[ I'll be honest, I'm writing this more for myself. I'm trying to get all of what I know together so I can say what I need to say to a neurologist without being looked at like I'm crazy. If you happen to read through the whole thing and have any advice, I'd really love to hear it.]
It is honestly the worst feeling in the world when you know you have a serious medical issue and your doctor can't give you a diagnosis.
I've been dealing with this problem since 2006. I can only describe my problem like a seizure. They only happen while I'm sleeping. Severe shaking, trouble breathing, and serious fatigue the whole day after. It's been really unpredictable. January of 2007, they seemed to just go away. I didn't have a single problem sleeping, nothing. This past August, they seemed to have returned with a vengeance.
Now they're much more violent, they last longer and the side affects are way worse. When I first started having these episodes, I would wake up right before it happened and would have to trooper through the whole thing. It wasn't too bad, they didn't seem to last long and I would be able to calm myself down. I'd also be able to tell you exactly what I felt, what happened and an estimate of how long it lasted.
I had one this morning, and I don't remember a damn thing. The only thing I can remember is hearing someone breathing really hard and thinking how I had to get up and go to the bathroom. A couple seconds after that, I realized it was me breathing, but I wasn't feeling it. It's like my body and my brain weren't in sync. Then it's like they finally caught up to each other and that's when I really was aware of what had happened.
After these seizures happen, it takes a good 10 minutes for me to get it together. My muscles are shot, I can't move myself and pretty much I just lay there as dead weight and cry hysterically. Zach tells me there's a bunch of times that I scream at the top of my lungs, like I'm trying to get someone to help me.
The after effects are cruddy, as you can imagine. Right now, I'm very tired. I'm very emotional and feel like crying. I have a headache the size of Texas and my sense of feel has intensified by a thousand. Just rubbing my nose is the weirdest feeling.
I've had an EEG, and it came back normal. This morning the advice nurse at Kaiser recommended that I go to the emergency room and have tests run. I don't know how much good that would do. ERs are for people who are really in an emergency. Not someone who is okay right now but just has an issue.
I think that this might have something to do with my RLS. I was diagnosed with Restless Leg Syndrome 2 years ago, and it's only in my left leg. Evert time one of these seizures happens, my left knee always hurts after. Not just like a small ache. It's an intense burning, throbbing pain. I'm not on any medications for it, so I'm going to bring it up with my new doctor. The one I've been seeing doesn't seem to believe a word I say and looks at me like I'm wasting her time.
Sometimes I wonder if I'm wrong, but what I wrote is all I know. All I want is a doctor to look at me and say "Don't worry. We're going to find out what's wrong."
Is that too much to ask?
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