Jump to content

mattyb_uk

Members
  • Posts

    4
  • Joined

  • Last visited

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

mattyb_uk's Achievements

Newbie

Newbie (1/14)

  • Week One Done Rare
  • One Month Later Rare
  • First Post Rare
  • Conversation Starter Rare

Recent Badges

0

Reputation

  1. Hey @JBG- my partner has EDS and developed POTS. She is on Ivabradine, Midodrine and Fludrocortisone to mitigate for the POTS, prescribed by a cardiac doctor. Supplements wise, what has helped her the most is magnesium glycinate for the joint pain and sleep - definite marked improvement there almost in a week. She's on CoQ10 also for heart health. We have been trying alpha-gpc to try and improve her body/brain for the gastroparesis and constipation and it seems to be working too. going to try her on some thiamine next , apparently meant to help. As pistols says, defo best to have a good physician. What has helped loads is time. symptoms have levelled out lots. What have you tried so far?
  2. Oh wow. Yeah. The flank pain basically is where this all started. She had an episode in 2017 where she fainted and thought she had a fit and had severe flank pain. She didn't get admitted to hospital. She had follow up neurological tests, kidney scans and all sorts but it showed nothing up. Then in 2020 was when the flank pain returned and she fainted and was hospitalised and then the POTS occurred. I have never heard of LPHS. At first we were wondering whether she had Lupus but she tested negative for it. She has tested positive for AnAs in her blood but they have never been able to find anything. She is HLA-B27 positive though. She does have occasional urgency and the feeling of an infection but it seems to subside. That extreme flank pain is really what I dread as it generally means that we have a problem! The only thing that seemed to work when she was at her worst in hospital was diazepam! Will go do some googling for LPHS. Thanks for the nudge in that direction!
  3. @MomtoGiulianaand @Pistol, thanks for the lovely words, the warm welcome and the advice. @MomtoGiuliana - interesting that you mention the flank pain. My missus since 2017 (before her 2020 collapse) had been into the doctor's on and off complaining of suspected potential infections and they would always find leucocytes in the Urine but wouldn't be able to culture anything. It was bizarre - we ended up going to see a specialist who found some suspect nephritis in the kidneys but nothing further. I wondered whether there were inflammatory mechanisms at play here but we never got anywhere. The only thing that works for her is Naproxen to relive the pain. Nothing else touches it. She suspected that something in Eggs would cause it as it seemed to coincide with her eating boiled eggs! Completely understand on the "flare up" too and waxing and waning of symptoms - I started to wonder if it was diet that was impacting this but again, we never have explored this and would love to also. Also, wholly appreciate getting her off the meds may be a long shot / and/or unreasonable. @pistol , funnily enough that paper you send over is co-authored by Valeria Iodice, consultant who has recommended a battery of tests for her. Guess we should go for it and get tested!
  4. 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
×
×
  • Create New...