Libby

My mother gets nosebleeds like that. She's had to go to the ER at least a half dozen times that I can remember. Not fun. One of the EMTs told us a trick to stop it. Take a piece of flexible cardboard (tear a piece of a cereal box about 1inch x 1.5 inch) and roll it (like a cigarette) and tuck it between your upper lip and your gum, horizontally, right underneath your nose. I don't know if it works, never tried it, but the paramedic swore by it.

^ totally with you on the pickles. I like boxed soup, like Mrs. Grass. It's ridiculously high in sodium and delicious.

I'd say below 50 would be a good line to draw. But I'd also go by how your body feels.

I love my Toprol XL. It was the first med I was put on, back before I had any idea what was going on other than a really fast hr, and it's helped the most. I have low bp, and despite being on a pretty high dose I've never had problems with the BB bringing it lower than what was normal for me. I wouldn't recommend taking any OTC meds that have anything in them meant to put you to sleep (ie NyQuil or Tylenol PM). They don't mix well with beta blockers, and they can slow your hr down waaaay too much.

I love my midodrine. I really like not feeling like I'm going to pass out or throw up when I'm standing. But I've noticed that in the mornings, before I take it, the head rushes I get when I stand up are more intense than they used to be. At night I've started having them too, which wasn't unheard of pre-midodrine but it definitely wasn't daily. And I've been having a lot more pre-syncope moments (way, way too nauseous for my liking) after the midodrine wears off/between doses. But I'm starting to wonder if the POTS is getting worse (which could definitely be the case) or if my body is really leaning heavily on midodrine as a crutch and slowly forgetting how to function without it. I take between 1 and 3 midodrine daily, depending on what I'm doing, how much activity I'm planning, etc. I've been hesitant to take the max number each day...I can function without it, and I just don't want that option to be taken from me, you know? So, does taking midodrine mean that I'll have a tougher time with symptoms when the med's not in my system (as compared to my symptoms pre-midodrine)?

I've had POTS for so long that I just grew up thinking most of my symptoms were relatively normal. And even the ones I kind of knew weren't, I have this weird fear about being seen as weak/sick, so I rarely mentioned them. I can ignore and push through pretty much all my symptoms. I'll walk down stairs in the morning while my vision's still blacked out from getting out of bed. I know that I can, so why should I let it put my life on hold even for 30 seconds? And, anyway, people just can't seem to reconcile that I have POTS with the fact that I look healthy, so I try to avoid making them. Easier for everyone, I think.

Midodrine hasn't taken my naps away from me. Lying down on midodrine is pretty much the only time my bp is 'normal'.

Oh, that's fantastic! I'm so, so happy for your family!

I tried florinef for a while. It might have helped a bit - I tend to black out/tunnel vision when I stand up and I think those weren't as bad - but at that dose it gave me these nagging headaches that weren't too bad pain-wise but lasted forever and made me want to rip someone's head off. I can't say how long that lasts or if it goes away, though - I dropped florinef after 4 days of headaches (following a dose increase) and tried midodrine. Which I love. My blood pools to a ridiculous degree (purple feet. It's attractive.) and midodrine contracts the veins in your legs so I kind of figured that'd work for me better. Black outs basically don't happen when the med is in my system, which is my main signal that it's working. I'd wager it's the florinef giving you problems, but I know beta blockers can give some people trouble. I've never had a problem with metoprolol, the one I'm on now, but I when I tried propranolol I spent the week passed out on the couch.

It didn't sound like you were fighting them, just that you were - like you said - understandably frustrated. Your daughter being accused of having a mental disease (and you being accused of being in denial) isn't fun on its own, but you're dealing with scary physical issues that aren't being resolved...I can't imagine the strain you're under. From replies on the thread, it seemed like there were questions as to why the doctors were pursuing an eating disorder diagnosis when Kay is not very underweight and you've told them that you've never seen signs of an eating disorder. I just meant to say that the symptoms of POTS and anorexia overlap almost totally, eating disorders are insidious - and weight doesn't have as much to do with eating disorders as you'd think, so it makes a lot of medical sense that they'd investigate anorexia first. They need to rule out the horse before they go searching for the zebra. But I can't imagine how horrible it must be for you, knowing the doctors are barking up the wrong tree and not being able to do anything. My thoughts are with you guys. I hope they figure it out soon.

I really hate to have to say this, but the doctors are addressing things that need to be addressed. I'm not saying that Kay has an eating disorder! Just that many symptoms of POTS overlap. That, combined with the lengths the patient will go to to protect it and how many parents just can't see it, makes anorexia or EDNOS a very viable diagnosis from a clinical standpoint. It's more common than dysautonomia in teenage girls and as much as I hate that Kay has to go through all this, the doctors are doing the medically responsible thing investigating it. It actually gives me more faith in them, that they'll figure out what's actually wrong. If you take a look around an eating disorder recovery forum, you'll find a lot of hospital horror stories where the doctors just don't give a sh*t, especially if the patient is not massively underweight (which is awful because you can be anorexic at at any weight). These docs seem to care. Has she had a psych consult? That might go a long way in helping them rule OUT anorexia.

I assume salt does something for me, only because I craved it like mad for years before I knew I should. I'd suck on rock salt like it was hard candy. When I mention that increased salt is one of the treatments, it's funny how many people are like "Oh! So THAT'S why!" I was just self-medicating.

This one happens to me every so often. Comes in spurts and started up again this week, so I really sympathize. I think, at least in my case, the nausea relates to how long a meal sits in my stomach. A little bit longer than normal is fine, but when it starts going on 4+ hours and all of a meal is still in my stomach...it's uncomfortable. Eating a piece of candied/sugared ginger helps. It might take a while to get used to the taste, but it really does work.

There's definitely truth behind it. A few years ago there was a widely publicized news story about a woman who died of hyponatraemia trying to win a Wii in a radio station contest. The person who could drink the most water without going to the bathroom would win the game console. The radio station refused to stop the contest even though multiple doctors called in and said what a stupid idea it was. But it's not anything anyone here has to worry about, I don't think. The huge amounts of water that woman drank threw off the salt balance in her body, which messes with nerve function. If she had been drinking an electrolyte solution instead she would have been fine. With the large amounts of salt most of us take in, it makes sense that we'd drink more water than someone who doesn't salt load.

You and K are in my thoughts. I'm so sorry your family has to deal with this.

I usually steer myself away from caffeine, but I know that coffee w/ cream/milk gets me kind of wired but I don't feel too bad. Caffeine with sugar - like the delicious organic black tea w/ lemonade I just purchased - makes me feel kind of crummy. I used to be a diet soda drinker and I was fine with that. I wonder what it is about the sugar.

^The sample size of the healthy people was pretty small, relatively. That and blind chance could definitely account for it.

Looking at the migraine topic made me think of this. I've had a migraine maybe once in my life, knock on wood, but I think I've had auras. Out of the blue I'll suddenly smell a campfire. It's only for that one breath and then it's gone, but it's like I just got a face full of smoke. My neuro wasn't concerned, and I vacillate between thinking it's nothing and calmly accepting that I'm probably having a stroke. But I think it might actually be an aura without a migraine. As long as I'm not actually having a stroke, lol, I really don't mind it. It's just strange and probably not even POTS related. Sometimes it happens 5 times a day, sometimes I won't have one for months. Does something like it happen to anyone else?

I had this when I was a kid. It lasted for 3 years - got worse in the car, weirdly. It went away eventually. That probably doesn't help much.

You were only up for 10 minutes? They didn't really give you a chance to have a positive ttt. I mean, I went at 12 minutes and was told that THAT was quicker than most. They were going to keep me up for an hour, bring me down to inject something to make my hr go up, then stick me up for another 30 min. But that's their protocol for NCS diagnosis (which was what they were looking for). I think they were really only looking at your hr for POTS. You might want to ask for a full on TTT. If you're going through all the hassle of being strapped to a table in the first place, why not see what happens.

I did have a positive tilt. But a lot of people who are diagnosed with POTS don't. I was just looking at a paper evaluating syncope frequency in OI (POTS and Orthostatic Hypotension patients) and while POTS patients do have a higher instance of positive tilts than OH, only 40% of them fainted during the test. For a POTS diagnosis, they're looking for heart rate increase, not so much a positive tilt. From what you've said, it does sound like POTS to me. There are so many factors that influence a person's reactions that it wouldn't be crazy to think you had a false negative test that day. If you're feeling worse, I'd call and make an appointment. Even if you don't get a more specific diagnosis than OI, you could at least get some help with the symptoms. POTS (and NMH) is a type of orthostatic intolerance.

kayjay, no, I don't have hyper POTS.

Just read the article (thanks sugartwin! ) . They're recommending ruling out POTS first before looking into a psychiatric cause. That's something. Baby steps.

I started taking ADD meds about a year before my POTS diagnosis. At the time, while I definitely think I had had untreated ADD unrelated to POTS since I was a kid (runs in my family), I got REALLY bad. I forgot to attend a final exam for grad school. Yeah. The POTS was definitely becoming more of a problem around then and probably contributed, but the meds strong enough to treat the ADD as well. Ritalin was ok for that, but it wasn't until I switched to adderall that I had my "this is what normal people feel like? All the time?" moment. I could focus, finally, and I loved it. While I was on the adderall, around June of 2010, I started really dragging. I couldn't focus anymore, but it wasn't quite the same. I wasn't easily distracted like before, I was just tired. Hello, brain fog. I had my psych up my adderall, then a few months later she upped it again because the same thing was happening. I could take an adderall at 8am and fall asleep an hour later, when I had trouble falling asleep at night just a few months before. I maxed out my dosage of the immediate release at 30mg twice daily right before I was diagnosed with POTS. (I'm the opposite of most here, it seems. It can a lot for me to feel anything with some meds. ) Like I said, my energy level was a lot higher before I started taking the adderall so I can't really compare it to what I am now. But my energy level before, while higher, was no where near great. Adderall made me feel awake, for the first time in my memory. Starting it was one of the best decisions I've ever made, honestly. I've never had more of a problem with tachycardia because of it. The usual things - standing, exercise, climbing stairs - definitely get me tachy but not any worse since starting adderall. But I'm on beta blockers and have been since 2007, so I don't know what would happen if I took it on its own. When I first started it, I did feel a bit jittery - like I had too much energy (lol if only i could say that now) - but that only lasted a week or two and it wasn't too uncomfortable. I've never felt nervous or anxious but from what I understand, you're a lot less likely to have those side effects from adderall if you have ADD. Brain chemistry and whatnot. The only side effect I did have, really, was decreased appetite. Which I know might be a problem for some, and coupled with the nausea I already had I ended up losing 10lbs. But it leveled off before I looked skeletal, and I was more than willing to take the energy/focus trade off. From what I hear, that's generally the case. Right now I take 30mg in the morning to wake up, and that's generally it. I sometimes take a second pill in the afternoon if I'm really out of it, but since adding midodrine I've been trying to keep from doing that unless I absolutely need it. It's just a lot of meds. Before midodrine, I would definitely take the full 60/day, usually as 45 in the morning and 15 in the afternoon. It was the only way I could get going in the morning. Not so much at an exact time, but more so when I noticed myself starting to feel out of it. Usually around 5-6hrs after I took the first one.

Yup, mine do too. Hand, feet...lips if I'm cold. From what I understand it's common in POTS and pretty much harmless. Looks awful, though. It did help convince my mother that I wasn't making it all up, so I guess I don't mind it completely.