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Seeing cardiologist about OI: what should I tell/ask him?

Sasha

Fine, thank you
Messages
17,863
Location
UK
This will be the second cardiologist I've seen and I'm hoping he might either know something about delayed OI (or NMH), as opposed to POTS.

What should I be telling him about delayed OI in PWME, specifically? If anything?

What tests should I be asking for?

Anything else I should be telling/asking him about?
 

anciendaze

Senior Member
Messages
1,841
I think it is important to make sure you have ruled out atrial fibrillation. The little I recall from your posts does not suggest that, but that is one possible cause of spells of weakness where you have trouble standing. If you have any evidence that pulse pressure undergoes a decline after the first minute or two standing, that might also be important to mention. Take a general approach about episodic problems like AF, arrhythmias or dysautonomia rather than insisting you have a particular diagnosis.

Unfortunately, in my experience, both POTS and NMH are somebody else's problem in the eyes of cardiologists. If he/she does tell you this is someone else's problem, see if you can get some indication of an appropriate referral.

Also wishing you luck!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Thanks, @anciendaze. I'd consider it a good outcome if the guy tells me he doesn't know anything about this but can point me at someone who does. He has an interest in POTS but that doesn't seem to go along with knowing about NMH.

I don't think I have AF - my OI isn't episodic - it's constant.

Thanks for wishing me luck!
 

SOC

Senior Member
Messages
7,849
What should I be telling him about delayed OI in PWME, specifically? If anything?
There's some info in the ME/CFS Primer on cardiovascular issues and treatments. See sections 3:5 and 5:8.

You might want to ask for a TTT, which is a standard test for OI. Since low blood volume seems to be fairly common in ME/CFS, you might want to ask about that. Some docs will prescribe fludrocortisone or desmopressin based on symptoms, but others want to test aldosterone and/or vasopressin first.

Are you sure you want to mention ME/CFS to the cardiologist given the way some doctors will dismiss all your concerns and refuse to test if you have an ME/CFS diagnosis? Might it be better to just tell him/her about fainting, dizziness, fatigue, and whatever OI-related symptoms you have and leave ME/CFS out of it?
 

Sushi

Moderation Resource Albuquerque
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19,934
Location
Albuquerque
What should I be telling him about delayed OI in PWME, specifically? If anything?
Sorry I haven't been following your symptoms, so I'll just give general responses. Unless you have your own personal data, having done 20 minutes or more of the poor man's TTT, I'd just take along published material (like what SOC linked) that gives information on it--in case he doesn't know about it. From my experience most cardios know very little about dysautonomia.
[QUOTE/]What tests should I be asking for?
The TTT for more than 20 minutes would be the basic one. If you suspect any arrhythmias, I'd ask for a holter monitor or one of the other tools that charts your electrocardiogram over at least 24 hours.
I think it is important to make sure you have ruled out atrial fibrillation.
I have had episodes of Afib which were so extreme that they screamed at me, waking me from sleep. Sometimes a person can have a lower level of Afib and not know it. When I have had it, my BP would go up to about 170/130 and my pulse would jump from 120 to 180 continuously. It is easy to monitor this with a good HR monitor. However, you would need an electrocardiogram to show less extreme arrhythmias.
Unfortunately, in my experience, both POTS and NMH are somebody else's problem in the eyes of cardiologists.
That has been my experience too, although on the 2 occasions I had to go to the emergency room, the docs there had a basic knowledge of dysautonomia so that they at least knew what NOT to give me. And they were excellent at treating Afib with an IV medication.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
There's some info in the ME/CFS Primer on cardiovascular issues and treatments. See sections 3:5 and 5:8.

Thanks - I'll take a look at that.

You might want to ask for a TTT, which is a standard test for OI. Since low blood volume seems to be fairly common in ME/CFS, you might want to ask about that. Some docs will prescribe fludrocortisone or desmopressin based on symptoms, but others want to test aldosterone and/or vasopressin first.

I don't think they're equipped for a TTT locally but I've got data from a poor man's TTT.

Are you sure you want to mention ME/CFS to the cardiologist given the way some doctors will dismiss all your concerns and refuse to test if you have an ME/CFS diagnosis? Might it be better to just tell him/her about fainting, dizziness, fatigue, and whatever OI-related symptoms you have and leave ME/CFS out of it?

He has access to my NHS records so he'll already know I have ME.
 

anciendaze

Senior Member
Messages
1,841
...I have had episodes of Afib which were so extreme that they screamed at me, waking me from sleep. Sometimes a person can have a lower level of Afib and not know it. When I have had it, my BP would go up to about 170/130 and my pulse would jump from 120 to 180 continuously. It is easy to monitor this with a good HR monitor. However, you would need an electrocardiogram to show less extreme arrhythmias...
There was a local case in which a man's PCP thought he should check into a hospital for tests. After he walked in, the admitting nurse realized he was in atrial fibrillation when she took his vital signs, and got him to emergency. How reliable is this report? I got it directly from that admitting nurse.

While the high heart rate is a classic sign, these are not normal beats, and a monitor may drop beats, making numbers unreliable. With AF you need to listen directly to the heart to determine beats, and you cannot depend on high blood pressure as a sign. AF with low bp is evidence of a medical emergency that requires treatment.

Most cases of AF are not so serious, but you have to clear away the possibility of serious problems before you can deal with more subtle ones. Any good doctor will respect this attitude.
 

Sushi

Moderation Resource Albuquerque
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19,934
Location
Albuquerque
While the high heart rate is a classic sign, these are not normal beats, and a monitor may drop beats, making numbers unreliable. With AF you need to listen directly to the heart to determine beats, and you cannot depend on high blood pressure as a sign. AF with low bp is evidence of a medical emergency that requires treatment.
Nope, not normal beats but sort of "quivers." I think my monitor averages yet in an extreme event it is very indicative of a huge problem as it jumps 30 or more numbers second by second. When I had my first episode I stupidly drove to an Urgent Care facility as I was too intimidated by 911. They were not yet open but I knocked on the door and showed them my HR monitor through the glass and they opened up and hooked me up to an IV...and called an ambulance! Lesson learned.
 

anciendaze

Senior Member
Messages
1,841
Nope, not normal beats but sort of "quivers." I think my monitor averages yet in an extreme event it is very indicative of a huge problem as it jumps 30 or more numbers second by second. When I had my first episode I stupidly drove to an Urgent Care facility as I was too intimidated by 911. They were not yet open but I knocked on the door and showed them my HR monitor through the glass and they opened up and hooked me up to an IV...and called an ambulance! Lesson learned.
While I'm sure there are many unnecessary and expensive rides in ambulances, there are definitely times when you should not drive yourself, and this was one of them. I have already mentioned that man who drove to the hospital and walked into the ordinary admitting office while having AF. I also drove a patient having a classic heart attack to the ER. She got out of the car, and walked in while I was getting a wheelchair. That was the first time they caught an actual attack on instruments. She had had about six stress tests in an effort to find a heart problem.

Another person I know suffered shortness of breath due to pneumonia, and drove herself to the ER. When measured, her O2 saturation was 80%. How she got there without having an accident is the sort of question that makes people postulate guardian angels.

There are strong financial incentives to drive yourself, yet people who have problems which deprive their brains of oxygenated blood are the last ones you want to make such a decision. By dismissing a variety of episodic physiological problems as trivial or "mental", current practice is indirectly responsible for quite a number of errors like yours. Some of these lead to mortality via major trauma in automobile accidents, and may kill others who were simply at the wrong place at the wrong time.
 

deleder2k

Senior Member
Messages
1,129
Maybe ask what he thinks about l-arginine/l-citrullane? Or perhaps isosorbide mononitrate? Show him Fluge and Mella's hypothesis and patent application.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Maybe ask what he thinks about l-arginine/l-citrullane? Or perhaps isosorbide mononitrate? Show him Fluge and Mella's hypothesis and patent application.

Sorry, what do these drugs do? Are they OI drugs?
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Help! Anybody know about what @deleder2k said? I have to leave for my appointment in an hour!

I should have posted earlier, obv... :whistle:
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
Some of these lead to mortality via major trauma in automobile accidents, and may kill others who were simply at the wrong place at the wrong time.
Yes, it was dumb to drive though I did feel clear headed enough and it was just a few blocks, but true that we get intimidated by medical authorities and insurance companies about calling ambulances. I certainly would never make that mistake again!