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Hi Kylie! Welcome! I'm 15 and totally relate to what you're going through. The whole collapsing in school thing is never fun . Along with dyna kids you might want to check out http://illnessesnz.hyperboards2.com. It's a forum for teens in New Zealand with chronic fatigue/dysautonomia/fibromyalgia, but there are a lot of aussies there too. Maybe you'll be able to find someone who lives near you! Good luck with everything. ~Sarina

Sorry, I didn't really have time to reply earlier. Thanks for all the information, especially Morgan and Ayelet. Morgan, your explanation was really great and very easy to understand. I am kind of freaked out though--the organization for long qt is called "Sudden Arrhythmia Death Syndrome Foundation". Does that not send red flags to anyone? I guess you're right that if my doctor was very worried he would have said something, but there are all these horror stories out there. Thanks again, Sarina

HUP and CHOP are the two big teaching hospitals at the University of Pennsylvania. HUP= Hospital of the University of Pennsylvania. CHOP=Children's Hospital of Philadelphia. Chop is considered to be the best children's hospital in the US, but from my experience they sure don't seem like it. They are right next to eachother and while for the most part chop is the kids and hup is only over 18, they do share a couple small units (like for this rare congenital heart disease). ~Sarina

Hi! I saw a new cardiologist today and he actually knew a lot about dysautonomia! This is a first! (Except, of course, for when I was diagnosed.) He has seen a lot of people with various forms of it, and it was great that he seemed to be good at finding a treatment. He confirmed my original diagnosis, and just had a generally nice demeanor. (FYI for anyone in the Philly area there are very preliminary plans about starting a joint hup and chop ANS center) Anyway, he did an EKG and said that I have something called a "long Q-T". He said that it often shows up in people with dysautonomia (btw he mentioned that chiari issues also do for all of you who were talking about that). Does anyone else here have it or know anything about it? Does it have any symtoms? He said he would talk to us more after he does more cardiac tests (echocardiogram, stress test, 24 hr holter...etc.). I'm going to look online, but if any of you know anything about it, I'd really appreciate the info. Thanks, Sarina

Nina, Are you getting a degree in statistics?? Do you know Allen Izenman? He's a statistics professor at Temple. He's good friends with my dad. Congratulations on all this by the way, and have a wondeful time on your trip. ~Sarina

Uh oh, don't tell my mom about this one. I think she'll be all too eager to put me on it.... Sarina

Hi Juli! I'm fifteen and also have pots (as well as ncs, mvp, and who knows what else... ) My symptoms also really hit right around puberty, although, now looking back there have been all these little clues from throughout my childhood. I've had the low bp, fainting, seizures...everything, so I really feel for you. I'm one of those newbies that briarrose was talking about, and unfortuantely it's taken until now for the doctors to diagnose me. If you want to talk feel free to email me. ~Sarina BTW, are you able to go to school?

Hi Merrill, I'm really sorry about all the back/spine stuff but glad you at least know what's going on. I couldn't imagine having to deal with something else besides all this dysautonomia stuff. I've 4 and a half MRI's...the half was b/c for my seconf MRI I went already feeling very dizzy and nauseous and got sick while in there. It was not fun and I learned after that if you're already feeling bad it's worth it to postpone it. Other than that one bad incident I've always been fine in MRI's. At CHOP they let you watch a dvd while having it, and that's what I've done these past two times. You put on what look like robot/night vision goggles and bam, you have a movie screen in front of you. The noise sometimes blurred the sound a little but for the most part the movie was very distracting. I don't know if they let you watch movies where you're having it...but it wouldn't hurt to bring a dvd along just in case. (Also, since it's a children's hospital they have volunteers dressed like clowns who stand with the technician. For my first MRI, when I was only 11, I was personally told jokes by the nice clown! ) Good luck! Sarina

I don't know if any of you watch Law and Order but this thread reminds me of the last show. It was about a psychologist getting depressed and psychotic herself because of her patients and then finding her own shrink...although I'm not surprised burnout happens so often.

Allie! I can SO relate to what you're going through! Whether or not you have pots, I know that it's really difficult to not know what's wrong with you. I'm 15, and my symptoms didn't start as young as you, but some of them are the same. I've also had a lot of issues with fainting and standing. I was just diagnosed, so while I may not have as much insight as others at the forum, I'm here if you want someone to talk to. Good luck figuring this thing out. ~Sarina

I know that I am much more newly diagnosed than most of you here, so I haven't really had as much time to even think about how I percieve myself. However, I think that the biggest factor, at least for me, is how I'm viewed by other people. In school I've often been thought of as "the sick girl", or "the girl who faints"--and not necessarily in a bad way, just, like, as a fact. Instead of my identity being "football player" or "cheerleader" people hung onto what is probably my worst trait. So when I'm around teachers, friends--anybody--who look at me like a sick person I'll begin to feel that way. But even in the hospital when friends visit and treat me normally, the "sickness" is no longer such a big component in my identity. I don't want this condition to be a huge part of who I am, and in turn I don't want people to look at me that way. However, it's very difficult to not let dysautonomia take center stage when I'm often excluded because of it. For instance this year all of my friends are getting their permits and licenses and it's a HUGE deal and something we've all been waiting for for such a long time. With doctors telling me that it's not a good idea to start driving now, it's obviously affecting a big part of my life. Maybe once I have a better treatment and I'm back in school I'll feel a little differently, but for the moment I think I do look at myself as an ill person. A few years ago I took dance lessons four days a week--now I often can't even get out of bed in the morning.

p.s. Gena thanks about my name! Nina, my best friend's dad is a law professor at temple...go figure.

Thanks so much everyone for being so welcoming. Like many of you have said, this has made me realized who my real friends are. My 4 or 5 best friends have been really great and visit and are supportive--but many other people I considered to be friends, obviously, well, aren't. Which is ok, just frustrating. Steph-- I was "asked to leave" a private prep school who claim that sick students don't fit with their image. I started this fall at public school, and besides having to go through that adjustment I was at an all-time worst healthwise. So, my doctor suggested I go homebound which, for lack of a better word, *****. I hope to go back to school soon even if it's just for one or two classes. Healthcare-wise I was diagnosed at the diagnostics center at CHOP (children's hospital of philadelphia) during my second try there. The doctor I saw was great and seemed to know a lot about dysautonomia, but he doesn't continue to see patients. My neurologist hasn't been very helpful, and I just started seeing a cardiologist who is a perfectly good doctor but has never had any experience with this. There are doctors nearby who deal with autonomic dysfunction, but the problem is none of them seem to treat patients under 18. The cardiologist put me on provigil for the fatigue; I'm not sure it's doing much help. He wants me to take something for the changing blood pressure, but has to do a couple cardiac tests first to make sure it's ok. Wow, i just realized how long that was. Anyway, again, I appreciate the warm welcome. ~Sarina

Hi, everybody. I just wanted to introduce myself because I feel like I practically know some of you from reading through the posts, which makes me feel slightly stalkerish. My name is Sarina and I?m 15 (much younger than most of you, I know). As of about a month ago I?ve been tentatively diagnosed with pots, ncs and mvp, but I?ve been sick on and off since about 6th grade. My main symptom is pretty debilitating fatigue, although there is other stuff--big things like fainting (or what looks like a seizure) when I stand up or stand for too long, and little things like a very low temperature. It?s been really tough with doctors (one even went so far as to suggest that my mom was drugging me) so I?m relieved to finally not be told that I?m depressed/ anorexic/ a hypochondriac. ?Unknown ailments? never go over well, and I was kicked out of my school last year for missing so many days and fainting during the school day (despite getting straight-A?s), and I?ve found friends to be slowly dropping. Basically, I?m still in that state of ?see, something really is wrong with me!?. I also joined DYNA kids, but everyone here seems to be so supportive of one another. Anyway, this is just my little introduction to the neighborhood..... ~Sarina