frequent urination leading to OI/POTS/NMH?

[sensing progress]

Does anyone have problems with frequent urination? I've had it for a long time and suspect that it is a major contributing factor / cause of my OI. Urinating too much can lead to low blood volume (after all water is the main component of blood) which in turn causes POTS and NIH. Just wondering how common this is and if anyone has treated it successfully with ADH/Desmopressin?

 

[Tia]

have the same thing.. Also have had many Urinary tract infections and candida. Doctors say I'm dehydrated but everything I drink comea out again, the body refuses to keep it so.How do we hydrate then?

 

[ukxmrv]

One doctor I saw said it could be due to Diabetes Insipidus. However, I "only" get this at night and have not had treatment for this (I'm in the UK so left to rot)

http://en.wikipedia.org/wiki/Diabetes_insipidus

 

[Min]

I have really bad interstitial cystitis, it drives me frantic 24/7

http://www.ic-network.com/forum/index.php

 

[alice1]

I had frequent urination for years then suddenly it just stopped last year.
It started up again recently but so did my candida.I'm on treatment and diet for the candida so if I notice less bathroom time I'll let you know.

 

[helsbells]

I too have had IC for years, liquid goes straight through me, but increasing salt to help retention caused other problems. Couldn't do meds for retention as don't want to aggravate actual bladder pain which is also a symptom for me not just frequency/urgency

 

[Cloud]

I have heard that frequent urination is fairly common with ME/CFS.

I do something a little different....Many times I can tell when a flare is coming on by the first symptom of excessive urine output. I will have 2-3 times more going out in just a few hours than what I took in over the previous 1-2 days. I'm never thirsty and have to force myself to drink enough H2O....so, I know it's not diabetes. I've always considered it to be a malfunctioning HPA and part of this disease.

 

[richvank]

Hi, all.

Here's a repost of something I wrote about POTS a few months ago. I hope it will be helpful.

Rich

In my view, there are three things that occur in CFS that are likely contributors to POTS:

1. The total volume of blood in the body is often lower than normal. This likely results from a "mild" diabetes insipidus (not the same as diabetes mellitus) which is often present in CFS. This in turn is caused by lower than normal secretion of antidiuretic hormone (ADH) by the hypothalamus/pituitary. In my hypothesis, this is caused by glutathione depletion in these organs. The low ADH secretion causes the kidneys to dump too much water from the blood into the urine, and that lowers the total blood volume. People with diabetes insipidus have high 24-hour urine volumes (sometimes much higher than the normal average of 1.5 liters per day), and they usually have constant thirst. They drink a lot of fluids, but can't keep up with the loss of water into the urine, so they run at lower than normal total blood volume all the time. The osmolality (depends on concentrations of solutes, including the electrolytes) of the blood is higher than normal, and the osmolality (and specific gravity) of the urine is lower than normal.

The low total blood volume causes the venous return of blood to the heart to be lower than normal, and that lowers the stroke volume, since the heart can pump out only what it receives. The cardiac output (the product of the stroke volume and the heart rate) is particularly lowered when standing, because of the additional effect of gravity. Low cardiac output prompts the autonomic nervous system to speed up the heart rate in an effort to raise the cardiac output and deliver more blood when standing, and that constitutes POTS.

2. Most people who have CFS have dysfunction of the HPA (hypothalamus-pituitary-adrenal) axis. This causes the cortisol output to be abnormal, usually too high in the early part of the illness, and then dropping down to be too low later in the illness. This interacts with the secretion of adrenaline (epinephrine), and noradrenaline (norepinephrine). Among other things, these hormones control the operation of the heart and the circulatory system. This dysfunction may also contribute to POTS. In my hypothesis, this dysfunction is also due to glutathione depletion in the hypothalamus and pituitary.

3. Many people with CFS have diastolic dysfunction of the heart. This means that the main pumping chamber of the heart (the left ventricle) does not fill with enough blood during the diastolic phase of the heart's cycle, and that also limits how much blood is pumped out (stroke volume). A low stroke volume again prompts the autonomic nervous system to speed up the heart rate in order to raise the cardiac output. Diastolic dysfunction is caused by too low a rate of supply of ATP to the heart muscle cells by their mitochondria. In my hypothesis, this is caused by glutathione depletion in the heart.

The bottom line is that glutathione depletion can explain all of these aspects as well as many more aspects of CFS. In recent years, we have found that the glutathione depletion in CFS is linked to a dysfunction in the methylation cycle, and that lifting the partial block in the methylation cycle will restore glutathione and correct many of the aspects of CFS. If you want to read more about this, you can find information at www.cfsresearch.org.

 

[illsince1977]

I, too, urinate too much and am thirsty most of the time (though the thirst is less now than it was for years - no idea why).

 

[CBS]

Hi, all.

Here's a repost of something I wrote about POTS a few months ago. I hope it will be helpful.

Rich

In my view, there are three things that occur in CFS that are likely contributors to POTS:

1. The total volume of blood in the body is often lower than normal. This likely results from a "mild" diabetes insipidus (not the same as diabetes mellitus) which is often present in CFS. This in turn is caused by lower than normal secretion of antidiuretic hormone (ADH) by the hypothalamus/pituitary. In my hypothesis, this is caused by glutathione depletion in these organs. The low ADH secretion causes the kidneys to dump too much water from the blood into the urine, and that lowers the total blood volume. People with diabetes insipidus have high 24-hour urine volumes (sometimes much higher than the normal average of 1.5 liters per day), and they usually have constant thirst. They drink a lot of fluids, but can't keep up with the loss of water into the urine, so they run at lower than normal total blood volume all the time. The osmolality (depends on concentrations of solutes, including the electrolytes) of the blood is higher than normal, and the osmolality (and specific gravity) of the urine is lower than normal....

Hi Rich,

We've crossed paths on a number of posts concerning POTS/OI & blood volume and so you probably know that I agree wholeheartedly with your assessment of abnormally low ADH and a "mild" form of diabetes insipidus in a large number of ME/CFS patients (I don't profess to have a thorough understanding of the exact mechanism and I have not tried the glutathione depletion protocol - in part as my now florid DI and POTS/OI is well controlled using desmopressin).

I just wanted to add that for many, the "mild" form of DI actually presents in an episodic pattern, one that is perhaps characterized by chronically subclinical DI with brief cascades of ADH levels that lead to a more pronounced and short-lived pattern of rapid fluid loss superimposed on the less than optimal sub-clinical state.

Additionally, the impact of the vaso-constrictive properties of ADH (aka vasopressin) and its absence may very well be underestimated in ME/CFS patients, with regard to circulation and perhaps other functions such as short term memory formation and motility of the digestive tract.

 

[sleepy237]

Yes I have had too, never thought right up until this minute that could be a factor. Had the frequency for over five years cfs acute onset three

 

[sensing progress]

Yes I have had too, never thought right up until this minute that could be a factor. Had the frequency for over five years cfs acute onset three

I think the problem with frequent urination has significant implications for possible treatment interventions. I'm pursuing it now, hoping that I can find a doctor who will try treating with ADH/Desmopressin. Has anyone else on the forum besides CBS been treated with those?

 

[Carrigon]

Dr. Cheney once wrote some article about this. There's a reason we lose too much water and how it triggers and factors into the POTS. What I can tell you is, lately, for some reason, I've been losing less water and my POTS attacks are less frequent. I can stand for longer periods of time. I use alot of real salt on my food and in my cooking. And I avoid garlic. There are a few things I do that has made it better.

 

[Cloud]

OI with POTS and NMH, used to be my worst symptoms. I couldn't stand still more than 30 seconds...systolic would drop 40 points and pulse go up 40 and very irregular with constant palpitations, dizzy, faint, nauseous. I couldn't even sit in an upright position without increased symptoms. I've seen the BP drop to 76/48 and pulse up to 180 and very irregular. Would have flunked a Tilt Test for sure. Lots of time in bed. Some embarrassing moments laying in the floor at the bank, etc. Went through all the meds...Florinef, Midodrine, with no success. Found the best was Cheney's Gookinaid http://www.dfwcfids.org/healing/gokhmbrw.htm#homebrew

For myself, the severe OI, POTS, and NMH were downstream problems that have improved dramatically following anti-viral Tx. My blood pressure is stable now (unless I crash) and endocrine values mostly normal range.

 

[sleepy237]

Cloud thanks so much for the link, havent tried prescription meds as reactions have been varied and many. Much appreciated.

 

[Cort]

Sometimes I have it in the day but I almost always wake up 2/3 times at night to go....One person suggested that in FM that was due to oversensitivity of the bladder - it reacts too quickly to fluid - its all part of the hypersensitivity stuff.....I have no idea if that's true but I'll throw it out there as well.

 

[ukxmrv]

Cort, I can't see how the "sensitive bladder" theory works for those who mainly have this problem at night?

Ideas very welcome. My sleep is disrupted badly by this. I don't drink any fluid in the evenings if I can get away with it.

 

[velha508]

I have an irritable bladder too - I'm fairly sure mine is related to yeast allergy as it has gone away multiple times when on oral antifungals, but it always comes back afterwards.

I used to have symptoms similar to diabetes insipidus - thirsty and lots of urination (separate from the painful bladder), but this has cleared up on Fred's protocol.

Velha

 

[klutzo]

My first dx was Fibro, and I was also told I had Neurogenic bladder, ie. overly sensitive.

A CAM practitioner I went to had my hair analyzed for minerals, metals, etc.. The report said I had a severe calcium/magnesium imbalance that should result in bladder constriction and reduced capacity with frequency and urgency. I had no deficiencies; in fact my red blood cell Mg was above normal, but still out of balance with my CA. I also get bladder pain that prevents sleep, esp. early in the morning. I feel that is related to my low back pain, since changing position often relieves it.

I was told by the doc that normal bladder capacity is 2 cups. So, I started peeing in a large measuring cup to test this idea. My capacity turned out to be 1/2 cup during the day, and 3/4 cup at night. No wonder I pee so much. This would be an easy idea for some of you to try out to see if capacity is your problem.

I take supplemental magnesium 3 X daily, but dairy products are my main protein source. I've been a lacto-vegetarian most of my life. I'd say that was the source of my problem, but I know so many others who have this problem and do not eat dairy products at all or take calcium supps.

I personally know two people who have tried desmopressin and had scary problems with it. One of them took one dose and did not pee for 24 hrs. so she never took it again. The other took one dose and did not pee for more than 48 hrs. and started throwing up water. Death is possible if that continues. He would not take another dose either after that.

Dr. Teitlebaum says if you have Fibro, you should just continue to "drink like a fish and pee like a racehorse", because the DI is so mild that the meds are too strong for it. I noticed one poster above is getting great results with desmopressin, so it may be worth it if you have severe DI. One of the people I know that tried the drug was only peeing 8 times a day. I would love that. I pee about 20 times a day.

If you have this problem and ever have to do any 24 hr. urine collection lab tests, please remember to insist on two jugs from the lab. I had to do a test over because I did not realize how much output I had. When I saw how fast the jug was filling up, I tried not to drink and got so thirsty I could not sleep ,but I still only lasted 20 hours before filling the one jug the lab gave me. I almost fill two of the jugs if I drink as I normally do. That is supposed to be a clue that you may have DI.

klutzo

 

[CBS]

I personally know two people who have tried desmopressin and had scary problems with it. One of them took one dose and did not pee for 24 hrs. so she never took it again. The other took one dose and did not pee for more than 48 hrs. and started throwing up water. Death is possible if that continues. He would not take another dose either after that.

Dr. Teitlebaum says if you have Fibro, you should just continue to "drink like a fish and pee like a racehorse", because the DI is so mild that the meds are too strong for it. I noticed one poster above is getting great results with desmopressin, so it may be worth it if you have severe DI. One of the people I know that tried the drug was only peeing 8 times a day. I would love that. I pee about 20 times a day.

Klutzo,

Regarding desmopressin, I could not agree more with the advice to proceed with caution and only under the supervision of a doctor familiar with DI. Desmopressin is a powerful drug with real dangers (in cases where it has been used inappropriately it has caused brain damage and death) if not used appropriately. Urine output should never cease completely.

People with DI actually tend to have enlarged bladders (having to "hold it" is an inescapable part of untreated DI) but often don't recognize the increase in volume as the bladder enlarges over a period of months to years. Both frequency and volume are increased with severe DI. Mild DI is a conundrum as there is little to no advice on dosage or scheduling. Dr. Cheney talked about increased fluid and sodium intake for "mild cases" in the interview posted on ProHealth in 2002: http://www.prohealth.com/library/showarticle.cfm?libid=8361

[desmopressin, vasopressin and DDAVP are forms of the same drug - synthetic forms of Anti-Diuretic Hormone (ADH)]

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4) If symptoms have not improved or have become worse ask your doctor to check you for Diabetes Insipidus (DI). (This is not the same condition as the more familiar Diabetes Melitus in which the pancreas does not produce enough insulin. Diabetes Insipidus results when the pituitary or hypothalamus are not functioning normally. The only thing the two conditions have in common are the symptoms of excessive thirst and frequent urination.)​

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If the DI test is positive, Cheney usually treats it with Vasopressin nasal spray. Cheney finds that about 50% of CFIDS patients show low-level DI. (Not surprising, given that the HPA axis - hypothalamus/ pituitary/adrenal - is suppressed in CFIDS.) Low level DI might respond to salt and water and licorice treatment. High level DI will not respond at all to those treatments, and without Vasopressin those patients cannot keep their blood volume up high enough.
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Based upon my own experience and conversations with several other patients, I suspect that DI begins in a form that is more intermittent than "mild." If this is the case, the nasal spray makes a lot of sense in that it acts much more rapidly than the tablets (which would ensure effectiveness during an episode of fluid loss versus 30-60 minutes after fluid loss begins). The newer form of Rhinal DDAVP can be titrated precisely at extremely low levels. The nasal spray is a fixed dose - 1 puff from the nasal spray usually equals 5 or 10mcg Desmopressin depending upon how the spray is metered). Again, I strongly recommend against going down this road without a doctor who is experienced with DI and its treatment.