LindsayFor the past few days I have been pretty dehydrated. From what I understand, dysautonomia and ME/CFS can cause problems with water retention, and we can excrete too much water. I’ve noticed that, since being diagnosed with POTS, I sweat a lot while working out. I mean…A LOT. Prior to developing POTS, I didn’t sweat much while working out. So, I’m likely losing more fluids than I should.
When I’m dehydrated, my symptoms increase. This week, my tachycardia, joint pain, nerve pain, headaches, and fatigue are all worse. And, of course, I’m constantly thirsty. The burning pain I get in my left hand and left foot have been much worse, too.
Dehydration can lead to hypovolemia (low blood volume). Studies have shown that people with POTS have up to 1/3 lower blood volume than expected. Such low blood volume can cause symptoms to flare, and in extreme cases can cause serious health problems.
At least for dysautonomiacs, low blood volume can be treated with Intravenous Saline Therapy (IV fluids). Why IV fluids? Saline has the same density as normal blood and contains the same amounts of sodium and chloride concentrations as normal blood, so it can help increase blood volume. Click here to read a recent article about the benefits of saline therapy in people with POTS. (If you have POTS, this may be a great article to send to your doctor).
However, last time I went to Urgent Care for IV fluids, the visit took 6 hours and cost me over $150.00. I have shitty health insurance since I’m on an individual plan, not one paid by my employer, and things like IV fluids are not covered. So, the dilemma becomes: at what point is it worth it to go to Urgent Care for fluids?
I’m not miserable. The pain is worse than usual, and I’m getting a little tired of drinking like a camel (you know, if camels actually drank water instead of just stored it), but I don’t have a migraine, and I’m not falling down. So, at this point attempting to resolve the symptoms isn’t worth the money. I’m working on a calculation to put a monetary figure on symptoms so I can complete an official cost-benefit analysis. I’d welcome your input 🙂
However, calculating the cost of symptoms is harder than it sounds. If I could be certain that my symptoms would disappear forever, I’d pay every cent I have. And, if I could be sure I would only have to go to the E.R. or Urgent care a few times a year, $150.00 a pop is no big deal. But, with no guarantee that my symptoms will be better afterwards, or that I won’t need to return a week later, it’s just not worth the cost unless I’m absolutely miserable.
So, unless it gets worse, or unless I win the fricken lottery, my cost-benefit analysis suggests it’s not yet time.
Interestingly, I recently had a genetic test that revealed that I am more sensitive to pain than the average person. I will write more about that in a future post, after I take an online class on genetics so I can figure out how to interpret my results to show how awesome my genes are (thanks mom and dad).
Readers, how do you decide when it is time to seek help for your health, whether it is a flu, symptoms of a chronic illness, or some other ailment?
“Hope is putting one foot in front of the other, even when we’re not sure why we bother: it is the triumph of the human spirit over adversity.” – Katrina Berne, author CFS, Fibromyalgia and Other Invisible Illnesses
Stay tuned.
– L
Lindsay
What genetic test did you do? I did the nutrigenomics and still need to sit myself down in front of the computer and read the DVD that came with it. I do that my methylation pathways are messed up and I need a lot of B and B12.
I did the 23andme DNA testing. There’s so much information that it takes forever to analyze it. I was hoping there would be some information that would suggest how all my immediately family members are perfectly healthy, and I’m….not.
Great quote at the end! As far as IV therapy, I think I heard somewhere that you don’t want to do it unless you’re really sick anyway. I think they said that your body starts to adjust to it and it doesn’t work anymore. Yet that article suggested once per week. Have you heard that before?
Just so you know, I sweat like a BEAST (and I mean BEAST!! ) when I exercise. I sweat like a smaller best when I don’t.
I’ve went to a naturopath recently to help me manage my Lyme and POTS, and she suggested sage tea. I know…I know…it sounds weird. I was like, “Ummmm…sage tea for hyperhidrosis? Okaaayyy…..”
I’ve been drinking two cups per day for the last couple of days. It doesn’t SEEM to be working yet, but maybe it will soon. I’ll keep you posted 😉
Glad I’m not the only one who sweats a lot 🙂
Keep me updated about the sage tea! I’m always willing to try something new!
I have the same problem with taking my meds. Is my migraine bad enough to take the $10 pill or the $40 shot? If my meds are too high for the month, I will cut back from 3 pills a day down to 1 or 2 pills a day – knowing that I run the risk of getting a worse flare up because of it.
I’m the same way! It’s so frustrating that we have to financially analyze our symptoms!
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ONLINE class for genetics?! What what? Man, your blog is a wealth of info. for me today! Does that link tell me more? PS, I hope you’re feeling better. I just had a run of polyuria a few weeks ago. 6L of urine in my 24 hour collection. URG.
6L?? daaaaaamn.
the online genetics class is through coursera.org. – great resource for anyone looking for some (free) knowledge. i just finished a philosophy course that i really enjoyed.
Indeed.
But I think I’ve figured out what the problem was. Thanks for sharing this info!
Ahh the age old dilemma. Please, if you find some kind of solution, let me know! 🙂
As a fellow dys patient, I may be able to help on the not enough water in the world issue. After fighting for an IV of slaine too many times, I asked my endo why I had to drink so much (and then just pee so much) to keep my blood pressure off the floor. They ran a blood test for blood osmololity (my blood was short on water)and antidiuertic hormone (they found too little to give a number–like none) .
It turns out that I have diabetes inspidus–this is NOT about blood sugar it’s WATER DIABETES.
Who knew such a thing was out there?
And it has a very simple cure!
A pill DDAVP (desmopressin) fixes this!
Since this Dx I have wondered just how many POTS, NCS, Dysautonomia patients might benefit from having the never ending drink and pee faucet slowed down to normal.
Might not be you–but if you are constantly drinking and needing water just to pee it out it might be.
Hope this helps!
Sandy
I get iv therapy every week and it helps. If I miss a week I can really tell. It foes help and it is a needed therapy for those with dysautonomia.
i’m glad to hear the iv therapy helps! did your dysautonomia doctor set up the weekly therapy for you? did you have any problems getting insurance to pay for it?