CRPN Posted October 15, 2014 Report Share Posted October 15, 2014 Hello All,I'm new to this site and have yet to actually be dx'd with POTS. However it is suspected as I passed out within 5min of a tilt test, Hx of tachycardia, fainting, nausea, lightheaded, extreme fatigue, etc etc. This has been going on as long as I can remember.Anyway, I had an episode last night. I felt nauseated all of a sudden and just progressed downhill from there. I couldn't help but notice that I had to pee like crazy! I emptied a full bladder, then shortly after another and another. This is a common occurrence for me.I realise that losing lots of fluid is only making the situation worse so I always push fluids but can't seem to hang onto it! I end up getting up to pee it all out every couple hours at night. Even with high electrolyte content it takes quite a while to feel normal again. I almost passed out last night and had to lay down on the floor after one of my trips to the loo. This morning still felt aweful, layed down on the floor, put on my compression stockings, drank more fluids and took Modafinil ( a med prescribed for mild narcolepsy). I see that it is being used in a trail for POTS so I have started to use it more to tx POTS symptoms since I'm sceptical I have narcolepsy. I was able to come around and make it through work ok today - athough very tired.I would love to know what triggers the sudden fluid loss, and if anyone has experience with this same phenomenon? Also, is anyone else taking Modafinil? If so do you also find it helpful? Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 15, 2014 Report Share Posted October 15, 2014 Fluid loss is part of the automonic dysfunction. Polyuria is quite common amongst POTS patients. Mine, unfortunately, seems worse at night which affects me falling asleep....I'm almost asleep, I suddenly have to urinate, I empty an almost full bladder, I get back in bed, I try to settle again but before I can get to sleep 30-45 minutes later, I am repeating the process. I don't know why it's worse at night.Florinef/fludrocortisone is a common treatment for helping POTS patients retain fluids and as a bonus it reduces the polyuria for some. I am not on the other med you mention. You might try the Ehlers Danlos Syndrome forum at www.ednf.org to ask about this med as there are quite a few members on that forum diagnosed with narcolepsy and/or daytime hypersomnia. There is quite a bit of comorbidity with EDS and POTS, so you may find someone there that has dysautonomia and narcolepsy and takes this med. Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted October 16, 2014 Report Share Posted October 16, 2014 Oh. My. Goodness. YES!! I am so excited to read this thread because I haven't found anyone (or any doctor) who understands thus!!!!! I completely understand the singing from not producing urine to suddenly it's flushing constantly out of me to the point where I ended up in the ER, at its most extreme.The nocturnal urinating all night is a PITA, btdt. It has improved a LOT since I started taking prednisone (1mg) at dinner-oh wow amazing.There were times when I wasn't producing much urine in the morning but about 11am I would suddenly become Niagara Falls, going (a lot) every 15-30 min. Why? That was ~3hrs after I took my cortef and my Endo said that's about the pill's effectiveness. One time when I was under stress, this happened to a very bad extent, I couldn't stop urinating (I kept drinking waster-maybe in hindsite I should've added electrolytes because it didn't help at all and maybe just made things worse) and became weak, then w tachycardia, then trembling, then violent shaking. By the time I got to a medcheck place, I was a wreck. I started crying from frustration (having had these spells before, I just wanted someone to fix me), so the doc thought I needed to be ambulanced to the psych hospital! (Panic attack) I was like-no, I'm sure that may be what I look like but that's not it! They sent me to the normal ER and the doc there filled me up w electrolytes and solimedrol (for adrenal crisis), and told me to up my cortef!!Long story shirt-a new Endo switched me to prednisone (longer lasting) 2mg am 1mg dinner. It helped w the nocturnal urination problems 110%! (Both the difficulty producing urine and the overproducing). He said that cortisol and the kidneys contribute to water balance. Not sure exactly how it helped but-yay!Fwiw, for data collection purposes, I purchased the 100 pack of 10 measure urine strips from amazon. You can track specific gravity of urine to show when you're flushing (very very low) or withholding (very very high) water. I also had periods of high leukocytes but never ever a UTI; and sometimes protein and ketones. Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted October 16, 2014 Report Share Posted October 16, 2014 Sorry, can't edit from my phone-have a fat typing thumb. *swinging*, not singing Quote Link to comment Share on other sites More sharing options...
CRPN Posted October 16, 2014 Author Report Share Posted October 16, 2014 Thanks so much for responding. Yes I find electrolytes really make a difference. However, I do get concerned about the extra calories in sports drinks. Also, always trying to get more salt to hold onto the fluid is a little concerning. I read that scientists actually use high sodium to induce obesity in rats and I have noticed weight gain since increasing salt intake as a tx for these symptoms.I'm wondering what causes the sudden diuresis... Maybe it's dietary? Apparently excess potassium is also a natural diuretic and causes SOME loss of sodium.Once sodium is increased and fluid is replaced things seem to get better so I wonder if too much dietary potassium is a trigger? So hard to know... Quote Link to comment Share on other sites More sharing options...
spinner Posted October 16, 2014 Report Share Posted October 16, 2014 Powerade zero is my best friend. Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted October 16, 2014 Report Share Posted October 16, 2014 I use electrolyte packets and add them to water-no calories in the ones I buy (I'm very sensitive to sugar so I stay clear of the "energy" ones). And I ate a lot of salt (craved it before switching to prednisone) but it didn't cause me to gain weight overall. I wondered about whether, if I was holding water (some mornings) there was bloating but I never saw an obvious relationship. Why do you think salt would cause weight gain other than temporary water weight? Just curious. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted October 17, 2014 Report Share Posted October 17, 2014 Hello CRPN and welcome to the forum. In regards to your Modafinil question I am actually just starting it tomorrow so I will let you know how it goes. I had it prescribed by my Pulmonologist for excessive daytime sleepiness secondary to sleep apnea. I had been on the fence for a long time about whether or not I wanted to try it. I have a number of coexisting conditions that could be causing excessive daytime sleepiness as well as fatigue and cognitive dysfunction etc so it's hard to say if I will get any symptom relief or not. My PoTS Neuro thought it might be helpful. I'm wondering how tolerable the side effects will be though. I did try Nuvagil several years ago which was a horrific experience. At this point I'm willing to give anything a try so we'll see what tomorrow brings. Janet Quote Link to comment Share on other sites More sharing options...
CRPN Posted October 18, 2014 Author Report Share Posted October 18, 2014 Increased salt intake increases thirst AND appetite according to some articles I've read. So basically it make you want to eat more. Therefor you consume additional calories so weight is not just water weight it is also stimulating overeating. Maybe that's why people get hungry again shortly after eating chinese food haha....that stuff is sooo salty.I use electrolyte packets and add them to water-no calories in the ones I buy (I'm very sensitive to sugar so I stay clear of the "energy" ones). And I ate a lot of salt (craved it before switching to prednisone) but it didn't cause me to gain weight overall. I wondered about whether, if I was holding water (some mornings) there was bloating but I never saw an obvious relationship. Why do you think salt would cause weight gain other than temporary water weight? Just curious. Quote Link to comment Share on other sites More sharing options...
CRPN Posted October 18, 2014 Author Report Share Posted October 18, 2014 Modafinil has been one of the few meds I can take without notable side effects. The only thing i noticed was some restlesslegs one night. Mine was prescribed BID (twice a day) but I usually only take the am dose as I don't find I need the second dose most of the time. I also only take it when I feel symptomatic. So If I'm having a good day I don't bother and there doesn't seem to be any problem with that for me personally. How did you find out you needed prednisone if you don't mind my asking? I crave salt all the time and have my whole life so I'm curious what triggered your doc to prescribe that to you...Hello CRPN and welcome to the forum. In regards to your Modafinil question I am actually just starting it tomorrow so I will let you know how it goes. I had it prescribed by my Pulmonologist for excessive daytime sleepiness secondary to sleep apnea. I had been on the fence for a long time about whether or not I wanted to try it. I have a number of coexisting conditions that could be causing excessive daytime sleepiness as well as fatigue and cognitive dysfunction etc so it's hard to say if I will get any symptom relief or not. My PoTS Neuro thought it might be helpful. I'm wondering how tolerable the side effects will be though. I did try Nuvagil several years ago which was a horrific experience. At this point I'm willing to give anything a try so we'll see what tomorrow brings. Janet Quote Link to comment Share on other sites More sharing options...
corina Posted October 18, 2014 Report Share Posted October 18, 2014 Hi CRPN, welcome to the forum! Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted October 19, 2014 Report Share Posted October 19, 2014 My prescription for modafinil was for 200mg daily but I was told to try taking half of one to start with and I could take it in a divided dose if desired. I tried taking 100mg for two days and found much to my disappointment that I experienced unacceptable side effects. Simplifier to what happened with Nuvagil except for the insomnia part. For me I guess this class of medication exacerbates all of my other symptoms so it's definitely a no go for me. You don't know until you try though. I'm glad it's helpful for you.In regards to Prednisone, I have been on it short term for acute episodes of things (pleuracy, asthmatic bronchitis, skin lesions etc. ) but I do not take it on a regular basis. I think someone else here does. Like you I crave salt. I have been told to consume 8 grams a day but I'm sure I consume much more. The 8 gram recommendation was based on my 24 hour urine sodium. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.