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Everything posted by Lavender90

  1. 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 ...
  2. Hello any one seen dr croom for mcas ?
  3. 461 they said my blood level was at 9am is this good bad?
  4. He doesnt really no what to try with me now he helped one lass i new tho she alot better .
  5. 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
  6. 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
  7. Hello same other post really sorry for spam u all i just need no if anyone seen had help of this doctor for pots ?
  8. Anyone seen dr david richardson in ashington northumbland uk for pots? I am trying get new doc to help me anyone no this doctor
  9. Please could anyone tell me what help them with hyper pots thanks
  10. 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
  11. thank u all for yr replys and helpful info
  12. 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
  13. 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
  14. This was my first symptom they said me/cfs ...but i dont no ..hope it not to bad today
  15. How this going i wanting get one these . I want my legs bk 😣am so deconditioned
  16. 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 ....
  17. 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 .
  18. 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
  19. 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
  20. Arw sorry u all had pretty bad time about it to i just always had this feeling that what caused mine😔
  21. low iron can cause this and generally being ill think pots does as lot utube ppl I watch look like me
  22. finalllllly !!!!!!! I have been suffering this for last year it awful my hands are always puffy and sensitive my ankles to I thought it was water retentions or of the electrolyte I drink or pooling of blood it just horrid all the doctors ive asked not now what it of iv fluids do take it down as well I noticed big difference with my face swelling I could see my chin! I do hope somone knows what to do about this as it doesn't hurt as such but is making things very sore to wash hair type hold grip things
  23. hi me again just thought I post this …. I been looking see if anyone else got sick after a operation? mine started dam smack in middle of c section six years ago after my little girl was born I had what they called a heart murmur couldn't turn to the left felt nauseated dizzy I lost a lot blood tmi it was on my partners feet he was at my head 😲this didn't happen with my first csection I was awake for both they clean me up moved me a lot I was under the impression was meant not move u after spinal block ? all my problem's with my bp pressure my heartrate my extreme weakness started after this 22oct 2012 I lost a lot my freedom independent I cant go anywhere alone I struggle wash my face etc most days let alone look after my children as I should without help my mum and husband does anyone think this caused my pots? or is it me just being over thinking …. am in uk
  24. fludrocortisone or mestion that is the question? I have a terrible time with meds trials for my pots ive last six year I will be starting new one this week out these two which u think will help the most I have high bp and low high heartrate I drink two three litres water a day I take two sachet's of diorlyle a day {kills my stomach bladder} I have had loose non stop for year more after walking eating generally living I take fexofenadine 120 a day this seem to help if I take half a morning half a night I stay away most foods have very safe food diet its so depressing I miss my food! I have a lot pot attacks I get tremors shakes temperature can not control my heartrate goes really high so does my bp this on top joint pain extreme weakness flushing shortness breath cheast pain arm pain I always have nasty what feels like bone pain to all the time in my legs they are so weak .now that me probley missed thousand symptoms legs pooling headaches etc but u no all basic pot stuff anyway ….guess my questions are ...which do u think will help the most as ivibriane made me end up in hospital so really pinning all my cards on this 28going on 100 …..😟
  25. I see this doctor only doc that seem to cared so far I will ask about this tablet for the other forum members I am going to try fludrocortine … or menstion terrible spelling sorry . Which would u all recommend I also have terrible meds tolerance which don't help the matters 🤐😥
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