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Faulty Thirst Mechanism???


heissovereign
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Hello,

Does anyone else have to make themselves drink, when I was a kid my mom would always get onto me because i could go a whole day and not realize I didn't drink anything.. I was researching it as I still hardly ever get thirsty, and found a link to that and MVPS/D.

so here's a question... How is that diagnosed? I have mild regurgitation in my Mitral, Tricuspid, and pulmonary valves. and every symptom listed for this.. I have also read that it is linked to POTS, is this true?

I only have been diagnosed with the NCS part of dysautonomia. Mostly because I am un insured, but hopefully that will change soon.

I have been living with all of these symptoms all my life but never with answers until now, so i'm still a bit confused as my cardiologist doesn't explain much... any input, I will be very grateful...

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Yes, I have to be reminded to drink all the time. I am NEVER thirsty. I don't know what mvps is though- sorry :). I do have POTS and if you are talking about regurgitation of food then I also get that all the time. Not much help just saying I'm the same. :)

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puppylove- lol MVPS/D is mitral valve prolapse syndrome / dysautonomia.. and lol the regurgitation is in the heart valves... I found it while researching. I am glad to know i'm not the only one though that has trouble drinking. :) thanks for responding

ramakentesh- Thanks for responding... I have to force myself, but I feel so much better when i do. it's just with two little ones I forget so easily... I hate that when i do drink it goes right through though.

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I asked this question recently, but didn't get much response - I assumed few of us have this problem. I'm the same - just not thirsty and have to force myself. I know I'm getting enough fluids. I also have mild mitral regurgiation, but was told it's not a big deal. Not sure of the connection between the two though?

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http://www.sfn.org/index.aspx?pagename=brainBriefings_thirst

Not sure if this link will work; but I was also interested in this topic because I was telling the mast cell specialist last week how I am never thirsty. I could literally go for days without drinking if I didnt need it to live. I have always had this problem. This article from neuroscience actually states there are people who have deregulation of the receptor in the hypothalamus that sends the signal to tell you to drink. It says it is most common in the elderly.

It also says that the hypothalamus is responsible for temperature regulation, etc......since so many of us have temperature issues I am wondering if there is an issue in the hypothalamus with some of us?

Bren

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frugalmama- fluids make me nauseated as well, but have to have em so it's just a viscious cycle.. thank you for your response.

Naomi- My doctor doesn't talk to me about anything with the regurgitation or anything, I am uninsured so they don't like to help me much even though i pay my bills!!! anyways.. i just happened to find it in my records and decided to research it and I found MVPS/D and I have all of these problems..

everytime i have trouble with my HR and BP everything else acts up too. I am really just grasping at straws until i can get this insurance and a doctor that will take me seriously, lol he did the poor mans TTT with my compression stockings and me on my meds and said oh your fine and then my BP dropped after a minute and he said well you did drop some but it's not bad, and lol he's the one who told me to wear the stockings and he asked me if i ever thought of wearing them i was like what, your the one who told me to wear them the day i come in... hmm.. yea so he hasn't done the testing without my stockings and meds. but i have here and it is a 40bpm raise in HR and 30 decrease in my sys BP, and 10-15 drop in dia. but the stockings, fluids, salt, and florinef seem to help some. ok so i'm done with my info lol sorry... I am just so frustrated without knowing what is all wrong with me, i am 24 and this has been going on all my life i need some answers... thank you for listening :) BTW your baby is so cute, how old? I have two girls 2 yrs and nine months old.

Bren- Thank you, that is very interesting. I have had this problem my entire life too, lol I always thought it was funny, my doctors used to always say they couldn't find anything wrong but knew i wasn't textbook and my body was just messed up... they need to figure this stuff out, we can't do it all ;)

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I do not get thirsty dailly. I have to make myself drink something and if I do more than sip water; I get nauseous from the fluid. Occasionally, however, I will feel extreme thirst for water.

For people without dysuatonomia issues thirst is a sign the body is already dehydrating. I do not know for us if that is the case because I stay dehydrated.

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I do not get thirsty dailly. I have to make myself drink something and if I do more than sip water; I get nauseous from the fluid. Occasionally, however, I will feel extreme thirst for water.

For people without dysuatonomia issues thirst is a sign the body is already dehydrating. I do not know for us if that is the case because I stay dehydrated.

I know I have always found that to be odd with me, because i have to work very hard to keep from being dehydrated but don't get thirsty either. I wonder why those of us who don't get thirsty get nauseated from drinking? that is very strange..

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also I saw in your signature, you were dx'd in 2008 but started symptoms at about 5 yrs old? i started fainting at age 6 and was just diagnosed april 2011 with NCS, 18 years of fainting and they finally put a name on it :) I am waiting on some insurance so I can be tested, because i have symptoms of POTS as well. heck, like most of us my whole body is messed up.

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Bren - after reading that, I am going to somehow force more water in. As far as a faulty hypothalmus or pituitary .. makes sense, but how would you find out - a PET scan?

Heissovereign - thanks, :) my daughter is 3. Lack of insurance definitely puts a damper on things. Testing is especially expensive. Hope when you get it, you are able to find a good Dr. to diagnose and help you.

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I just wrote something about thirst and potassium use

By the way, I also used to have MVP and I totally cured it using magnesium supplements for around a year. There some studies on pubmed that talk about that. I imagine magnesium along with potassium will correct the problem faster.

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I saw a Mystery Diagnosis about a woman with Diabetes Insipidus along these lines. The Dr's felt it was caused by an accident where she hit the back of her head and possibly damaged her pituitary. I would think the opposite could happen? Lack of thirst because of something wrong with or damage to pituitary? Or maybe it's just one more crazy dysautonomia symptom - some of us are too thirsty, some not enough. I don't know if the ANS is involved in thirst regulation. I'll have to look that up later.

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this is where I saw it, I found this here http://www.mitralvalveprolapse.com/articlesfromnewsletter.html

The MVPS is a dysautonomia I am waiting on a doctor but i have been looking this over as well as some other websites about it and this explains my entire life, only my anxiety/depression issues aren't as severe as some of these. they used to be though... terrible terrible time. that paired with my regurgitation then this diagnosis makes more sense with all the other issues i have. check the link out along with this link ( this is the symptoms)

http://www.mitralvalveprolapse.com/symptoms.html

Another piece to the MVPS/D puzzle is the importance of high fluid intake. People with MVPS/D seem to have a faulty thirst mechanism that makes them even less thirsty than the average person. Do you go all morning without drinking anything?

The healthy approach is to sip liquids all day. Try a sport bottle with a straw. Keep it full and drink all day. If this is not convenient, drink a large glass of water with breakfast, at midmorning, lunch, midafternoon, dinner, and after dinner.

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Whoa! - I wasn't told any of this stuff. Even with mild regurgitation, they say there can be symptoms.

And this really caught my attention:

Some of the symptoms related to this heart murmur/click are the results of dysautonomia, meaning the involuntary nervous system becomes slightly imbalanced, causing a failure in blood pressure regulation and an imbalance in other involuntry bodily functions.

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I know, my doctor didn't even tell me about my valve regurgitation. i found it all in my records that i requested. I talked to his nurse on the phone about it but they don't know much about dysautonomia but she did say that the test they did showed the regurgitation in 3 of my valves, lol I thought well I would think that would be causing alot of my problems since my ANS is out of whack. . But I have all the minor symptoms and some of the major symptoms. it explains alot to me. I have been trying to find more on it, but yea it causes problems with thirst, temp issues, digestion, just about all of the things with dysautonomia besides the BP and Hr. even the muscle pain I have dealt with all my life. I wish I could get more out of a doctor about this, but I guess I gotta be patient..

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also I saw in your signature, you were dx'd in 2008 but started symptoms at about 5 yrs old? i started fainting at age 6 and was just diagnosed april 2011 with NCS, 18 years of fainting and they finally put a name on it :) I am waiting on some insurance so I can be tested, because i have symptoms of POTS as well. heck, like most of us my whole body is messed up.

Interesting!! You are the ONLY person I have spoken with that started as young as I did! I passed out daily for a long time. Mom said my siblings would come home from school ready to eat; I would head for the bed. She said she had to pick me up from the floor almost daily, because I never made it to the bed before fainting.

Dr.'s did blood test, etc. I was put on 2 types of medicine for a year to clear 'it" up. If I continued they were going to do exploratory surgery, thinking something was wrong with my kidneys! lol Mom would not allow that and we just dealt with the fainting.

Also, I used to have a good appetite but within minutes of starting a meal; I had to lie down. The Dr.'s had no idea what was wrong; now I have read that many of us will feel faint becuase the blood flow is going to the digestive system. This is the same thing that elderly deal with; they are told to remain seated it after a meal!

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I am the complete opposite - I'm thirsty all the time. I guess, to be clearer, it's not so much "thirst" as an uncomfortable feeling that i know will be helped by drinking a lot of water. I have found, though, that water alone won't help and may make me feel worse - it's got to have either salt in it (I just add some sea salt to give it a slightly salty taste), or I mix Brita-treated tap water with carbonated mineral water so that it's a bit bubbly and salty. It definitely helps with a sort of ill/woozy feeling, which I suspect is caused by low blood volume.

Someone once told me that I drink water like I'm dying of thirst, which is a bit embarrassing... I suppose I do feel like it's saving my life!!

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