Dysautonomia without POTS

[Horizon80]

I was wondering if it's possible to have dysautonomia without POTS?  My biggest problem is after eating I get excessive blood shunting in my abdomen and lower extremities.  My blood pressure is usually in the low end of normal and my heart rate is always around 60 bpm at rest.

[mtgardner]

First of all hello and welcome to the forum!  There are many here with lots of experience who have helped me immensely and I am sure you will find many ready to share their experiences.

I am someone with dysautonomia who does not have POTS and does have more problems after meals.

I was having low BP moments with light-headedness for many many months before diagnoses.  This seemed to be worse in the afternoon and after lunch and after many mentions of this to my doctor I happened to have an appt. in his office after lunch one day and was having more then a little trouble.  They saw the low BP themselves and this was the beginning of finding out part of what was going on.

At first I was sent to a nephrologist as they thought the kidneys might be involved.  This needed to be checked out partly because of how this presented as cyclic in the day and hormones are cyclic.  Later on though it became clear that the longer I stood the more problems I have.  It was easier to see patterns as things developed.

The tilt test is one of the best first tests for understanding the hypotension and to clarify what the heart is doing.  This is where my POTS friends and I part company.  Their heart rates go up when their BP drops and quite dramatically.  Mine stays the same as I have lost the innervation it seems to compensate for BP drops.  This presents its own set of challenges just as a POTS reaction of a heart rate going high does as well.  Because of my big BP drop and steady unchanging heart rate on this test I was given the preliminary dx. of pure autonomic failure.  That is sometimes one that morphs into something else down the road and indeed I have now had other clues as well.  

I have had testing done and found to have neuropathy which appears to be autoimmune in nature.  I do have Raynauds and Hashimoto's and they they think the thyroid may be the problem.  I am off for more testing in late January at one of the Mayo clinics to define this more.  What treatment I can get will depend partially on what they find there although my newest doctor is starting me on some meds and I have an endo visit soon.

As for the problems after eating I have read a fair amount about it.  With some of us it is common as you describe the blood goes to the gut for digestion and it can make a huge difference.  For sure when it happens consistently you become very aware of it and expect the bp drop after eating.  One suggestion I read was to include a caffeine drink at meal time which can help counteract the drop.  Of course this would not be true for a POTS person as it would cause too much increase in heart rate but I don't have that problem.  It is believed and stated in the literature that usually carbs are more of a problem then protein and I do find this is generally true.  They state it is usually with large meals but I find even half a sandwich will cause a drop.  

Here is a good general informational about low blood pressure and how to counter it including some about BP drops after meals.

http://www.drugs.com/cg/hypotension-aftercare-instructions.html

I have also found that drinking a pint of water can raise my BP 40 points in 30 minutes.
I also keep the head of the bed up 8".  

This article also talks about eating more salt and making sure your water intake is adequate.  When you exercise and what you eat matters too.  For me though small meals still cause a problem.

If you are just at the stage of recognizing something is wrong and do not have testing or a dx as yet be sure you start keeping a daily chart of your BP and when and how much it fluctuates.  This will be invaluable to show your doctor so he or she understands better the problem.  Most of us have fairly large BP changes.  If you get one of those BP cuffs that automatically take your arm BP and record the pulse as well in memory it will make it all easier.  Write notes down on paper too including when you feel light headed or other observations.  Then if you are seeing clear fluctuations bring up the possibility of
a tilt table test.  There are many many reasons that you can have low BP and defining exactly what is going on can take time.   Be sure you take your BP when you first get up and also take it when you lay down and note your position.  Take it before and after meals and be sure you take it an hour later as well.  If this is something that is hard to do most days then take it when at home and on week-ends.  

There is a lot of information out there on different types of dysautonomia.  POTS is just one of them and while men do have it sometimes it is more common in women.  There are also problems that can cause temporary problems with low blood pressure that can be remedied so it is good to have this thoroughly checked out.

Here is a link to a site that has a lot of information on differnet types of dysautonomia as well as lots of helpful information.  

http://www.dinet.org/

Good luck with this and let us know how things go.  Marie  

[Heiferly]

Can you describe what symptoms of dysautonomia you have a bit more?  What do you mean specifically by "excessive blood shunting in [your] abdomen and lower extremities?"  Is this something a doctor has told you?  Or is this something that you believe may be occurring due to a particular sensation you are having or a change in some measurable parameter such as your blood pressure or heart rate that you are monitoring with a home blood pressure cuff?  (I ask because it might be more helpful for us to hear about the symptoms or signs in detail, not because I don't believe that you are having symptoms.)  

When you say that your blood pressure is usually at the low end of normal, what is the exact value and in what position are you taking it (standing, sitting, or lying down)?  Is this a measurement from your doc's office or are you monitoring at home?  Are you having problematic symptoms that cause you to be concerned about your resting heart rate (because that's actually a normal, healthy resting heart rate unless you have some particular reason to be concerned about it or your doctor has told you otherwise for your particular case)?

Have you taken your blood pressure and heart rate before and after eating to see if it changes?  Have you been tested for blood sugar problems (which can also cause symptoms in relation to meals)?  Have you discussed these symptoms with your doctor, and if so, what did s/he say?  What testing, if any, has been done so far?

As mentioned above, POTS is only one of many forms of autonomic dysfunction.  If that analogy section from the SATs doesn't make your head spin:  "POTS" is to "dysautonomia" as "chihuahua" is to "dogs."   (Sidenote:  for all the POTSies out there laughing right now, yes I picked the hyperactive chihuahua to represent the speedy-hearted POTSies on purpose!  LOL)

I hope we can give you a bit more guidance if you can give us a little more information.  Welcome to the community, nice to meet you!
Heiferly.

[patient915]

It definitely is possible.  There are many different types of dysautonomias, and POTS is one of those types.  There are many others like NCS and PAF.  It is like squares (POTS) and rectangles (dysautonomias).  All squares are rectangles (all people with POTS have a dysautonomia) but not all rectangles are squares (not all people with dysautonomias have POTS).