Monday, September 27, 2010

2 ER visits and 1 subluxed neck in 10 days, I'm on a roll!

EDS has been kicking my ass, so in the spirit of feeling like a million dollars:
This will be another edition of copy+paste e-mail that was sent to my awesome natural doctors.

As a heads up, this e-mail isn't filled with sunshine and lollipops...instead sarcasm, which is sometimes even better.

So in the last 10 days I've managed to sublux my neck and end up in the ER twice. I'm on a roll.

Yes, you read it right...I went to the ER again on Friday aft.
Despite trying pretty much everything, the killer migraine from my subluxed neck had gotten a lot worse by day 4 and I was pretty much incapacitated.
I was attempting to get ready to go into work for 3hrs, and didn't make it that far. The dysautonomia started acting up like last time, except my HR would go crazy any time I changed positions. It took me 4 hours to grab a shower and get dressed...I kept having to lay down and take breaks. It was like having the worst hangover of my life x's 10.

Before I decided to go, I talked to a few EDS friends to make sure I wasn't being a hypochondriac about it and was glad to know that I was pretty sane. Only one bendy friend said she wouldn't go, but then when I re-phrased the question, and asked her if she'd go if she were living in Canada where she wouldn't have to pay $15,000...she told me to go. Thank you Canadian health-care.

I went in with my last ER report and some of the dysautonomia info from the EDNF conference...They got me started on fluids right away, and some other IV drugs that were suppose to help with pain and messed up stomach. I asked for the IV to be put in my hand so I could move the rest of my body to avoid dislocations, and the nurse put it in my wrist. Hahaha my wrist started dislocating after 15 min, and I couldn't put it back in because of the line. Awesome. They were also out of beds, and didn't really understand no matter how I explained it, that sitting is the worst thing I could do for myself, and it would affect my entire body. They thought since my neck was supported with my brace that I was fine...So I spent almost the entire 6hrs in a chair and being moved from place to place. I wasn't allowed to lay on the floor either :( The pain meds didn't really do anything, and all that sitting made it worse. My super-powers were getting low and it got to a point where I ended up crying because everything hurt so much. This girl doesn't cry over pain, and hasn't since age 6.

My ECG came back normal, but I think it's because they had me laying down for about 15min before they did it. Right after I got up, my heart went crazy again and anytime I changed positions after that. I let them know but who was I kidding, I was just a patient.

The dr. was a bit of an ass. I'll give him 50 points for knowing the basics of EDS, but other than that he was useless and wouldn't listen to me. He didn't know anything about autonomic disorders esp. with EDS, and wouldn't let me explain, or read any of the info I brought because he had a god complex. He then tried to refer me to a rhumeatologist after I told him they would be useless to me and that I've gone the natural medicine route.He thought I needed x-rays of my neck, after I told him they'd come back normal, just like the millions of other x-rays, and scans I've had. Guess what? They came back normal, surprise!!! He said there wasn't really anything he could do, didn't know what to do, and sent me on my way when the fluids were finished. He did say that the gj-tube was a good idea and would help a lot.

So.......I ended up leaving in worse shape than when I went in....awesome.
As far as meds, I know they gave me Gravol (IV) and Advil (in a yummy pill that needed to be chewed and swallowed).
I have no idea what the other two IV meds were, I can't read the dr's writing on the report. They were kind of useless anyway.

2 days later, and I still don't want anything to do with food, I'm not hungry at all, but am forcing myself to eat. Never, thought I'd say that...
My neck is still crunchy, feels unstable and I'm on day 6 of migraines (which is finally starting to feel a bit better).
That awesome new sleep pattern that we just got started has been thrown out the window. I've been wide awake at 4am for the last two nights. Gotta get back on it...

The one benefit of that epic failure of an ER visit, is that I'm going to use it as ammo. to get the gj-tube surgery moved up asap. At least when it's done, getting fluids, electrolytes and food in me shouldn't be a problem, and the ER visits will hopefully be non-existent.

I'm not sure if it's the weather change, but EDS and dysautonomia has been horrible to a lot of my bendy friends lately. There needs to be a way to do body day...

That was written on yesterday afternoon. As of now, I still have the migraine/crunchy/unstable neck and am still "POTSy". Who need to run the track, when you can just stand up and get your heart pumping like mad that way. Running is over-rated.

"To be kind, honest and have positive thoughts; to forgive those who harm us and to treat everyone as a friend; to help those who are suffering and to never consider ourselves superior to anyone else; even if the advise seems rather simplistic, make the effort of seeing wether by following this you can find greater happiness."
(Dali Lama)


  1. Sending you feel-good wishes. The ER is so unpredictable! I was in the other night for a migraine, too...the benefit was that I was given enough Reglan and fluids to stop feeling quite so POTSy...unfortunately I had to explain EDS to everyone I came across that night and I could barely speak. I think you're right about the tube, though--dehydration should be much less of a problem. Again, feel better!

  2. Thanks :)
    Very slowly turning the corner...
    Hope you're feeling better.

  3. *big ol' virtual hug- that doesn't dislocate anything else*
    Hope things start going better for you! You've had quite the last couple of weeks! =(

    Although a bit different, I subluxated my neck a few months ago turning over in bed, and was wracked with some insane muscle spasms and pain. a friend of mine came over to help me out outta bed and took me to her VERY gentle non-snap-crackle-pop chiropractor who worked on me for an hour and managed to put it back in (and subsequently found a few ribs and my shoulder out lol) - she used one of those energy do-hickey things that sounds like a duck lol (my old chiro had one that sounded like a frog lol) and it was sooo gentle and just used like.. various body movements and ur own muscles to slide it back in so the spasms would stop, no actual popping and stuff.(still hurt for a a week but it was manageable after that).

    ...After all your posts about your dysautonomima, i did a bunch of research and i'm convinced that my mom (eds-er) has crap with it as well.. i had her read some stuff and she was floored at how it fits so many of her weird symptoms that no none has ever been able to explain b4.. so i just wanted to thank you for sharing your stories and for your blog..

    anyway..way too long, but Take care and more virtual gentle healing hugs sent your way!

  4. Thanks for reading my craziness :)
    Glad you've been able to get some of it sorted out, and will hopefully be able to feel like a million dollars. Forget doctors, the internet,blogs and facebook have been the greatest of resources. I think we'd all be lost without social networking...