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dancer65

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About dancer65

  • Rank
    Advanced Member
  • Birthday 02/26/1965

Profile Information

  • Gender
    Female
  • Location
    uk
  • Interests
    ballet cooking

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1,719 profile views
  1. I really don’t know the answer to that I’m afraid . You could always ring York hospital and ask how their referrals work . I actually phone my consultant secretary to enquire about private consultation that’s when I found out I could be referred by NHS to see him directly . Remember you have to fight to get what you want with NHS !
  2. I have POTS and VVS , TTT confirmed both so that’s why I wanted to be referred there. I live in Wales and travelled to London to Royal Brompton . I was prescribed midodrine and has e msil and telephone contact with the Nurses as I increased the dose so I didn’t have to keep travelling Dr Gupta sees a lot of patients and has in interest in autonomic dysfunction , highly spoken of and does telephone consults as well. I’m not his patient but I have attended his seminars very kind patient man who really cares,. He is in York . I do advise you to contact stars they have a list of consultants and a knowledge of what areas they specialise in
  3. Hi I am in uk . Have you been in touch with STARS charity they have a helpline where you can talk to someone they are extremely knowledgeable snd may be able to point you in the right direction . Annually try hold seminars for patients and they have some excelllent Drs speaking . I am now a member but before I was they were so helpful when I was struggling to get diagnosis. I go to Royal Brompton syncope unit and they have a team of nurses that support you via e mail or telephone . My personal experience has been excellent treatment and support. I was referred at my request by my GP , I waited two months to see the consultant which is not long considering I waited over 18 months for TTT
  4. Defiantly ! Stormy weather gives me migraines . I have allergies which induce asthma and facial swelling, rashes etc if I don’t remember to take my antihistamines. Last year I was a bug magnet and their bites lasted weeks , they never use to like me so something has changed in my body I reckon.
  5. Thanks for sharing interesting article x
  6. That’s great news I am thrilled for you ! Hopefully this will be continue to you feeling better . Midodrine gave me energy to do more things , exercise more and therefore I was actually tired not just fatigued so my insomnia improved . I really hope this gives you the ability to break the cycle of symptoms so life is not such a fight xx
  7. Thanks for sharing , like you I didn’t understand all of it but it was still very interesting .
  8. Hi pistol cant offer any advice meds as I have low BP so just sending hugs t get better soon x
  9. Very cute !Lovely home you have made . Our cat was a stray whom adopted us 15 years ago . She use to be very much an out door cat but now she is getting on about 17 years old she is mainly indoors and is defiantly the boss , very clever at manipulating us to her every whim !
  10. Hi everyone ! Hope Santa brings you a present of better health ! Take care everyone enjoy the holidays x
  11. Yes as Pistol said it’s one extreme to the other . What has helped me was learning not to get annoyed and stressed about it , I use to get so angry at my body for misbehaving but it just exasperated my symptoms . During episodes I lie down and practise deep breathing relaxation exercises , this has taken a bit of practise to relax and not get distracted. My body temp often is low so I use a hot water bottle and tuck up in bed whilst I practise the above ! Hope you feel better !
  12. I was on florinef for a year it only helped a tiny bit even though I was increased to maximum dose , I piled on loads of weight . I started on 2.5 mg of midodrine and noticed improvements within two weeks but as I increased to 7.5 mg I stopped feeling dizzy when upright that was amazing ! sounds as though you are doing all the right things and learning to give in to the warning signs is the hardest I think , we are a determined bunch ! Really we just have to be 😀 Happy Christmas to you too x
  13. For me the midodrine has enabled me to be upright and gradually to build up exercise and be more active which in turn has helped me get to my Bp more stable. I think I also understand my limitations and I know I cannnot ignore the warning signs , I use to push through those signs and it never ended well . Midodrine certainly was no quick fix and even now I have regular crashes and have to cut down on my activity, it’s a balancing act I often misjudge . however 5 years ago I was not working and unable to do simple tasks , now I work full time and take care of my home ! I haven’t fainted in about two years I know as soon as I feel hot I need to stop, down a glass of ice cold water and lie down to stop the faint !So I believe it’s a combination of things that help but midodrine was and still is the mayor influence . I hope this makes sense not having a great day , brain fog !!
  14. Hi i teach dancing to adults and kids I take 7.5 mg x3 times a day so I time it that I take a dose 1 hour before I start my classes I also load up with electrolytes . This keeps me going for about 2 hours. I have VVS and POTS .
  15. I use to have Bowie posters as a kid , loved him! Yes slowly getting better like you fatigued and I am hoping I will feel enthusiast about Christmas soon !! enjoy your mince pies, yummy ! X
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