merkat30

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 .

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

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 😃😃

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 😭😭😭feeln 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

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 ...

Hello any one seen dr croom for mcas ?

461 they said my blood level was at 9am is this good bad?

He doesnt really no what to try with me now he helped one lass i new tho she alot better .

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

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

Hello same other post really sorry for spam u all i just need no if anyone seen had help of this doctor for pots ?

Anyone seen dr david richardson in ashington northumbland uk for pots? I am trying get new doc to help me anyone no this doctor

Please could anyone tell me what help them with hyper pots thanks

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

thank u all for yr replys and helpful info

Hey everyone I been n prestigmine (mestidon) for couple weeks I had to stop it as made my bp on sitting laying down very low my pots symptoms ten times worse my bp on standing has been going so high and my heartrate in the 158s nausea shakes shivers tremours vison probloms m insides seem to gone crazy my doctor wanting to try fudocortisone I don't want to neither does my gp doesn't either as my blood pressure is high on standing . feel like I stuck in limbo don't no what to do

So sorry to here u are struggling .it is soo hard it took me six years to get diagnosed with pots mine started on delivery table or even mildly before now think about it after four miscarriages .i go though it all again for my beautiful children but it to frustrating i am still housebound wheelchair out the house most days sofa or bed ...msg me if u want ask anything

This was my first symptom they said me/cfs ...but i dont no ..hope it not to bad today

How this going i wanting get one these . I want my legs bk 😣am so deconditioned

Pistol yes i am on antihistimines for it slowly upping the dose as we go ....and yes my doctor thinks i have mcad but only doctor is in Sheffield uk and wont see me as is out my catchment area one doc said i didnt i was covered in hives and having serve loose stools with bone pain temp flushing serve leg pain and sinus probloms nausea belly ache genrally cant eat out at moment belly swollon hands swollon ankle feet but hey this normal right....also react to chemicals meds smells wind rain sun ....genrally life ....

I do have a bp machine i keeo eye on it I hate the daily diorltye but gettn expert on downing that slime lol I will ask for smallest dose deffo as i have to with most things .

Thank u for your reply i am so nervous of which to try as mestion seem be big ooh going cause more loose stools that kind of take away point of taking it ..i really want to try the steriod i see my doctor in york tomorrow lil nervous also got a killer cold so been really hard just get up at moment had one after the other two children hard not to catch them . I also possibly all symptoms of mcad that doesnt help trying new meds so understandably nervous just want little bit aleast of a life for my children and husband thank for replying really helps to actally talk somone who understands it

Sorry to hear u had a hard time to i also lived in house with mold i used bleach of walls every other day they is connection with the mold and me/cfs to

Arw sorry u all had pretty bad time about it to i just always had this feeling that what caused mine😔

low iron can cause this and generally being ill think pots does as lot utube ppl I watch look like me