Claired

Katybug is right. Tyler, there is hope! Things are bleak now, but there is a right treatment out there for you. There are many dysautonomia and other illness groups online who are extremely supportive. If you ever have specific questions about your illness, feel free to ask them, because no one here will ever judge you. By the way, depending on your income you may want to see if you qualify for free healthcare, the specifics probably go by state. Thank you for your service to this country.

Thanks guys. I'm already gf and mostly dairy free, except cheese. I avoid raw veggies, processed meat, artificial stuff. Maybe I just ate something unusual.

I don't know, I don't have a working scale. I can just tell by the way I look and how loose my clothes are. Any suggestions??

Hello, I've had a bad POTS flare these past several days - overheating so badly I have to take multiple cold showers a day, blood pooling in more places than usual (hands, wrists, upper thighs, face, ears, when lately its been just the lower legs). I'm eating 5 small meals a day and still losing weight through diarrhea or something else I can't fathom. MAybe it's just not being digested. I can see my cheeks hollowing out, and I'm shivering from lack of energy. Suggestions on how to hold/keep food better/put on weight/have more energy? I've had these flares before - sometimes they last a few weeks - but I'm really weak and worried I'll pass out in the bathroom. I can take imodium when it's bad, but I'd like any other suggestions as well. THank you so much.

Thank you for responding, Katybug and ks42. ks42, did you notice lots more blood pooling when you took it? I didn't have any more visible blood pooling than usual, though my veins have been more visible and sore the past week. I guess I wont' be taking any more Florinef and I was so proud of myself for finally getting up the courage to try it again! I had tried it a year and a half ago but chickened out after a few days of feeling "weird." But now I guess I know for sure! ks42, how long did it take after stopping Florinef for the symptoms to stop? I haven't taken any since yesterday morning, but today I went for a slooow 20 minute stroll and my chest hurt and pounded again. If it keeps up I'll call my dr next week. I would have skipped the walk but I've been itching to get out and if I stay sedentary I know my POTS will just get worse. Are there any medications left for me to try? I don't think I can take midodrine, and my dr didn't want to do beta blockers with me bc I'm fairly young and my heart is otherwise fine. I wish there was something more I could do to get better! I can't pull the compression stockings on anymore (I tried and failed again today lol), I do all the little "lifestyle adjustments." I just feel like I'm not trying hard enough. But then when I try harder, I get an episode. Will I ever get passed the 10-15 min. standing and 30-minute walk plateau? (I'm very grateful, believe me, I know how being bedridden feels.) I've been at this level for like a year and a half.

Yeah. The last time I talked to my dr about Florinef side effects, he denied that there were any (even though I 'm looking at the label right now and they're there). I'm going to take it easy and stop taking it for a few days and see if my symptoms get better - if not then it is a different problem (maybe a UTI infection). I'll update when I find out/if I call a dr/pharmacist.

Hello, I have POTS and I just started taking 0.1 mg Florinef a week ago, and I've been experiencing some weird symptoms. I have frequent urination, even worse than normal-for-POTS (though this symptom started the day before I began taking Florinef, so it could be caused by something else). It hasn't gotten any better though, and I thought Florinef was supposed to help retain fluids and salt. I'll be normal one minute and the next I'll have to get up suddenly to use the bathroom. Today and yesterday during and after my walks, I noticed chest pain and my heart was pounding really hard, which is abnormal for me, since my heart and leg muscles are strong enough to go for a 30 minute walk without too much trouble. Today I couldn't finish my walk, and I had to walk really slow, and it felt like I had gone for a jog. Hills were really hard. I've put my feet up now and though my heart is beating much slower, I can still hear the deep pounding in my ears and the pain is still there. It's taken half an hour after my walks to catch my breath both times. I don't have any heart problems - I've been checked by cardiologists before. I've been drinking plenty/my usual amount of fluids (8-12 glasses) and eating some potassium foods like bananas, potatoes, V8. I haven't been overloading salt bc I didn't want to outbalance my potassium, since I heard that could be dangerous. My doctor didn't give me a potassium supplement. Am I doing something wrong with this medication? Thanks.

When you say a medication that would make POTS go into remission, do you mean like just a drug one takes every day? Do symptoms of autoimmune diseases that have been "cured" still come back while people are medicated? I'd be totally fine with taking a pill every day if that's what was needed to block the autoantibodies. Is that how autoimmune drugs work?

My skin's always does weird things since POTS began, but today it started swelling up around what I thought might be a bug, though it didn't look like one (unfortunately I lost it). There were two spots of swelling, and there was edema as well (but that happens all the time with me). I did shave this morning, so maybe it was irritated. It almost looked like an allergic reaction, you know like when you get those allergy tests and they test a piece of skin and just that piece swells up? No other allergy signs though, and I'm not allergic to anything I know of. I feel like since it wasn't there this morning, that's too quick for the reaction to be from a bug bite....though stupid me I triedremoving it with tweezers and only succeeded in making myself bleed. I really hope it wasn't a tick. But I haven't gone out today. Anyone else get weird swelling? This isn't what I needed today, my family member was graduating tomorrow and I hate taking attention away from that. I'm just going to ignore it and hope it goes away.

I'm 19 and I get that all the time after walking once I stop walking. Probably blood vessels/pooling, as the other members said, if POTS related.

Thanks for the replies. I found it weird because last summer I went out for many walks in 80 degrees on my own, without a problem. Maybe my body just needs to make the adjustment from spring to summer. My mom and I often escape to the library on 90+ days....because that's just gross without AC lol! Or I take a couple cool showers a day, and then sit in front of a fan. We live in an old house, and the windows don't hold an AC (we have one, but it doesn't fit well). We also don't really have doors in our doorways, so the poor little box would be trying to cool an entire floor...not practical. Our car has AC though. Sometimes we drive around I'm trying not to think about summer too much, bc I know if I do, I'll completely freak. I was terrified for last summer bc the summer before (my first with POTS) was nightmarish, but last summer was pretty good. But I haven't been exercising much at all this year, so I need to retrain my ANS before the hot weather comes. It's always a race But I know if things get really bad, there's always the ER (fun fun). Where do you guys go to stay cool, those of you without AC?

Congratulations!! Best of luck to you!

Thanks for the reply Katybug. I don't think I am completely without sweat; I just sweat so little compared to what I used to. It came with POTS.

Sorry you're feeling strange Sometimes people jerk/twitch just as they're falling asleep (hypnic jerk), but I've never heard of shaking before sleep.

Hi there, Today it was really hot where I live (it reached 80 degrees F when it's usually 55 or so) and I went for a 30 minute walk in the sun. Felt dizzy but not too bad walking but then when I got back inside and sat down, felt awful. I had this sickening nausea and my head felt like it'd been broiled. I know this is my heat intolerance because a couple years ago I went to the ER for an IV for a similar (but much worse) episode. I've had this sickening feeling on and off all day since my walk. It's very disconcerting. I know it's not the adrenaline, bc I'm familiar with what that feels like. I was just wondering, are these episodes "just POTS" or are they dangerous, like pre- heat exhaustion, heat stroke? Does having POTS make you more likely to develop heat exhaustion sooner? I don't sweat anymore. I shake during them, and feel feverish. Cold showers and fluids help a bit. Would taking Florinef help? I drink plenty of fluids throughout the day. When do I know it's time to get an IV? I always used to think that was only if I was about to pass out, but this is gross. I hope the whole summer isn't like this (I don't have AC at home). Thanks.

Hi there, Sorry you've been feeling so poorly. It's possible that you're really exhausted and that "impending doom" feeling, if related to POTS, could be the adrenaline coursing through from too much standing/too many trips up and down (unless you have a heart condition, in which case you should have that checked out). Sometimes it's good to rest while having an episode, but then get up and do aerobic exercise for 20-30 minutes (or whatever you can tolerate) a day (recumbent bike, walking, etc.), as long as it's allowed by your dr. Continuous movement, like 20 minutes of exercise, is much better than lots of little trips up and down (like doing laundry, dishes, crossing the room and sitting down many times, etc.). Obviously there's no way to avoid these things but it helps to know what brings it on. Oftentimes when we have POTS episodes, we don't want to get up again, but if we don't, the orthostatic intolerance worsens. So as long as it's done safely (you sound like you have a supportive husband nearby), getting up and stretching one's legs can be good. Safely! I know what you mean when you say GI is related to tachycardia...I always have digestive episodes with my POTS episodes. Lots of dietary sensitivities and such. And sometimes it's just random. Have you been tested for allergies/food intolerances? HAve you eaten anything different the past few days? Sometimes people keep a log of what they eat and see if they notice any triggers/patterns. For me, gluten, processed meat, raw vegetables, too much liquid dairy, and some artificial foods can set off my POTS. It can take a while to figure out, but it can be worth it in the long run. I take immodium a few times a month and find that it agrees/doesn't set off a POTS flare. It's nice to know there's something to prevent me from getting too dehydrated, so I don't pass out in the bathroom (not fun!). If you find yourself losing too much fluid, the people in the ER can give you an IV which may help. By the way, I hear Sea Bands often work well for nausea. For some I think it even prevents vomiting (as long as you're not sick with the flu or something that needs to get out of your system...though even so, it may help the nausea). Best of luck to you.

What advice would you give to someone trying to choose a college major? I want to choose something that I will be able to do as a career without being totally burned out. It would need to be a job that lets you sit, but doesn't force you to sit at a hard chair for 8 hour shifts. My strengths include writing/English, math, and science. Thanks.

Joeywop, did you end up trying the DVD program?

I usually experience a setback after getting sick. Assuming you've been lying down more than usual and not exercizing, it may have temporarily worsened orthostatic intolerance. But don't worry, you should be able to get it back. Have you tried resuming your normal activities? Have you checked with your dr to make sure you're still not sick with something? Best of luck.

Indeed! I've had pressure in the middle of my forehead (probably wher ethe sinuses are) and a sinus infection for about a month that is just going away, but I didn't know that could cause the vibrating! Good to know.

My mouth has been vibrating (like the top of my mouth, tongue/teeth) and I'm not sure why this is. Does anybody else get this? I also get mysterious "teeth headaches" sometimes, like all of my teeth will ache at once. Is this from my POTS? I've had a couple of concussions recently but I feel like that's probably not related? Thank you.

puppylove, I know this was posted ages ago, but if you're still having problems with nausea, have you tried Sea Bands?

Thank you for responding Nymph! That's good advice.

Someone told me once, after I complained about having burning, watering eyes and trouble reading that I should be tested for Sjogren's? But when people also have Sjogren's don't their eyes dry up instead? mine have been bothering me for a few months now so I don't think it 's an infection. I've never had allergies before (and it's snowing where I live). Looking at a list of possible symptoms I also have dysautonomia, nose bleeds, digestive issues, headaches often in my teeth, fatigue. Is it worth doing?

Did your heart rate increase 30+bpm upon standing within the first 10 minutes? Because I believe that is the diagnostic criteria for POTS. When I had mine done, my bp DIDNT drop because my heart rate increased to compensate for the low blood volume.