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merkat30

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About merkat30

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  1. I understand sorry u have go though this I deal with this daily up and downs of my bp and heartrate like rollacoaster it scary nothing has helped so far tho this doesn't not in no way mean nothing will help u .I hope u feeling lil better mentally at least . U are strong u will get though this !! 💗 keep drinking plenty fluids and eating what u can rest pick good Netflix to watch and when u can walk around room holding walls for support to keep your legs going diconditioned.
  2. I have alot tests over years it coming up to 9 years of this this Oct just after birth my daughter 😪😪😪lots drug trials to nothing helped so far been to lot different specialists all try hard but seems I have to live with way it is at moment till can find sumit to help .
  3. Everytime I post u seem the same our illness seem be so alike pistol I talk to gp (uk) and he may told me of for standing he said next time happens don't stand up . He going try mme on amoxciln for what thinks is sinis infection I not try these sinse I was 13 am now 31 nearly so am very nervous about it due mast cell problems. I finally got in with neurologist in may for seizures . Jyoti. I was stood when it went to 173 then drop to 159 after while went 56 then hour so later felt even more funny so took it was 41 so I try stand which I no I should not of my instincts was pots mk go hig
  4. Hi knellie yes I do think sounds like could be maybe try book a appointment with a imuoligist they will do any relevant tests see if can help u hope u get some relief if u need help in uk msg me I have number to a private doctor who deals with mast cell activation syndrome
  5. so am currently suffering with some sort virus I tested for covid 2 times clear .I had horrible day yesterday on the morning my heart went 173 bpm and then half hour later dropped to low 50s bpm then on afternoon dropped to 41 bpm I fainted luckly my mother and son caught me . Anyone else experience low heart rate to I had those kind flares few times I just assumed cause my blood pressure so up and down my heart rate be same currently inbetween doctors so only seeing general practitioner for my pots who doesn't understand hyper pots which alot doctor I seen seem think is my problem . I also h
  6. What Is sleep 😭😭 I have hyper pots mast cell activation syndrome seizures and not fully diagnosed erthymilagia nightvtimes are horridous I also have the palpitations heart jump on falling to sleep it scare me it horrible .pain on night is horrible .
  7. Yes I feel I have be my own doctor most time my pots doctor told me cant do more so got no doctor for that mast cell activation syndrome doctor I haven't seen since march year ago .yes like they no nout about our condition then appear to no everything even tho I think personally we more risk deffo . I waiting see if safe with my mast cell activation syndrome as I react to everything !!
  8. The red rash comes on all day on of thinking was of mast cell activation syndrome but the the mottled I get I get shivers shakes with it usually low BP it horrible I cant get warm at all then suddenly after hours go burning hot !! . Yes cmep37 I also had that of my husband u look like corpse haha.
  9. Me I get this sooo horrible scare 💩out me it does !! Esp when got toothache and teeth clattering just evil . I agree with above weighted blanket doesn't take away but helps glad help you cmep37 . Also heat helps sometimes to or bag crisps
  10. My husband who not unwell got offered jab before me .... my sister who young 28 got offered nout up her my bro law who is also nothing wrong him also had it ...it joke I am housebound dysautonmia hyper pots mcas god no what else I haven't been offered it yet
  11. Ooh I get that it just horrid all over 😪😪😪
  12. Thanks cmep37 I will have look at ingredients online such horrid feeling it is isn't it
  13. this is normal thing for me that is just horrid I be sweating up soon I stand (hyper pots I have ) I took my temperature and it says am cold but I feel like i have a temperature I feel nauseated and shaking and generally really unwell just wondered if this is part of pots or my mast cell activation syndrome so hard to no which is culprit though any ideas to help this would be helpful go though so much t shirts at moment .
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