I'm glad that I'm not the only one! You've definitely helped me a lot!I am so glad you are seeing a cardiologist soon! Make sure that you read your own tilt test results (the numbers, not just the conclusions), because many patients in my support groups have doctors who for whatever reason do not understand the diagnostic criteria and told them the results were normal when they had POTS. I am not sure the source of the confusion but it seems to be that they confuse it with other forms of orthostatic intolerance, such as orthostatic hypotension, which it is not.
The fear of suffocating is something that I have experienced and it is very scary. Adrenaline dumps at night are a thing...so is air hunger. It's all stuff I've experienced (including waking up gasping for air), and I know how scary it can be, especially with no clear explanation!
One thing that has helped me is to have a pulse oximeter handy so that I can see that my oxygen is normal and that lets me know I am going to be okay. I keep that and a blood pressure monitor near my bed and check them. I also do acupressure for the vagus nerve (usually I resort to the area between thumb and index finger) which seems to help a lot while I wait for medicine to kick in. It is a good acupressure point for nausea.
I recently learned that which side we lay on when we sleep affects how noticeable heart palpitations are! Apparently lying on the right side is better for palpitations than lying on the left. But lying on the left is better for GERD. I have both and so it's a constant battle!
I hope that you get answers quickly and easily, and definitely would be interested in any updates!
I actually got my fitness tracker last friday and have been wearing it constantly, but in a way it has made me a bit more confused about the POTS because I do not fit the criteria of getting a pulse higher than 120 bpm when standing for 10 minutes, even though I get pins & needles in my feet when standing long, I get red feet and hands and I feel dizzy and feel my temples throb. But the fitness watch doesn't show any heart rate irregularities and my pulse is usually between 62 and 80 bpm. It does get up from an average 56 to 80 or so upon standing, but I'm not sure if that proves anything as it gets down from 80 rather quickly unless I'm moving around a lot.
What also confuses me is my resting heart rate, as it's very low, usually between 48 - 58 bpm. But when I google it it says that it's a sign of fitness and very good, unless one experiences dizziness, palpitations and/or nausea - all of which I have. But I'm still very fit also, I don't experience any problems when working out - only afterwards, which I find weird. I did cardio and my highest pulse was 172 bpm, but afterwards it came down very quickly.
I've been taking seroquel to sleep and stabilize my mood, but I'm not sure if it increases the hypoventilation or if I would have gotten that anyway. At least the app showed that last night for instance, my oxygen level went down to 94% and I had high variations in breathing.
I'm glad I got that on the app at least, so I can show it to my doctor.
I definitely recognize the difference in sleep position! I always feel like I can't breathe well when lying on my back. This is also when I usually get the hypoventilation. I generally prefer lying on my right side. If I remember correctly, it is also recommended for pregnant women to sleep on their right side.
I'm still rather confused about the whole thing because I have better days and worse, and so far I haven't been able to determine why.
Saturday for example I nearly fainted in the evening, but I wasn't even standing. I had eaten dinner, was sitting on the couch, talking calmly, when suddenly I noticed my mouth go dry, I got a weird taste in my mouth, then I noticed I had to breathe through my mouth because I felt like I wasn't getting enough oxygen. Then everything started swaying around me and I felt my pulse throbbing in my ears. I did have a lack of sleep the previous night, but apart from that I cannot understand why it happened, since I was sitting and fed. And the monitor didn't show anything, my pulse was my usual between 48 and 62.