Hello folks. Posting here asking for some advice on behalf of my partner, who is in her 40s and we are based in the UK.
She has been diagnosed with Hypermobile EDS, as have our kids.
About 2 years ago she suffered from flank pain and ended up fainting in the bathroom. She was taken by ambulance to hospital and they couldn't figure out exactly what was wrong with her. She was in the hospital for about 5 days. her white blood cell count was off the charts at about 90,000mm3 and they weren't sure as to whether she had a kidney or bowel infection. her bowel was inflamed so they pumped her full of antibiotics and after seeing negative autoimmune tests, they discharged her.
She emerged from the hospital about 15lb lighter but about 2 weeks afterwards, she developed thunderclap headaches and the symptoms we now now of POTS / Orthostatic Hypotension. She couldn't stand up; her blood pressure would crash. We ended up seeing a Dr Adrian Morley-Davies who was fairly sympathetic and was familiar with POTS/EDS comorbidity and put her on Midodrine, Ivabradine and Fludrocortisone.
What followed were months of random symptoms such as flank pain, intolerance to extreme changes in temperature, fatigue, near-syncope episodes, gastroparesis and neuropathic pain.
Things have levelled out a touch now but she is still on the medication and I swear that the medication is just treating the symptoms and not the cause.
I've read on the various EDS forums that magnesium is good so the missus is on about 100mg a day, along with CoQ10. She is suggesting she has lots more energy and less joint paint on the magnesium. I have read the Driscoll Theory and she's trying Alpha-GPC. Seems ot have been sorting out the gastroparesis problem to be fair.
I was just wondering if there's anyone here who has suffered something similar and if it's worth pursuing any other avenues, such as Vitamin B1 / L-Carnitine etc or seeking out any specific specialists? we have spoken to Dr Valeria Iodoci who wants to run lots of Autonomic Tests - just wondering if anyone has had any experience in that area too? Just don't want to go through all of these tests and end up with the "Idiopathic POTS" diagnosis.
What I'd love is to get her off these meds.
thanks all