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TCP

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Everything posted by TCP

  1. I have neuropathy all over and I also get a tingling and then numbness on my left side. It feels weird. I have mentioned it to doctors over in the UK but no one seems interested. It happens to me when I am sitting or lying down. I have no idea what causes it.
  2. Hi everyone and many thanks for your replies. Sorry, I took so long to get back to you but I didn't get any notifications. I think I will try and get to talk to an anaesthetist and may request that I do so when I have my pre-op assessment next week. I have had 6 surgeries before but when I was classed as having ME/CFS and the health problems got worse after my last surgery in 2006. I am guessing that it will be a few weeks before the op and hoping it doesn't get cancelled. Thanks again!
  3. It can take on average 10 years to get a diagnosis of Mast Cell Activation or Histamine Intolerance. Yasmina Ykelenstam had many negative results over the years before new doctors said she'd got it. Even after fairly obvious reactions to skin prick tests for allergies she wasn't given a definite diagnosis. I know I have histamine issues and quite dramatic reactions to foods etc. I get super huge lumps after bites and yes, it does make POTS worse.
  4. In the heat I just wear my knickers and maybe the top sheet over my lower half. I'm too hot for any clothes. I have the window open or the fan on. I sometimes wear my cooling vest up until bedtime and the icepacks in it keep my abdomen cool for ages. If my feet are cool it helps and I use a freezing/cooling gel for that.
  5. I take sublingual B12 Methylcobalamin 1000µg. I also take a vitamin D for pain.
  6. Google it there's a lot of information about dunking your feet in cold water in order to cool down. I also have Small Fibre Neuropathy, so my feet burn all the time and placing them in cold water can bring real relief on a hot day. 'Your feet are another one of your body's quick-cooling spots. So relax, and soak your feet in a bowl or tub of cold water in order to cool down fast.'
  7. 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.
  8. Thanks so much for your reply, WinterSown. I am intrigued and looking into this!
  9. 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.
  10. That's interesting - Thanks for posting! I have small fibre neuropathy all over my body and head.
  11. 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.
  12. 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.
  13. 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 concern as I am a lot more unwell than I was 11 years ago. I am currently taking Gabapentin, Nebivolol, Hydrocortisone, Levothyroxine, Evorel HRT patch, Nortriptyline and Cabergoline. Many thanks in advance.
  14. 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.
  15. 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.
  16. 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!
  17. That's great - I just wish there were more of them around.
  18. 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.
  19. Yes, the had the adrenalin rushed for years. It's worse when I'm anxious. I always wake up dizzy, sweaty and nauseated.
  20. 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 dislocate all their lives. I haven't had a bad dislocation for years although my knees are wobbly. One friend never dislocated and she knows she has EDS now and her kids are hypermobile, have POTS symptoms, allergies (Mast Cell issues) and Autism (all are connected). My family all have allergies/intolerances and IBS and spine problems. I tell my cardio the links and he's very open to looking into other links and conditions. He is a good doctor and I know many have closed minds and only concentrate on their own field of expertise and aren't interested/knowledgeable in any other area. The neurologists had very closed minds and would not help much. Yes, it is bad luck and now I have a pituitary tumour which is just great! I clean eat now, no dairy, gluten, sugar and processed food. Low carb. I follow Yasmina Ykelenstam's advice on diet which is low histamine and helps with gut issues (mast Cell). Light exercise and good relaxation help me. I hope you can find some answers, too. All the best and keep us posted.
  21. 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 was 53 and POTS when I was 55! I am sure that I have Mast Cell and Histamine issues because of the intolerances to meds, food and toiletries/cleaning products. All of these conditions are linked. I also have a twisted spine, tilted pelvis and degeneration at lumbar cervical spine. I have a pronounced (non-fatty) hump on my upper spine. I have numerous other issues that are too many to list here. You have some mitral valve prolapse which can be linked to EDS and your blood vessel abnormality, maybe there's a link there, too? Did your rheumatologist examine you thoroughly? Did they check all of your joints according to the Beighton Scale?
  22. That's very true. I currently have a pituitary tumour and it's messed up all my hormones. Yikes!
  23. Both my TTT's were with Propranolol (1st) and Ivabradine, the second one....the cardio still diagnosed POTS as I was so symptomatic.
  24. Yes, initially my BP was in the low side and over time with meds it's increased.
  25. 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.
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