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Posted

Before I get a bad flare (every couple weeks) my top lip gets chapped and the skin gets real hard. What does chapped lips have to do with POTS? Is my body giving me some clue? Why is this my first sx of a flare?

At first I thought this was just a winter thing but it's still happening in the 90 degrees weather and has been going on for 2yrs. Never got chapped lips before.

Any ideas?

Chapped and Crusty :)

Dayna

Posted

If there is a connection I would surmise it's due to dehydration issues. Skin needs water to hydrate itself just as our internal organs do. Perhaps you could evaluate if you are doing the POTS basics such as taking in extra fluids on a daily basis, and ask your doctors if you should be drinking even more water during your "flares."

Posted

I drink a lot, too, but I don't retain it, despite the salt, so I am chronically dehydrated, too.

That would be my best guess as well.

Posted

aside from chronic thirst, cotton-mouthed for a decade, CHAPPED lips is a huge deal. I LIVE on Chapstick..could NOT go w/o it!

Also drinking NEVER hydrated me as I peed it all right back out. Salt didn't help, florinet didn't help. SOME days I lost 5-7;bs in 24 hrs...it literally had me BEDBOUND.

DDAVP HELPED. Immensely but you need to enlighten yourself about it and have a wise doc.I needed this ADH (ANTI diuretic hormone) as my BODY ACTED like a diuretic naturally...my endocrinologist ran many tests and urine catches but nothing showed up.

We did not do the complicated, risky ADH testing but went on my clinical symptoms. On DDAVP I can drink much less and use less chapstick. I take it as needed and listen to my bodies' needs.

I am too tired today to think more on this but this has been discussed here..the DDAVP. So if you stay PERPETUALLY dehydrated, chapped lips is a huge sign.

Finding a way to keep FLUIDS in, 'may help.'

Good luck

Posted

Thank you for posting this topic....I have constant chapped lips as well. I go through so much lip balm it's not even funny. :)

Lisa

Posted

I also wanted to drop a line and say I always have chapped lips. I have tried about everything but still have not found anything really to help. ( Even chapstick) Good topic I no I am not alone!

Amy

Posted

obviously dehydration could be a culprit, but it's not the only one.

the autonomic nervous system is a strong part of secretions in the body. while i cannot swear that this applies to lips, i know for a fact that it can apply to dry mouth, dry skin, dry eyes, dry vaginal area, etc. this has been affirmed in my discussions with several of my autonomic docs.

for me this is an always thing and i have never heard of it as a warning of a flare, but who knows.

i should have bought stock in good chapstick and lotion years ago....i have my faves by now that i can't do without.

:) melissa

Posted

i get chapped lips, but i also get way too much drooling, saliva and mucus in my nose and throat when i eat even alittle food which then makes me cough and feel like i am choking on all the extra mucus! i hate going thru this everytime i eat!! i am looking for meds to dry me up!! antihistamines dont help, but sophia, i have a question about the DDVAP, so i would really appreciate any input, do you only take it as necessary and not daily? and do you have to have regular blood tests while on it? and what dose do you take? thanks

radha

Guest dionna
Posted

wow! that is very interesting. i thought my chap licks was due to something i was doing wrong. i know that tooth paste can dry them out and i brush my teeth a lot so i thought that is what it was. interesting topic. i like it a lot. i will definately look more into it. chap lips and pots. i wish i was a doctor. i would do so many tests and experiments with patients. writing and article about the chap lips and pots. let me go before i write to much and prove this, "it is better to be thought a fool, than to open the mouth and remove all doubt." i think that is how it goes. probably not verbatim though.

dionna :)

Posted

Radha

I take the DDAVP as needed. I take 1/4 of a 2mg pill. I take one at bedtime when I remember so I can sleep thru the night or with only one am bladder wake up call

...some nights my bladder isn't annoying me and I can fall asleep w/o it. In the AM, or when i wake up, I drink two cups half decaf/half caff coffee. Then about an hour after that, if my bladder is making me make numerous trips, I take the daytime dose of DDAVP. I also find I try to take it at least once a day to keep the cotton mouth to a coping level and the chapped lip thing as well.

No, my endocrinologist doesn't due routine blood work except maybe once a year of if I have a complaint. After so many years of this, I try to keep blood work to a minimum. My doctor is an endocrinologist and I have had SUCH A QUALITY of life issue from this med--no longer CHAINED to the bathroom!?, I continue to take it and have for about 6 years or so.

If I have to leave the house to grocery shop or run errands. I WOULD ALWAYS have to stop in public restrooms and I like to keep THAT to a minimum. With DDAVP, I can NOT worry about that..or getting stuck by a train (TOUGH on full bladder and provokes ANS symptoms) Also having to pee LITERALLY every 10-20 minutes washes out much needed fluids and electrolytes. And like my doc told me when I asked, our electrolytes can get ouf of balance all the time and if we listen or take precautions to our body, can avoid things getting really bad (muscle cramping, etc) So i FAITHFULLY drink Gatorade daily..or Powerade.

DDAVP was first used for bed wetting in children.

It's a good thing to be enlightened about this drug if you are the one bringing it up to a doctor. Feel free to Pm me if you have any more questions.

Sophia

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