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Everything posted by TCP

  1. I certainly don't think you are overreacting as there are signs that something is happening. I would arrange a specialist check-up as the sooner she is checked out the better. Don't leave it. Good luck!
  2. I get low iron and vitamin D. I am vegan so take sublingual vitamin B12 supplements. I have noted that many people seem to be low in these vitamins and minerals, especially those with health problems, including neurological ones. Plenty of friends diagnosed with MS, Fibro and ME/CFS have had low D, B12 and iron. Many people are deficient in magnesium, but most don't get any tests for that. It could be related to poor absorption or even Mast Cell/Histamine as that would interfere possibly. As regards D, many people who are sick don't go outside as much so maybe we need a healthy top-up with
  3. 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
  4. 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.
  5. 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.
  6. 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
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. I currently have a pituitary tumour and I'm pondering the POTS/pituitary tumour link.
  12. TCP


    Dr Sajad Hayat Consultant Cardiologist & Electrophysiologist University Hospitals Coventry & Warwickshire Coventry PoTS, Syncope, IST, cardiac arrhythmias, catheter ablation, implantation of pacemakers and cardiac defibrillators and also cardiac resynchronisation therapy
  13. 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.
  14. 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 w
  15. 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 sa
  16. 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.
  17. I have secondary adrenal insufficiency and some websites about Adrenals/Addisons/Adrenal Crisis mention adrenal fatigue.
  18. 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 t
  19. I'm sorry to hear about your daughter.I have heard about seizures with Chiari that is linked to EDS and POTS. I found this: https://www.epilepsydiagnosis.org/epilepsy-imitators.html
  20. I totally agree, as neurologists were pretty useless in my diagnoses. They either saw the problem as not in their field of expertise, i.e. cardiology or wanted to send me to the pain clinic.
  21. As above reply. That's what I thought. Check out Dr Diana Driscoll as she has fully researched this area.
  22. Constant stress is believed to cause adrenal fatigue and many websites dealing with the adrenals mention this as a condition.
  23. I have had adrenalin surges for ten years when my health nose-dived. I was getting sudden wakefulness, adrenalin surge, heart racing, dizziness and nausea. It would take a while for it to settle down each time. Then since I have had a pituitary tumour and I now have to have hydrocortisone as I am not producing the chemical to trigger adrenalin, I still get wakefulness but no adrenalin surge. It feels different and weird. I often wake up during dream-sleep or if I have been disturbed by a noise etc. I have read scholarly articles about wakefulness and sleep disorders in autonomic dysfunction.
  24. Hi. I am sorry to hear that you are having so many problems. I am also sorry to hear that the docs are saying that you have anxiety and that is causing your symptoms. Neurologists said to me that it was all psychological. I know different now. To me, it sounds like autonomic dysfunction and could well be POTS. A tilt-table test is the only way to check this out. There could also be some mast cell issues as some of your symptoms suggest that this is the case. The breathlessness, tachycardia and gastroparesis are all linked to autonomic dysfunction. You don't necessarily pass out with POTS, only
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