My visit to the cardiologist

[Andrew]

My primary care doc referred me to a cardiologist for symptoms of dizziness. I had decided months ago not to bring up my ME/CFS diagnosis, unless I absolutely had to. Telling doctors has never done me any good, and often caused frustration. But I did give him detail about what I meant by "dizzy," which is not simply feeling like I'm about to pass out, but also an awful body feeling that gets worse when standing, made worse with exercise, etc. I also mentioned my heart pounding in the morning, and whatever else I could remember. Plus I told him the tests I had been given.

He took my blood pressure lying down and then had me stand, holding onto the table (I'm sure others of you have had this test). Then every so often he asked how I felt. Finally I told him I just got horribly worse, and not just dizzy. I have an awful feeling in my body too. So he took my pressure. It had dropped 30 points, which it's not supposed to do.

He diagnosed me with Autonomic Insufficiency. I told him I had heard or of Orthostatic Hypertension, but not Autonomic Insufficiency. He said Autonomic Insufficiency is causing my Orthostatic Hypertension. He also has a treatment plan worked out, but it's too much for me to explain right now.

Anyway, maybe he can help me deal this part of the ME/CFS equation. And I will wait until after he tries everything he has in mind before asking about low blood volume, ADH, etc.

 

[Tired of being sick]

My heart has been pounding for so long that I don't even notice it but I do notice the SOB/limb/cognitive weakness and fatigue it causes by not being able to deliver the fuel....

If your limbs and brain are not getting adequate blood supply that carries all the food for your limbs and brain

your body and brain will tell you they are starving by shutting you down mentally and physically..

Have you ever had a tilt table test?

 

[Gingergrrl]

@Andrew when you are feeling better and have a chance, I would love to hear how your new cardiologist explained autonomic insufficiency and what the treatment plan is. Do you have tachycardia when you stand?

I am seeing a cardiologist on Fri for a consult who specializes in autonomic stuff (and am wondering if it is the same person you saw.) I will PM you the name out of curiousity.

 

[sueami]

I'm so glad you've got some traction and a treatment plan going.That has to feel like a relief.

I'm also glad that I'm not the only one experiencing such scary symptoms. I'm waiting on health insurer approval for an echocardiogram, as I am having some awful heart pounding/beat skipping/ill feeling episodes all of a sudden. It's comforting to know that it doesn't presage an immediate dropping dead.

And the idea of there being treatment for it sounds very comforting as well.

 

[Sushi]

@Andrew
So glad that you had what sound like a very good appointment with your cardiologist. I also see a cardiologist as I too have had cardiac symptoms. I was very relieved to be tested by an excellent cardiologist to confirm that the cardiac symptoms were not coming from a damaged heart, but from the autonomic nervous system.

That said (and knowing that there are many causes for autonomic dysfunction), my cardiac symptoms (cardiac weirdness puts it in a nutshell for me), has improved a great deal after treating Bartonella for 5 months.

It is great that you got a treatment plan. I hope it can be smoothly implemented and starts to bring improvement in your symptoms--quickly.

Good going in the way you handled your appointment!

Sushi

 

[Alea Ishikawa]

Hi, Andrew,

I found an NCBI article on autonomic insufficiency.

Chronic autonomic insufficiency has two entities: Pure Autonomic Failure (PAF) and Multiple System Atrophy (MSA). Over the last several years, it has become apparent that a milder form of autonomic insufficiency occurs that is now referred to as the Postural Orthostatic Tachycardia Syndrome (POTS). The secondary forms of autonomic failure occur in association with a particular disease process.

Basically, something is going on which causes postural hypotension. ME/CFS is associated with this.

 

[Sushi]

Hi, Andrew,

I found an NCBI article on autonomic insufficiency.

Chronic autonomic insufficiency has two entities: Pure Autonomic Failure (PAF) and Multiple System Atrophy (MSA). Over the last several years, it has become apparent that a milder form of autonomic insufficiency occurs that is now referred to as the Postural Orthostatic Tachycardia Syndrome (POTS). The secondary forms of autonomic failure occur in association with a particular disease process.
Basically, something is going on which causes postural hypotension. ME/CFS is associated with this.

@Andrew
Having run a Dysautonomia Support group for a few years I am familiar with these terms and PAF and MSA are way too severe for the type of symptoms you are describing. I am posting this cause I wouldn't want you to look these up and find them dire and scary.

Best wishes,
Sushi

 

[Andrew]

Have you ever had a tilt table test?

Yes, about 9 years ago. I was told it was normal.

 

[Andrew]

Do you have tachycardia when you stand?

I don't know. I can wake up in the morning, slip a pulse detector on my finger, and it's above 90. That is supposedly normal range, but it makes no sense to me that it would be that high if I haven't even gotten out of bed yet.

 

[PNR2008]

My tests came back and the results were "autonomic reflex panel which was abnormal; suggestive of both adrenergic and vagal abnormalities". I have mild hypovolemia, 10% below normal blood plasma and 20% reduction of red cell volume, orthostatic intolerance, pan global reduction of sudomotor reflexes suggestive of small fiber autonomic neuropathy.

 

[Andrew]

I hope I'm answering all the questions, but I'm a bit fuzzy right now.

The suggested treatment (as opposed to cure) will be tried in this order: support hose, Proamatine, Flornef.

FWIW, I just read on the Internet that the FDA recently approved Droxidopa. You can check Google for what it does.

 

[Sea]

I'm glad you got a cardiologist who is familiar with autonomic dysfunction Andrew. Many of them are not. I hope that treatment will add some quality of life for you.

 

[taniaaust1]

equation. And I will wait until after he tries everything he has in mind before asking about low blood volume, ADH, etc.

Seeing Florinef is on the treatment list along with compression stockings, sounds like he's already aware that you probably have low blood volume as that is how you treat that.

 

[Andrew]

Seeing Florinef is on the treatment list along with compression stockings, sounds like he's already aware that you probably have low blood volume as that is how you treat that.

He's not. I asked. He said just drinking water would fix this. And I took it no further.

The treatments are an attempt to get blood into the upper part of my body, not because of too little blood, but because my autonomic system is insufficiently constricting my blood vessels.

 

[Gingergrrl]

I don't know. I can wake up in the morning, slip a pulse detector on my finger, and it's above 90. That is supposedly normal range, but it makes no sense to me that it would be that high if I haven't even gotten out of bed yet.

I agree, that is high for still lying in bed in the morning. I was curious if your heart rate also raises significantly when you stand up (like POTS) or try to take a shower, etc.

 

[Andrew]

I agree, that is high for still lying in bed in the morning. I was curious if your heart rate also raises significantly when you stand up (like POTS) or try to take a shower, etc.

I did some tracking but now I don't remember any of it. In fact, I think I was wrong to say my pulse was over 90 in the morning. One thing I do remember is using my pulse rate to indirectly test if I'm in anaerobic respiration. And I learned enough from that to understand that I need to walk slowly, which I keep forgetting to do.

FWIW, I've been on antibiotics for a salivary infection. Five courses that included two different antibiotics. This treatment has reduced my overall "yuch" feeling and also decreased my problems on standing. I am now at the point where I can walk around my apartment little more. Before I used to plan all my moves to maximize efficiency. I still do that, but not as much.

 

[Tired of being sick]

Yes, about 9 years ago. I was told it was normal.

You know that you can easily take the tilt table pots test just by using a home blood pressure pulse machine?

Poorman's tilt table test> Standing for 10 minutes while on lisinopril 5mg tab
Made my POTS worse
Which you will see below..My BPM spiked from 30bpm to 48bpm in 10 minutes of standing on lisinpril!

POTS is a heart rate increase of
30 beats per minute (bpm) or more,
or over 120 bpm,
within the first 10 minutes of standing.

Sitting at rest:
5:24PM 122/71/83

Upon standing:
5:24PM 104/74/110
5:25PM 110/76/116
5:25PM 115/79/122
5:26PM 119/80/126
5:27PM 133/79/125
5:28PM 113/83/126
5:32PM 113/82/125
5:32PM 126/79/126
5:33PM 113/79/128
5:34PM129/77/131
5:35PM 116/75/131


Poorman's tilt table test> Standing for 10 minutes
without medication

Sitting at rest:
6:32PM 152/91/92
Upon standing:
6:33PM 128/81/115
6:33PM 131/84/114
6:34PM 126/87/116
6:35PM 137/88/114
6:36PM 137/86/116
6:37PM 125/84/118
6:38PM 134/81/118
6:38PM 116/79/119
6:39PM 125/84/122
6:40PM 144/84/118
6:41PM 122/81/123
6:42PM 142/82/122
6:42PM 118/79/122

 

[Andrew]

I want to add one more thing. When I saw the doctor I didn't simply refrain from telling him I have ME/CFS. I also held back some of the symptoms. I only told him about the dizziness and what occurs in association with it. This included all results of postural changes and exercise. I didn't tell him about my lymphocyte tests, chemical sensitivity, sleep disorders, etc. My reason was that he is a specialist and I was there for a specific problem. I felt that if mentioned too many symptoms it would confuse the picture and set off his "Patient X" alarm.

Maybe this is the best way to do it, or maybe not. Hard to say. But its what I plan to do from now on.

 

[Gingergrrl]

@Andrew, I don't know if there is one "best" way to do it and I think it is a judgement call in each situation with a new doctor. When I saw my new cardio, I did not use the word CFS but I explained that all my autonomic symptoms began after mono from EBV. I told him about my EBV re-activating and that was why I was taking Famvir (since he needed a list of all my meds.) He felt the info was was helpful even though he was not addressing that part.

I have no idea if he believes in the CFS diagnosis but he was intent on figuring out the autonomic part whatever it was due to and I felt he would benefit from the full picture. Whereas if I see my dentist, eye doctor, ob-gyn, etc, I stay on topic and don't start talking about CFS. But for the cardiologist (and with this one in particular) I felt he needed to get a full picture.

I don't know it that helps or not and I often just get a sense in the moment re: how much is helpful to disclose with any new doctor.

 

[knackers323]

Hi @Gingergrrl do you take monolaurin and famvir together?