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Everything posted by dancer65

  1. So sorry you are having a bad time after COVID I really do hope you can find something that helps . Steroids always make me hyper and then exhausted once I come off them , hopefully weaning slowly will cause as little disruption as possible . Take care 💗
  2. I use to, Sharp pain that would make me clutch my chest . Don’t get them now unless my BP is very low
  3. I find buscapan really helpful for my IBS. I will also take probiotics if I get a flare up. Certain foods affect my IBS but stress is my main trigger. I hope you feel better soon
  4. Pistol this is really interesting I believe my pots is influenced by chronic inflammation . Just started a pots flare two weeks ago all my auto immune diseases in full flare up along with swollen finger joints burning and crawling skin sensation which is only helped by ice packs . I am going to have a go at low histermine diet and Turmeric .
  5. Pistol so sorry you have been so ill . I hope you get better soon . Look after yourself hugs 🤗
  6. Hi sorry to read of your problems . I have never had anything like that , it sounds unpleasant to say the least .
  7. Yes my BP drops rapidly and then my HR drops too , I will usually faint if I’m not quick enough to lie down then afterwards both my BP and HR are all over the place , I just had to rest and concentrate on breathing and within a couple of hours it will settle down
  8. I have been on midrodine for 6 years, it has been a wonder drug for me .it took some time to see improvements that lasted and I have never had side effects . Hope all goes well for you
  9. My biggest crash was in 2014 , BP would run at 60/40 most of the time I felt dreadful all the time and was so dizzy I crawled around on my hands and knees ! I read about this and started at 1 minute at a time as often during as I could increasing the time as much as I could . It was tough but I believe it helped to literally get me back upright . After a while I found I could be upright as long as I was moving and not standing still . good luck !
  10. A few years ago I had bad reaction to flu jab but last year I was ok . I was worried about COVID jab and had two Pfizer jabs and no really bad reactions , in fact my CFS had actually improved a little bit.
  11. I hope you can get this sorted , take care
  12. It’s a shark , I went for the middle choice as it longer battery life it was reduced in the sale. It also has anti tangle brush so you don’t get hairs twisted in the brushes .
  13. Yes I get spikes in the night and I usually wake up . I thought it might be that a noise has disturbed me , I’m one of those people who jumps out their skin for very little reason !
  14. Thanks for posting the link !
  15. A trial is going ahead at Stanford for a cooling bracelet to try help regulate body temperature . if you want to read about it search Daily Mail cooling bracelet , POTS was mentioned , sounds interesting. sorry don’t know how to copy link on my phone !
  16. I find if my bp is low already eating just causes it to drop more . I find on those days yogurt and fruit works well or smoothies with coconut milk . The problem is because low bp makes me fatigued I have to fight the cravings for carbs and chocolate ! It can be frustrating when you are trying hard to help yourself
  17. Pistol I totally agree with your brother ! I have been using vacuum for a week . Very impressed how much easier life is , funny how a vacume can make a potsie so happy 🤣. It’s great not to get the cord and the cylinder stuck around furniture. The wand angle adjusts so I can clean under furniture without bending down, so no posture change problems It coverts to a hand held so stairs were really easy . Wish I had invested sooner, I have used it daily, our very elderly cat molts constantly .
  18. I have postprandial hypotension I find drinking water (often with a teaspoon of himalayian salt in it ) before eating helps, I also graze all day especially when I’m working or I’m useless ! Like others I avoid carbs and I drink coffee but only instant as too much ground coffee has adverse effects on me . I know if I have eaten too much as my stomach swells and is huge .
  19. Just invested in a good cordless vacume which was on offer .I have wanted one for a while for those quick clean ups and to save lugging a cylinder vacum daily . highly recommend for those who find this task difficult
  20. So sorry to hear you lost your adorable dog they are such a big part of the family . Sending hugs across the pond x
  21. Buscopan works best for me for stomach pain usually helps with cramps within 15 mins
  22. Cmpe37. The nurse told me when I stand up I should think I of something else such as planning dinner , apparently that distracts the brain and makes emptying better ! Who knew !! I was knicknamed looy at school as I was permantly visiting the Loo 🤣stress defiantly makes it worse . I feel lucky though I never had accident when fainting, thank goodness as I usually faint in the supermarket . just want to add it nice to have this discussion with you all , it’s always interesting to hear other people experiences.
  23. Thanks for all the replies. Pistol we talked at length about stress and the bladder, also the addrellin it was so lovely speaking to a nurse who really understood POTS , she totally understood the bad days have a huge effect on the urgency etc Cmpe37 I was told by my GP to stand up and move when I thought my bladder was empty then sit back down and try again and that way I empty properly. I did this on Tuesday when the nurse scanned my bladder and it showed I had emptied fully ! How sad I was rather pleased with myself 😀 cj 65 yeah it’s nice when things are positive I will enjoy it whilst it lasts !
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