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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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my weee test, pots/oi

heapsreal

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Was going to measure my urine output starting tomorrow morning but thought i could do a short one today over 4 hours from 1215 to 415pm.

From what i have read 2500mls or more is consider excess and obviously some type of issue, diabetes insipidus etc. So i thought over 4 hours i should have a urine output of about 400mls.

Its not even an hour and my urine output is 400mls and i know i will pee alot more as thats what i normally do. Tomorrow i will do a full 24hr measure which will be interesting??

So far i think i can say its an issue and probably a major cause of alot of my orthostatic symptoms. As for blood sugar readings etc these are all normal and being on a low carb diet helps control this, so sugar diabetes can be ruled out.

Will keep is thread updated and will use this tomorrow too for my 24hr test.

cheers!!!
 

heapsreal

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Im at home doing this. Wouldn't do it at work lol. Don't think family will like my 1 litre bottle sitting on the toilet Window ledge but it is what it is.

Im going to book in earlier to see my cfs doc. Its something treatable.
 

Kati

Patient in training
Messages
5,497
400 ml is pretty average for 'one shot'. My bladder capacity is well over 1 L.
I think it would be far fetched to think that 4hrs X 6 = 24 hours output, due to diurnal variations, and due to the amount of liquids that you drank before collection.

You probably know this but urine output is decreased at night. I usually go to the washroom early inthe morning when my feather friends wake me up. The output will be low. if I weigh in at that time, I won't be impressed ( I watch my weight). Then 4-6 hours later when I wake up 'for good', without having drinking, my urine output will be more substantial, and my weight will have dropped a bit more :)
 

heapsreal

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400 ml is pretty average for 'one shot'. My bladder capacity is well over 1 L.
I think it would be far fetched to think that 4hrs X 6 = 24 hours output, due to diurnal variations, and due to the amount of liquids that you drank before collection.

You probably know this but urine output is decreased at night. I usually go to the washroom early inthe morning when my feather friends wake me up. The output will be low. if I weigh in at that time, I won't be impressed ( I watch my weight). Then 4-6 hours later when I wake up 'for good', without having drinking, my urine output will be more substantial, and my weight will have dropped a bit more :)

I just thought while im at home i would do a 4 hour test as i started it at midday.but i might just keep this going until tomorrow at midday to give me a 24hr measurement.

2.5 litres is said to be alot for 24hours, i will smash this even with reduced output during the night when im asleep. 2ltr at the 3 hour mark already. Im just drinking to my usual urge to drink. My bodyweight does vary by a couple of kg atleast from morning weight when first woke up till night time when i go to bed.
 

Kati

Patient in training
Messages
5,497
Usually for a 24hour urine collection, you dump the first one and notice the time (don't collect that one). At said time the next day, you empty your bladder and collect that one.

Daily output can vary a lot in human population (I was a RN before I got sick) Most people need 1 container but the odd person will need 2- and of course it depends on the sizeof the container!)

Best of luck with results- what are you getting it tested for?
 

heapsreal

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[quottestingati, post: 388204, member: 200"]Usually for a 24hour urine collection, you dump the first one and notice the time (don't collect that one). At said time the next day, you empty your bladder and collect that one.

Daily output can vary a lot in human population (I was a RN before I got sick) Most people need 1 container but the odd person will need 2- and of course it depends on the sizeof the container!)

Best of luck with results- what are you getting it tested for?[/quote]
Just testing urine output myself just to gauge if there a chance of diabetes insipidus and or this is causing pots/oi symptoms. I have had an increase in headaches and feeling vague with memory issues. Not having hypotensive episodes but resting heart rate is higher than it use to be sitting in the 90s. Supine to standi g is an increase in 20 bpm. Have been feeling alot better at work since using electrolyte drinks but pee a hell of alot, but still chasing my tail. So these findings I will report to my doc and persue other tests he thinks is relative.
 

heapsreal

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7 hours down and 4 litres of lightly yellow tinge H2O.

relaxing chilled day other than running to the toilet but thats normal and have had a couple of electrolyte drinks. But have also kept other fluids up but drinking my normal amount.

just did my bp 160/100 pulse is 100bpm, does that sound like pots. did have a headache but sorted with some panadeine forte.
 

Hugocfs

Senior Member
Messages
121
Location
U.S.A.
When I started relapsing in the later half of 2011, my sleep became horrible and I also developed the same polyuria problem you are having. I was peeing like a horse, sometimes as frequently as every 45 minutes. Previously I had been tested all three ways for diabetes, so I knew that wasn't the problem. In late January 2012, I met with my current cfs doctor for the first time, and immediately after looking at my sleep study results, she put me on remeron. Very quickly once my sleep problem more or less was straightened out, the polyuria stopped. I think as quickly as a week or two is all it took. Something to consider.

Btw, my current regime for sleep is 1mg of klonopin, 400 mcg of melatonin, and 7.5 mg of remeron at bedtime. If you are not on klonopin already, I wouldn't recommend taking it. But the other two might be worth a go.

Also, you might want to try repeating the mantra "Andy Murray, steroids" over and over again when you are trying to fall asleep. It is sort of like counting sheep. If that doesn't work, visualize Andy Murray talking to you, and you will be out before you know it.

Cheers.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
400 ml is pretty average for 'one shot'. My bladder capacity is well over 1 L.
I think it would be far fetched to think that 4hrs X 6 = 24 hours output, due to diurnal variations, and due to the amount of liquids that you drank before collection.

You probably know this but urine output is decreased at night. I usually go to the washroom early inthe morning when my feather friends wake me up. The output will be low. if I weigh in at that time, I won't be impressed ( I watch my weight). Then 4-6 hours later when I wake up 'for good', without having drinking, my urine output will be more substantial, and my weight will have dropped a bit more :)
Wow. I think I have kidney issues. My bladder capacity is 8oz. I pee mostly at night. Thus - very tired. But my Cystatin-C is normal.

I think it is more important to measure how much water you DRINK as regards to OI. Check out Wiki on OI as it says drinking 8 glasses of water a day benefits everyone with OI at least somewhat
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
I don't have POTS but I am taking an interest because I have dehydration issues which are causing me bp problems. For some reason when I have allergies the last thing I want to do is drink water. It may be because allergies use up zinc and I definitely do not make stomach acid at that time and so I crave acidic things, like coffee. Which may be the source of my problem. But anyway in looking into dehydration vs. blood pressure I discovered dehydration is one cause of POTS and another cause is low adrenal function (I started a thread here to pass this on). I may have had POTS when I was younger as I used to black out when I stood during PMS. I always thought it was due to anemia yet it only happened when I stood. I used to get dehydrated during anemia due to all the coffee I drank to keep going (to keep my brain somewhat functional).

Wiki also says 95% of those with CFS have POTS. If it's due to lack of desire to drink water then possibly 95% of those with CFS do not make enough stomach acid (and water dilutes insufficient HCL so your inclination is not to want that). What do you think?
 

maryb

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UK
heapsreal
Is it not as someone mentioned
output relevant to input?
I drink 2 and half to sometimes 3litres a day.
 

SOC

Senior Member
Messages
7,849
just did my bp 160/100 pulse is 100bpm, does that sound like pots.
Could be the hyperadrenergic form of POTS -- high BP and tachy.

Your resting pulse of 90 to100 bpm is too high and should be a matter of concern all by itself. Your BP measurement looks odd, too. That's serious hypertension. Do you get those numbers for your resting BP routinely? Your wide pulse pressure (60 bpm) would be uncommon for low blood volume. PP tends to be low with low blood volume.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Could be the hyperadrenergic form of POTS -- high BP and tachy.

Your resting pulse of 90 to100 bpm is too high and should be a matter of concern all by itself. Your BP measurement looks odd, too. That's serious hypertension. Do you get those numbers for your resting BP routinely? Your wide pulse pressure (60 bpm) would be uncommon for low blood volume. PP tends to be low with low blood volume.

i have woken up morning bp 114/73 pulse 68. My understanding is that its autonomic dysfunction. I have been reading that when someone with diabetes insipidus starts treatment with desmopressin that these things stabilize?? I suppose as they day goes on and i remain upright my body is trying to compensate for the low blood volume, the high pulse rate to me indicates that im probably having an adrenergic response that pushed my bp up??

20hrs down and 6 litres passed, so this seems consistent with diabetes insipidus. I guess one doesnt realise how much they pass until they start measuring it as well??