Snowdrifter

Long story short(I'll fill you guys in tomorrow) I've been doing research and POTS just doesn't seem to add up. That might be the symptoms, but I'm convinced there is some underlying cause

Mayo Clinic, in Rochester, MN   I'm happy that I know what this is, but it doesn't make me any better. I still feel like crap, and I honestly feel like I'm still getting worse.   It's not like there is any magic formula to get better. It's not like you broke your arm, so put it in a cast and drink lots of milk for a couple months and you will be good as new. This is all about managing and some people never have it go away, while others have it continuously get worse.    I have the diagnosis, but not the cure. And that is both frustrating and kind of scary. I take that back, it's extremely frustrating. My life has been on hold since this started and I don't know how much longer it will stay that way

Well, I have some great news for everyone!     I'm so happy right now I don't even have words for it. We finally found out what's wrong!   But now we've finally figured out what the deal is. It's something called Postural orthostatic tachycardia syndrome - a fast, weak heart rate caused my an autonomic nervous system reaction to changing body position. My brain was getting somewhere around ~50% of the bloodflow it should have been getting because of this - hence all these obscure symptoms I've been having. Treatment for it is really basic - drink LOTS of water, eat salty foods to increase my blood volume, and switch to a gluten free diet (something about that, IDK why, but it works even though I don't have any issues with gluten).    Then after a few years, I'll out grow it and life goes on to normal!   I'm so happy words can't even do it justice 

Well folks, I wish I had something good to bring to the table here. But we still don't know what's going on. So far I've had extensive heart, blood, neurological, and ear/balance tests to try and find something and so far it's all come back negative. We aren't giving up, but it's been really tough lately.   In the past week, I've gotten exponentially worse - to the point where I feel like I'm starting to lose who I am. I'll forget what I'm doing, where I am, I'll hallucinate, permanently thirsty, bad short term memory, feeling very disassociated, and my heart will jump up to almost 200bpm, then drop down to 40, then go back up to 80-100. Just to name a few of the things I've been feeling   If you guys have ever had one of those nightmares where it seems like you can only half wake up from - where your heart is pounding and it makes it seem like it's shaking you to pieces, that's what I'm beginning to feel like.   It's getting to the point where it is beyond just extremely annoying and crappy - it's getting scary. I've been thinking a lot about my own death lately - enough that I've actually began to come to terms with it and accept it as a possible outcome. 

Been trying to drink some Ensure for my meals, since it has so many vitamins in it. Also an update: landed in Minnesota today. Have an appointment with the Mayo Tuesday morning. Praying that they find something....

Thanks brother. That was really the talk I needed to hear right now. I can't say I feel any better physically, but it made the difference mentally

Today has been pretty rough for me in terms of severity of the symptoms I've been experiencing. And none of the local doctors can find anything. I got one of the handful of answers no one wants to hear: "we don't know" So Sunday, it's last resort time. I'm flying out to Rochester, Minnesota and visiting this place called the Mayo Clinic - which basically specializes in finding the stuff no one else can. I HOPE that they find something. I hope so bad

Thanks for the words and ideas guys. It's encouraging knowing that some of you have been through stuff like this before. And sometimes, you just really need to vent about life. I think what worries/frustrates me the most is not knowing what's going on, having to keep waiting on doctors (feeling lost in the system), and the doctors I do meet seem like they are all pushovers - like they don't want to spend the time to tackle what's really going on. They will refer me to someone else, or try and treat some alternative thing that matches half the symptoms and call it a day like an ear infection. I went on a drive with my mom so she had to listen and had "THE" talk with her about the alcohol. I sure hope what I said sticks. I was finally able to meet with my primary care provider yesterday. Since this all seemed like it came on so suddenly, he was having a question of whether the chicken or the egg came first, if you know what I mean. Are the anxiety attacks causing the symptoms, or are the symptoms causing the anxiety attacks? So he tried putting me on an anti anxiety med. I guess we got our answer because it only seemed to intensify my symptoms, minus the anxiety. And if you are curious how it feels like - it pretty much gave me a severe case of ADD where I couldn't even think clearly enough to have a panic attack. I'll probably try it a couple more times just to make sure it wasn't some sort of first-time, getting used to it type of reaction. Will me meeting with him again on Monday. So we'll see, I guess.

Been trying to stop cracking my joints

I really need to get some stuff off my chest guys. I hope you don't mind me using you as a shoulder to cry on. I'm 18, so this a lot for me to try and deal with All this stuff started happening back on November 28. I went to the ER because I felt like I was going to pass out, I was seeing stars, couldn't feel my hands/feet, poor memory, and there were a couple times where I couldn't talk/understand what was said. They took blood and also did a thyroid test. All that and blood sugar came back normal. Went to the doctors the following day and he couldn't find anything. Tried to treat for some inner ear thing and gave me some anti-inflammatory stuff. Didn't help. Was suspecting some form of seizure since this came is episodes - like waves. So I got an MRI and an EEG and both of those came back normal. No seizures. The doctor there pointed me to an endocrinologist thinking it may be an overactive adrenal gland, so they ran an entire armada of tests and they all came back normal. So we all went to Hawaii over Christmas and I did nothing except get worse. That also ruled out environmental issues. Instead of getting these spells where I feel bad, that has faded into how I feel constantly and now I get spells where I feel even worse. I feel like I'm in a dream state - a nightmare rather, I get horrid panic attacks for no reason, I forget who I am, what I am doing, where I am, my skin feels tingly, I have ringing in my ears, blurred vision, I get hallucinations, bouts of depression, and I feel like I'm "slipping away." Oh, and I have no appetite either(and there's still much more that I haven't said). I've lost 25lbs since this all started just over a month ago. Saw a doctor again when I came back and he didn't find anything. Friend referred me to an infectious disease doctor and he didn't even want to see me. Looked at my symptoms and dismissed it. So I keep getting worse, the doctors can't find anything, it's tough to get an appointment since they are all booked. So here I am, feeling like I'm dying more often than not, no one seems to know what's going on, I'm getting worse, had to cancel school, can't work, can't drive. My brother is never around since he's always doing after school sports, my dad works, and my mom - who I've always been counting on and confiding in when I feel horrible has been getting into hard alcohol and refuses to stop. And she is the nasty drunk too - which just makes me feel worse, and feel like I've been deserted. I've always been the type of person who could have a bomb go off next to them and wouldn't blink, I could have things going to shit all around me and I'd be the person thinking clearly enough to know what to do. But this - a month of dealing with this and no light at the end of the tunnel has turned me into an emotional wreck. This is all so much to try and get a handle on, ya know? What's going to happen to me - will I ever get better, will I die? Is this the beginning of the end? What about my mom? Does she still care? Why does she do what she does? I know I put a lot out there, but I really needed to get this off my chest

Just FYI the bass comes in a bit after 1:10

I threw it together last night. Enjoy! http://www.youtube.com/watch?v=d8ar3EH8smQ