Frequent Urination

[Steve]

One of the most annoying problems that I have is that I am constantly thirsty yet always urinating. Some time ago, before I had heard of POTS, I read about diabetes insipidus and became excited because I thought I had finally figured out what was wrong with me. Of course, my doctor told me that I didn't have diabetes insipidus.

Well, it would certainly be easier if I had it. We know that diabetes insipidus is caused by a deficiency of vasopressin and can be easily treated (you just take a synthetic substitute called desmopressin). On the contrary, no one seems to know why POTS patients are always urinating. Very few articles about POTS even mention frequent urination as a symptom, and none I've read explains what causes it. Am I just not reading the right articles or does no one have the answer?

I've only come across one article that even attempts to explain what happens. Dr. Bell, who is a CFS specialist but has also done OI research, thinks certain blood vessels are so constricted in people with orthostatic intolerance that there simply isn't enough volume in the vessels to hold the fluids. (The analogy he makes is that a pipe with a diameter of half an inch can't contain as much water as a pipe with a diameter of one inch.) That sounds plausible, but he admits it's only a theory and the article was published nearly eight years ago.

[pat57]

Is the thirst from salt loading and the peeing from water loading?

Also I wonder if your electrolytes are balanced. No idea- just guessing!

[morgan617]

I pee constantly and very tiny amounts. I have a history of interstitial cystitis which contributes, but I also just have a very small, not very elastic bladder. And a tiny urethra (pipe)

Have you seen a urologist to see if there's a problem in your bladder? Unless the amounts are large, you may have a small capacity bladder, or one of zillion other things.

Even vaginal irritation can affect this. So the best thing to do is, as per the usual, get it checked out. Good luck sweetie....peeingastormmorgan

[Mrs. Burschman]

I also was diagnosed with interstitial cystitis. My main symptom of that has been burning urethral pain. My theory is that my entire nervous system is on high alert all the time, including the nerves in my bladder wall. It's just a theory, but that might help explain my irritable bowel, too.

There are plenty of explanations for peeing all the time. I echo Morgan with those famous words: Ask your doc!

Amy

[JaneEyre9]

LoL-- peeingastormmorgan...hahaha

Several years before I was diagnosed with POTS or had any debilitating symptoms, I suddenly had urgent, frequent urination. It was so bad at times, that I could barely make my drive from home to school without feeling like my bladder was going to explode. We are talking EMERGENCY! I noticed I was urinating at least 8-10 times a day, and it was getting in the way of my college classes because I would inevitably have to leave class, which was definitely frowned upon. My point being... I didn't have POTS or know that I had it, so I wasn't salt loading or water loading. In fact, I was drinking the same small amounts of water I always did, but the problem sprang up out of "nowhere."

So I went to a urologist who initially took me seriously because I tested for high protein in my urine at the office visit. But eventually after some more tests, she dismissed it as a false positive and wrote me a nice letter, which I still have, telling me nothing was wrong with me.

Fast forward to my POTS diagnosis, and I find out that the urgent, frequent urination is a dysautonomia symptom. It all finally comes together with my IBS, my dizziness, near faints, high heart rate, "panic" attacks which where actually just adrenaline surges...etc etc.

So, my point is, I think that this urination thing can often be blamed on us drinking a lot of water, but I think that it's another problem entirely with how our bodies handle fluid regulation in the first place. After all, many of us are hypovolemic, so maybe our bodies are fooled into thinking we need to be getting rid of water when actually we should be retaining it. Using Florinef is actually just trying to fool our bodies the other way, into retaining it. Anyway, I'd be really interested to hear other people's ideas or articles that you have read. This has long been an interesting/annoying issue for me. BTW, midodrine made it 10 times worse to the point where I almost had an accident in my friend's dad's car!! Yikes!!

All this talking about urination sort of makes me feel like I need to go now.

Kristen

[doctorguest]

There has been a few studies from Vanderbilt, I believe, suggesting that in POTS, there may be sympathetic denervation (i.e. damage to the nerves of the sympathetic nervous system) of the arteries that supply the kidneys. This in turn may cause poor water/salt absorption, resulting in increased urination and perhaps further loss of blood volume. This to me seems a better explanation than any other hypothetical speculations out there. Of course, there is probably more to the mechanism that has yet to be discovered, but the clinical observation remains: many patients with autonomic dysfunction complain of frequent urination which cannot be explained or justified by the increased water/salt intake.

[yogini]

Interesting. I've noticed that I had to go to the bathroom less frequently when I was on higher doses of atenolol, so I've wondered whether excess adrenaline had something to do with it. And like Kristen I've had the bathroom problem long before POTS...really all of my life. I used to drink a lot of caffeine, so that might have been part of it too...but I don't anymore and still have to pee all the time! Anyway, it is mostly just annoying and embarassing, but I hope they continue to study this issue!

[Sophia3]

This is a very common problem.

NOTHING helped me (not salt, not florinef) Until I tried DDAVP several years ago...take as needed and ALWAYS at nigth...it changed my quality of life and ability to HOLD ONTO FLUIDS.

You can probably do a search about this here on the site.

I am feeling really nauseated now so don't feel like responding in detail.

But this has been my experience. DDAVP is mentioned a couple times in old studies of ANS problems as well.

Good luck

[Guest tearose]

I too don't understand why many of us have this.

I am dealing with this now and have had recurring UTI recently.

It is also frustrating to have a flurry of problems for a spell and then things quiet down and then they flare up again. It would be so nice to have a cause and effect pattern so it could be managed more.

I am going to look into the studies mentioned done at Vandy. Maybe there more information out there.

[flop]

I read something in a medical book at the library (trying to look up POTS but it wasn't in the book!). However the book did have a section on autonomic failure so I read that anyway. It seemed to suggest that when lying flat at night something to do with the autonomic nervous system caused patients to excrete more sodium and water via their kidneys than normal people. It also postulated that the head-up tilting of the bed worked by reducing this "waste" of water and salt and hence raised blood pressure.

It didn't have a specific reference for that paragraph, but the other sources referenced for the page included Dr Grubb, Dr Low and other names that have cropped up on the board.

Flop

[Guest tearose]

Does anyone have any links for this?

This is a current issue for me and I can't seem to find my way through the Vandy website to the research.

thanks for any links or more information.

tearose

[ajw4790]

Hi!

Yeah, I looked for a little bit, and couldn't find much of anything. But, I did find this topic interesting because this has becoming more and more of an issue for myself. I think it may be for me either med side effects or neurogenic bladder kinds of issues; difficulty emptying, increased frequency, and I guess less overall control (but not incontinence). This is definetly something that I wish would get better, or at least not any worse! I would be interested to know more!

Do any meds increase these kinds of symptoms?