Other Heart problems - tired of being treated like a hypochondriac

[BlueBerry6999]

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'm glad that I'm not the only one! You've definitely helped me a lot!

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.

 

[BlueBerry6999]

Posting another comment because it seems I can't edit the other one...?

Just wanted to say I find it a bit ironic that I got a tracker to feel more relaxed and it's doing the opposite ^^
Since Friday my average heart rate has been going down by 2 bpm per day. From an average 58 it went down to an average 52 - which, considering that includes the moments I'm more active, is really quite low, isn't it? Now I feel anxious about that.

 

[BlueBerry6999]

Just had the cardiologist appointment and it was even more horrible than I thought it would be. I've been anxious about it for weeks, guess I knew they wouldn't take me seriously.
It started with an appointment my physician had scheduled with me right before the cardiologist appointment. Which I thought was weird from the start, since usually one schedules an appointment to discuss how to proceed AFTER letting a specialist do their checks. I wondered what that appointment was for from the start.
Then my doc called me in in a hurry, had technical difficulties and didn't remember what I was there for, then said "oh you have the cardiologist appointment right after? That doesn't leave us much time then" . No kidding.
Then instead of asking me how I felt, she did a very fast and almost rude recount of what SHE thinks is wrong with me, talking about me having breathing difficulties during work-out (which I never said I had as it's simply not true) Then she mentioned we'd established that I'd had these problems three years ago already (which isn't true either, as back then I had sleep apnea because of a medication I was taking), then she said we'd established that I was hyperventilating (which I only did during the EKG because I was in my bra and had three strangers stare at me). Then she proceeded to say that she'd recommended me breathing therapy three years ago already, and that I hadn't done that for some reason (because I didn't need it since my problems came from the medication).
She looked at me and was like, "you're not happy with what I said?"
And I tried to tell her why I hyperventilated, but she was already in a hurry to get me out of the room.
By the time I came to the cardiologist, I was nearly crying already.
The cardiologist did the ultrasound and said my heart was good, then questioned me about the issues, and kept suggesting things that aren't true.
Like, "maybe you took a break with working out, and now you're not as fit as you used to be". Uh, no. I've been working out once a week for 1,5 years continuously.
Then: "maybe you didn't eat enough?" Yes I did, I always make sure I'm fed.
"Maybe you didn't drink enough?" I drink 3 liters a day ffs.

At the end I just hurried out of there.
The doc mentioned something about a 48h EKG, but she didn't tell me if I needed to schedule an appointment for that or if they would contact me.

Anyway, I should have known my fears were justified. I don't know how they do that, but they set me back so far, make me feel like school girl being bullied.

 

[PerfectEmpire]

Ugh, I am so sorry! I wish I could say I was surprised, but I am not. So frustrating. I am so sorry that they didn't take accountability and do their job well or even adequately. It sounds like the many "waste of time" appointments I've been to. They don't have the expertise to know what they are dealing with, and so they try to basically guess at ways it might not be as bad as the patient says, or perhaps it's something simple that the patient can stop or start doing. These appointments are very damaging to patients. We need doctors to take a deep interest and figure out the issue or we need them to admit when they lack the time or expertise to treat us adequately.