The complexity of diagnosing postural orthostatic tachycardia syndrome...

[halcyon]

And always worse on a full stomach vs. empty stomach.

This is something that seems to come up quite a bit when I've talked to people about it. I believe this is partially why my POTS is actually less severe in the morning and then becomes worse throughout the day (as I eat food) and then gets better late at night long after my last meal of the day.

 

[Sushi]

Just came from a cardio appointment. She said that the sympathetic nervous system starts to "wake up" about 3 a.m. and that this is one reason why you may be more subject to tachy in the early morning.

 

[ahimsa]

This is something that seems to come up quite a bit when I've talked to people about it. I believe this is partially why my POTS is actually less severe in the morning and then becomes worse throughout the day (as I eat food) and then gets better late at night long after my last meal of the day.

You might try a search for "splanchnic pooling" or "abdominal pooling" to read more about this problem. I keep thinking I'll try wearing an abdominal binder (since compression socks don't do much for me) but never get around to buying one.

 

[Sushi]

I keep thinking I'll try wearing an abdominal binder (since compression socks don't do much for me) but never get around to buying one.

I used to wear one when OI was bad. It is hard to find one that is tight enough and also comfortable. They don't have to be expensive but need something like a zipper or hooks and eyes to get it tight enough. Anything that you can just pull on, it likely not tight enough.

 

[ahimsa]

I used to wear one when OI was bad. It is hard to find one that is tight enough and also comfortable. They don't have to be expensive but need something like a zipper or hooks and eyes to get it tight enough. Anything that you can just pull on, it likely not tight enough.

I figured any of the stretchy or pull-on ones would not help. And I can't imagine doing up a bunch of hooks.

Do you think one with velcro closure might work? That would be more adjustable and I'd be less worried about buying the wrong size.

 

[Sushi]

@ahimsa I replied (with a pic!) on a thread about abdominal binders (to keep this thread on topic). You should get an alert that will take you there.

 

[Old Bones]

Is thirst and dehydration in the morning considered a POTS symptom? . . . . My head sort of feels dehydrated when I first wake up.

This may be a little off-topic, but does anyone out there (POTS or otherwise) suffer from extremely dry eyes at night? So dry, I awaken with my eyelids almost dried shut over my eyeballs. It is a challenge to open them, and when I do, they make a crunchy sound like crumpling a stiff piece of paper. This started a few months ago when I unknowingly put myself on a high histamine diet -- lots of fermented foods to heal my gut. Dry eyes appears on a list of MCAD symptoms, and mast cell activation disease and POTS often appear together. I've tried lubricating eye drops before bed, and lots of water. Neither is particularly helpful. Perhaps the ophthalmologist will have an answer for me on Wednesday.

 

[jimells]

This may be a little off-topic, but does anyone out there (POTS or otherwise) suffer from extremely dry eyes at night?

I have this problem sometimes, but it's not extreme. I also tend to have a dry mouth at night as well. My mom, a retired nurse, told me that sometimes our eyes can remain partly open while we sleep, especially as we get older. I don't know if this is correct or not.

I've never seen any reference to dry eyes in the literature on POTS, but of course it might be there and I've missed it.

 

[ahimsa]

This may be a little off-topic, but does anyone out there (POTS or otherwise) suffer from extremely dry eyes at night?

My eyes felt pretty dry in the beginning. I remember "failing" one of those Schirmer tests (paper strips in the eyes, looking for Sjogren's syndrome among other things - see https://www.nlm.nih.gov/medlineplus/ency/article/003501.htm). This test was done during those first few years while looking for diagnosis. But my eyes were never as bad as yours.

In my case dry eyes were most likely part of my overall dehydration and low blood volume. It's made better by all the various treatments for the NMH/POTS that focus on increased water intake and retaining fluids (salt, florinef). But this is all just guessing, not 100% sure.

 

[Lolinda]

And always worse on a full stomach vs. empty stomach

Do you have any more info on this? I am so interested because my issues come only after meals. befor breakfast I am essentially healthy. I was unable to find any research on this "postprandial pots"....

Abdominal pooling: can be well tested using doppler ultrasound. Can give more details on how and what to test if anyone interested. in my experience one cant just go to a doctor "please test for this". ordinary angioloists do not find splsnchnic vessels . And even at the best academic institution of the cou try, I had to dictate them the measurements ... but they did them very well.
In my case: I do not have splanchnic pooling. But its largely this: before a meal, things are stressy for my body but it is just at the limit so mybody can still handle. essentially, there is some compromise in the form of reduced splanchnic blood flow, but that does not matter much w/o food in the belly. postprandially, I need to lay in bed for as long as the digestion takes. laying things are fine, standing blood goes to the legs and then both belly and brain suffer, a lot.

It might look like I'm doing nothing ... but on a cellular level I'm really quite busy.

like your signature. so fun. couldnt stop laughing. and connects to things here on PR

Is thirst and dehydration in the morning considered a POTS symptom? It is a symptom I certainly have, as I invariably feel the need to drink two or three 250 ml glasses of water in rapid succession immediately on waking. My head sort of feels dehydrated when I first wake up. (I never thought of adding electrolytes to my water though; perhaps I should try this).

My blood sugar is fine, so my thirst and dehydration feeling is not related to diabetes.

Did you have a test for diabetes insipidus? It has nothing to do with blood sugar, just the name is simillar to diabetes mellitus. But it makes you constantly thirsty, too. And the diagnostic test connects closely to what you describe as your symptoms: you need to thirst ~12h during a night. Then in the morning your ADH (anti diuretic hormone, aka vasopressin) is tested. I had that test done. It was so bad ... I got horribly dehydrated but survived And the adh was almost nonexistent. So yes I have this. If you are interested letme know I can give more info on this issue. Its not a simple thing but can have many causes.

 

[Hip]

Did you have a test for diabetes insipidus? It has nothing to do with blood sugar, just the name is simillar to diabetes mellitus. But it makes you constantly thirsty, too. And the diagnostic test connects closely to what you describe as your symptoms: you need to thirst ~12h during a night. Then in the morning your ADH (anti diuretic hormone, aka vasopressin) is tested. I had that test done. It was so bad ... I got horribly dehydrated but survived And the adh was almost nonexistent. So yes I have this. If you are interested letme know I can give more info on this issue. Its not a simple thing but can have many causes.

Thanks Lolinda, very interesting stuff, I did not know much about diabetes insipidus. I have not had my vasopressin tested; though I think it is not uncommon in ME/CFS patients to have water passing out of your body too quickly (drinking more and urinating more): I have seen other ME/CFS patients on this forum with that symptom. Some patients take desmopressin, a vasopressin analogue drug, as a treatment for this issue.

And a quick Google check finds these studies, which show vasopressin abnormalities in ME/CFS:

Hormonal alterations in adolescent chronic fatigue syndrome.
Among patients, plasma antidiuretic hormone was significantly decreased and serum osmolality and plasma renin activity were significantly increased (p < or = 0.001).

Abnormalities in response to vasopressin infusion in chronic fatigue syndrome.

I believe vasopressin is low in POTS (postural orthostatic tachycardia syndrome) as well; quite a few ME/CFS patients have POTS.

I think the vasopressin abnormalities in ME/CFS may be linked to the fact that many ME/CFS patients have low blood volume (the total volume in liters of their blood is less than normal). There is an article on ME/CFS low blood volume here:

The Blood Volume Paradox in Chronic Fatigue Syndrome (ME/CFS) and POTS

The article mentions that the HPA axis dysfunction in ME/CFS may be the cause of the vasopressin abnormalities and renin-angiotensin-aldosterone system abnormalities in ME/CFS.



Some useful info on desmopressin treatment in ME/CFS here:

Science: Desmopressin is a synthetic form of antidiuretic hormone (ADH or vasopressin), which helps retain water in the body. Damage to the pituitary may cause a deficiency of this hormone, a condition called diabetes insipidus (not related to diabetes mellitus though both cause excessive urination and usually thirst). There is often a deficiency of ADH in CFS/ME.

In one study desmopressin improved HPA axis function in CFS/ME. Because it can increase blood volume it is sometimes used to treat low blood pressure. Anecdotally some people have reported improved digestion.

Results: I get strange episodes when I just pee out everything and have to go to the bathroom often 5-6 times an hour, peeing just clear liquid as is typical of diabetes insipidus, quickly leading to dehydration which because of my adrenal insufficiency is dangerous. At their worst an episode has lasted for 3-4 days. Sometimes during such an episode when I try to drink water, my body actually reacts to it (even in small quantities) as if it was poison - stomach cramps, nausea and feverish chills. These episodes used to be rare (a few times a year) and appear mostly at random or triggered by flying or excessive drinking of liquid at once, but these days they can appear several times a week and are usually triggered by acute stress.

I also very easily get dehydrated if I don't drink any water even for just 1-2 hours (even if I try to drink more later in compensation). Antidiuretic hormone helps abort an episode, though takes a while to work (I should probably have a nose spray instead of the pills). However, it does not help my adrenal insufficiency, and it does not really help my nocturia - it greatly reduces urine output at night, but even if it is like 1/3 of normal, I still wake up at night to go to the toilet (probably out of habit), but it's a good thing as I need to take hydrocortisone at night, anyway. In 2012 the diabetes insipidus worsened and now I have to take desmopressin all the time, usually 1/2 tablet twice a day, but sometimes once a day is enough and sometimes I need a full tablet.

Watch out for: Can cause headaches, edema and stomach upset. One is supposed to limit intake of fluids while on desmopressin, as otherwise there may even be brain edema. (However, I've noticed that if I take it when I'm not dehydrated, water actually feels "yucky" and I can't imagine drinking it, something I never experience otherwise, but if I get dehydrated before it starts acting, I still feel very thirsty and can safely drink quite a lot as long as I feel thirsty.)

Source: Anecdotal evidence of different CFS/ME treatments

 

[loops]

I'm much better after having drunk my coffee about an hour after getting up. Tachycardia worse but feeling more human. Able to do stuff for about an hour then downhill all the way.
I know POTS people aren't supposed to drink it but it makes my life doable, if only for an hour a day.

 

[ahimsa]

Do you have any more info on this? I am so interested because my issues come only after meals. befor breakfast I am essentially healthy. I was unable to find any research on this "postprandial pots"....

I don't have any pointers to research studies. I also don't have information about measuring or proving this problem with tests.

My comments about having more problems after eating are based on my own personal experience, talking with my cardiologist, and reading various articles about NMH and POTS over the years.

I searched the Johns Hopkins patient handout and found this (I added extra line breaks):

When do NMH and POTS lead to symptoms?

Symptoms of NMH and POTS usually are triggered in the following settings:

* with quiet upright posture (such as standing in line, standing in a shower, or even sitting at a desk for long periods),

* after being in a warm environment (such as in hot summer weather, a hot crowded room, a hot shower or bath),

* immediately after exercise,

* after emotionally stressful events (seeing blood or gory scenes, being scared or anxious).

* in some people, after eating, when blood flow shifts to the intestines during digestion.

* if fluid and salt intake are inadequate

(my bolding)

Full document can be found here - http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf