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About TCP

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  • Birthday September 12

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  1. TCP

    Severe bloating

    Hi Amyk I get the whole bloating stuff, discomfort etc. I found cutting down on carbs and big meals helps no end. I also drink lots of fluids. I also re-jigged my diet and am no dairy, gluten, processed foods or sugars. I am vegan anyway but eating well. A lot of people with dysautonomia get bloating, gastroparesis and IBS. Nausea is a tough one and I get it every morning and it seems to improve when I have eaten a bit. I think I have the histamine/mast cell issues and that means a lot of food trigger problems. I have found Yasmina Ykelenstam and her website and Facebook page helps with the diet and eating well to keep well. I don't know if any of this helps, but it might be worth cutting out the carbs to begin with such as bread, pasta, potatoes etc. Good luck!
  2. TCP

    "Outgrowing" Pots?

    Sorry to hijack! Ah! You have EDS, too. I was healthy until Epstein Barr gave me glandular fever. I then got ill with autonomic problems and fatigue. Then I seemed to improve a lot, but 20 years later developed POTS and Small Fibre Neuropathy. I have Mast Cell issues, too.
  3. TCP

    "Outgrowing" Pots?

    I am pleased to hear that you have had some good improvement, but I've yet to hear of any adult being completely cured of POTS, even ones who are living very full lives. I have noted that Deliciously Ella (Ella Woodward (Mills)), who has worked hard on her lifestyle enough to run a successful company in the UK, still has relapses when she gets stressed, tired and hasn't had time to exercise. I think for most people it is down to good management.
  4. TCP

    "Outgrowing" Pots?

    I had autonomic dysfunction after EBV in 1984, but the POTS symptoms appeared in 2007. I think some people can manage the symptoms through diet, exercise, relaxation and lifestyle changes but I haven't heard of anyone being fully cured without making the changes and maintaining them. Even then they still get flare-ups. My cardiologist says younger people respond better to meds, exercise, compressions stocking, raising the head of the bed, lots of fluids and salt etc. He said he finds less success with people with EDS and if you are older. I have heard of the hormone link and now that I have a pituitary tumour, I am more aware of what hormones can do to the body. I get the idea of POTS coming on when hormones are raging during pregnancy and adolescence. Years ago when I was diagnosed with ME/CFS (now I know it is autonomic dysfunction/POTS, EDS and Mast Cell) I had heard of many women who had developed ME/CFS after pregnancy while others found they were well during pregnancy and it flared again after the birth of their child. Personally, for me, my hormones went haywire after the Epstein Barr Virus and I had all sorts of hormone-related issues. Now with the tumour I have three hormone-related meds to make up for deficiencies or excesses. I would certainly look into Ehlers-Danlos type 3 and Mast Cell Activation/Histamine Intolerance as there is a link and it's taken me over 50 years to find out the link.
  5. I've always believed it is because of the drop in the blood/oxygen flow for brain health. I have noted that people who have improved through diet, upping fluid intake and exercise say that their brain fog improved too. PS< I've had it since 1984 and I am still pretty bright and also the fog comes and goes.
  6. TCP

    Verapamil side effects

    I tried Ivabradine and it upset my large bowel with niggle pain and cramps. I have ibs and gastroparesis. I'm now on beta-blocker Nebivolol and it's the first BB that hasn't upset me.
  7. TCP

    Anyone in the uk ?

    I'm in the UK and see Dr Hayat at University Hospital Coventry and Warwickshire. He is a cardiologist and electrophysiologist. He is a good listener and very open and honest. He also doesn't have a closed mind.
  8. Yes, I feel awful when bathing/showering. I use a stool to sit on and have the water just warm. I try not to stay in too long. Before I get out I run the water lukewarm or even colder to get my temperature down. I then carefully get out and dry myself gently. Sometimes I lie down for 20 minutes until my heart and BP settle down. I often shower before bed and that gives my body a chance to rest and regulate.
  9. TCP

    Anyone in the uk ?

    I currently have a pituitary tumour and I'm pondering the POTS/pituitary tumour link.
  10. TCP

    POTS & joint pains

    I've had joint issues for years and I know now that I have Ehlers-Danlos type 3, neuropathic pain and mast cell issues. All of these cause joint pains.
  11. UPDATE I have had more MRI's and field vision tests. I was put on Cabergoline last November as the endocrinologists say I have a macroprolactinoma. My prolactin levels were 3000 and three weeks after taking Cabergoline the levels came down to 11 which is normal. Unfortunately, the tumour hasn't shrunk, which can happen in cystic types and my field vision test showed some defects, this means I will most probably have surgery. My greatest concerns are because of my underlying health issues, the 20% - 50% chance of tumour recurrence and the recovery. I may also develop diabetes insipidus. I will talk to the neurosurgeon next month.
  12. TCP

    EDS test/diagnosis questions

    I diagnosed myself with EDS and POTS ahead of a rheumatologist and cardiologist confirmed later on. I'm guessing there isn't a genetic marker for EDS type III and so diagnosis is based on clinical signs and patient history. I asked my GP for referrals and she referred straight away. The rheumatologist went through the whole of the Beighton Score and checked all of my joints and I gave her a full history of my life and health issues. I scored 7/9 hich is high for someone my age. She recommended physiotherapy which I wasn't able to do because the POTS hadn't been treated at that time. I only saw the rheumatologist once. I also have IBS, gastroparesis, scoliosis, mast cell/histamine issues and whole body neuropathic pain. My cardiologist says he doesn't get such good results with patients who also have EDS. I am currently taking Nebivolol. I was going to see an immunologist about mast cell issues/histamine intolerance, but I now have a pituitary tumour and that has put the kibosh on things. Obviously EDS is for life and POTS seems to go hand in hand with it. My sister has some symptoms of EDS and some autonomic dysfunction. Three generations of the family have IBS which seems to be the link. The only people I have spoken to that seem to improve have overhauled their diet and exercised, which means strong core work to help balance the autonomic nervous system. I am hoping yoga will help once my pituitary surgery is done and dusted. I wish you well.
  13. TCP

    Hyper Pots & exercise

    Hi Jessica No, I won't have surgery and am on meds that might shrink it. Surgery would be last option. I've no idea if the tumour caused POTS, although there are people who have found a link.
  14. TCP

    POTS or inappropriate sinus tachycardia??

    I have secondary adrenal insufficiency and some websites about Adrenals/Addisons/Adrenal Crisis mention adrenal fatigue.
  15. TCP

    Hyper Pots & exercise

    Initially my cardio wanted me to do cardiovascular exercises. I wasn't so sure about this as I am pretty unwell and I've never really exercised. I started on the recumbent bike a few minutes a day and built up to an hour a day. My cardio wanted me to step it up, but as I didn't feel too well and the neuropathy and joint issues got worse. Then I found out I had a pituitary tumour and that has messed with my cortisol levels, so I cannot do any rigorous exercise. Now I do gentle stretching and I am trying to work on my core, as that is key to success with autonomic issues. I can do this without too much exertion. ~