u/Melodic_Frame7421

So I finally managed to get a 24h pressure monitor and it came back with nyctoemeral excursion abolished and low blood pressure.

I was like "wow maybe this time my cardio will take me seriously and give me some treatment". Especially since I wake up destroyed some days, as if I haven't slept. And I often get tired during the day, like fatigued with very low activity. And my legs are getting worse, too heavy and painful when I stand for long, even if walking. And I might get blurred vision when I stand up and need to sit down again and stand slowly.

You know what? That guy dismissed me with a "your heart is healthier than an A League soccer player's heart" just because my 24h ECG was great, perfectly clean. He said that my 24h pressure monitor is also good and that nyctoemeral excursion abolished is only relevant if you have high blood pressure, which I don't have, so I'm healthy.

I also tried to ask if I might have sleep apnea but he said it's impossible since I'm not fat and I don't have those big breaths like suffocating breaths at night (confirmed by my partner).

I even asked for compression socks, I got a pair on Amazon and I feel better but not great. They are not my right size and/or model. I felt like I was asking for stuff which is not for someone as healthy as I am, and I was given this piece of paper where they recommend water and salt and compression socks to people with syncope (which I don't have).

I was not even recommended to take magnesium or electrolytes, he said only people with low blood magnesium confirmed by blood tests should take it.

Bastically it was me trying to ask questions and make hypoteses as to why I don't feel well, just for him to dismiss each and every one. I was sent home with no therapy, no prescriptions, no recommendations, nothing. Like you would do with an healthy person.

Yesterday I freaked out as I'm tired of not being believed and being dismissed with no treatment. I've booked an appointment with a dysautonomia specialist who is EDS-aware.

Do you think I could get something out of that, or will it be just another waste of money and time and hope? Did a dysautonomia diagnosis come with some good treatment for you?

If you do have a dysautonomia diagnosis and treatment, could you please tell me what were your symptoms and which treatment were you given? Does it work? Is it worthy to keep on changing doctors until someone believes you and decides to treat you?

I did it all for the hEDS diagnosis and I don't even have a treatment, just vit C and PT. I don't need just another piece of paper, I need treatment to feel better and function like a normal human being.

Adding the medical trauma alert in the subject as it does not let me pick two flairs, hope it's ok.

So I finally managed to get a 24h pressure monitor and it came back with nyctoemeral excursion abolished and low blood pressure.

I was like "wow maybe this time my cardio will take me seriously and give me some treatment". Especially since I wake up destroyed some days, as if I haven't slept. And I often get tired during the day, like fatigued with very low activity. And my legs are getting worse, too heavy and painful when I stand for long, even if walking. And I might get blurred vision when I stand up and need to sit down again and stand slowly.

You know what? That guy dismissed me with a "your heart is healthier than an A League soccer player's heart" just because my 24h ECG was great, perfectly clean. He said that my 24h pressure monitor is also good and that nyctoemeral excursion abolished is only relevant if you have high blood pressure, which I don't have, so I'm healthy.

I also tried to ask if I might have sleep apnea but he said it's impossible since I'm not fat and I don't have those big breaths like suffocating breaths at night (confirmed by my partner).

I even asked for compression socks, I got a pair on Amazon and I feel better but not great. They are not my right size and/or model. I felt like I was asking for stuff which is not for someone as healthy as I am, and I was given this piece of paper where they recommend water and salt and compression socks to people with syncope (which I don't have).

I was not even recommended to take magnesium or electrolytes, he said only people with low blood magnesium confirmed by blood tests should take it.

Now I looked up on the internet for a doctor who knows dysautonomia and is EDS-aware and I'm tempted to go see her. Here we don't need referrals and stuff, you just pay and see who you want.

Do you think I could get something out of that, or will it be just another waste of money and time and hope? Did a dysautonomia diagnosis come with some good treatment for you?

If you do have a dysautonomia diagnosis and treatment, could you please tell me what were your symptoms and which treatment were you given? Does it work? Is it worthy to keep on changing doctors until someone believes you and decides to treat you?

I did it all for the hEDS diagnosis and I don't even have a treatment, just vit C and PT. I don't need just another piece of paper, I need treatment to feel better and function like a normal human being.