any NICU nurses with seizure disorders?

[palesarah]

I'm in a pickle. A big, frustrating pickle. I've had a seizure disorder since I was a teenager and have been stable on medication for over a decade, although when I had a horrible spell of migraines a couple years ago the changes on my EEG that were present when I was initally diagnosed had returned. Still, I wasn't having any grand mal (or whatever they call them now) seizures, and was still on my medication, so it didn't seem concerning.

Fast forward to January. After working a crazy day/night rotation stretch that screwed up my sleep, I went to work after getting only 2 hours sleep. Worked my 12, drove home, was so OVER-tired that I couldn't fall asleep but was in bed trying to sleep. Apparently I told my husband that I "felt funny" and then had 2 generalized convulsions within minutes of each other. My medication levels in the ER were low, they medicated me & DC'd me and I spoke to my neuro doc on the phone the next morning- he raised my dosage and scheduled an EEG for a few days later. I didn't feel safe working until I got some answers so I spoke to my boss about it. My EEG showed the same changes, nothing new, and my doctor felt it was just an isolated incident due to sleep deprivation and low meds levels and OK'd me to return to work but not on crazy rotating schedule. Employee Health however decided I needed to be stable on my higher med dose for 2 weeks before letting me come back. Which was good, because I had another seizure, when I was home alone. I realized that first week I was home that I was having partial seizures where I didn't loose consciousness that really didn't affect me or my performance at all- had probably been having them for years and just wasn't aware. That day I was feeling pretty wonky (is that a word?) for about 4 hours, then felt this horrible sense of "impending doom" and HAD to lie down. I lost consciousness for 20 minutes, woke up with my dogs on top of me, and my right had clenched around a piece of dog kibble, feeling very "post-ictal". Back to the Dr's, added a second med, switched to a neuro within walking distance because the neuro doc I'd been seeing since childhood was over an hour away and getting a ride there this often was getting impossible. New neuro agreed with old neuro's plan, ordered an MRI, but kept me out of work. The night before my scheduled MRI, had another generalized convulsion and hit my head. So, that's 4 in about 6 weeks. MRI was fine but neuro doc upped my meds and wanted me out of work for a few more weeks.

I was finally starting to feel "normal" again, free of the partial seizures, and then some of the side effects of the med I've been on forever became intolerable (hand tremors, vision changes, 24/7 nausea). So now while we readjust (starting a third med, increased my second, tapering off my first over a period of about 6 weeks total) I am out of work. I've been home for 2 months and will be out for another 2. My boss has been completely supportive of my situation, but I'm afraid what the outcome of this latest news will be- I've only been in the NICU since last April!

This neuro doc is very cautious about releasing me back to work in the NICU because of the nature of our work. Understandable, I feel the same way, but this is so frustrating. Each addition or increase in my meds makes me so tired and they're all giving me horrid GI side effects. I can't drive so I'm bottled up in the house- I was so tired for the first month that I couldn't even watch a movie start to finish. Since then I've re-taught myself how to knit. But I am desparate to return to work when I'm feeling better, because I feel so useless and am afraid of losing my skills. And now I'm worried that they won't be able to hold my job for me- FMLA only covers 12 weeks. I'm hoping that once the inital side effects wear off they can find part-time work away from the bedside for me but that's no guarantee.

I'm just so upset and frustrated, I guess this was more of a "vent" than looking for advice. But if anyone has been in similar shoes or does have some advice, I'm open. And thanks for reading my vent...

[crissrn27, RN]

Hi, I have been on intermittent FMLA for about a year (kidney stuff). My hospital has warned me that if my hours run, so does my job. They did say I could go PRN after that but I would lose my beneifits (I have all the insurance on 3 kids and hubby). My NM is NOT very supportive, so since yours is maybe something can be worked out. Hope everything turns out ok. criss