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epilepsy?! (long, some ranting)

Posted by Elizabeth on March 30, 2001, at 6:20:36

Hi everyone. I was recently in the hospital (medical, not psych) for 3 weeks, having been found by my boyfriend breathing extremely rapidly, pale, my pulse weak and rapid, shaking, my jaw clenched shut, my eyes rolled back, my skin cold, and completely unresponsive to anything including pain. He says that I was in shock (he knows a little about this sort of stuff). He called 911, and a mob of paramedics descended on his house. They took me to a small community hospital because it was the closest one to his house.

When I got to the hospital, they became convinced I had OD'd on benzos because I tested positive for them. My boyfriend pointed out to them that the paramedics had given me Ativan at the scene (as I said, my jaw was clenched, and they needed to get an oxygen tube into my mouth), but they refused to send a blood sample off to a lab to get a comprehensive quantitative tox screen. They continued to go with their original assumption, even though all the evidence suggested otherwise. (My boyfriend and parents looked through my medications; all of them were there, including the benzos. There was no way I'd OD'd on my meds, period. Anyway, none of the signs I presented with is at all typical of benzo overdose.)

Because they were insisting that I'd overdosed, they refused to sedate me. As a result, I pulled out my breathing tube because it was causing me pain (which they also were refusing to medicate -- my mother, who is a biomedical ethicist and knows this sort of thing, tells me that they probably committed malpractise). They tried to get me breathing through an oxygen mask, but that still wasn't getting me enough oxygen, and I was hyperventilating like crazy (100/min). So they had to intubate again. (At this point they found a bed at the big teaching hospital which was about 45 minutes away and started trying to get things moving to get me transferred.) This time they followed correct procedure and sedated me. I'd been at the community hospital for three days when I was (finally!) transferred to the large teaching hospital and admitted to the MICU there.

My parents and boyfriend report that this ICU was extremely well-run, in contrast to the previous one. They had me on like 5 different infusion pumps plus the ventilator. It would have been scary if I'd been conscious. (The few times I was conscious, I was confused and disoriented, to say the least. My boyfriend says that he thought I seemed terrified and was crying and stuff. Glad I don't remember any of it.)

After a few days (I'm not clear what exactly they did except a lot of diagnostic tests and supportive therapy), they felt I was ready to breathe on my own, and they took out the tube. (I was awake at this point, and it didn't hurt but it felt really weird and looked even weirder.) They had me breathe through a nasal cannula, which is a bit uncomfortable but far less...invasive! Anyway, things proceeded, eventually I was able to breathe, drink, and eat on my own, and my pulse ox, blood gases, blood pH, vital signs, etc. were all okay, and they decided to move me to a regular medical unit. When they first moved me, I was in this room on the 7th floor and it was the middle of the night. A couple hours after I got there, I started having a lot of the same signs that had been present when my BF found me...tachypnea, eyes rolled back, jaw clenched, shaking, sweating, alternately feeling cold and hot. The only difference was I wasn't comatose -- I was completely conscious and aware of what was happening to me (and boy, it sucked). I have no idea what caused this to happen again, maybe the stress of being moved? Who knows. (It's not even clear what caused it to happen in the first place; the doctors' theory is that I had a seizure (more on that later), vomited, and aspirated some of the vomit -- my chest x-rays were way screwed-up, even when they decided to move me.)

So then they moved me again, this time to the neuroscience unit. First I had a 24-hour EEG. It showed nothing of interest. Then I had an MRI (my third since 1997). Perfectly normal. After that they sent me for a SPECT scan. This, they tell me, was glaringly abnormal (I'm not clear in what way it was abnormal, or what the abnormality indicated; they did say that it was pretty generalised but was more pronounced in the limbic system, especially the thalamus). The neuro team said they thought that it indicated that I might have temporal lobe epilepsy; the psych team felt it might explain my problems responding fully to standard antidepressant treatments. When all you have is a hammer, everything looks like a nail, right? < g >

So after that, I went home. The only loose end to tie up (other than getting the SPECT results clarified and possibly being treated for epilepsy -- I have an appointment with a specialist on seizure disorders on 2 April) was that my platelets were high. The hematology fellow told me to make sure I got plenty of fluids and put me on aspirin and iron supplements. (Thank god, no more of those subcutaneous heparin shots -- ouch!)

Did I mention that they took me off all antidepressants? I can understand this when I was still in the ICU, but after that? Nothing. Barbaric. Anyway, the psych people said to go ahead and go back on the Parnate and bupe, so I did and I'm doing better now. But god, some of that time after I woke up in the hospital was hell.

Anyway, just wanted to fill you in and see if anybody has any ideas or opinions or at least enjoys a good story with a happy ending. It's good to be back.


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poster:Elizabeth thread:58035
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