Do I have dysautonomia?

[c0728]

I went to the cardiologist today with the following symptoms: lightheadedness, low heart rate, low blood pressure, fatigue.
This has been going on since April and I finally went to my family doctor about it in August. Since then, I have had two holter monitors which showed my rates in the 40s-60s and up to 150 with exercise. I used to exercise regularly 3-4 times a week for 30 minutes. Now I am lucky if I exercise 2-3 due to I am always tired. My blood pressure is good and normally runs borderline 90/60, and sometimes higher. It has been as low as 74/56, but I don't think that happens often.

I consider myself very healthy but do not think it is normal to feel tired and sluggish all of the time. The nurse practictioner mentioned a possible autonomic disorder and ordered a tilt test and echo next week.  Has anyone else experienced these same symptoms?

[Heiferly]

If you're ever at the hospital or doc's office and think of it, ask for a "hat."  They'll usually give you one for free (it's just a flimsy disposable plastic thing that fits over the toilet bowl between the rim and the seat).  Gross as it sounds, I steal mine from the hospital whenever I'm there by washing them out in the bathroom and bagging them in one of the hospital plastic bags they have for you to take your stuff home in, so I have a couple at home.  They have measuring lines inside them to measure your urine output; you just measure it when you go each time, then dump it out.  You can keep track of it on paper and add up how much output there is over 24 hours.  It would at least let you get an idea yourself of what his output is and tell the docs; whether they place any weight on that information or act on it could be another matter, but it can't hurt to at least find out.

Potato skins are a better source of potassium than bananas, and you can hide a LOT of salt in a potato, depending on how you serve it.  So if your son is willing to eat a potato with the skin on it, that's one way to get potassium and sodium at once.  (See, those "loaded" potato skin appetizers that are so unhealthy for everyone else are actually healthy for us!!  Muhahahahahaha!!!!)

[enzymelover]

  Okay, thanks for your ideas. You're right, there's nuthin' simple about regulating fluid balance in dysautonomia!  I think my son's endocrinologist wants very much to handle his symptoms in the most conservative ways, and is only replacing missing hormones, doing regular blood tests, and hoping something improves someday. He relies too heavily on blood test results for treatment, and has never asked for a urine measurement in the two years my son has been his patient.  It seems no matter what symptoms pop up, he just goes by the blood tests for treatment.
The pediatrician is no help either. They don't seem to think looking at the urine is helpful in any way with this!

I do think the kid needs to increase both sodium and potassium intake. I'll see if I can get him to improve on that.

[Heiferly]

My sodium hit a one-time low (flagged by the lab as low but just a HAIR out of normal range) of 135 in 2010 (whilst on fludro) ... otherwise it seemed to vary between 136-142.  From what I can see, it was 141 before the salt and fluid loading with the fludrocortisone.  So, from the looks of it, I would *guess* that fluctuations in my serum sodium levels had more to do with my hypovolemia/dehydration status at any given point in time than the fludrocortisone and salt loading, but that's just a guess.  (I'm looking at numbers over a span of about 5 years.)

I would talk to the doc about the increased output.  They may want to do a 24 hour urine catch to see how much his ins/outs are, or something like that.  I don't know exactly how much my urine output compares to before I got sick (enough time has passed, that I just frankly can't remember to give you honest feedback on that), but I often note (surprisingly) that I urinate less frequently than my same-age peers who drink less fluids than I do.  Of the two people I know (family members) intimately enough to have compared such things, I know that my output was roughly equal on a 24 hour urine catch, even though I'm quite certain my intake is higher than theirs.  My output is (shockingly, to me) lower than my intake, but you have to take into account that you lose fluids through respiration, sweat, stool, vomit, etc., as well as through urine; one GP I formerly had and I used to joke that considering my hypohydrosis (near inability to sweat), constipation, and low urine output, the only explanation was that I was exhaling 99% humidity at an alarming rate or I was storing all my fluids in a secret bodily compartment like a camel or something.  All joking aside, figuring out the fluid handling of a person with dysautonomia is not a simple proposition.  The aldosterone testing and giving the fludrocortisone a shot is a good start, though.  Remember that the fludro needs salt to work, so he really may need to consume what seems (compared to normal dietary recommendations) like an unhealthy amount of sodium.  If you just take the fludrocortisone and increase fluids without increasing sodium, the fludrocortisone does not have the necessary "tools" to cause retention of the fluids; this *could* be the culprit behind the increased output if your son isn't getting enough sodium, but you'll need to confer with his physician to find out for certain.  It will probably help if you keep a food journal for a few days and track exactly how much sodium he is getting so the Dr. can determine if it's sufficient for the fludrocortisone to work or not.

[enzymelover]

Hi Heiferly, good to have you back here! I hope things are going well for you now.  I have a question. Do you know what your serum sodium level is on 4 L water and 5000 mg of salt?  My son recently started Florinef, he's drinking 3 L a day, and has increased salt intake with foods and salty broth. After six weeks his serum sodium went from 137 (which is what it normally always was) up to 141. His liquid "output" seems to have increased along with input. Shouldn't the fludrocortisone reduce daily output, by increasing retention of sodium and fluids?

I'm wondering how much salt he can safely consume in a day. He would never swallow a salt tablet so he must rely on foods.
This hasn't helped with his orthostatic hypotension at all yet, but he's only taking a .1 dose of fludro once daily. I would like his doc to work him up to a higher dose, but I want to be careful not to push his serum sodium out of range.
Unfortunately, I don't think the fludro is the answer to his problem, but he did test very low aldosterone, twice, before starting fludro, so we'll see.

Welcome back!

[Heiferly]

I would ask your doctor to be *specific* about how much water and salt intake they think would be recommended for you to start with, and then they can track your signs/symptoms and have you increase or decrease from there as they and you feel is appropriate based on how you are doing.  80 oz (64 water + 16 sports drink) of fluids doesn't sound like too much off the top of my head because I've personally been put on a 4 L (1L is approx 32 fl oz, so 4L is 128 fl oz) fluid-loading regimen, and 5000 mg sodium/day salt-loading (that's approx. 2 tsp. salt) regimen.  I've heard of other patients being put on fluid regimens as high as 5L/day orally.  

I do sometimes come up a bit shy of my 4L for the day, but as LivingInHope correctly pointed out, you do get fluids from some places that you don't ordinarily think of.  If you're "officially" counting fluids (i.e. how the nurses in the hospital count them), anything that is liquid at room temperature goes towards your "ins" (fluid intake) ... that includes broth, milk (even if it's over cereal), jello (don't bother trying to tell them that once it "gels," it won't turn liquid again even at room temperature ... your nurse will not be swayed by your scientific arguments ... lol), popsicles, etc.  

Sorry it took me so long to reply to your post.  I've been bopping in and out as I'm able.  It looks like you've been in good hands with our community in the meantime.  :-)

I can't remember if I've welcomed you already, so if not ... Welcome to our community!!
Heiferly.

[LivingInHope]

Perhaps you could get a copy of your echocardiogram results?