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  1. Hi Machair, Sorry to hear you are experiencing episodes of early morning panic. What you describe sounds similar to what I experience when in a flare. Wake, (sometimes multiple times a night) feeling short of breath and panicky, followed by uncontrollable shaking. Usually lasts ten to fifteen minutes. These episodes gradually disappear as I slowly get better. I don't experience them at all if I'm not in a flare (which could be years of feeling pretty normal and not POTSY). In the past, I've always slept with the bed flat, however with this last flare I found that raising the head of the bed helped with the severity of the night time episodes. I'm not sure what the recommended height is, but we've only raised ours a couple of inches and it seems to be enough. I also found that I was more likely to experience one if I slept flat on my back, as opposed to sleeping on my side. Also, along with keeping well hydrated, switching from table salt added to my water to salt/potassium tablets has made a huge difference. Lack of sleep will also exacerbate my symptoms. I hope you start feeling better soon.
  2. Thank you! Slowly building up my courage one positive post / story at a time! 😉
  3. No - labour and deliver were quite straightforward, albeit very long. I hadn't realised I had POTS at that stage, although I had symptoms for a year or two prior, just not enough to interfere with daily life.
  4. I've also taken metoprolol for years and never had a problem with it. It was the first med they tried for me while I was in hospital after my POTS came on (after childbirth). At the time I had no hesitation or fear of trying new meds so I quite happily took it and didn't even read up on any side effects. I take my dose every morning, but if I'm having a particularly bad day or a bad episode, I may take another dose in the afternoon / evening. Again, no issues with two doses. Unfortunately, I've since developed a fear of taking any new meds (I think this comes from not wanting to make a POTS flareup any worse than it currently is). It's hard, as I have been prescribed Midodrine a couple of times and have never had the nerve to take it, even though it could very well help. So I totally understand your apprehension with new drugs. I don't suffer from asthma, so cannot comment on that aspect.
  5. Sitting down will always result in a decrease in heart rate for me. The only time it won't is if I've just eaten a large meal or had a hot shower. In those instances, it will usually come down after half an hour or so.
  6. Hi Rama, Haven't experienced this in current (and worst ever!) flare, but did in first two flares. So strange.
  7. 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 the midst of one. I try to slow my breathing and take comfort in the thought that the episode will (hopefully) be over soon. I'm really sorry you are going through this. I know how awful and frightening it feels, especially during the middle of the night.
  8. 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 my POTS flare to help with the fog. I have tried in the past florinef, dihydroergotamine, salt loading and licorice tea and none of these have made much improvement. I also have a daily headache and head pressure when in a flare. It almost feels like the blood running through head is like concrete (my best description!), and gets worse when I need to concentrate or go outside and there is a lot of stimulation. I hope you you see some improvement in your symptoms soon.
  9. Hi all, Just wondering if anyone has had the same result / success with compression calf sleeves as opposed to knee high socks? Thanks.
  10. 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.
  11. 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.
  12. 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!! 😂😭
  13. 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 'typical' MS symptoms. If I am in a flare, I usually experience this numbness after being upright and walking around for too long, in the shower (always), when I am concentrating (especially if I am talking to someone) and within a few minutes of starting a meal. For some reason, it seems to be one of my most bothersome symptoms this time round. I hope you can get your numbness sorted and managed as quickly as you can...it's hard enough dealing with all the other POTS symptoms!
  14. 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 will definitely be something I will bring ip with her.
  15. 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.
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