I wrote this the first week in November (11/4/2012) but I forgot to publish it.  Here you go

So, Friday night I went out with friends. I decided I was well enough I could drive down to Denver to have dinner. Then I went to a (an after) halloween party, because my friends were going. Not a big deal, I had one drink… more of a social gathering. Somewhere between dinner and the party I got a headache. I took some Advil, and tried not to think about it. By the time I got back to my friend’s house, my headache had gotten significantly worse. So I took an extra Morphine. Problem is- they are extended (NOT instant) release morphine- so they don’t really work for acute symptoms. After an hour or so of laying down I called my mom to come get me because I couldn’t drive home (from a combo of medication and a headache).  Anyways, she gets there to pick me up and we decide that due to the severity of my headache- and the fact that I was hospitalized last time I had one- that I’d suck it up and go to the ER.

I get to the ER and I’m pretty nauseous from my Migraine headeache. They took me to Triage and I demanded a ‘barf bucket’. Soon after I was in the waiting room, dry-heaving. But it wasn’t normal dry-heaving. I ended up figuring out it was actually esophageal spasms. What that means, is each time I felt like I was going to throw up/had dry heaves, it was continuous. So I couldn’t take a breath of air. Basically it was like the opposite of swallowing. My muscles were just pushing upwards, so my throat wouldn’t open up for me to breathe. My face was turning all shades of red and probably purple and blue. It was so bad- I remember the old man across from me in the waiting room saying “Come on Becca! Breathe! Breathe!”.  It’s kind of funny now-but sad at the same time. I guess my mom was telling me to breathe in a similar fashion, so he felt it appropriate to join in. It’s all a bit vague to me, because I was SO sick. The next thing I remember after the stranger rooting for me to breathe, was climbing into a bed that they actually brought OUT to the ER waiting room for me. I’ve never ever seen them do that… and I’ve been to the emergency room a lot. At the time I was very thankful, because I could barely breathe, much less walk more than a step back to a room.

They took me to room 6. That’s all that I remember until I felt the pain from a spinal tap, which was probably around 6 hours later. I was curled up in a ball in a bed, barely coherent, but I remember the needle in my back being quite painful. I’m probably the only 24 year old I know, who has had 3 spinal taps within a year!

From what I have learned, after they wheeled me back to my room, they put an IV in my right arm AND in my left arm- just in case they needed both. I was incoherent could not say my name, where I was, or respond to simple commands such as squeeze the doctors with my hands, or move my feet. I’m really not sure what sent me on a downward spiral so quickly, maybe a lack of oxygen?… or just the severity of the pain? They immediately gave me phenergan and benadryll to ease the nausea. It did not help my headache so much, but made me sleepy- which in a way was helpful. I also ended up with two doses of zofran (8mg) and two doses of dillaudid (for pain).  Due to my neurologic symptoms (and general unresponsiveness)  the doctors (yes- plural) decided to give me a CT scan of my head. They thought I might have bleeding in my brain, or a stroke. Apparently my nurse, Kit, remembered me from last time I was in the ER just a few weeks ago. Actually a lot of the nurses/doctors remembered me. Anyways, the ER nurse was so concerned that he went back to the CT Scan with me, and stayed the entire time- over an hour.

Small but dangerous! (My 6 lined up lumbar punctures…) OWW.

Luckily that turned out fine, and some time later I had the Spinal Tap (aka Lumbar Puncture). I had my mom with me, who was able to judge things and fight for me. She told them if they were going to do another spinal tap- my third this year- that they had better call my rheumatologist and ask her what tests she would like performed. Good thing, because she ordered lots of “odd” tests that the ER doc had never heard of.

Looks small, until you realize each of those holes was into my spinal cord- you know the NERVE CENTER of the body! Pain doesn’t begin to explain it after the 4th or 5th timeUPDATE: So, I got the spinal tap... 6 times! Each time more painful than the last. (NOT Normal.) I forgot to mention I couldn’t sit up for at least 4 entire days. I had to lay flat or stand up (including to eat. Because of the immense pain sitting would give me, and not to mention the literal instant migraine. It was a hell of a few days… I was starting to think they had cause permanent damage when the 4th day rolled along and I could still barely move without agony. Luckily in the next few days the pain dissipated. Here’s my ‘holes’ (each one INTO MY SPINAL CORD)

They ended up letting me go home way later that day, when my labs came up ok. My labs were actually all over the place (Eosinophils, Lymphocytes, and Erythrocytes for the most part out of whack), but nothing acutely severe came up I suppose. I did have RBC (Red Blood Cells) in my spinal fluid- ABNORMAL. But we have come to the conclusion that since they stuck me so many times, that there was blood transfered into my spinal fluid.

So now, I have an appointment with an Immunological Neurologist  early in December (referred by my Neurological Rheumatologist (CNS Rheumy)). This should hopefully get to the bottom of these attacks, along with another strange symptom I have been experiencing.

NEW SYMPTOM: Every once in a while (a few to several times a month) that I remember, I will wake from sleeping in an almost seizure like state. My entire body is shaking somewhat violently, I can see, but I cannot talk or move at all. I try desperately to move my hands or anything, but nothing moves until the ‘episode’ is over.  I almost called 911 the other night when I was home alone. It is absolutely terrifying. And the strangest part is that I THINK it has something to do with laying flat. Whenever this new problem occurs, it happens over and over for a couple hours. As soon as it’s over I sit straight up and try to compose myself. But I have noticed, if I try to lay back down- even if I do it slowly- I slip back into this violent shaking state. My head shakes the most. My mom has walked in the room when it was happening twice now, so I KNOW I’m not dreaming it.

Has anyone else ever heard of anything like this?? I really do not like it at all.

Hope everyone is doing well… and looking forward to the holidays!

-Rebecca xoxo