?I still at early treatment but been going on for 7 nearly 8 years now mast cells stopped pot meds working i gradually got worse over years I actally have a appointment with a dr croom mast cell specialist next week been waiting month getting worse hope today is a a better day
  2. god yes I am in the uk we only have 319 confirmed cases so far it scary . I had the flu last year that was bad enough I housebound at moment so that no different to me I have two children so that a worry them bringing it in my little girl immune system horrible my son fight things of in days so no worry there .but yes it natural to worry when u all feel horrid and news making it sound like the plague basic hand washing should be conmen sense but it totally not is it . just hope everyone stays safe .
  3. ps ive tried the beater blockers calcium blockers bp meds the pots meds my mast cell seem to just attack them I end up more ill
  4. hi I just wondered if any of u had advice for me first all so sorry to see so many people suffering hope u all ok in this horrible stressful time across the world with the flu. I am 29 I have mast cell activation syndrome I am currently trying find a drug to help that . I also have pots or a form of dysautonomia they cant put label on me at mo anyways................... I have strange one for you so currently in a flare or something been going on months...my blood pressure on standing walking is in the very highs 178/182 this morning on standing then sitting....98/72 so then to add to that heartrate 169s this is typical day for me up down like roll coaster . just really wondering if anyone elsehere is suffering same going to go up read all again due eyes not focussing .sorry for post crashing!!!!! please forgive me hope u all stay safe ๐Ÿ˜ƒ๐Ÿ˜ƒ
  5. Hello i have some form dysautonomia i let you no when i know.... i am 28 been dealling with this since i 2012 i i am hoping seeing dr croom Nottingham will help me.able to carm my dysautonomia symptoms and mast cell if it is mast cell it costs 300 pound for hour app to see her so i thought lil info after would possibly help somone so watch this space wish me luck i need it ๐Ÿ˜ญ๐Ÿ˜ญ๐Ÿ˜ญfeeln lil anxiety over money side and cause so far away from my home i struggle get out most time for normal dentist(wisdom tooth got come out argh scared ) ussal doctor appointment and childrens appointments leave me ill for day for i use a wheelchair out the house i just want help if i can k x
  6. Hey just wondered if anyone has this happen alot on standing?pic attached 184/182 it goes down on sitting quickly so does my heartrate but making my life a misry and making basic ten time harder ...
  7. Hello any one seen dr croom for mcas ?
  8. 461 they said my blood level was at 9am is this good bad?
  9. He doesnt really no what to try with me now he helped one lass i new tho she alot better .
  10. thank u all for replying . I first will say sorry for misspelling of the tablets ha. ibravadene mestion midrodine beat blocker I find in a&e my blood pressure and my heartrate settles on the saline I am fighting to get it on weekly trail but they all terrorifed of giving it !! how did u get yours weekly I been going a&e in amblance or waiting six hours in a&e it very scary stressful but it helps when my heartrate in 160 plus get it to 100bpm I really need something as my quality of life is just getting worse and worse
  11. thank u all for replying . I have seen dr Julia newton and dr gupta I am looking for a doctor to help as don't seem to react good to anything they all send me backwards the drugs it really scary . I am in the north of uk
  12. Hello same other post really sorry for spam u all i just need no if anyone seen had help of this doctor for pots ?
  13. Anyone seen dr david richardson in ashington northumbland uk for pots? I am trying get new doc to help me anyone no this doctor
  14. Please could anyone tell me what help them with hyper pots thanks
  15. I need some help my currant doctor is struggling with me i need new one or extra one to help him help me any help name number would be sooo great i dont no what else to do google few try get app but couldnt get though
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