Symptom Survey Responses Indicate Cardinal Symptoms of CFS

[fresh_eyes]

This discussion is extremely interesting. Throughout my adult life (including pre-CFS) I've felt as if I have a UTI to one degree or another, but I don't. Also as I've mentioned elsewhere, the one thing I've found that helps with my CFS is liver flushing, which involves taking large quantities of magnesium in the form of Epsom Salts. Hmm...

 

[xlynx]

Thanks for all that info, Klutzo!

I used to wee about ten times a night but I increased my magnesium supplement to a very high dose (not knowing anything that Klutzo has explained here) and now I only go about twice a night, which I can live with.
I hadn't really thought about it till reading this thread. I don't know if this means I have the situation that Klutzo described. I've never had pain.

My bladder capacity seems to vary greatly. Sometimes I think it can hold a normal amount of urine but other times I have to go frequently and pass hardly anything. Has anyone else had that?

Hi Athene,

What would you say is a high dose?

I am taking about 600mgs orally and still waiting for my magnesium cream to arrive!

My doctor said to take 1000mgs but cant do it for loose stools.

Thanks

 

[Sushi]

Rich Van Konynenburg has written a lot about diabetes insipidus. Yes, that second jug for the 24 hour pee is a giveaway! I'll repost something Rich wrote earlier as I didn't see his input on this thread--hope he doesn't mind! I've extracted from 2 different posts which had different foci, and there is more to the story, but for brevity I am only posting parts. Hope this doesn't distort the picture he is painting:

"One good clue as to whether you have DI would come from collecting your urine for a 24-hour period in a big jug. If you produce more than about 2.5 liters in a day's time, that's very suggestive of DI. I know of one case where the fellow was producing 7 liters per day, but that's unusual in CFS. Usually it's quite a bit less. The average for healthy people is about 1.5 liters per day.

There are a couple of ways to diagnose DI. The nicest one, from the standpoint of the patient, is to run a blood test for vasopressin. If it's below normal, the person has central DI.

However, doctors prefer to do the water deprivation test, which is a lot less fun for the patient, but is considered more definitive. In that test, they don't let you drink any water, and they keep collecting your urine. They measure the osmolality of the urine and the blood, and they keep going until you either have no change in low osmolality of the urine, or you lose a certain percentage of your total weight because of the water you are urinating out. Then they give you some desmopressin and monitor your urine osmolality after that. It goes up if you have DI.

One reason why they like this test is that it will differentiate between the people who have DI because they don't make enough vasopressin and thus are losing too much water and have to replace it, those who drink too much water because their thirst receptor threshold is off, and those who drink too much water for a psychological reason....

And from another post: "Many PWCs have a low total blood volume compared to normal, which I suspect is due to mild diabetes insipidus (not the same as diabetes mellitis). I think the diabetes insipidus in CFS is caused by glutathione depletion (secondary to methylation cycle block) in the cells of the hypothalamus that synthesize arginine vasopressin (antidiuretic hormone).

This causes the kidneys to excrete more water than normal into urine. This produces thirst and high fluid consumption, but it is unable to keep up with the excretion of water, so the total blood plasmas drops, and the person becomes hypovolemic (low blood volume). Now, I suspect that the kidneys then lower their production of erythropoeitin, which causes the bone marrow to slow the production of new red blood cells. If it didn't do that, the blood viscosity would rise, and that would cause problems with circulation.

PWCs also usually have a normal red blood cell count (sometimes a little low with somewhat large red blood cells (macrocytic), but usually still in the normal range). The blood count is a measure of the number of cells per unit volume of blood. So if the total volume is low and the RBC count is normal, that says that the total number of red cells is low, also.

Now, if the person treats to lift the methylation cycle block, the glutathione level in the hypothalamus should come up. This should raise the secretion of vasopressin, which should cut down on the daily urine volume. That should raise the volume of the blood serum, which in turn should cause the kidneys to put out more erythropoeitin, which will signal the bone marrow to produce new red blood cells at a faster rate. Since lifting the methylation cycle block also unblocks the folate cycle, there is now more of the particular folates needed to make new RNA and DNA, which are needed to make the precursors to red blood cells. The upshot of all this is that the rate of production of red blood cells will go up, which will demand a higher rate of production of hemoglobin. Hemoglobin, of course, requires iron. There's the increased demand for iron."

 

[klutzo]

Thirst, dizziness, palps

Hi Maxine and anyone else interested,
First, Maxine, have you thought about using the cartoon Maxine as your Avatar? I LOVE her and if I were you, that is what I would do. She is a hoot!

Back to business.....most people with this problem are thirstier than normal. I ran an FMS/CFS support group for ten years, and people always came to group with their giant drink cups or bottles of water. Most said they took them with them everywhere.

However, knowing how doctors depend on lab results to protect them from malpractice suits that might result from clinical diagnosis, I doubt that anyone would be diagnosed with diabetes insipidus just because they are thirsty and peeing a lot. You would need abnormal electrolytes on basic labs just to get most docs to test you for D.I., the exception being LLMD's, who almost always test for this, IME. Then your ADH test would have to be abnormal.

As far as dizziness is concerned, being dehydrated can certainly cause that, and it may also cause your head to pound when you stand up. I've had it get so bad, that when I stood, my head would pound hard enough that my hearing would disapper on each downbeat of my heart. My hearing would litearlly go in and out with my heart beat until I got used to being upright. That clued me in to go drink an entire glass of H20 right away.

But, in CFS, the usual cause of dizziness, IMO, is some form of orthostatic hypotension. This is due to that pesky autonomic nervous sytem being out of whack once again. Thirst can figure in this, because low blood volume is a factor in causing it, and you need to drink more when your blood volume is low. If you have been diagnosed with an MVP (mitral valve prolapse), you can take it to the bank that your blood volume is too low, so drink up! Other common types of orthostatic hypotension are POTS (postural orthostatic tachycardia syndrome) and NMH (neurally mediated hypotension). In the first case your heart beat speeds up too much when you stand (tachycardia), often in an attempt to get blood to your brain. In the second case, your systolic (the top number) blood pressure fails to rise like it should when you stand, and often falls. The degree of the fall is considered (along with the pupil test) to be a good indicator of adrenal fatigue. For eample, mine falls as much as 50 pts. when I stand, whereas in a normal person, it should go up 10 pts. That indicates severe adrenal fatigue, and the only reason I don't pass out is that I start out with blood pressure that is too high, so it only falls to normal. Most of you probably know all this stuff already.

Magnesium definitely helps with palpitations and it helps prevent dangerous arterial spasms as well, a hazard esp. in cold weather. If you have an MVP, I would consider magnesium and plenty of H20 to be essential. It also helps with constiptation, so if you have the opposite problem, choose the citrate form not the oxide form....you can take less since it is better absorbed, and it does not cause diarrhea as badly.

Disclaimer: I am not a doctor, just a long tem patient like all of you who studied Naturopathy for a couple of years and worked in a hospital for many years before this crud knocked me out of the work force.

klutzo

ETA: Sushi - sorry I repeated some of your info. You were posting while I was typing mine! Rich's info is much more scientifically oriented as befitting his research status...so go with what he said if it conflicts with what I posted.

 

[Robin]

bladder training

This is so interesting. I have low blood volume; you get that tested at a Nuclear Medicine lab. They tag your red cells with something (I forgot, an isotope?) and then count them, and somehow extrapolate how much blood you have.

I have to pee a lot too. If you don't have a complicating factor such as IC or an infection, another option is bladder training. It's designed for with urinary incontinence, but, helps with frequency too.

You basically keep a diary about how many times you go a day, and your volume when you do (you count how many seconds you go for to determine volume). Then, every time you need to go, you wait 10 minutes or how ever long you can, and then go. Over time, you train your bladder to hold more urine and thus have to go less often.

I was going 15-17 times a day and 3 times at night and cut down to 7 times a day and once at night!

 

[Hysterical Woman]

Frequent urination - vit D?

http://www.ehow.com/about_5372765_adverse-side-effects-vitamin-d.html

Hi All,

Because we have been discussing the frequent urination thing and possible causes here I thought I would post this link. It suggests that too much D3 can also cause frequent urination. I am not at all sure about this specific web site, not sure how accurate it is or how much of it I believe. It's just an FYI for those of you who might want to follow it. If you google frequent urination and Vit. D you will get other hits.

Take care,

Maxine

 

[Martlet]

Additionally, a certain type of heart palpitation - supra ventricular tachycardia - can cause frequent urination, due to the release of atrial natriuretic factor.

 

[klutzo]

High dose Magnesium

Hi Athene,
I hope you are not taking more than 1,200 mgs. daily. That is considered dangerous to your kidney function.

Also, nobody with kidney problems should take ANY Mg without asking their doctor.

Regards,

klutzo

 

[klutzo]

Paroxysmal Supraventricular Tachycardia

Hi Martlet,
THANK YOU! You have probably just solved the mystery of why my peeing problem doesn't improve despite lowering calcium supplements, or practicing holding it longer like Robin suggested.

I have a vicious problem with PSVTs combined with Lyme panic attacks, though it is mostly under control with Verapamil, Xanax, Clonidine, L-tryptophan and severe limits on the activities that tend to set off attacks. I wonder why my cardiologist never mentioned this. Doctors!

Thanks so much for the info,

klutzo

 

[Hysterical Woman]

Klutzo

Hi Maxine and anyone else interested,
First, Maxine, have you thought about using the cartoon Maxine as your Avatar? I LOVE her and if I were you, that is what I would do. She is a hoot!

Back to business.....most people with this problem are thirstier than normal. I ran an FMS/CFS support group for ten years, and people always came to group with their giant drink cups or bottles of water. Most said they took them with them everywhere. ...

.

Hi Klutzo,

I haven't thought about using Maxine as my avatar - but I love her cartoons. We...er....are actually a good bit alike, that Maxine and me Thanks for the idea, I just might do that.

And thanks for the info re diabetes insipidus. I am curious as to whether I might have a problem with it and will consider taking some of the tests you mention (as long as they aren't too expensive). Is there such a thing as an inexpensive lab test??

I don't, however, have a lot of thirst, just frequent urination, or at least it seems so to me. For years I have had to get up a couple of times during the night and sometimes even more. I had thought that it might be the elavil that I take for sleep and pain. I have over the last few months been able to reduce my dose from 30 mg to just 5 mg and the reduction seems to be helping some - now maybe getting up only once a night.

Take care,

Maxine

 

[klutzo]

Peeing a lot

Maxine,
I took Elavail the first 7 months of my illness and all it did was make me jittery and pack on the pounds so fast I could not believe it. I have not taken it for the past 23 1/2 yrs., but I still have to pee all the time. I doubt that is your problem. It seems to be common with these illnesses. I guess it would be worth tapering all the way off Elavil to find out though, since you are down to such a tiny dose already. Stranger things have happened.

I just learned on another thread that there is an even better test for diabetes insipidus than ADH. It is called vasopressin. It is a blood test, just like ADH. The problem is most primary docs don't know how to interpret these tests and will tell you to go see an Endocrinologist to have them done. IME, many Endos handle diabetes mellitus all day long, and rarely see diabetes insipidus, so they may not know much more, but it's worth a try. It is just a blood test, and as long as they code it correctly, ins. should pay.

klutzo

 

[CBS]

DI - Neurogenic

Hi Everyone,

I have florid Diabetes Insipidus (DI). For about four years my urinary output was very erratic. We measured output for other reasons and my volume was always either 1500-1800 ml or 3500-4500 ml. This was always a matter of curiosity but my docs never went much further than that.

In the fall of 2008 things started to change dramatically. My episodes of frequent high volume output became more frequent (4-5 days a week up from maybe 1-2 a week) a week and would last longer (6-7 hours instead of 2-3 hours).

DI which can develop over a course of years often results in a large bladder. Your urinary volume will be in the 600-1200 ml per void range. Average for someone with normal output is roughly 300-400 ml. and somewhere around 3-5 times a day.

When things hit their worst (before finally being diagnosed and starting on DDAVP/desmopressin) I had a week where my output was 7 GALLONS a day!

Diagnosis is much more complicated than just vasopressin or ADH levels (they are the same thing). Vasopressin levels can be suppressed to ZERO by over consumption of water (a potentially dangerous state). In order to Dx DI you'll need to be seen by a doctor that knows how to conduct a water depreivation test and has extensive experience with DI. Endocrinologists with experience in pituitary (posterior) and hypothalamic function are strong candidates but neurologists specializing in traumatic brain injury are also well versed as many cases arise from auto accidents (a quick for and aft movement of the brain can damage the pituitary stalk - no functioning stalk and no pit to release the vasopressin).

If you take desmopressin or DDAVP (a nasal form - also available as an injectable) and can't pee - STOP TAKING IT and lower your H20 consumption for a day. Desmo and DDAVP wear off in about 12 hours (I know - I've missed doses, most recently last week and I turned into a fountain at a movie - so much for making the effort to get out for an evening). This is called washing out. If you have florid DI (and you'll know it), getting caught without your meds can be a bit stressful but the first thing to do is to replace the fluids you're losing with water - up to a liter per hour (and get to you rmeds ASAP). I have back-up meds in both cars and at my in-laws.

Do I think that most people with CFS have full blown DI? Nope, at least not in its florid form. As a couple posts have noted, treating for DI when it isn't present can be life threatening (fluid buildup and water intoxication leading to burst cells in the brain). No doctor who knows what they are doing is going to give out meds for DI without a strong warning and careful urinary analysis (primarily sodium levels - too dilute and you're over medicating or don't need it). I had my electrolytes checked daily for two weeks and then once a month, now once every three months. Every several months I deliberately stop taking my meds (on a day when I know I am not going anywhere) and I wash out on purpose. This gives me a good sense of whether or not I'm at the right dose (and even if I still need the meds). 25% of DI cases are idiopathic (no identifiable cause). Rarely, DI can spontaneously resolve.

Do I wonder if many people with CFS have fluid imbalance issues? Absolutely. Is this a mild form of early DI? I wonder. Would I recommend treating this with desmopressin? Only very rarely. Increase your fluid intake.

I do wonder if much of the hypotension associated with CFS is actually caused or made worse by low levels of ADH (very mild DI) and resultatnt low blood volume? Absolutely! For years I managed this with increased levels of H20 but only when I was thirsty (which was often). An interesting feature of DI is that people often crave COLD drinks. I was filling my glass with ice even in the winter. I almost never wanted anything that was warm. I'd be out for dinner and have 8-9 refills. I didn't have to pee as often as you might think. On ultrasound we found that my bladder was huge (over 1.5 liters). It was so big that the tech couldn't find it (it was like trying to read the writing on a billboard while standing 2 feet away).

So what would I do if I had CFS and thought that I had DI? There are signs. Asking for 2 collection jugs when doing a 24-hour urine sample is reason for suspicion but in my case the output was highly variable for years. POTS is also reason to wonder (my POTS cleared up entirely after treating the DI). Low blood volume when uncompensated leads to hypertension. When the low volume gets to a critical level, your BP may actually jump or become erratic (your body is trying to squeeze the circulatory system down so that the four liters of blood you have is adequate to circulate in your five liter vascular system - pressure is required for adequate blood flow, lack of pressure is called shock). Your HR can also become erratic as your system tries to move the lower blood volume around your body more quickly. This can cause some mildly lower blood ox levels (80% versus 95%). Also, for years I had very dry cracked and bleeding fingers and feet. It was worse in the winter but I still could not go without socks in the summer. Also very dry lips. These cleared up almost immediately once I was properly hydrated (before being Dx and treated I thought I was taking in enough fluid but in retrospect I wasn't).

Another sign that DI is an issue is the effect of an IV. Several times before being diagnosed I had gone to the ER because I just could not sit up without profound dizziness and my HR/BP were erratic. They'd scratch their heads and then say "you look a bit dehydrated and your lips are dry so lets give you an IV." One to two liters later I'd feel a thousand times better, my BP and HR was down and I could walk out of the ER without feeling like I was going to faint. Go figure. Lastly, the ER repeatedly checked by hematocrit level as a measure of dehydration. It was always normal and so I was told that I could not be dehydrated. I don't know why but hematocrit levels as an indirect measure of hydration were entirely inaccurate for me (high levels would have meant that I was dehydrated).

This is a really tough diagnosis and endocrinologists/neurologists are very cautious about giving this diagnosis. Tons of questions about symptoms and history as well as a lot of tests.

Know that there is a form of DI that is caused by compulsive water consumption (Psychogenic DI or polydipsia) and that is going to be the doctors' first thought. Do not go into see your doc and insist this is what you have. Do not focus on all of the minor details and do not get upset if the seems to be skeptical at first (We should all be good at this by now). May I suggest focusing on being dehydrated and having to pee a lot.

A proper water deprivation test involves an overnight stay as an inpatient. They will monitor you very closely, including restricted fluid intake, urinary output ("ins and outs"), body weight, electrolytes and anything else (including making sure you don't drink from the bathroom faucet) that seems key.

The may give you a very small dose of desmopressin to see if it impacts your pattern of urinary output.

From my personal experience, mild or intermittent cases are nearly impossible to diagnose. In these cases, a water deprivation test is very unlikely to be positive.The good news is that in these cases, increased H20 consumption should be enough to provide significant relief (Dr. Klimas stressed the importance of fluid intake in her PANDORA talk - "If I have 5 liters of blood volume, CFS patients have 4.") Some docs will treat mild and intermittent cases with increased fluid intake and electrolyte monitoring.

I strongly suspect that mild DI will be found to underlie a significant portion of the CFS patients with POTS. My advice is to drink lots of h20. Keep tabs of how frequently you have to urinate and the volume (high frequency and low volume is not likely to be DI), and be prepared to talk with your doc about this in a calm matter. For what it is worth, a low dose of desmopressin is 0.1 mg twice a day. Average does is 0.3 to 0.5 mg a day (divided into two doses - once before bed - so you don't wake up having to pee - another sign that DI might be an issue - and once around mid-day).

My docs think that my DI was caused by viral encephalitis and a posterior pituitary cyst which has recently increased in size.

Good luck and feel free to ask any questions.

Shane

 

[Hysterical Woman]

Klutzo

Maxine,
I took Elavail the first 7 months of my illness and all it did was make me jittery and pack on the pounds so fast I could not believe it. I have not taken it for the past 23 1/2 yrs., but I still have to pee all the time. I doubt that is your problem. It seems to be common with these illnesses. I guess it would be worth tapering all the way off Elavil to find out though, since you are down to such a tiny dose already. Stranger things have happened.

I just learned on another thread that there is an even better test for diabetes insipidus than ADH. It is called vasopressin. It is a blood test, just like ADH. The problem is most primary docs don't know how to interpret these tests and will tell you to go see an Endocrinologist to have them done. IME, many Endos handle diabetes mellitus all day long, and rarely see diabetes insipidus, so they may not know much more, but it's worth a try. It is just a blood test, and as long as they code it correctly, ins. should pay.

klutzo

Hi Klutzo,

Thanks for your response and words of wisdom. Sorry to hear that you had such a problem with elavil, it sounds like the symptoms I had when my doc put me on prozac early on - what a nightmare!! Do you know what your original dose of elavil was? At least my doc was smart enough to put me on a very small dose to start with (originally 5 mg). Many docs will try to give cfs patients a dosage of about 50 mg to start - I think that is what they start with for depression.

That tiny dose of elavil was a godsend for me then. I had been ill about 6 months and had not slept more than 4 hours a night for that entire time - I was a wreck and still trying to work. The second night I took it, I was able to sleep for about 7 hours straight. It also helped the pain (mostly in my legs). Over the years I gradually increased it to 30 mg to get the same effect. It has caused great weight gain for me too, which I hate, but everytime I tried to reduce the dose the insomnia and pain came back full force.

I have now been able to reduce the dose all the way back from 30mg to 5mg just from taking magnesium! I wish my doc had just put me on magnesium to begin with, but they don't do such things. And it is impossible for me to know if the magnesium would have worked at that time when my illness was new (1991).

You could very well be right and that elavil is not causing the frequent urination problem. I began to look at the statement I wrote last night about only having to get up once a night to pee, but that's not true, it is still more than that. But if a very small dose is helping my cfs symptoms, then a very small dose could be causing side effects too. I tried to reduce my dose down to 2.5 mg a while back. But it was right around the time that the XMRV news hit along with some physical stressors in my life at the same time, so I decided it wasn't the best time to experiment with reducing the dose further.

Thanks for the information about a better test for diabetes insipidus. I still have questions about whether that might be a problem for me because I don't have any increased thirst. Do you know if the vasopressin is a test for all kinds of D.I. (isn't there more than one type)? I need to wait until after the first of the year to have it done. A shame that primary care docs can't figure out how to intrepret the test. I will have to find a new endocrinologist which I am not looking forward to. The one I saw years ago (in Philly) basically told me to just get into a graded exercise program and I was welcome to come back and see him, but not too frequently! Ya gotta love it!


Take care,

Maxine

 

[CBS]

Thanks for the information about a better test for diabetes insipidus. I still have questions about whether that might be a problem for me because I don't have any increased thirst. Do you know if the vasopressin is a test for all kinds of D.I. (isn't there more than one type)? I need to wait until after the first of the year to have it done. A shame that primary care docs can't figure out how to intrepret the test. I will have to find a new endocrinologist which I am not looking forward to. The one I saw years ago (in Philly) basically told me to just get into a graded exercise program and I was welcome to come back and see him, but not too frequently! Ya gotta love it!


Take care,

Maxine

Florid DI occurs at a rate of about 1 in 25,000 patients. Even rarer, some cases of DI can impact your "thirst center," resulting in no increase in thirst in spite of large volumes of fluid loss. There are several type of DI (Central or neurogenic, nephrotic and psychogenic). Note that most endocrinologists are not qualified to interpret a water deprivation test, especially in borderline cases.

 

[Hysterical Woman]

Arrgghhh!!!

Note that most endocrinologists are not qualified to interpret a water deprivation test, especially in borderline cases.

AAAAAAAAAAAAARRRGGGHHHHHH!!!!!!!!!!!! OK, I am back to being an hysterical woman!

Sigh, Thanks for all the information re D.I., Come Back.

Maxine

 

[Hysterical Woman]

Klutzo/Maxine Cartoon

Hi Maxine and anyone else interested,
First, Maxine, have you thought about using the cartoon Maxine as your Avatar? I LOVE her and if I were you, that is what I would do. She is a hoot!

.

Hi Klutzo,

Does this work?

Thanks,

Maxine

 

[klutzo]

Thank you Come Back Shane

Dear Come Back Shane,
Thank you SO much for the excellent and expert info on Diabetes Insipidus. I had no idea ADH and Vasopression were the same.
I wish everyone who has the peeing problem, which is most CFS and FMS people I know, could read your post above. IME, most of our doctors call it "irritable bladder".
Even though I need 2 jugs to pee in, and I had a severe head injury in a car accident of just the type you describe (I had a hematoma on my head the size of a large grapefruit), I have a teensy bladder capacity, and it has not gotten larger like you say it would with D.I., even after 24 yrs. of this problem. I can't imagine having my bladder get as large as yours did. I imagine that must have hurt somethng awful, pressing on surrounding organs.
I am very sorry that you have such a severe problem. It makes our having to pee a lot seem like nothing to complain about at all. I hope you can keep it under control and live long and prosper!

klutzo

 

[klutzo]

Maxine!

Dear Maxine,
That's a great Maxine in your signature! Wish I could have that cup of coffee she's holding. Coffee in the morning is one of the many things I miss about having this disease. I don't really even like the stuff, but just being able to walk around with a cup of java makes me feel more like a "normal" person. It's a cultural icon.

Heres' to Maxine and her great wisdom,
klutzo

ETA - In my excitement over seeing your Maxine avatar, I forgot to answer your Elavil question. I was on 25 mgs., lowered it to 15 due to the heart palpitations it caused, and went off after 7 months. I needed Restoril to sleep at first,then cut down to a small dose of xanax. I took Darvocet for pain for the first 12 yrs. then went off it the hard way. I do not take any pain meds now.
I am still ANGRY that my doctor violated the Hippocratic oath, IMO, by not telling me that the Elavil could make me obese. I walked into his office as a normal weight person with a diagnosis of fibro, and 2 months later his treatment had given me the life-threatenting condition of obesity. It never occured to me that a doctor would give me a drug that could harm me like that, without even warning me. I was new to the world of chronic illness, and would have stopped the drug immediately, if I'd realized it was causing the weight gain. I assumed it was the illness, because a doctor would never hurt me like that. Now I know better, but I am still 50 lbs. overweight, since my thyroid went wacko from the fibro as well. I take medicine for it, but still have hypothyroid symptoms like many of us and can't get the weight off unless I eat less than 900 calories per day, which is dangerous. You are lucky, since Elavil only helps 15% of us, from the stats I've seen. I am sorry you gained weight too. It sucks.

 

[CBS]

Large volume and an even larger bladder

Dear Come Back Shane,
Thank you SO much for the excellent and expert info on Diabetes Insipidus. I had no idea ADH and Vasopression were the same.
I wish everyone who has the peeing problem, which is most CFS and FMS people I know, could read your post above. IME, most of our doctors call it "irritable bladder".
Even though I need 2 jugs to pee in, and I had a severe head injury in a car accident of just the type you describe (I had a hematoma on my head the size of a large grapefruit), I have a teensy bladder capacity, and it has not gotten larger like you say it would with D.I., even after 24 yrs. of this problem. I can't imagine having my bladder get as large as yours did. I imagine that must have hurt somethng awful, pressing on surrounding organs.
I am very sorry that you have such a severe problem. It makes our having to pee a lot seem like nothing to complain about at all. I hope you can keep it under control and live long and prosper!

klutzo

It is my impression that the large bladder associated with DI comes after years and is primarily caused by frequently "holding it" as your bladder is refiling so frequently. I did leave out one additional sign. With DI your urine is nearly as clear and odorless as tap water. I can often tell if I am washing out if 1) I have to pee within 30-40 minutes of the last time, 2) the volume is high (For a time I measured but now I can just tell - 700 ml plus is high), and 3) the urine is clear/odorless.

As I mentioned above, I do think that there is the real possibility that minor cases of DI could very well be responsible for at least some CFS low blood volume and the resultant POTS. I plan on discussing this with my CFS doc at my next visit. I think that this needs to be investigated/ruled out in CFS patients.

I should also mention that my CFS started with a toxoplasmosis infection. Toxo is one of a few recognized infections associated with DI.

 

[markmc20001]

urination

Hi everybody,

I used to have severe urination problems. I had to go al the time, and had difficulty shutting off my urine stream. However, I have found a solution and have improved significantly over a year or more.

The solution I have found that helps the urination problem is quitting caffine. It took me 6 months to a year or more to realize the benefits, and caffine is addicting in my case. But I quit and it is the biggest thing I have done to improve my health, not only just fix the urination, but help with adrenal fatigue and cold feet, and spacyness. My vitamins are very ineffective when drinking caffine too. so by quitting caffine I can feel my vitamins working, where with caffine they just go down the drain. Caffine is a tough one to quit and it takes many months to benefit with peridos of depression and fatigue until you can get normalized without it. Howwever, it is really worth it if you can make it.

I struggled with such brutle spacyness, anxiety, and constant crash and burn for 20 yrs before quitting caffine. It has been a life saver. It is worth a try folks.

Mark