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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. Try More than just medicine on u tube
  2. Simon Smalle he has done some videos on u tube about vagus nerve heart connection and IBS
  3. We were at Sanjay seminar at York this weekend for the second year , spoke about this with him , I have just made an appointment with my Dr as my son is getting married soon and I want to enjoy the day and not have to leave early. I would like to give a trial run though first ! Jiml yes he is a super Dr totally gets it, his college who also spoke, a gastrenologist also has an understanding of POTS.
  4. Nice work ! If only we could revamp our bodies so that they played a different tune that would be amazing 😁
  5. Sorry to read of your troubles ,sending best wishes x
  6. I wouldn't meet the criteria for ADD , since I first posted this my POTS and VVS is greatly improved and so has my clumsiness ! Brain fog and word finding continues to be a problem when i am fatugued . I am pleased you brought my posting back up it made me realise today how far I have come in three years , it prompted me to look back at my dairies I keep to help with DRs appointments It has been hard work to get where I am today, taking care of ourselves takes a lot of time, experimentation and energy . Stay strong everyone ! X
  7. I have joint pain its always worse at the end of the day when I'm tired, in the mornings I am really stiff look 90 untill I get moving ! I notice it is worse when I am on that downward trend , stress or illness can't exercise properly , BP goes lower ,pain and fatigue etc etc so i do think its related but I do also have ME fibro and JHS with problems of bursitis and soft tissue injuries , so i have never been sure which is causing what symptons. Infa red lamp, use of a nova sonic and Epsom salt baths dynamic stretching help ease the pain for me.
  8. Yes I do but it all my body , drives me nuts as I too have to keep getting up and move around ! Warmth helps me, I use hot water bottle or soak in Epsom salts both gives relief for a short while
  9. I have IBS which I believe is common in pots I have constipation, growling stomach and bloating . Really have to watch what I eat , veggies that have sulpher such as sprouts cauliflower really set me off . As does carbs wheat and sugars . I take midodrine 7.5 mg X3 or x4 times a day. I can lie down because it doesn't affect my BP , but I know it is a concern, you can rest with pillows to raise your body or use a recliner chair and check your BP is ok. I was told to check my supine bp regulary and it's never been a problem but I was very low 60/40 as I have improved it tends to be higher .I am one of the lucky ones I don't have any side effects from midodrine it really suits me and has improved my life no end ! Just remember it is important to keep your fluids up. Have you looked into mindfulness ? I practise it every day and has helped me enormously in so many different aspects of daily life. It made a huge difference in my insomnia which then helped the fatigued and it was a slow progress but gradually that had a knock on effect of improving the severity of symptons. Meditation and deep breathing help my addrellin rushes which cause my body tremors and feeling of nauseous. It was not a quick fix and takes dedication to stick at it, but for me it was worth the time and the effort in the long term.
  10. I love cooking ! That looks good , always nice to have pickles that you have made yourself taste so much better than bought IMO.
  11. I have both POTS and VVS before midodrine I use to have very large fluctuations in both BP and HR , nowadays the fluctuations are much smaller, I am use to them now but understand how scary they can be. I think pd8 suggestion to keep a log of reading and symptoms is a really good idea, I did and it was really helpful to see patterns . Strengthening the core and leg muscles is important just start slowly and build up gradually.
  12. I have episodes daily , I know I do too much very often but I need to work, I'm self employed and by the weekends I feel wiped out partially in the winter. Meditation and deep breathing exercises have helped me . I use cool packs on my neck ( my first sign of an episode is getting hot ) and drink a glass of cold water in one go.This usually stops me fainting and then I have to try and just get on with the numerous symptons that follow. I have learnt that sitting around for hours makes it all worse , so gentle moving around for 15 min's every hour helps me on my days off. This may not help you as we are all different but you need to experiment with different solutions. Learning your limits takes time and even then each day can be different so its not fool proof and i often misjudge it. Getting upset will only make it worse and keeping a positive attitude is important . Finding things you can do that you enjoy gives you a sense of achievement and can be relaxing , reading ,sewing ,painting etc and my favorite spending time with hubby just taking it easy . Deep breaths and think happy thoughts ☺
  13. I agree with all that has been said ! It's really hard to believe that things can get better but they can ! It takes time to learn your triggers, what helps, when not to keep pushing through and to listen to your body . I have made many lifestyle changes and along with midodrine I do pretty well theses days but it's not an easy journey. I remember been scared ,confused and actually questioning that all these symptons could be real ! As time has gone on I have learnt to read my symptons which I can ignore and which I have to take note of I haven't fainted or has bad presyncope in about a year now . Look after yourself x
  14. They also are associated with heart rhytham alliance and in their newsletter, I am a member , they have articles on heart rhythms Afib etc which is why I suggested them .I haven't been on their website in a long time . I have ME/CFS and recently I got diagnosed with fibro, I hope you find some help !
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