Claired

Sometimes I've found that swimming is actually more tiring than walking, esp. if you have to keep putting your feet back down to take a break (like me ). You may want to try walking in the pool? The water will still constrict your blood vessels, if it's cool water.

I definitely recommend giving Florinef (and the other ones) a good try before switching to a new one. I gave up on florinef too quickly because it wasn't working but I regret that now (I 'm sure I could go back on it in the future if I wanted though). My cardio said it may take two weeks, but some people here have said a month. I did the same thing as you, weaned myself on and off of it. Good thing he has you taking potassium; I've heard that that has to be monitored for a little while when you first start florinef.

Improvement is possible! I know it's an uphill battle. If you can, daily aerobic exercise, esp. walking, does improve POTS in many people. Everyone's different. It's important to start small and increase very gradually. I began almost bedridden (able to get up and use the bathroom or make a sandwich but not much else), and I began at walking 10 min. a day, and increasing 1 minute per session a week, so that within 6-8 months I was walking 30 minutes a day and had much fewer episodes. I think making it regular, and exercising even when we feel bad (if it's safe of course), is key. I noticed when I missed a day I began having shaking episodes and feeling awful. The first few months you begin exercise you will feel poorly (I honestly thought I was dying!), but after that, it CAN get better. <3 Walk/exercise with a buddy who can cheer you on/take you by the arm when you're dizzy. There are lots of little "tricks" you can use to get through it.

You may want to check to see if it is the salt or something else that causes your GI upsets. You may have food intolerances or triggers. I have digestive trouble as well, probably from POTS "rapid gastric emptying," and found that by eliminating things that are hard to digest (gluten, liquid dairy, artificial things, processed meats) I hold food better. If you are having trouble absorbing food you may want to take multivitamins, or see a gastroenterologist. Other salty things include beef broth, V8, crackers, chips, peanut butter…if you hide it in your food, or sprinkle table salt a little at every meal, it becomes manageable. If you need it, some people can be prescribed Florinef by a cardiologist or neurologist to help better retain fluids and salt. Good luck!

Well said everyone!

Thank you all for the responses!

artluvr09 Sometimes when the blood pools in one area (like the face and ears) it helps to do something with another area of the body (like go for a 20 minute stroll if possible/safe). Sometimes that will help the discomfort. But of course check with your cardiologist first. Feel better!

Hello lovely dinet members, I was wondering if anyone else with POTS who experiences migraines/headaches could tell me what theirs feel like? I have post concussive syndrome, but when I went to the neurologist to ask about my lingering migraines, he said he thought they might be POTS or tension headaches, so I'm trying to find out what's causing them. I've been getting a headache that lasts a week, and then no headaches for a couple weeks, and then the pattern continues. Thank you so much!

You're not alone - I get this all the time, esp. after too much talking, lots of little trips up and down, etc. It usually is accompanied by dizziness and the shaking adrenaline feeling.

also, I agree with dizzyallie, that it is best if possible not to lie down all the way. Propping your feet up on a couch or recliner is good, but if you lie down all the way it will be that much harder for your body to adjust when you have to get up (that's why they have you raise the head of your bed by a few degrees when you sleep at night - it helps condition the body gently). Soft cushions are best - for some reason hard surfaces make you dizzy if you sit/lie on them too long.

Hello, Sorry you are feeling worse with rest. I know when I used to go to school with POTS, I would come home and have to lie down for a couple hours, but would feel really exhausted afterward that. What sometimes helped was to do some aerobic exercise for 20-30 minutes if possible to recirculate the blood. It may be useful to note if there are certain times of the day when you feel worse/have less energy, and plan your daily activities around that (ie don't shower in the morning). I often notice a slump after lunch, from around 1-3 pm. Feel better!

I know when you're ill or going through a rough time, people often say, don't give up hope! What does hope mean to you? Abating of symptoms? Full recovery? The ability to be happy despite all of it?

I had it for a few days a couple months after POTS symptoms began. It went away as mysteriously as it came. Have you tried going to an ear, nose, and throat doctor? They can do these position exercises that can fix it right up if it's benign positional vertigo. If not, he/she may be able to look at your ears anyway. Good luck

Sorry I know I already asked a question recently but I've always wondered about this... My cardiologist and neurologist both say that when young people (teenagers) get POTS, it goes away in early adulthood within a few years. However, if you read the bottom of this page where it says "prognosis:" http://dysautonomiainternational.org/page.php?ID=30 It says less than 20% fully improve. Which of them is correct? it's sort of difficult planning your life when you don't know whether it's a temporary or permanent illness. Does anyone know anyone who had POTS and it went away for them? Did they do anything differently or had a different cause for their POTS? Thank you so much.

Thank you all so much. I don't think I have strep anymore, that was almost two years ago, and I took the full 30 days of antibiotics. But thank you for the info! I understand that POTS causes "rapid gastic emptying" (aka diahrea) because of stimulation from the nerves, but I don't understand how it could cause sensitivities to specific foods. Does anyone know how that works?

Hello, Please bear with me; this is my first time posting a new topic. I developed POTS symptoms two years ago at age 17, three weeks after donating blood to the Red Cross (didn't know at the time I probably had low blood volume). I remember at the time the lady had difficulty finding my vein, but since I was in the healthy weight zone, I thought nothing of it. In the next six months or so, I got sick with many things (including strep throat, for which I took antibiotics), and that was also around the time I got motion sickness and digestive problems (diahrea (sorry!)). My question is, could donating blood have triggered POTS? Or did it just make me more likely to get it, and then one of the bugs finished me off? I'm not even sure it matters why I got it, but I was just curious. My second question is (and this is more important), when people have digestive issues like I've had for two years, and they start at the same time as POTS, is that POTS itself? Or is it something else? I have weird sensitivities to gluten, dairy, artificial things like red dye or processed meats, more than a couple spoons of vegetables, etc. but before two years ago, I was able to eat whatever I wanted, however much I wanted. Like I used to drink 6 glasses of milk a day, eat 5 slices of bread, etc. Now I take Immodium a few times a month. Why might this be? I never vomit, so it can't be gastroparesis, right? Though I do feel full after eating, and eat very quickly to get it all down. It's okay if nobody knows what it is - I've sort of learned to adapt. It was so bad about six months after I first got POTS - I almost couldn't digest anything and lost 10-15 pounds, but now as long as I don't eat too many "trigger" foods, I only need immodium a couple times a month. I know this sounds weird, but my digestion improved with regular exercise - maybe coincidental. Thank you for your time!

hey guys, I think sometime soon Normalyte in partnership with Dysautonomia International is designing a new electrolyte drink just for dysautonomia patients! In the meantime, I drink blue Powerade Zero as well as Pacific beef broth or chicken broth and V8 (both are salty).