Trip to the ER

So, I don't know how many people actually read this but writing it helps me vent so- here it goes. Friday night my daily headache sky rocketed to a debilitating mind numbing pain. Typically, I can take some medication, lie on a heating pad in a dark, quiet room and try to sleep it off. Not this weekend. By Saturday morning I had barely slept and could not think or move without feeling stabbing pains. I asked my husband to take me to the ER. Now, it's been 3 years since my initial diagnosis and I have not had an ER trip until this point.
We got there around noon, had a CT around 3pm and pain meds around 5. They then told me they recommend a spinal tap to "rule out infection or hemorrhage." The first spinal tap left me feeling nauseas, dizzy and clammy within the first 5 minutes. So much so that they had to remove the drain and let me lie down because my blood pressure dropped too low. The second spinal tap was done in radiology. They successfully drained 4 vials of spinal fluid which took about half hour on a tilted table under x-ray. Overall, this is not a fun experience but could have been much worse.
I was discharged from the hospital around 11:30 after being told my spinal tap was clear and my Chiari is "not large enough for surgery."
Now-for those of you who have Chiari or Syringomyelia, you may understand how common this is. Let me first mention that when I walked into the ER the registering nurse told me that those are "awfully big words!?" I had to explain to the Emergency Room doctor what the surgeries recommended to me would entail and why my headache was not just a migraine. It makes you feel...lost when you are in a hospital full of doctors and nurses and surgeons who spent years learning about medicine and don't know what you are talking about, or worse, that it causes real pain. This is a HUGE reason why we need to spread awareness and educate. How are we supposed to find a cure and get answers when our physicians don't have them!?
I left the hospital feeling sad and still with a headache. I didn't go there expecting answers, just pain relief but it would have been nice if someone besides my husband knew what I was talking about. Now I am home. I spent the whole weekend in bed. My head still hurts and now so does my back where they stuck me twice with oversized needles. I had to miss work today which (for lack of a better word) sucks! I am feeling stuck. I have spent the last three years running in circles. What's wrong? Where do I go now? What are the answers? Should I have surgery and then back again. I feel like I am at a stand still. I need to make a decision to move forward. Even if I have surgery and it doesn't help, at least I will know I am doing something to make a change. At least I'd be trying. I need to fight for me since no one else is going to.
So today, I went to my PCP and got some temporary pain relief and also a few numbers for local neurologists. I have a call into my surgeon and an appointment scheduled with and ENT for a cyst that showed on my CT. I need to make a move. I need to try.
I know I said this in my last post but I feel I should say it again-my husband is my rock. He was there by my side the whole night before our ER trip, in an uncomfortable folding chair at the hospital while I was vomiting in pain and we were both starving for food and entertainment and he even left work early today to take me for my follow up because driving was too painful. I am beyond grateful for him. He understands when no one else does. He is truly a blessing and though I hope I never have to, I hope someday I can be those things for him.