Alyssa Posted November 22, 2011 Report Share Posted November 22, 2011 I made the mistake of drinking a full glass of water around 8 pm last night. For the next 6hrs, I was having to pee several times per hr. It is now 2pm the next day and I haven't had anything to drink since last night, but I'm STILL going almost every hour.Some days it's worse than others, and this is definitely one of the bad ones. I don't want to have anything more to drink because I won't be able to do anything but run to the bathroom to pee.I'm just getting really frustrated with it as it had me up all night last night and I still haven't been able to get in any deep sleep.There has to be a way to get some relief, it's been like this for at least a year now.I'm not supposed to dread having a glass of water.Does anyone have any relief ideas? I need to talk with my doctor about it. My urine is never anything but crystal clear, which I find kind of odd considering how little I tend to drink (I know, shame on me!!) Quote Link to comment Share on other sites More sharing options...
julieph85 Posted November 22, 2011 Report Share Posted November 22, 2011 have you been tested for Diabetes Insipidus? It causes the exact symptoms you are describing. There is definitely something going on with your ADH, it sounds low. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 22, 2011 Report Share Posted November 22, 2011 Alyssa,I'm glad you brought this up because I keep drinking and urinating and feeling totally dehydrated. I just told my mom yesterday that if I drink more, because I feel dehydrated, I just pee more. I feel like the more I drink, the more I pee and it isn't proportional (I urinate more than what I take in). Now that we have the heat on in the house, the feeling of dehydration is even worse. Like you, I also have relatively clear urine. It really stinks when you feel otherwise well enough to leave the house but you know you better know where all the restrooms are where ever you are going!Julie,I don't think I have been checked for D.I. What kind of testing should be ordered for that? Quote Link to comment Share on other sites More sharing options...
Lette Posted November 22, 2011 Report Share Posted November 22, 2011 I was in hospotal all last week because I fainted during a routine appointment so they kept me in and I fainted again on the tilt table test! They increased my beta blocker from 30mg to 80 mg daily and now I am gasping with thirst, hurts when I pee and im peeing constantly, I either have an infection or the new meds are doing it!! Quote Link to comment Share on other sites More sharing options...
Serbo Posted November 22, 2011 Report Share Posted November 22, 2011 best to get checked for DI. DDAVP can help. Quote Link to comment Share on other sites More sharing options...
Alyssa Posted November 22, 2011 Author Report Share Posted November 22, 2011 I haven't been tested for DI yet, but I know I need to. I'm in the process of switching up doctors and am currently back at home with my mom while I can't work - that's a whole 'nother issue!! She doesn't seem to take my symptoms very seriously, which makes getting anything looked at pretty difficult. Quote Link to comment Share on other sites More sharing options...
Serbo Posted November 22, 2011 Report Share Posted November 22, 2011 ^ - Also back with my parents while i get this sorted so i can relate. I got DI diagnosed via an endocrinologist. You will need to do a dehydration test. DDAVP raises BP so all its a good tool if you need it. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted November 22, 2011 Report Share Posted November 22, 2011 I was doing this all the time too but now I can go hours without running to the restroom. I knew where every restroom was and could hit more restrooms than stores at the mall. I had leaking too so I didn't always make it. I have no idea if I had di, but I had the symptoms. I still get thirsty and I drink a lot butI'm not running to the bathroom all the time anymore. I never leak either ... Azo cranberry with probiotics and c helped me. I had symptom relief within the first 2 -3 daysso I stopped taking it. Then the symptoms came back within a few days so I repeated the dose.From then on I just kept taking it until I stopped getting the symptoms back ... It took me two or three boxes to fix the problem . Now I only take it occasionally.. We women gets uti's, howeverslight, very easily. Hth .. D Quote Link to comment Share on other sites More sharing options...
mwise Posted November 23, 2011 Report Share Posted November 23, 2011 I too urinate frequently from the Midodrine and drinking lots of fluids. I definitely know where all the bathrooms are when I am out. Before I had been diagnosed with Dysautonomia, I never had a problem and could hold my urine for hours. I would give anything for a couple of hours without going to the bathroom. Lol guess that will never happen. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 23, 2011 Report Share Posted November 23, 2011 Many patients - particularly those with my hyper presentations complain of this. I get it often.Several mechanisms have been proposed for it including sympathetic activation itself, abnormalities in renin/aldosterone or kidney dopamine, increased angiotensin II in low flow POTS and also in patients with Sjorgens Syndrome who had POTS or autonomic disfunction, their increased urination was found to be the result of m3 muscarinic autoantibodies (similar to those implicated in POTS by MAYO clinic) and IVIG treatments resolved this symptom in primary SS patients. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted November 23, 2011 Report Share Posted November 23, 2011 Katy, dr.'s can also check for DI by doing a urinalysis and checking the osmality and potassium. People with DI usually have very low urine potassium. The florinef could also be causing your symptoms because it effects your adh. Is your urine any darker in the first morning pee? If that urine isn't clear that would be a good indicator that it is likely not DI because if you have DI all your urines are clear and you even urinate clear urine throughout the night when your not drinking. I definitely think you should be checked though and talk to your doctor about the florinef. Quote Link to comment Share on other sites More sharing options...
gertie Posted November 23, 2011 Report Share Posted November 23, 2011 This is one of the first symptoms I had when I first had Dysautonomia. I would urinate every 15 min 24/7.Be sure you get checked for all the obvious things. Mine was diagnosed as interstitial cystitis but I suspectit was all caused by autonomic dysfunction. There are meds for that now, but now when mine gets out of control I take Neurontin/Gabapentin. It calms the nerves. Be sure you don't stop taking in fluids or you will get dehydrated.I thought like you do that if I didn't drink I wouldn't urinate but I still felt the urge. Don't drink acid drinks like OJor cranberry. Sometimes eating a couple of Tums will keep the bladder from being acidic. Good luck! Quote Link to comment Share on other sites More sharing options...
Alyssa Posted November 24, 2011 Author Report Share Posted November 24, 2011 Thanks for all of the input everyone! I'm starting to think it may actually be DI, mostly because I haven't seen any yellow to my urine in several weeks. It is always crystal clear, looks like pure water.Is there any reason for the sudden onset? I don't remember always being like this, seems like it started right around the time that POTS began. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted November 29, 2011 Report Share Posted November 29, 2011 If it is DI that would likely explain your POTS. DI is usually a differential diagnosis workup because the symptoms are so similar. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 29, 2011 Report Share Posted November 29, 2011 ^ - Also back with my parents while i get this sorted so i can relate. I got DI diagnosed via an endocrinologist. You will need to do a dehydration test. DDAVP raises BP so all its a good tool if you need it.What is DI and DDAVP? Quote Link to comment Share on other sites More sharing options...
Serbo Posted November 30, 2011 Report Share Posted November 30, 2011 diabetes insipidus - and DDAVP is an ADH hormone replacement given to treat central diabetes insipidus Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 30, 2011 Report Share Posted November 30, 2011 does the endo test for those? If so what other endo tests should I ask for. I have this problem, I can go 15+ a day and I drink almost a gallon/day of water Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 30, 2011 Report Share Posted November 30, 2011 excessive thirst and urination - both predominant symptoms in POTS. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted November 30, 2011 Report Share Posted November 30, 2011 What is the mehanism for excessive thirst and urination? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 1, 2011 Report Share Posted December 1, 2011 Sympathetic excess? Appropriate response to increased vascular filtration? Low blood volume? bladder irritability from partial neuropathy or muscarnic autoimmunity? elevated angiotensin II levels and paradoxically low renin responses? poor sodium handling in POTS? abnormal kidney dopamine function? kidney denervation? All of these have been postulated. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted December 1, 2011 Report Share Posted December 1, 2011 I thought sympathetic excess led to decreased urination and decreased bowel motility. It doesnt seem sensible to have to stop for a quick slash behind a tree whilst sprinting away from a lion.... What am i missing here? Quote Link to comment Share on other sites More sharing options...
Annaliese Posted December 1, 2011 Report Share Posted December 1, 2011 The excessive thirst and dry mouth seem sensible if one has low flow pots. I was thirsty for a year until i started taking florinef. Now i could win a spitting comp : ) Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 5, 2011 Report Share Posted December 5, 2011 Could be related to renal hypertension (kidneys) symptoms one of which is frequent urination and water retention. Again I think the "tension" issues we have flare and are not constant like people with a normal chronic issue. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 8, 2011 Report Share Posted December 8, 2011 That could actually be true or at least possible.Thirsty patients should probably try and get their angiotensin II levels checked since these guys seem to be the most low on blood volume. Quote Link to comment Share on other sites More sharing options...
Alyssa Posted December 9, 2011 Author Report Share Posted December 9, 2011 I presented this to my doctor 2 days ago and she brushed it off. I see a neuologist on the 16th and hopefully he will look into it. Quote Link to comment Share on other sites More sharing options...
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