Millerla

I have the same issues. Usually, I am able to fall asleep shortly after laying down, but then I will get a week or two where I just cannot fall asleep. Then my dad yells at me for being up so late, because he still doesnt quite get how sick I feel. I sleep with 2 or 3 pillows and use a noise machine on my iPad. If I'm really wound up, I take a warm bath. Sometimes though, there just doesn't seem to be anything that I can do, so I just lay with my eyes closed, trying to relax and concentrate on the noise machine instead of my symptoms.

I totally get the nausea issue. Usually, when I wake up, I will sip water, eat saltines, and take a couple tums. Actually, usually the very first thing I do is take my Prilosec. Worse comes to worse though, I sleep with a bucket beside my bed, so it's there if I need it.

My dad and paternal grandmother have both had the same symptoms as me, but they were eventually just put on hypothyroid medication and sent on their way. I think they had POTS as well but grew out of it, and now they are dependent on the medication. My older brother does have a Vegas nerve disorder, but it's definitely different than POTS. When he's stressed, his hr slows way down, then speeds way up to compensate and he gets really sick. He's fine as soon as his heart slows back down though, standing doesn't change anything.

I'm having issues with my "prescription" of exercise. I have a pretty strong heart, so even when my hr gets up to 200 bpm, I don't pass out. I feel pretty cruddy, but my body seems to be able to handle it. I totally understand how difficult it can be to get started on this stuff, but supposedly it really does help. Good luck to everybody!

Also, most sports drinks have a pretty good source of sodium, and milk/non-dairy "milks"(If you can't tolerate dairy) have an excellent source of sodium. Actually, a lot of foods are surprising me by having sodium in them, just check labels.

The amount of liquids that you are supposed to take in addition to the salt probably helps that a lot. Yes, tons of salt by itself would more than likely upset your stomach and wear down on it, but I know I was told to drink 4 liters of liquid a day, so the salt is generally just binding to that liquid.

It really depends for me. Usually, it's anywhere from 60 to 80, but when I was at mayo and stressed, the lowest I could ever get it was 96, that was during my ttt. The highest my resting hr got was 135 right before my exercise test. They put a belt on me in case they needed to drag me off the bike. When I met the first internist, who gave me "a poor man's ttt" it was 100 bpm. I just kept telling them all "I'm stressed so my heart rate is up much more than normal."

I take a combo iron/vitamin C pill and an adult gummy multi-vitamin. I could probably do without the gummy vitamin, but it ensures that if I have a day where I don't eat as well as I probably should, I still am getting what I need. The iron helps me a lot though, I felt like I was low on iron, but the doctors just kept telling me I was not anemic. Then, my iron stores were tested, and those were super low. Not surprising considering I have really heavy menstrual cycles and don't eat red meat or very many dark greens. Also, I don't know if this counts, but I've found that cutting out dairy and drinking alternative "milks" has helped me a lot. I'm not lactose intolerant per se, but dairy does have a way of making me uncomfortable.

Usually I get a headache because I'm more exhausted than normal and am trying to keep my eyes open. It's like if you flex any other muscle all day, it will probably hurt. I was told no naps, but naps are usually the only thing that helps when I get that kind of headache.

Oh, and all of my mom's friends are annoying me because they keep saying "at least it's easy to treat". Notsomuch.

I also have those issues fire watcher, I did still go to dance during the school year, and some warmups just killed me, I just stopped while everybody else kept going. Then during my exercise tolerance test, all of a sudden my legs were on fire and I just could not pedal the bike anymore. My mom took me out on a wheelchair because my legs wouldn't support my weight. I haven't been on antihistamines though, other than the occasional Zyrtec for seasonal allergies.

The exercise stress doctors scared me, and one of the internists I saw didn't make it much better. Apparently I am so deconditioned my heart is working at 66 percent of what they were hoping it would be, and way far off from what is normal. But afte having the exercise test, and my hr going up to 200 bpm, they suggested that my hr should be up to 154 bpm at least. Ummmmm, no. The internist just said not to worry about the hr and to try and do aerobic exercise for 30 minutes before dinner and strength exercises when I wake up. I've been trying to relax since my hectic week and not start my conditioning until Monday, so I have no idea how it will go. I've still been at school most days and dance classes twice a week if I feel up to it, so I don't know if it will be too difficult. It has seemed to get worse just in the past couple of months. The doctors seem to "understand" me, yet I'm frustrated because other than the select few dysautonomia doctors who actually have it, these doctors have no idea what a day for me feels like. That's why I'm glad to have found this site! Also, I'm not allowed to take naps, which I think I will have the most trouble with because one moment I'm putting my feet up, and the next my mom is yelling at me to wake up.

What I understand is that the chemicals released by stress and the chemicals released by an off-balance autonomic system are pretty much the same and very intertwined. So when we are more stressed, the autonomic system gets more stress signals, which sends more back to your nerves, which send more stress to the AS... Which means that if you start thinking about attacks and getting anxious about them; you will be more stressed, triggering more attacks, making you more stressed, and so on. So anything that can get your mind off of the attacks should help quite a bit.

Its bad everyday for me, but sometimes is worse if I have a trigger. Heat, stress, and not eating/drinking as well as I need to usually do it for me. I'm still walking and at school full time though, so either I fight my really bad days more or I got help before it got too bad. I am also not currently taking any medications, other than the anxiety meds I have had for 4 years, so medication could be making some people have particularly good or bad days.

I take a small dose of generic prozac(fluoxetine) for my anxiety. It doesn't help a lot, just keeps me from having panic attacks all the time, so we are looking into changing it. I don't think it does too much to my bp or hr, but I've been on it for almost 4 years, and it's a pretty low dose. It does, however, make me have even worse brain fog if I increase my dose.(Before my POTS diagnosis, my doctor kept increasing it, thinking it would help)

Welcome! I just got back from mayo getting a diagnosis of POTS myself. What all the doctors told me 50 times over is that your body is off balance and you need to put it back on balance, and work at it consistently. The best treatments they said were vigorous aerobic exercise once a day every day with a goal of getting up to 30 minutes per day. Also, as much salt as you can tolerate, and 2-4 liters of water every day, you should be peeing clear. No naps(easier said than done!) and having a consistent bedtime and bedtime routine. This is what they told me; of course, everybody is different and I haven't started doing all this quite yet, so I can't tell you if it actually works or not, but it makes sense.

So, I've been at mayo all week after arriving Monday and having all sorts of issues with insurance.(my primary doctor referred me to someone who referred me to mayo, but since the referral wasn't from my Primary doctor, insurance wouldn't cover it). I had everything that could possibly be tested tested, including a rectal exam(fun!). By the end of the week, all of the pediatric nurses knew exactly who I was. Today I didn't even check in, they just said "Laura, you can come back here". A couple frustrating things though: the GI said he knew what I was going through, because he used to pass out after seeing blood in med school.*insert eye roll*. Also, the exercise stress test was really bad, because my hr got up to 200 bpm before they let me stop(actually, I stopped, because I couldn't feel my legs). My mom had to help me change then roll me out in a wheelchair. The ttt, however, went as well as it could have. I didn't pass out, thank goodness, but they only had me up for 10 minutes. Anywho, I finally today, after 2 years of feeling horrid have a diagnosis of POTS! They didn't give me any medications, except for aerobic exercise and salt/fluid intake. Dr. Kizilbash said I could have a beta-blocker if I wanted to, but didn't suggest it, so I am going to try and go with out. In December now I go to the PRC for a 3 week program. Anyways, it's been a crazy stressful week at mayo(including our car getting broken into) and I'm glad to be home and with a diagnosis, I just thought I'd introduce myself!