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  2. Thank you all for posting/commenting. I was looking into weighted blankets after my most recent flare up so think I'm going to try it. I too have what I call "internal tremors" which are so hard to describe to others if you have not experienced them. I am also dealing the burning sensation after nightmares, tremors and waking up abruptly. I am determined to calm this flare up down because I had been doing really well up until the last few weeks so thank you for the advice!
  3. Today
  4. Yes I do. Standing up after sitting for a bit still gets me lightheaded and I have to be careful when bending down or crouching. I usually feel faint after doing so. @Elizaangelicayes! Like an elephant on my chest! Lol Update on ivabradine. It was covered by my insurance and it actually helping. My heart rate is about 10 bpm lower on average (I’m taking 2.5 mg) and I have much more stamina and less dizziness. It took a few days to adjust but overall the slightly lower heart rate has been a success. So @Pistol yes, it might have just been a case of letting my body adjust to the
  5. Yesterday
  6. Arw no way that horrid poor love hope u all start feel normal ish soon .just so scary it is.esp with the news at moment in UK I had stop watch read it instead .hope u feel better soon xx
  7. I have something similar, but not quite what you are talking about. My neck and shoulders will sound and feel like they are creaking like some old hinges or something. It is painful and I usually have to crack my neck after to relieve it. It's weird. I am curious that a lot of you guys know exactly what she is talking about. Good luck trying to figure it out
  8. I’ve had this condition since adolescence. I’m in my 40’s now. When I was in high school, I saw some dermatologists about the condition but to no avail. No medications or topical creams I’ve used, have ever helped. I drink lots of water every day. That doesn’t help me. I have noticed that in my case, the condition is worse in the colder months of the year (autumn & winter). In Spring/Summer, when its warm out, I eventually begin to sweat normally, without the pinprick sensation. I have found that consistent exercise, that causes me to sweat, will keep the issue at bay. However, if I stop e
  9. Decrease in pressure causes headaches apparently
  10. Mine sounds like something sizzling. I have found that it comes at the base of my skull and always when I am hungry. I’ve googled it before and other people mention a sizzling or crackling but none of them mentioned dysautonomia (which I have). Someone did mention that their husband has been laying in bed close to them and heard it so I tried recording it and caught it on recording. Still don’t know what it is though.
  11. I agree!!! I love growing plants, whether it is inside or in my gardens outside. I have many inside plants, my show piece being an Orchid that always blooms - currently with over 30 blooms!!!!! My husband purchased it years ago from a supermarket for mothers day, and after 6 months it looked dead. I was ready to throw it on the compost pile when I saw a tiny little new sprout ... I researched how to care for orchids, bought the proper soil and plant food and repotted it - 8 years later it is breathtakingly healthy and rewards us with constant blooms. I am so proud of it! I find that plan
  12. @dancer65 - still get that Urine test, just to make sure it is not a UTI! If there is blood in the urine but no bacteria it could be IC!
  13. Feel free to PM for sources of ear clips. Mine are black if that helps.
  14. I added ear clips to my TENS - even if you had to buy a CMS3000 like I have, the whole machine is only about $30.
  15. Pistol thanks for your help ! I will look into Prelief. Yes I’m 56 soon yikes it’s scary!!!
  16. Improving our home is smart way to deal with the boredom and loneliness. I suggest repainting to happier colors or adding indoor plants.
  17. @dancer65 - have you been checked for a UTI? Your symptoms could also be from that. A simple urine sample can detect that. UTI's can be very hard on many women, but especially on us "older" specimens ( I am 54 ). A UTI will cause a flare since it is so stressful on the body. I just had one and as soon as the fatigue and orthostatic intolerance started I had my urine checked and they put me on an antibiotic. My only symptoms were bladder spasms and the urge to empty my bladder - sometimes incompletely as with you. Your doctor can order one over the phone. The fact that you had blood in yo
  18. Hi pistol thanks for replying . I shouldn’t complain really I have been doing really well since lockdown has forced me not to work ! I can relate to your symptoms I have always been teased for the amount of times I need the bathroom since childhood . I was told after my hysterectomy I have a child size bladder so that doesn’t help . I don’t get any pain it’s just a weird feeling “out of control” and often return immediately to the bathroom as I feel I need to go again !! It’s also very intermittent. My last urine test was about 10 years ago when I was going to be tried on an a
  19. @dancer65 - yes, urinary symptoms are common in POTS. For myself I find that when I am over stimulated and my adrenaline runs high I pee all of the time, sometimes up to 1000 ml urine in one hour! I think that is what then leads to low volume and that triggers the ANS malfunctions. --- I also suffer from Interstitial cystitis, which also is a common condition in POTS. It causes many unpleasant symptoms, including bladder spasms, having to pee all the time but only a little each time, peeing but stopping before you are done ... what I did was go to a urologist who scoped my bladder and diagnose
  20. Last week
  21. I often get the urgent need to pee when my bladder is not full but recently I have been experiencing numbness half way through emptying my bladder , so much so I can’t feel when I have finished . This is new symptom for me could it be ralated to POTS? thanks for any input
  22. Thanks for sharing . After reading this I reallly would like to buy one of these to try , maybe once we get some normality back from this pandemic and our lockdowns and when I am working again . I did look up for practitioners offering treatment but they are all 3 hour drive away couldn’t cope with that once a week !
  23. Hi I am sorry this has left you in a flare low bp is so horrible ! Really appreciate you sharing your story, wishing you and your family a speedy recovery . xx
  24. Thank you @p8d Unfortunately, at $300+ with shipping, that device doesn't seem like something I could just buy and try on a whim. My mother used to work for a chiropractor (many of them in fact) and I have a home TENS unit, but I haven't been able to find ear clips that fit the unit.
  25. Thank you for posting this. I found the article and the DI conference presentations very interesting and hopeful. I was going to get a Parasym device https://www.parasym.co/parasym-device-transcutaneous-vagus-nerve-stimulation.html the next time my husband went to the UK (they don’t ship to the US) but covid hit 2 weeks before his trip. I did buy this in the US https://vagus.net/ but it only stays on for 15 minutes at a time and you can’t control output much and it irritates my skin. It might help a bit but I can’t wear it long enough to really know. I do know there has been discussion on here
  26. I am so sorry that you went through this and are now dealing with a severe flare. How frightening for all of you. I sincerely hope that you recover from the flare as quickly as possible. My sincere thanks for telling us about your experience.
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