potsyturvy

I don't know much about POTS and the immune system, but it sounds like an immunologist would be a good idea for you, or you could try an infectious disease specialist. Either should be good at helping you figure out what is going on. I hope one of your doctors finds something that will help you out!

This one's a little gross, but I'm getting over a C. Dif. infection with POTS and you know you have POTS when you wake up your family to show them your semi-solid brown (finally) stool and they all cheer and give you high fives. I know other people with C. Dif. probably get excited about that too, but I think the POTS thing takes it to a whole new level of excitement!!

My hand was purple after 1 minute and my other hand was white. My mom's was the same way, but my dad's was only a little red. I could feel the blood pooling into my hands when I first stood up and put them down at my side.

I was diagnosed with disembarkation disorder (like you, I hadn't been travelling), and I also have several other types of vertigo, but like you said, the disembarkation dizziness is different, to me it felt like I was rocking on a boat or something. Florinef helped me the most with that. I'm not sure if it was truly disembarkation disorder since the Florinef made it go away, but maybe your POTS symptoms are causing the dizziness? Have you had your Vitamin D checked? I had horrible panic attacks, nonstop, all day long until my doctor prescribed mega doses of Vitamin D for my deficiency. Or maybe you could talk to your doctor about trying an SSRI or anti-anxiety medicine. They can be really helpful in fighting panic attacks. Hope you can find some things that help!!!

I wish researchers would figure out why saline helps so much more than just eating and drinking salt and fluids. I don't get regular IV saline, but I'm in a rut right now, and need some help getting out. Rama- If I went to the ER, they'd probably think I was drunk since I can't walk straight thanks to dizziness! lol

Ginger, I have a feeling doctors are like this everywhere. I live in a small town so it is hard to find good doctors and they are usually so overbooked, it's hard to even get to talk to a doctor. All of my good doctors are out of town or out of state.

When I had saline before, I could tell a huge difference in symptoms. I had so much energy and felt "normal" for a couple of days. I guess I'm just going to have to wait a week to see someone to get the saline re-prescribed. I guess I could go to the ER but there is no guarantee they'd do it for me either. Any suggestions on what to do while I'm waiting for saline besides drinking a ton and eating tons of salt? Jangle-- your post cracked me up!! Thanks!

You would think it is the way my doctors around here act about it. I have a prescription from my out of state doctor for iv saline to use any time I feel especially awful (which would be now), but I can't get it filled here because it is from an out of state doctor, so I'm trying to find a doctor here who will prescribe it. However, apparently they can't prescribe it without seeing me and it will take at least a week to get in. Any doctor's office I even talk to they act all confused about what IV saline even is or why anyone would want a prescription for it and then I would have to wait too long to get a prescription anyways. Ugh! It's just saline! It's not like I'm asking for medical marajuana or something!! I just needed to rant a little, I guess if my last doctors call falls through, I will just go to Urgent Care (however they always send me to the ER the minute I say the word "heart")

I barely made it through college. I had to skip at least one class a day because I was so sick, so I had to plan which classes were most important that day so I could make it to them. Surprisingly, I had straight A's my senior year, but that was because I worked super hard studying at home (where I could lie down!!). I haven't been able to work since I graduated, but I've seen some improvement in my symptoms so hopefully I will be able to work at least a part time sitting down job soon! It is really frustrating to hear my friends complain about school and jobs and say how they are jealous of me because I "don't have to do that", when I would give a whole lot to trade places with them and be able to work or go back to school and get my master's degree.

I sweat worse when I have an infection, or there is another "stressor" for my body. I think it's the sympathetic nervous system going into overdrive or something for me. My hands and feet will be dripping with sweat and my armpits sweat terrible no matter how much antiperspirant I use.

I finally quit going to my primary doctor because he didn't believe I had POTS. He kept blaming it on depression, even after several psychologists he sent me to said I did not have depression. After he started telling the doctors he was referring me to that it was all in my head, and they wouldn't even read my test results from other specialists, I finally found a new primary doctor. Thankfully, I have found some good doctors now, but it has been a long hard journey to find them. I hope you find some good ones soon too! And don't take this appointment to heart too much. I think some of these doctors are just too cocky to accept that they don't know everything.

I'm with WeDon'tLookSick, send an imaginary payment! lol. I can't stand doctors like that. I had one that told me that me, my whole family, and all my friends need to go into therapy because I am perfectly healthy and they are just enabling me. He said that before he even did any tests. I wish he had moved his head a little closer to me during the reflex test so my hyperreflexia would have kicked him in the head, as it was, I barely missed If I'd got him, I would have said "and that pain in your head is imaginary too"

My doctors had been testing me for Lupus and early M.S., so I started looking up diseases that presented similar symptoms and low and behold, on a health forum, someone had written about having dysautonomia and how it had some similar symptoms to Lupus. I had never thought my symptoms could be related to my heart or to standing, even though I knew I felt awful if I stood for "long" periods of time. (I knew my hr was a little high, but never thought anything of it). I had even watched the episode of mystery diagnosis where the woman had Orthostatic Intolerance and thought "wow that sounds a lot like me", but once she started fainting, I decided I couldn't have that and didn't look further into it. When I told my doctor I thought I had POTS, he told me he would bet money on it that I didn't, and my cardiologist who did my first tilt, told me it came back normal. Fortunately, I had seen all of my numbers during my tilt and knew my hr had steadily climbed up to 180 bpm. After explaining that to my cardio, he admitted that he didn't even have my hr's from the tilt, only my bp! So it took a lot of research and lots of arguing with doctors before I finally got the right diagnosis and was able to find much better doctors for treatment

I like to crochet too! I'm not great at it, but I've made a few blankets and stuff. I like to read, draw, paint, bake, watch tv, shop on ebay , play with my dog, and watch my 2 month old nephew. When I have energy, I like to go on short shopping trips, play croquet, play mini golf, go bowling, go to the park, or just sit in my hammock! I think I've found a lot more hobbies than I ever would have found without POTS, and I probably make more use of my time when I feel "good" than I did before I got sick.

I'm so excited! This is the first time my bmi has been in the "normal" range! I've always been underweight, but a lot of my gastro issues are doing better and I quit taking birth control which really helped me gain some weight finally!

I was a gymnast when my POTS started. I was always on the go. I didn't do any other competitive sports, but I was always hiking, biking, playing basketball, or doing something active! Even with POTS, I was always as active as I could possibly be, but it seems like each flare up sets me back more and more. I know exercise is good for POTS, but it is also really important not to overdo it!

I lose my vision and I can kind of hear, but everything sounds really far away and my knees start to buckle, but I don't actually faint

My normal high bp is 130/90 but my highest was 140/120. My "normal" bp is about 100/70

I have a horrible time with traveling, but what I find helps is if I can lay down in the backseat of the car, drink a TON of water and gatorade, and make a lot of stops along the way.

I have checked my bp and hr during these sweating episodes, and they are usually pretty normal. I'm really curious what causes it since most of what I read about hyperhidrosis says it starts in childhood, but mine didn't start until I was 21. Thanks Kayjay for the advice on things to make it less embarassing! I'm definitely going to check out the antipersperant you were talking about! It is so gross to see huge sweat stains on the armpits of your clothes!

I didn't start having panic attacks until after I had been on a beta blocker for a few months. Mine started after a minor surgery. I had them non-stop, from when I first woke up in the morning to when I fell asleep at night. I have had a combo of things that I think helped. I am taking a SSRI, Celexa, which has helped. The first two or three weeks on it were pretty much miserable (though I was so miserable already that I guess it didn't make too much difference), but after that I don't feel like I have any side effects from it. I also had really low vitamin D, and after being on some mega-doses of it for a few months, my panic attacks have gotten a whole lot better. I agree with you that it is tiring that doctors want to act like all our health problems are caused by anxiety, especially when they aren't even willing to test for medical causes of anxiety (like vitamin D deficiency).

I know a lot of us have problems with sweating too much or too little. I used to hardly ever sweat. About a year ago I had ingrown toenails removed and my dr used epinephrine which made my POTS flare up horrible, caused bad panic attacks, and made me bedridden for a few months. Ever since then, my underarms, hands, and feet sweat really bad. Today, for instance, I talked on the phone for less than 5 minutes and when I hung up, my hand was drenched in sweat. I showed my family and they thought I had spilled something on my hand because it was soaking wet. I had a QSweat test done a few months ago, which turned up normal, but it only tested my arms and legs, not my hands, feet or underarms. I can't wear t-shirts anymore because I get huge sweat stains on them regardless of what temperature it is outside. My hands can be ice cold, but drenched in sweat. Sorry to get off on a little bit of a rant there about this.. It really isn't a big deal for me, it's more just gross than anything. Does anyone know what causes this or what I can do about it?

Thanks Mack's Mom! I'm hoping I can afford to go back! lol. I actually graduated from college a year ago with a B.S. in psychology. I was bedbound for half of this year, but am starting to perk up again. I'm actually just going back for an associates in Radiography, because I can't afford to get a Master's and PhD in psychology, so I can't do what I want to with it. Tzipora, I totally understand. I hate it that they don't take any circumstances into account on the FAFSA. I'm 22, so I still have to count my parent's income on my FAFSA. I really need to go back to school, so I can get a job I can do and can support myself once I'm off my parent's insurance!

I've had something kind of like this before. It was when I was having pretty low bp while laying down (70/45) most of the time. Instead of waking up though, it was like I would wake up, but I couldn't move or open my eyes. I could kind of moan though, to try to get someone's attention and eventually I could open my eyes and sit up. I never would go back to sleep after those episodes because it scared me so bad! I'm not sure if it was a like a sleep faint, or that sleep paralysis stuff.

I am thinking of going back to school, and was wondering if anyone knows if there are any scholarships available for POTS or EDS. I can't work while I go to school, thanks to POTS, and there is no way I can afford it without scholarships. I can get a small amount for my gpa, but I don't qualify for any based on need, because my parents make too much money. I wish the schools took into consideration that not everyone's parents are paying for their college! Sorry to rant a little there! I was just curious if anyone has found anything on this topic!