I Resurface From The Water (i've Been Gulping Down Endlessly)

[shoe]

Hi all,

I wasn't here a whole bunch before I got, um, in a major fight with the gravitational pull of feeling ick. I am having an okay moment, and stopped by... And I just spotted a post by my husband (unless there's some other guy with "shoe" in his name who owns snakes and has a wife with autonomic problems. My husband is awesome, by the way, and I'm not saying that cause he's reading here, I'm saying it cause he's posting here.) Anyway...

While my new GP (who is in-training -- I think she's in the "fellowship" stage, as she often has attendings step in) stands in for the really awesome guy who diagnosed the whole deal is away teaching I'm just getting increasingly concerned. She's a nice woman (I just wrote "girl" -- I have hit the age every new doctor looks like a junior high student) but I'm getting really uneasy that she's not quite getting it. The problem is always that I don't have the energy to really make her get it, y'know?

I've found since things really hit the ground in January 09 that I need to drink loads of water (which she is aware is pretty common in dysautonomias). The problem is things are now so slow to be addressed that in order to feel decent, I'm seriously drinking upwards of 3 or more gallons of water a day (Gatorade works better/lasts longer, but of course you can't drink even half that amount of Gatorade a day without causing problems you don't really want, either). I don't feel thirsty, I just feel fewer effects when it comes to blood pressure and heart rate problems and headaches or, um, temporary blindness, cramping and passing out -- if I waited till I felt thirsty to drink, I'd be unconscious. I have of course tried to figure out (on my own) if this was something that was a coincidental thing -- like, if I drank and felt better a few times, is there a real relationship, or am I finding patterns that aren't there... And there's an honest to pete relationship. And sometimes I feel good enough I could maybe go out for an hour or two, but it's limiting as carrying water and finding bathrooms that aren't completely cringeworthy and readily accessible aren't always possible. But if I try to hold off, I feel really awful within an hour and a half and can't do anything anyway.

She guessed that I was getting migraines a few hours after exercise because both the exercise and the water intake were raising my blood pressure too much. I figured that might make sense. So I tried to, as she said, cut back a little. Um. Five minutes into very easy walking (and little sweating) I had lost sight in one eye and I knew the migraine would be coming down soon. So I guzzled a Gatorade. Bye, migraine. And I noticed that if I drink even before I get my "uncomfortable" markers, I actually feel somewhat... well... I don't feel deathly horrible as much. But I don't think she's really believing that I really have sat and tried to figure out if it was helping or placebo, and that I'm needing to drink that much because we probably have some things we need to get off of our posteriors and try to treat and not talk about in theoretical terms. (Grr.)

The other deal -- and I'm more upset with the attending that was on that day -- is that I apparently have some sort of arthritis in my knuckles (the ones attaching my fingers to my hand) and my wrists -- as evidenced by (typing being painful) and the large bony outcroppings symmetrically located on both hands. Attending said that my cartilage had gone AWOL, take some Tylenol.

My concern is that when this got worse in Jan., I had really swollen joints in both hands -- we suspected rheumatoid arthritis, but tests were negative (which rheumatologist said was an indicator it wasn't that sorta deal, but the problem with rheumatological things would be you never can say that till it turns out to be something else). From my understanding, osteoarthritis doesn't usually affect those particular areas in that fashion, especially in someone under 40-50 (all round it's usually weight bearing joints, and I could never walk on my hands). I was not okay taking that pronouncement on faith (again, mostly was p.o.'d at attending) especially where something like RA can make an autonomic dysfunction worse (I know that I've had the dysautonomia for years -- probably since childhood)... and especially since stuff like RA is treated very differently than just taking tylenol and has potentially deadly complicating factors all on its own, never mind the pre-existing stuff. And hey, if it was something like that, maybe treating that could make the autonomic issues roll back to where they were a few years ago and a bit easier to manage (and more importantly, live with).

I made an appointment with the rheumatologist I saw before (who had acknowledged something was swollen, and definitely amiss, but it didn't seem like his territory for certain) and I see him the beginning of September. I let my GP (and the GP who diagnosed me as well, as he wants to be kept in the loop and has assured me he is not out of reach ever -- love him) know that I was going to do this (and requested the referral). It might be absolutely nothing and have no bearing on how everything plays out -- but y'know, I'm not willing to just assume that right now.

Meanwhile I hang in there... I think the hardest thing is just the feeling that nothing is getting done. I know there might only be limited success and there will be pretty okay days and really horrendously horrible ones, but I hate more than anything the feeling that because the rewards and gains might seem limited or small to the doctor (hey, I know they become doctors -- most of them -- because they like to help people, not just annoy them to death ), they have this hesitance to try anything. But we won't know what the effects of any thing are until we try it -- and it's my life and health, and I ought to have some say in whether the outcome is potentially worth it.

Or maybe I don't like it seeming like they're being lazy, when I kinda don't have the luxury of being able to do anything at all -- never mind stuff that would count as laziness.)

Anyway, an update... and wondering if anyone that had a pre-existing dysautonomia of any sort later found that they have a co-morbid autoimmune sort of disorder going on?

thanks

shoe

[juliegee]

Hey Shoe-

I know many here need to drink a lot, BUT what you describe is quite excessive. It reminded me of a Mystery Diagnosis (Discovery Health) show that I recently saw. Don't be put off by the term "diabetes." This is referring to a very different condition than the two types that are much more common. Read carefully. Let me know what you think.

Here's the link: http://health.discovery.com/encyclopedias/...tml?article=593

Julie

[kayjay]

Shoe, I just got home from the Mayo clinic and skimmed your post. It is really important that you do not Drink too much water. I do...the Neuro at mayo told me to try to keep the water to about 1/2 a gallon and Drink other things like V8, or pedialite g2, or nunn. He does not reccomend regular gatorade because of the carbs... not helpful to pots people.

[janiedelite]

Yeah, I totally understand that you want to function but 3 liters of water can cause other electrolyte disturbances. Can you increase your sodium intake so you'll retain more fluids? You'll need to get your doc's advice on this because I don't know all the specifics of your situation.

I think you're right to pursue the possible autoimmune disease. I'm surprised that the rheumy wasn't able to help you... don't they specialize in autoimmune diseases??? Can he refer you to someone who CAN help?

Hope you can get this figured out!!! At least you have yourself a good helper at home.

[Maxine]

Hi Shoe,

Yes, please be careful with too much water. It sounds like you might benefit from increasing your sodium.

I have autoimmune hashemoto's thyroid, and yes autoimmune disorders can add a monkey wrench to ANS dysfunction.

I hope your GP works out well for you. It's so important for out doctors to try to understand this if they want to amange out health care right.

Take care of yourself.

HUGS,

Maxine :0)

[shoe]

I've taken a look at that previously -- definitely one of my concerns (esp. where the GP and attending said, just try to cut back to "reset" things... um. No, I'd prefer not to pass out... Of course, the response was... Well, if you're going to pass out, drink. But if I pass out while trying to get to a faucet/fridge/dog water bowl/toilet, that's not so good -- and it's sudden enough it's possible). I have taken the antidiuretic that is rx'd for that (only at night). I stopped because I wake up constantly anyway (they suspected the peeing was making me wake up a lot more than I should... but it's just me). The odd thing is my electrolytes aren't at all out of whack (although my urine osmolality is really dilute.) I've never been clear with DI whether or not electrolytes are off... or if it even matters. I think my biggest miff is that it was a really offhand sort of handling -- and whether it's due to DI or the dysautonomia, something's going on that's not really being moved to be addressed -- and both are actually to some degree, y'know, manageable. It's tough cause I really don't expect a miracle, but I've tried really hard to do everything I can to minimize the effects on my life, and I kinda feel like the medical profession isn't trying to even meet me part way.

[shoe]

Thanks all -- I do try to counteract the water, and thus far, my electrolytes have been perfect (my urine is dilute, but sodium -- both urine and serum are fine, as is everything else). I sweat to a degree that's stunning (mostly at night). I would probably think I had wet the bed, but I don't think my pillow would be affected in that case... And even mild exercise/exertion will make it look like I stepped out of the shower in a matter of minutes.

The rheumatologist is an AI guy, and he has acknowledged the problem with rheum./AI things is that they just as often don't like to show themselves easily. My aunt has had massive neurological issues for years, and suspected AI stuff but was seronegative -- and finally developed the discoid rash where they found lupus on biopsy -- she remains seronegative -- and her neuro issues are definitely worse than a lot of the clearly lupus related stuff... So given a lot of things, I can imagine that it's an elusive bit to figure out.

I see the GP tomorrow (I feel bad for her, in a way, because I'm a messy case, and I get that, but I'm getting sick of the fact I tell her I'm drinking too much water because I need to in order to feel somewhat human, and she says, "Well, try to drink less!" Wow, that's GENIUS, I can see why you paid all that money to go to med school. Sheesh.) I'm not sure at all how the rheum.'ll turn out. I mean, the bumps are very obviously there and very obviously the same place both hands and all. I'm fully prepared it's possible he'll say it's osteoarthritis, or I have a spontaneous sprouting of petite green peas in my joints and on my bones because I'm half Jolly Green Giant, but I have a decent suspicion he'd only say that after taking a good look through imaging studies and whatever and not say that an imaging study isn't necessary because we can feel the lack of cartilage and bony growths...

Um... Ho ho ho!

shoe

[firewatcher]

I've taken a look at that previously -- definitely one of my concerns (esp. where the GP and attending said, just try to cut back to "reset" things... um. No, I'd prefer not to pass out... Of course, the response was... Well, if you're going to pass out, drink. But if I pass out while trying to get to a faucet/fridge/dog water bowl/toilet, that's not so good -- and it's sudden enough it's possible). I have taken the antidiuretic that is rx'd for that (only at night). I stopped because I wake up constantly anyway (they suspected the peeing was making me wake up a lot more than I should... but it's just me). The odd thing is my electrolytes aren't at all out of whack (although my urine osmolality is really dilute.) I've never been clear with DI whether or not electrolytes are off... or if it even matters. I think my biggest miff is that it was a really offhand sort of handling -- and whether it's due to DI or the dysautonomia, something's going on that's not really being moved to be addressed -- and both are actually to some degree, y'know, manageable. It's tough cause I really don't expect a miracle, but I've tried really hard to do everything I can to minimize the effects on my life, and I kinda feel like the medical profession isn't trying to even meet me part way.

This leads me to think of nephrogenic DI, which is a kidney thing. If the kidneys do NOT respond to dDAVP then it is definitely a kidney thing. Have you had a Serum and Urine Osmolality done at the same time or a 12 hour water deprivation test? If you are drinking enough your electrolytes will be normal, it is only at each end of hydration that they would be off (dehydration/overhydration.) There are other causes of polyuria that may need to be investigated. Have you seen a nephrologist?

[shoe]

I haven't had a work up other than urine osmolality -- the serum sodium and urine sodium were at the same time, but not the osmolality, and no one's done a water deprivation test (which is partly why I am bull that the newer doctor said to try to "do a deprivation test at home" to see how long I can go... That'd be defeating the purpose, from what I can tell...) I tend to just feel a vague yicky, but it's not much of anything, and then I'll be to the point of losing sight or cramping so I can't stand within minutes... If I drink the instant that yick starts, I discovered (this week, actually, because I do really try NOT to drink that much -- it freaks me out on the one hand cause I know it isn't good... Not imminently dangerous, maybe, but sure as heck ain't ideal...) that I actually can do a bit more than I could normally. Not heavy thinking or lifting, but I can at least move around and sit up and be somewhat more engaged longer...

The DDVAP (did I get the acronym right? It is what I used -- the nasal spray variety) did keep me from peeing during the night, but I woke up a lot just because I do anyway (sleep studies show I have the tendency to wake up most times I start in slow wave sleep, started years before the peeing/drinking cycle). The doctor tried it because he figured the need to go was waking me up. It did suppress the going (and I was feeling pretty lousy in the morning in terms of hydration, but I was able to not drink all night and then actually stand up in the morning, still). I think it worked, but again, it's one of those things it was just a test run in terms of no one knew what was going down at the time (this was even prior to figuring out the dysautonomia bit).

It's something I'll push with her tomorrow... (and thanks so much for clarifying when the electrolytes would be off... the newer GP is saying that since they're not out of whack it's not an issue. Yessss, it IS. It's a royal freakin' pain.)

Thanks again!

shoe