Confused

[SunsetParadise49]

I thought I understood Dysautonomia and all of the types. But now I am extremely confused.

Yesterday, I had a follow up with my family doctor, I was dizzy and laying down on the table when he came in the room. My pulse was fast, like 107 I believe but it could have been faster. My bp wasn't all that bad for me. But, when I told him how extremely fatigued I've been and how badly my insomnia has been the past few nights he said I think there's something going on. Had an EKG done and my pulse was even higher then it was 10 minutes previously.

He just didn't like the way I looked and said he didn't want me falling on my face so he was going to admit me into the hospital!!! I was so shocked. I went in for a follow up, simply tell him about the fatigue and insomnia and the next thing I know I'm in the admitting office!

The internal medicine doctor saw me and asked if I had NCS. I told him that I do but that I also have POTS. He said you can't have both. With POTS your bp doesn't drop when you stand, that's NCS. Only your heart rate rises with POTS. I know the difference between the two but am confused by what he means!

When I stand I get dizzy, black out, and can pass out if I don't sit down. My heart rate increases when I stand up and takes forever to calm down.

Last night I also had the worst chest tightness that I have ever had. I was crying it hurt so bad. My mom said my eyes looked very glossy and my face was pink. My body felt so hot and it was hard to breathe with all of the tightness. They eventually gave me a spray of nitroglycerin (sp?) and with in a few minutes felt so much relief.

The internal medicine doctor told me that I have the equivalent pain of a heart attack patient!

Can you have both POTS and NCS? What do you think he was talking about? My mom thinks he meant that I have the full blown syndrome...but I'm not sure what that means.

I'm so confused! I was discharged two hours ago, increased my Midodrine to 10mg to 3 times a day and he said we may still even increase that since I can tolerate the tingliness better then other patients.

~Gwen

[pat57]

I see folks list both. As for me I'm NCS. I don't think I've ever had a HR near 107. 7 maybe --- Are pulse and HR the same thing?

I'm interested to see your replies.

[Ernie]

Hi,

I have both. If the doctor told you that it's not possible to have both then he does not know what he is talking about. My BP is all over the place.

[Darlene]

If I remember right Grubb told me NCS is a symptom of POTS.

[MightyMouse]

You can have both. - nina

[MomtoGiuliana]

I'll just add to the chorus--when I was first diagnosed with POTS my doctor gave me a handout from Johns Hopkins that stated that you can have either OR both POTS and NCS.

[flop]

Yep you can have both - I do.

The POTS part is the tachycardia on standing with loads of symptoms. POTS is diagnosed purely on HR response to being upright, your BP may fluctuate in either direction but there is nothing in the POTS diagnostic criteria that refers to BP.

NCS / neurocardiogenic syncope is the blackouts part. Some/most people with POTS never faint so they wouldn't have NCS. Syncope = blackout. NCS is a blackout caused by either one or a combination of slow HR or low BP.

HR = heart rate, the speed of the contractions of the heart / electrical activity in the heart.

Pulse rate = the speed of the pulses of blood flow in the arteries that you can feel by pressing on the wrist / neck.

As the terms are used here you can use HR / Pulse interchangably. Technically there is a difference as when the heart rate goes very fast it might not squeeze out enough blood to make a pulse wave that you can feel, in this case the HR on an ECG would be faster than the pulse rarte you could feel at the wrist (this is a very rare situation that you don't need to worry about, essentially HR = pulse).

I hope I haven't caused mass confusion!

Flop

[pearsjon]

i have both, wiht true othastaic intolerence. my bp and hr are all over the place. on my ttt it showed both. i have only passed out at night. i have the incresed hr upon standing and if i ignore that i will hve the low bp and low hr. i feel syncopal but have yet to pass out, at least during the day anyway. but i have been very close before.

i am still notmanaged well on the meds.

my doc is dys specialists. so he should know.

[deucykub]

Same here - both, and like firewoman, I don't faint. I think they call that Neurally Mediated/Neuro Cardiogenic Hypotension, which is a combined drastic drop in blood pressure and heart rate that leads to presyncope. If there is a full faint, the term seems to switch out "hypotension" with "syncope." Of course, if a person with either condition stayed standing, s/he would faint, which leads to a greater usage of the term "...syncope" vs. "...hypotension."

A lot of research says that patients with POTS do not have orthostatic hypotension, which is an immediate drop (within 3 minutes of standing?) of blood pressure (= or > 20 systolic or 10 diastolic). Maybe that is what your doctor was thinking of?

Some of the early research also claimed that the bp of a POTS patient goes up on upright tilt, which does not seem to really be the case. Mine stays steady or drops initially depending on the day and then eventually - CRASH.

I think there are a lot of doctors out there that know just enough about the ANS to be dangerous. They seem to be the ones that get us all confused just when we think we've gotten it pretty much figured out!

[SunsetParadise49]

Thank you everyone for your replies. You all explained it a lot better!!