Can You Have Both Pots And Paf At The Same Time?

[Kitsakatsa]

So, how I came about this was kind of wierd and I cannot believe that it was missed at Mayo - TWICE!

I was reading an article about the Midodrine whole sheelywag and there was a link to an Autonomic Failure article at the bottom, so I clicked on it and I think I've discovered that I have both PAF and POTS.

Is that even possible?

Here's why I think I have PAF- PLEASE correct me if I am up the wrong tree...

It lists these things as belonging to PAF and not POTS and I have them:

1. Tonic Eye (Adies Syndrome)

2. Gastroparesis

3. A drop of 20 diastolic and systolic (each a drop of 20) on TTT. I dug through my records to my last TTT and lo and behold. A very significant drop in BP.

But then, it says that PAF is rarely life altering. I had an employee with PAF and we have very different symptom mixes. So, I do believe that I have POTS and time and time again I have been formally dx with POTS.

BUT what the crap?

Can you have both? Don't. Get. IT.

Does POTS + PAF = MSA?

Oh good heavens. I think I need a drink!

Kits.

[issie]

I'm no expert on this and too tired to look it up right now - but I've been talking to another person on another site that has PAF. She said that with the drop you don't get the pulse increases. Those stay the same even with BP drops. With POTS you get the tachy. You can't have both.

Don't take the drink - you'll feel worse!!!!!!

[MightyMouse]

PAF and POTS definitions:

POTS "Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising."

PAF (definition from Vanderbilt)

"The disorder appears to be confined to the sympathetic and parasympathetic nervous systems. The adrenal medulla is relatively spared. The initial feature in men is impotence

The symptom that usually brings patients to the physician is orthostatic hypotension, or a fall in blood pressure with standing. The orthostatic hypotension may be described as unsteadiness, dizziness, or faintness upon standing. It is worse in the morning, after meals or exercise, or in hot weather.

Patients also complain of pain in the neck or back of the head, relieved by lying down.

Loss of ability to sweat as much as the body did in the past.

Changes in urination including nocturia (the need to urinate during the night), urinary hesitancy (difficulty starting or maintaining a urinary stream), urgency, dribbling, and occasional incontinence. This can lead to an increased chance of urinary tract infections.

The orthostatic hypotension is usually accompanied by supine hypertension, or increased blood pressure while lying, even when the patient is on no medications to raise blood pressure.

It is noteworthy that patients with PAF do not usually have fevers as high as healthy subjects; nevertheless, any fever will significantly lower their blood pressure and consequently decrease their functional capacity.

The definitive diagnosis of hypotension as the cause of orthostatic symptoms is usually made by the demonstration of a decline in systolic blood pressure of 20 mm Hg and diastolic blood pressure of 10 mm Hg after at least one minute of standing. However, a decrease in systolic blood pressure by 50 mm Hg or greater is not unusual in these patients. This hypotension may be so severe that seizures supervene in perhaps 3% of affected patients. A diagnosis of PAF cannot be excluded on the basis of a single measurement of upright blood pressure that does not meet the above criteria. Several measurements of orthostatic blood pressure should be made. About 5% of PAF patients have angina pectoris, usually in the absence of significant angiographically demonstrable coronary atherosclerosis. PAF patients tolerate high altitude very poorly, perhaps because they hyperventilate in this situation."

So, if you read the info, you can see that PAF does not have the compensatory rise in heart rate--having that would exclude you from a PAF diagnosis. In fact, PAF patients have very low catecholamines too.

Nina

[Kitsakatsa]

Okay, I thought that PAF did have the HR rise- but you are both right, it does not. I definately have the HR rise.

I am really more confused than ever (doesn't take much), maybe these other things belong to POTS but it just hasn't been documented formally.

There have just been some things (like the tonic eyes, then hearing loss) and every time my Doc says "oh that's because of POTS", but I can't find them documented in the POTS family.

Just trying to make sense of it all.

Kits

[issie]

There have just been some things (like the tonic eyes, then hearing loss) and every time my Doc says "oh that's because of POTS", but I can't find them documented in the POTS family.

Kits

In my research on aldosterone, I came across an article by Dr. Wright on hearing loss. It has been connected to low aldosterone. Some people are getting a good portion of their hearing back by using bio-identical aldosterone. It could very well be a POTS issue related to low aldosterone. I'm wondering if our lowering our levels with refined salt is the culprit? We need all the minerals, and maybe a replacement of this hormone instead of so much salt. I don't know??????????

[MightyMouse]

Gastroparesis is well documented within our population. I have it too. FOr me, it's not a surprise at all because I have a collagen defect.

[comfortzone]

Gastroparesis is well documented within our population. I have it too. FOr me, it's not a surprise at all because I have a collagen defect.

Hi Mighty Mouse...I had a question on your collagen defect? In reading a ton about hypermobility syndrome (aka known as EDS-HM or hypermobile type in some circles) I learned a bunch. So I had the dx confirmed by a geneticist. Yet at this institution they say the two entities are different - not the same - I provided them with recent research and articles showing different but they declined to comment (UCSF). Anyway because of cost factors I did not have the skin biopsy done -- that was recommended as I had a cousin die as a youth with Osteogenesis Imperfecta. My sister is hypermobile - and you can find traces of evidence of things akin to this in the family tree for sure. It was the genetic counselor at the lab in Washington that told me to save my money!

So as I go through things mine was to me sudden onset of body wide pains after a surgery. Then in digging deeper I have a beighton score of 4 (or 6 depending on who's measuring my elbow laxity)... I have the highest score on the revised brighton criteria if I remember correctly - so it seems it should be cut and dry). So that means I get a ton of "itis's' - Like bursitis, tendonitis, arthritis - severe enough to have 4 joint replacements. I have the other constitutional symptoms of varicose veins, hiatal hernia, small inguinal hernia and small umbilical hernia, GERD, extensive diverticulosis, myalgias and joint pains, IBS as a young adult, and I forget all the rest aside from hypermobility currently primarily in hands and wrists as the other joints aren't there to assess anymore - even at an advanced age.

So a recent test a year ago also said my esophagus spasms and doesn't know what to do with food - and my stomach in spite of years of proton pump inhibitors is red.

So is this a collagen defect like you are describing? Can I ask how your's manifests itself? I mean I still feel there is speculation as to the validity of my diagnosis of Hypermobility Syndrome - or there is currently widespread lack of a solid knowledge base among clinicians that's in sync. Some people are hypermobile there whole lives with no issue. When pain and constitutional symptoms present - then I guess it's a syndrome. The key question is why or what suddenly brings on the 'syndrome' -- for me it's speculated that the trauma from something (me surgeries - others pregnancy and such major things) can change your pain threshold and bring it on....Dunno

So can you share what you know about this? Thanks!