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Everything posted by TCP

  1. Yes, get overheated, a red rash, flushing, breathlessness and pain. Tower fan on, dunking feet in a bowl of cold water, iced drinks and when over 80f I wear a cooling vest with ice packs in it. Also have mildly warm showers with two minutes of cool water at the end.
  2. Thanks so much for your reply, WinterSown. I am intrigued and looking into this!
  3. CBD relaxes the nerves and helps with anxiety. If you can get the sort with THC in it it's even better. In the UK you can only legally get 0.2% THC. I use a vaping pen, as CBD oil upsets my gut, and use a variety of CBD e-liquids. I am hoping to cut down on the Gabapentin and I hope in time the CBD can replace it. I used to use LDN in cream form.
  4. That's interesting - Thanks for posting! I have small fibre neuropathy all over my body and head.
  5. I have one for Secondary Adrenal Insufficiency because I need a shot of hydrocortisone if I go into shock or have been in an accident (I have Hypopituitarism from a pituitary tumour). I have some rubber bands for my wrists, a silver dog tag pendant and bracelet. I got the silver ones off eBay, very well engraved and good quality.
  6. I take 2,400mgs - 3,600mgs of Gabapentin per days and I have been taking them since 2007. You will get side-effects to begin with but see your doctor if you are concerned or call the pharmacist for advice. They do make you tired/sleepy but I've got used to them over the years. I am now taking CBD and that really helps my nervous system.
  7. Hi Everyone I have POTS, EDS, Small Fibre Neuropathy, Mast Cell/Histamine issues, Secondary Adrenal Insufficiency, Low Thyroid and all that goes with these remarkable conditions. I have a macroprolactinoma on the pituitary gland (2.5cm) and I've decided to proceed with surgery. Any tips regarding general anaesthetic would be gratefully received. The last surgery I had triggered (in part) POTS and SFN, so I am concerned about my damaged nerves, my BP and HR. This surgery is transsphenoidal and I will hopefully stay in the hospital for 4 days afterwards. My op and the recovery are a real c
  8. Hi, POTS UK suggest grade 3. I bought grades 2 and 3 off eBay. Make sure you follow the seller's instructions for measuring. I found the full leg too hot and uncomfortable in summer so opted for the long sock compression. In the end I found them too much, but many people get on okay with them.
  9. Yes, the neurologists haven't been great over here, but the Cardiologists who specialise in Electrophysiology have been very good. I know there are several excellent doctors specialising in EDS/POTS etc in London and some people get referred OK on the NHS and others pay to see them. My cardio is excellent and very open to ideas regarding causes and treatments etc.
  10. Well done! You sound as though you definitely getting there and I know from talking with other people that it takes time. You're doing the right thing and I wish you well. I know the mantra seems to be 'work on the core'. I would like more help with exercises as I am doing most of mine at home. I was supposed to go to physio for the EDS, but POTS hadn't been diagnosed then and I felt way too unwell. I need to step up and do more and I hope to after I have my pituitary tumour removed. Take care!
  11. That's great - I just wish there were more of them around.
  12. I found several neurologists useless about the dysautonomia and neuropathic pain. The cardiologist helped me, but only one out of the three I saw as he was also an electrophysiologist. Some people in the UK have seen dysautonomia specialists in London.
  13. Yes, the had the adrenalin rushed for years. It's worse when I'm anxious. I always wake up dizzy, sweaty and nauseated.
  14. Yes, the weird things that can be done with EDS joints! I do know of some people that cannot do any of these things on the Beighton Scale but have still been diagnosed with EDS as they have other features, like stretchy veins (I do that is why the blood pools), also Small Fibre Neuropathy (I have that), Mitral Valve problems, Autonomic Dysfunction, IBS, Gastroparesis and POTS etc. As I said they are all linked. Hypermobile EDS doesn't show in blood tests as there's no genetic marker (none found so far). Many people get diagnosed with arthritis as the joints seize up with age and others disloca
  15. Hi. I'm sorry to that you have so many things wrong with you from your comprehensive list. Don't dismiss any of that. I have the connective tissue disease Ehlers-Danlos type 3 the hypermobility kind. I had some dislocations in earlier years and then other aspects of health came up, like endometriosis, heavy periods, problems with my spine etc. After Epstein Barr Virus (as Glandular Fever) I got crippling chronic fatigue and that's when the autonomic nervous system started playing up. Decades later I suddenly developed POTS and Small Fibre Neuropathy. I didn't get diagnosed with EDS until I
  16. That's very true. I currently have a pituitary tumour and it's messed up all my hormones. Yikes!
  17. Both my TTT's were with Propranolol (1st) and Ivabradine, the second one....the cardio still diagnosed POTS as I was so symptomatic.
  18. Yes, initially my BP was in the low side and over time with meds it's increased.
  19. I've had this problem for years since I had EBV (as Glandular Fever which triggered the autonomic dysfunction which was misdiagnosed 8 years later as ME/CFS). If I exert myself I get sugar level drops and changes of temperature are also implicated for me and plenty of hand trembling. I generally have to eat something which is hard as I don't do sweet stuff or carbs, so nibble on some salty snack.
  20. Yes, that is right, in SFN some of the nerve endings are absent. Utter absence of these nerve fibres is indicative of advanced small fibre neuropathy. I have autonomic dysfunction, POTS and widespread SFN. I have permanent tachycardia.
  21. You've actually described Small Fibre Neuropathy which is present in people with Autonomic Dysfunction, Ehlers-Danlos, POTS etc. There is small fibre loss and it affects the organs and skin. There's a lot of information about this online and many research studies.
  22. I can't lie on my left side as it makes me feel very unwell, plus I have pelvic adhesions that side and a bent spine. Yes lying on the left side shifts stomach gas and moves bowel movements along. Congrats on the baby x
  23. I've had this for years and now have smaller meals and cut out sugary foods and reduced carbs. The gut makes the whole of the nervous system go haywire. I know I used to feel awful after eating. Smaller meals definitely and avoid gas generating foods.
  24. Hi! Hi! I ordered mine off eBay and they were surprisingly good. I bought from proper medical supply companies or chemists.
  25. I hope you are feeling better now? I often have issues with blood test results and being slightly anaemic. I have put it down to my losing some blood in my urine as every time I have a urine test there are traces of blood in it. Also I am on Gabapentin and in the blurb it says that blood test results can be affected by taking it.
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