Does this look like POTS and NMH?

[PatJ]

I'm looking for some feedback on what others think of my OI symptoms, my BP and HR diy-test results, and my conclusions. This is a long post because I've tried to be comprehensive and detailed about my OI symptoms and log of BP/HR readings.

I haven't been "officially" diagnosed with CFS, but according to every criteria document I've ever read (including the Canadian Criteria, the International Criteria, and the IOM guide.) I have the major symptoms (OI, PEM, etc.) and many minor symptoms.

Orthostatic Intolerance started in 1991 the day after an episode of Transverse Myelitis (TM has a suspected viral origin). Until recently I have been able to manage the symptoms with Dimenhydrinate (taken multiple times per day). From what I have read, I suspect Dimenhydrinate has worked because it's an anti-histamine, which helps to prevent histamine induced blood vessel dilation.

No doctor has ever understood the reason for the OI (if Dimenhydrinate works, keep taking it, problem solved!) After a worsening of OI last month I have been doing a lot of research (while lying on my back, in bed.) I've never had a tilt-table test.

Two recent OI flare-ups in June and July have left me bed-bound for much of the day. Before this I could be upright most of the day but with very low activity due to fatigue and PEM. I now take 50mg Dimenhydrinate 4 times per day, but even at this dose I am limited to 20-40 minutes of time upright every couple of hours. Electrolyte fluids help enough to keep taking them, but otherwise it's a small improvement. I take 2L of water per day with salt, potassium, and 1 tsp of coconut palm sugar because it seems to noticeably improve fluid retention vs. when the sugar is left out. Without the electrolytes I urinate more frequently. (Even with the electrolytes I urinate every 1 to 1.5 hours.)

I've tried licorice tea but my adrenal glands start to ache after a few days. The same happens if I add too much salt to the electrolyte mix. (I assume it's my adrenals based on the two small areas where the aches arise in my back. The left aches more than the right. The ache disappears within a day of stopping the tea or reducing the salt.)

Flexing leg muscles and abs, shifting weight when standing etc. helps a little but is quickly tiring. Sitting with legs crossed etc. is helpful but not much. I avoid alcohol, caffeine, and don't take any medications except Dimenhydrinate.

I must rise from a lying position slowly (~30 seconds to 1 minute). Symptoms 20-40+ minutes after standing upright include increasingly poor balance, blurred vision, increasing heat, perspiration, nausea that can become extremely uncomfortable, increasingly difficult thinking, increase in pulse strength until my head starts pounding, shortness of breath, increasing fatigue, increasing calf pain (especially the right calf).

The symptoms arise at different rates, but become more pronounced after 20-40 minutes of being upright (it varies by the day, and how long I have previously been upright.) Currently I can remain upright for 20-40 minutes as long as I lie down for at least 1 to 1-1/2 hours between periods of being upright.

I start to feel better once I lie down but the length of time it takes to feel mostly normal lengthens based on how long I have been upright. Just as each symptom arises at different rates when upright, they also fade at different rates after lying down. If I push it and try to stay upright too long then I have greater fatigue and brain-fog for the next couple of days (PEM?) and the symptoms arise more quickly when upright during this period.

I feel better, think better, and have more energy when lying down.

I feel worse:
* when upright (whether moving or not)
* in hot conditions (especially sunlight)
* after a large meal (I eat ten small meals a day due to hypoglycemia. I do know the difference between low blood sugar symptoms and OI symptoms.)
* when attempting to meditate (deep breathing and calm mind lower BP).

## Blood Pressure and Heart Rate Record
I've been recording my BP and HR to help determine the type of OI that I have.

It's important to note that if I stop taking the Dimenhydrinate entirely for a couple of days the symptoms on standing become worse and arise more quickly; I've tried different doses over the years, but have only tried discontinuing the Dimenhydrinate once in 24 years. By the end of the first day I felt quite miserable when attempting to remain upright (mostly bed-bound), then made it through a second day feeling even worse, then resumed taking the Dimenhydrinate. This trial discontinuation was more than a year ago, before my OI suddenly became worse and resistant to the Dimenhydrinate.

* Readings were taken with an automatic home BP monitor. Essentia/Physiologic 106-930 by AMG Medical Inc. New batteries. Specs: pressure +/-0.4kpa (3mmHg); pulse value +/- 5%.
* First reading(s) were taken before rising in the morning, and before taking water/electrolytes, food, or Dimenhydrinate.
* I rise so early because my blood sugar starts to creep downward at around 3:30am. I need to eat by 4am. I go to bed at 7pm to get a longer period of sleep (unrefreshing, and with frequent awakenings.)

Format: systolic/diastolic (heart rate) time, pulse pressure

## July 3
Lying
87/61 (57) 3:33 am; pp:26

Standing still, no movement. Left arm supported at a right angle.
93/71 (79) 3:38 pp:22
96/73 (77) 3:44 pp:23
98/75 (82) 3:54 pp:23

Pulse rise within 11 minutes (77-57): 20
Total pulse rise since lying (82-25): 25
Lowest pulse pressure (87-61): 22
Test length: 21 minutes

If taken alone this test would rule out POTS, but the tests below show more consistency over a few days. This is a good example of how a single test result may be an exception and shouldn't be relied upon.

## July 4
Lying
86/58 (53) 3:12 am pp:28
90/57 (53) 3:19 pp:33

Standing still, no movement. Left arm supported at a right angle.
98/67 (73) 3:22 pp:31
97/70 (77) 3:26 pp:27
97/74 (80) 3:32 pp:23
101/74 (83) 3:45 pp:27

Pulse rise within 13 minutes (80-53): 27 bpm
Total pulse rise since lying (83-53): 30 bpm
Lowest pulse pressure (86/58): 23
Test length: 33 minutes

## July 6
Lying
90/54 (52) 3:05 am pp:36
93/59 (56) 3:10 pp:34

Standing still, leaning against wall, arms hanging (holding BP monitor)
90/68 (78) 3:12 pp:22
88/70 (90) 3:18 pp:18
99/75 (92) 3:20 pp:24 (started feeling a little woozy)
94/80 (97) 3:26 pp:14 (less woozy)

Pulse rise within 10 minutes (92-56): 36 bpm
Total pulse rise since lying (97-52): 45 bpm
Lowest pulse pressure (94/80): 14
Test length: 21 minutes

## July 7
Lying
87/50 (57) 3:06 am pp:37
87/53 (55) 3:12 pp:34

98/66 (76) 3:14 pp:32 (just after slowly rising to stand)

Standing still, leaning against wall, arms hanging (holding BP monitor)
93/70 (91) 3:21 pp:23 (yawning frequently)
96/76 (89) 3:27 pp:20
94/77 (89) 3:32 pp:17
99/76 (91) 3:38 pp:23 (stopped yawning after this point)
94/80 (94) 3:44 pp:14 (starting to warm up, feel less stable)
103/80 (105) 3:50 pp:23

Pulse rise within 9 minutes (91-55): 35 bpm
Total pulse rise since lying (105-55): 50 bpm
Lowest pulse pressure (94/80): 14
Test length: 44 minutes

## Conclusions
* Due to the BPM increase within a short period of time it looks like POTS (what kind?) and possibly Orthostatic narrowing of pulse pressure (according to this:http://www.oiresource.com/oitest.htm) 28 bpm rise within 10-12 minutes seems to be the usual requirement for diagnosis.
* The low pulse pressure might indicate low blood volume, and maybe NMH?
* Pulse pressure wanders.
* Pulse, Systolic, and Diastolic continue to rise even though I'm standing still without movement.
* The test period needs to be long enough to appreciate the rising pulse and variations in pulse pressure.
* Multiple tests are very useful to check for consistency and see variations on different days.

## Plans
* See what the helpful folks on Phoenix Rising have to say.
* Give my doctor some good documents about diagnosing and treating OI. He is a good doctor who wants to learn about CFS and presumably OI but is _very_ busy.
* Try elevating the head of the bed by 10-15 degrees to help with fluid retention at night
* Use a g-suit (ordered)
* Try a ResQGard threshold impedance device (ordered)
* Consider herbs, medications, other treatments

Thank you for any help you can provide.

-Pat

 

[Valentijn]

@PatJ - Your heart rate is rising to compensate for your very low pulse pressure, so labeling it as POTS is not particularly accurate, nor likely to be helpful. For example, taking meds to lower your heart rate would just make you feel worse, as your circulation would then be even less functional. Neurally Mediated Hypotension might be the closest fit.

The best way to diagnose that is probably with an adjusted Tilt Table Test. Normal ones are 10-15 minutes, but it can take up to 45 minutes on a TTT for NMH to manifest. An autonomic (dysautonomia) specialist is best for that, as cardiologists are usually clueless about OI, especially NMH.

Blood tests can be done, to look at levels of aldosterone, norepinephrine, etc, which might help direct treatments.

If you have ME, elevating the head of the bed can be catastrophic. We need the rest we get when our head is down, and keeping it elevated just crashes us and aggravates the OI issue. Exercise and building up specific muscles fails to work for a similar reason - PEM trumps those types of OI treatments.

A better way to retain fluids might be with electrolytes. There are some home recipes, and good ones can also be ordered online. Just avoid sports drinks and sports mixes, since those are 95% sugar with too much salt and not enough of anything else.

 

[PatJ]

Your heart rate is rising to compensate with your very low pulse pressure, so labeling it as POTS is not particularly accurate, nor likely to be helpful.

@Valentijn - Does this mean that POTS typically wouldn't include low pulse pressure?

The best way to diagnose that is probably with an adjusted Tilt Table Test.

I'm in Canada so seeing a specialist will likely mean a long wait but I'll ask my doctor about this and the TTT.

Blood tests can be done, to look at levels of aldosterone, norepinephrine, etc, which might help direct treatments.

Are you aware of a guide to OI related blood tests, or detailed differential diagnoses, that I could provide to my doctor?

If you have ME, elevating the head of the bed can be catastrophic.

I've just remembered that I tried raising the head of the bed for roughly one week last year. Sleep was worse and I awoke dizzy each morning.

A better way to retain fluids might be with electrolytes. There are some home recipes, and good ones can also be ordered online. Just avoid sports drinks and sports mixes, since those are 95% sugar with too much salt and not enough of anything else.

I've been using 2L water with 1 tsp coconut palm sugar (helps with retention and adds a few minerals), 540 mg potassium (from gluconate), and 3/4 tsp sea salt. I also salt my food so between the drink and the food I'm getting quite a lot. The extra salt helps enough to keep taking it but I still spend most of my time horizontal.

Thanks for the helpful comments.

-Pat

 

[Valentijn]

@Valentijn - Does this mean that POTS typically wouldn't include low pulse pressure?

According to the POTS entry on wikipedia, hypotension does exclude the diagnosis: "It occurs without any coinciding drop in blood pressure, as that would indicate orthostatic hypotension.[1]"

It seems extremely likely that the drop in pulse pressure would similarly be exclusionary. In both cases there is still tachycardia, but there's a better explanation for the cause, and the tachycardia is a compensatory reaction rather than the problem.

Additionally, while many use "POTS" as a shorthand for referring to their orthostatic problems, a certain type of doctor can get a bit nasty if anyone ever uses the wrong term for anything, especially if they have Views about ME/CFS patients. At any rate, the best approach is to simply describe your reaction: "My pulse pressure is already low when I'm lying down, and when I stand up it frequently goes into the low twenties and even the teens."

Are you aware of a guide to OI related blood tests, or detailed differential diagnoses, that I could provide to my doctor?

Not really. Someone else probably is

I've been using 2L water with 1 tsp coconut palm sugar (helps with retention and adds a few minerals), 540 mg potassium (from gluconate), and 3/4 tsp sea salt. I also salt my food so between the drink and the food I'm getting quite a lot.

It might be worth adding a commercial mix, to see if it helps a bit more. I currently use the "Electrolyte Stamina Power Pak" from Trace Minerals Research. "Electro Mix" from Emergen-C is supposed to be better, but it's been out of stock for a while and I've never been able to try it.