"decreased Alpha Sensitivity"

[bamboozlem]

Hi Everyone,

I'm wondering if anyone has some insight into the results of my tilt table test. Besides the tachycardia, there was mention of "decreased alpha sensitivity". I have no idea what this means, but I wonder if it could steer me in the direction of what drugs may or may not be helpful (florinef and midodrine did not seem to help, and possibly worsened things).

I have Ehlers Danlos hypermobile, and I've been dealing with POTs for decades now, but was only diagnosed last year.

Typically, my blood pressure is very low, as is my resting heart rate.

Here are the conclusions from my tilt table test:

1. Positive tilt table test for postural orthostatic tachycardia syndrome (POTs) - note: heart rate jumped from 53 to 117

2. Normal beta adrenergic sensitivity test

3. Normal intrinsic heart rate

4. Decreased alpha sensitivity ("calculated by the formula bp2 minus bp1 divided by 4. In this particular case, it was 37.5, which is considered below normal")

5. Normal alpha activity test

6. Catecholamine levels flagged as high (5.8)

Thanks in advance for any info.

Callie

[jesse1919]

Hi. Welcome. What did your doctor say? Did you get your results without a follow up appointment? That's odd. Usually they want to charge the insurance company for another visit... and help you figure out what to do next, of course.

This alpha business is referring to chemical receptors on your arteries, alpha receptors, that respond to norepinephrine (a catecholamine) and cause the muscles surrounding your arteries to contract, which increases blood pressure. Reduced alpha sensitivity means although your norepinephrine response is high (#6), your blood pressure doesn't rise as much as expected. This is typical in POTS. That formula doesn't make sense to me though. Do you know what your BP was? And #3 is a bit surprising if your resting supine HR is only 53. I'm not sure what to tell you about treatments- Midodrine would probably be the logical choice. Did you start with a low dose and give it a week or two? Have you tried compression hose?

Jesse

[bamboozlem]

Hi Jesse,

My regular doctor doesn't really know much about POTs, but he usually goes along with whatever article I bring to the table.

For the POTs diagnosis, I got my GP to refer me to an electrocardiologist who specializes in dysautonomia. Unfortunately he lives on the other side of the country (I'm in Canada). I went to Toronto to have the tilt table test (completely desperate for help at this point), and I'm able to see him once a year, but I don't want to run the risk of pestering him. I've got a referral to see someone closer, but the waiting list is (at least) two years.

His recommendation was low dose florinef and midodrine. I tried it for a few days and after initially feeling better, I then seemed to feel worse, so I quit.

Do you take midodrine without florinef?
I like wearing the compression hose for appearances sake, but I don't think they do much in the way of improving symptoms.

Hemodynamic variables in the supine position were as follows (mean values):

1. Heart rate 53 beats per minute.

2. Blood pressure 95/57 mmHg.

3. Stroke index 83.7 mL/m2.

4. Cardiac index 4.5 L/min/m2.

5. Total peripheral resistance index 12-93.

After 5 minutes of baseline recording, the patient was tilted up to the upright position. She referred to some chest tightness and anxiety. Heart rate increased and there was evidence of orthostatic tachycardia. Hemodynamic variables during the nonpharmacological phase of the tilt table test were as follows (mean values):

1. Heart rate 117 beats per minute.

2. Blood pressure 117/78 mmHg.

3. Stroke index 31.9 mL/m2.

4. Total cardiac index 3.7 L/min/m2.

5. Total peripheral resistance index 20-34.

Thanks for the info,

Callie

[SarahA33]

callie, i'll chime back in later as I've got to run out for a little while..., but what major cities are you able to travel to in CA?

All my best, Sarah

[bamboozlem]

Hi Sarah,

I think I can manage with the help of my folks to get anywhere in Canada. I'm in British Columbia, about 7 hours north of Vancouver.

Also true of the States, but probably wouldn't be able to handle out-of-country medical bills.

Best,

Callie

[ramakentesh]

Reduced alpha receptor sensitivity is cardinal pots.

[SarahA33]

Hi Callie, My apologies for not responding sooner. I came across your post in a search I was doing and felt so badly I hadn't gotten back to you.

I'm not how far you are from Calgary? Dr. Raj moved from Vanderbilt to Calgary, here is his information for you: http://www.dinet.org/index.php/index.php?option=com_physicianlist&view=physiciandetail&Itemid=0000&phyid=387

Also, here is a list of practicing ans doctor's in CA: http://www.dinet.org/index.php/index.php?option=com_physicianlist&view=physicians&Itemid=276

Have you tried calling a place like Mayo or Cleveland to see what they offer for international patients?
This is what I found from CC, http://my.clevelandclinic.org/patients-visitors/international