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dancer65

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About dancer65

  • Rank
    Advanced Member
  • Birthday 02/26/1965

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  • Gender
    Female
  • Location
    uk
  • Interests
    ballet cooking

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  1. Yes my HR increases and I usually get low BP with spikes.
  2. I had restless leg syndrome every night when my POTS was at its worse thankfully as I have improved I only get it now on the bad days. It is hard to describe , it was a feeling of being very uncomfortable and having to move , I would eventually have to walk about but if I sat down it would start again. I personally didn't experience electrical shock feeling , I'm not a Dr but electrical shock feeling is often associated with trapped nerves. Sciatic nerve can cause a painful shock down the leg from hip to the ankle , Warm Epsom salt baths and stretching would help to ease it for a short while .
  3. Thanks pistol thats helpful . I am going to get in touch with my cardiologist to send some information to them as well. I have never been nervous for surgery and i have nine so far but after complications when i had my hysterectomy I'm pretty anxious ! Sure it wil be fine ☺
  4. Hi hope you all doing ok in the heat and humidity . Tore my hamstring last November but when the swelling and pain around my knee didn't subside I wen to Dr, turns out I have torn my menicus as well and I need surgery . Not been able to do my normal exercise regime which has set me back big time with symptons. I am not good with general anesthetic BP drops dangerously low, however I was not diagnosed with POTS and VVS when I had my last surgery ( you know the score i had been moaning for years ! Midodrine has raised my BP on the whole .I have been trying to research epidural as I believe this is most likely what they will want to use. Found some interesting papers which I will print and take with me. Any experiences including good and bad will be helpful ! I really want to be well informed before I see my surgeon. When I have a POTS attack I have both high and low bp and HR I also faint, tremors ,sight and cognitive issues. Any insights will be appreciated Thanks ! X
  5. I agree with Kim. I was self employed and tried to battle through, once I took three months off and had energy to take care of me I saw some improvements . I personally found the pressure of not feeling up to working and pushing through made me mentally drained and had a knock on effect of making my symptons worse. Be kind to yourself, take time for you we do tend to prioritise others in the family first but if we push ourselves too hard we are no good to anyone a hard lesson I have learnt. We had a marking system in our house relating to how bad I felt that day, 10 don't expect even an answer totally dysfunctional , 5 I may get a few chores done and I do have the energy for a conversation. My husband suggested it as I wouldn't admit how bad I felt and I was very over sensitive so got upset thinking he was critasizing me when he wasn't ! This also helped me to stop feeling guilty. Best wishes x
  6. Yes my BP use to go really low 60/ 40 even with florinef at maximum dose, always worse in the afternoons, evening and upon getting up or when I got tired. Now I am midodrine it's not as low.I am worse if I have overdone it or I don't move about enough, very confusing and has taken me 4 years to work out what the right amount of activity and rest is right for me ! I agree I think you should talk to her consultant , my cardio said he notices that florinef can stop being so helpful after taking it for a while for some patients. I hope you find something to help her low BP makes you feel dreadful.
  7. Congratulations ! Really sweet
  8. Hi Bombshell It was my GP who agreed for me to try it, he's been my Dr for over 25 years so he knows me well! He has said he only wants me to use it occasionally if it helps. My consultant is Dr Salukhe at the syncope unit at Royal Brompton London. I have only seen him once, he was very constructive and although it was not a long appointment NHS I didn't leave feeling I hadbeen rushed, my husband was with me so he spoke to both of us and he seemed very interested in what my husband had to say. I keep in contact with the nurses and if I have needed any advise they return your call in 24 hours but mostly the same day. I can ask to see Dr Salukhe again any time but as I am coping I haven't. I only waited 5 weeks to see him from my referral from GP I was pretty impressed with that . I can only speak as I found but I have been pleased with my treatment . He does also do private consultations and was recommended by STARS who he does speak for at their conferences.
  9. Pistol I have spent a lifetime trying to figure this all out ! Before the Internet research was very time consuming . I believe my trigger was an accumulation of physical and mental stress, antibiotics and boarder line anorexia. Every time I get a virus off goes the CFS symptons and then the POTS big time . I think the research into gut flora related to health probkems will become more important, I attended a very intresting seminar recently talk by a gastrenologist on current findings, it's an intresting topic .
  10. I think I am lucky my Dr agreed last week for me to try this as an occasional med for special occasions , my son is getting married and the journey sitting eating will likely end with me having to leave early . I plan to give this a try one day this week and see how it goes . Thanks for sharing your experiences .
  11. My cardiologist and GP are convinced my immune system is to blame . All my symptons started when I got alopecia (hereditory) like you I was plagued with ulcers, eye styes , boils and excema , this continued through out my early teens got a bit better and then again after glandular fever. ,My rheumatologist said he wouldn't bother checking bloods as often they come back normal when clearly there is a problem . Over the years I tried many different treatments to help my immune system but nothing has worked and I made the decision to not try anymore due to the risks of long time immune suppression . I hope you can get some answers to all of this Best wishes x
  12. I have fatigue that hit's me suddenly , I know I have to stop immediatly or a flare begins. I do pacing anyway which has lessoned the fatigue attacks but I still gave them mutiplied times daily they just don't last as long now. I don't know if you have sleep issues but once I got control of my insomnia things improved. I take antihistimes and my Dr changed me to one that makes you drowsy , along with sleep hygiene I have managed to turn my sleep pattern back to 7 hours apart from bathroom visits! I believe this has been had a huge impact on improvement in a number of symptons for me
  13. Hi Sorry you are struggling I remember thinking I would never get any better.I hope my story will help. A member here friended me and gave me advice and hope , I am so grateful to her. Five years ago I couldn't stand still at all I was too dizzy and I would faint , I was diagnosed by my GP by active stand test and put on florinef I was taking maximum dose . I improved slightly but BP always low still tachy and waited 20 months for TTT to confirm VVS and POTS it was a living h***. I finally was sent to Syncope unit at Royal Brompton London where I was changed to midodrine and had very good support from the syncope nurses. Five years on I am back to full time work , running my home again and a very limited social l life but I am grateful for my improvement. I am so in tune with my body that I know my limits and I now listen instead of pushing through and ending up in bed for a week ! I am lucky to have a wonderful husband and son with some very kind friends and I enjoy time with them when I have the energy . I have just about changed everything in my life ! I believe midodrine help me start the improving process, it rose my BP which made some symptons more bearable . I decided to only work to improve one sympton at a time and as that improved I tackled the next.I often found that it would have knock on effect of improving a different sympton that was a plus ! I kept notes on everything and over time could see what was working what wasn't. It has been a long hard journey and each day has it challenges but my attitude and approach to daily life has changed to alow me to be content . Pacing , diet, meditation, mindfulness, sleep hygiene and getting rid of as much stress as possible has all helped. I hope you feel beer soon
  14. Thank you to all of you for the hours you give up to help everyone . The forum and the newsletters have given me inspiration, advice bust most of all hope and that is what has helped me to cope and once again enjoy my new life style . Best wishes to everyone!
  15. Thanks for sharing , intresting although most of it is above my understanding !
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