Newoldpotsie Posted August 2, 2014 Report Share Posted August 2, 2014 Having a flare after a few decent days - well not really days, mostly good afternoons and early evenings. Good days, hours are so nice, I at times forgot I was even ill. Was looking into getting enrolled in the local cardiac rehab to get my recumbent exercises started and now I can't see that happening any time soon. Also, 3 nights of insomnia leading up to this didn't help nor did the 3 trips up and down the stairs yesterday which I try to limit to once daily. Anyway, something is causing a nasty flare which really started Thursday morning and is just really bad today. There are many annoying symptoms with the flares as you all know but the nausea is the worst because in most cases like today, I'm unable to eat anything which causes even more weight loss and I'm already now under 110#; had just gotten a bit of an appetite back and gained a couple pounds and it's already gone. I'm trying to stay on my liquid intake obviously during the flare but my second worst issue with flares are the constant trips to the bathroom. I no sooner drink and boom off I go. It's sometimes almost clear I go so quickly! I just don't understand how I'm supposed to stay hydrated when it just comes right out. At non flare times. I don't have this constant urgency despite drinking the same amount!! How do I know if I'm dehydrated? When I've gone to the ER for dehydration, they tell me as long as I'm urinating and it's not dark in color I'm good but does that apply with POTS? I feel if I could retain some of this liquid, my symptoms might resolve as well.Any suggestions would be greatly appreciated. Thanx!! Quote Link to comment Share on other sites More sharing options...
writerlymom Posted August 2, 2014 Report Share Posted August 2, 2014 You're probably OK - frequent urination is common in autonomic dysfunction I'm told. Are you taking salt tablets or salting your food a lot? That's supposed to help retain fluid. Also some of the sports drinks like Gatorade have salt in them. Some people take florinef to help hold fluid. Re: the nausea- I was having a lot of that recently, especially in the morning, and it was attributed to reflux due to stress and medications, so took Prilosec for a while and it subsided. I still don't have much of an appetite but it's better than nausea. Hang in there! Quote Link to comment Share on other sites More sharing options...
Newoldpotsie Posted August 8, 2014 Author Report Share Posted August 8, 2014 Not taking salt tablets, I'm sure they would wreak havoc on my GI tract as pretty much everything does; trying to increase oral salt intake. Don't quite know how much to take in because it's in grams and other measurements I don't quite understand-need straight English-eat an extra teaspoon or tablespoon, etc daily so at this point, I just salt everything I eat but I've never been a salt person so I find it's not palatable if I over salt. I find the ground chicken bullion is palatable of course in hot water as a beverage but I also just put some in my mouth and chase it with my plain water-it's easy in a pinch and since I can get it at the dollar store, I have a few containers dispersed throughout the house and in the car. Any other suggestions would be appreciated. I do try to get in 16-32 ounces of Gatorade or power aide in daily; it's usually at the lower end because I just get so full from all the water I just don't want any liquids. Not on florinef-dr did order Midodrine and I've had it for over a month but was hesitant to start it due to a question of me being over medicated for my hypothyroidism and I'm having hyperthyroid symptoms and my T4 is elevated indicating hyper rather than hypo but at the same time, my TSH is elevated so she can't quite figure out what to do with me. I did convince her to reduce the synthroid dose due to my 30# weight loss on that criteria alone but that wasn't easy either. Midodrine is contraindicated in hyperthyroidism. Due for retesting in the next couple days so, hopefully, the T4 will be in normal range and I will be able to start it. Just saw GI earlier this week and we decided to discontinue the nexium because I've been on PPIs for years for severe GERD without great success, just some mild relief; I've been weaning gradually which could have also been contributing to my increased nausea so he has changed me to Zantac and reinterated small meals or grazing throughout the day and a nutritional supplement like ensure to help with getting some weight back on and keeping up nutrients. Hope you are doing well. Quote Link to comment Share on other sites More sharing options...
writerlymom Posted August 8, 2014 Report Share Posted August 8, 2014 Hi- this blog has some info on salt equivalents. Good luck with everything!http://www.potsrecovery.com/p/lotsa-salt-diet.html Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted April 14, 2018 Report Share Posted April 14, 2018 On 8/2/2014 at 9:39 PM, Newoldpotsie said: they tell me as long as I'm urinating and it's not dark in color I'm good but does that apply with POTS? In a word, no. The belief that clear urine = adequate hydration assumes appropriate production of fluid retaining hormones like ADH and aldosterone. A healthy person who was dehydrated would automatically concentrate their urine, but someone in whom one or both of these hormones is deficient cannot do so effectively. Quote Link to comment Share on other sites More sharing options...
GardenGal Posted April 17, 2018 Report Share Posted April 17, 2018 Agreed with bombsh3ll. Urine should not be clear if dehydrated. It's dark to conserve. so sorry this was your experience. What about doing a 24 hour urine volume on yourself. 2 litters ish of pee is probably OK... 3 is pushing it. if you're getting 4+ liters, there's a problem. You're flushing nutrients and electrolytes.... Either you're drinking too much (sometimes as a result of the thirst centers in your brain being jacked, or your body is flushing fluids too much and you're drinking a lot to keep up/trying to compensate. This is an over-simplification :-)... but general idea. I'm sure you have already thinking on this or you wouldn't have written this post. Sorry to repeat what you already know....just wanting to reassure that you might b on to something. If you do decide to do a 24 hour volume check on yourself, you dump your fist pee of the AM, start counting with your second pee, then count the volume for your first pee the next day, ending your 24 hours. I wonder if it would be helpful to track fluid intake also (to make sure the volume is matching. I find that sometimes I'm conserving fluid much better then others, and like you -there are times when I just can't keep up. I guzzle electrolyte solution etc. My cardiologist put me on desmopressin and it has been SO so so so helpful! Though not perfect, and has some side effects, has really been a life changer in how stable I am. I've started to gain weight, have less muscle symptoms, my BP and heart rate are better.... So sorry you are going through this. Wish it wasn't this way for u Quote Link to comment Share on other sites More sharing options...
Lily Posted April 18, 2018 Report Share Posted April 18, 2018 Gatorade doesn't have enough salt in it to be helpful, and way too much sugar. You might get better results with Pedialyte, or one of the recipes on this web page: https://paleoleap.com/all-about-electrolytes/ Quote Link to comment Share on other sites More sharing options...
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