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  1. Hi Rama, Haven't experienced this in current (and worst ever!) flare, but did in first two flares. So strange.
  2. I experience this when I'm going through a major flare (like now 😔). Usually wake in the middle of the night or early morning, heart starts racing followed closely by the shaking. If I'm up for too long and start feeling faint then more often than not I will also have the shakes afterwards. I've always assumed it was an adrenaline rush and allow my body to 'shake' it out. I haven't found anything that really helps, but staying as calm as possible usually makes them pass faster. This can be quite difficult as they can be really frightening and it's hard not to let thoughts race while in t
  3. Brain fog was by far my most bothersome and enduring symptom when I first developed POTS. While my other (typical POTS) symptoms began to improve after a year or so, the brain fog persisted for another 12 months. It was really difficult and I constantly felt like I was living in a dream-like state with jumbled thoughts. My POTS takes on a relapse-remitting pattern and the fog tends to correlate with the severity of a flare. I have had years between relapses of almost perfect health with no brain fog whatsoever. Unfortunately, I have not found anything but time and the improvement of
  4. Hi all, Just wondering if anyone has had the same result / success with compression calf sleeves as opposed to knee high socks? Thanks.
  5. Yes, my surges come and go to coincide with my flare ups. I am currently going through a small flare-up of symptoms at the moment, but have not experienced a surge. I can go for years without having one if I am having a good run. I too, have also said to my husband that it feels like you are about to die. They are so frightening. And always leave me feeling cold and drained. I commiserate with you - they are definitely not fun to go through.
  6. Yes. Usually big changes in heart rate in the morning (until I take my beta-blocker, re-hydrate and get moving around). Pretty stable throughout the day - sometimes only a 20 or 30 beat increase from sitting to standing, then it can go either way during the evenings. Sometimes I'm fine, sometimes just standing at the kitchen counter talking to my husband has my HR at 160. If it doesn't settle after 20 or 30 minutes of sitting, I may take another BB dose.
  7. My hearing goes, followed shortly by my vision fading out. Immediately laying down or squatting always reverses it. I've always put it down to a sudden drop in BP. It's pretty embarrassing when I have to squat every few steps while walking down the supermarket aisle!! 😂😭
  8. When I am in flare, (as I am now), I always experience one sided numbness. Always the left side, and to varying degrees. Sometimes it's my whole side (from muffled hearing and numb mouth all the way down to my leg) sometimes just my arm, other times my two smallest fingers, or sometimes just patches on my back and the back of my calf. I find that this totally disappears when I start feeling better. I can have years of not feeling it at all. I mentioned it to a cardio once, who was quite alarmed and sent me to see a very good MS specialist. He was able to exclude MS due to a lack of other
  9. Does anyone else suffer from cold urticaria? I have only experienced it a few times starting a little over a year ago, but now that it's winter here (Australia), it is happening more frequently. I'm usually very well rugged up with jackets, so it's only my legs that get affected. The hives will appear within 10 to 15 minutes of being outside, and disappear in around the same time once I go indoors and get warm. For those of you who suffer from this, is this yours generally presents itself? Is cold urticaria a symptom of MCAD? I have an appointment with an immunoligist in a fortnight, so it wil
  10. When I am in a relapse I also become very sensitive to odors. I always wear perfume, but during a flare I can only wear it on good days as it will make me feel sick and bring on a migraine. Even the tiniest drop of floor cleaner on the mop will make me feel ill.
  11. Was it a large and new type machine, or an older and smaller one? I can't go into the new ones - they make me feel awful - dizzy, nausea, tachy, sweating. I would think it was claustrophobia, but I do fine in the smaller and older machines. The tech tried explaining it to me - something about the newer machines being very powerful with strong magnetic waves or something...? I did some reading and also came across the same info that Naomi mentioned - inner ear fluid.
  12. I got completely better after my major POTS flare 5 years ago, and I am about 80% back to normal after this last relapse. I really have no idea why I relapsed, and no idea why I get better. I wish I knew so that I can prevent it from happening again and help myself get better when it does, but I'm starting to think it's all out of my control. I had two years pretty much symptom free between crashes. I have the feeling I will wax and wane in this manner for the rest of my life.
  13. Yes I get this too. It's not constant, and I only get it when I am in a relapse. It feels like someone has their hands around my neck.
  14. Ha, just answered this another post. I have no idea, and I wish I knew! It just went away. Slowly, over 2 years it just got better. Almost like whatever was wrong in my body healed itself or repaired whatever was wrong. I didn't question it too much - I was just grateful that it was gone and I was back to normal! Now that I'm in a relapse again, I have thought about what could have made it better, but I can't really think of anything.
  15. I wish I knew! I think I just got better with time last time. I got better over a two year period, so I never really noticed an improvement, just one day realised that I felt great and didn't even think about being sick anymore. As for this current relapse, I think it was a combination of stress, exercising too much and dieting. I was trying to lose weight for my sisters wedding (don't know why - wasn't even overweight in the first place!!), but I think that plus some other additional stress was just too much for my body to handle. The last specialist I saw was suprised that it had gone into r
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