Professionals with epilepsy?

Re: Professionals with epilepsy?

Submitted by gretchen1 on Sun, 2006-06-04 - 18:55

I can no longer work, I'm on Disability. For me that's been the hardest thing for me to deal with. But I was an RN with 3 advanced certifications plus I have a degree as a Certified Midwife. I was controlled the first 5 months I had this and worked but once I lost control, I sz too much to work safely for patients, even for myself but that took me a very long time to come to grips with. I was really angry for a long time feeling I was fired due to discriminatory feelings about epilepsy. That existed too but I did realize if I'm at the bedside, I have to be fully conscious and fully cognitively with it at all times, and I can't be. I wasn't fired technically my position was deleted. Sneaky huh? I have found out after I was diagnosed at I think 48 or 49 that I had also been diagnosed and treated for awhile at the age of 7. I'd never known that but it did explain the simple partials, jerks, lost time, things such as that which to me after that many years indicated I was nuts yet I was tested for nuts several times and my psych tests came out normal. Right before I was diagnosed we moved up in altitude a little more than 5,000 feet and I had my first t/c that lasted 2 hours. I insisted for several years there had to be a correlation there and my then clunker of a neuro stated I was wrong. Now there is a very good research paper that is a few years old stating a sudden rise in altitude can produce sz's or epilepsy in people with low sz threshholds. I felt like sticking that up his nose. Going down in altitude doesn't help me now tho. I had it on my second day of work of course, bad timing, but at least there was medical help right there, it was witnessed by informed others and I had an EEG. I was easily diagnosed plus it's incidence in my family is impressive. I was put on Dilantin and Clonipin which stopped my sz'ing I thought totally but I do look back now, 8 years or so later and wonder if I was sz'ing, didn't know it. I'll sneak in I've tried Keppra 3x. I think this is odd but the first time it changed how my jerks manifest. Even after I had to go off of it due to severe depression plus all it helped were my jerks, the way it changed my jerks has remained constant. Because of that I was tried two more times but each time the depression became worse, occurred more immediately and was unbearable so I had to go off. I never used it as a monotherapy. My experiences working during that period of time I was medicated and controlled were very frustrating. I also BTW during that period of time had substandard medical care. I was started out on Dilantin and Clonipin which I think or thought maybe, stopped my sz's dead. Once I lost control they tried to move me over to Lamictal, Keppra, Tegretol, good grief I can't remember what all it was a nightmare. Another of my problems is I have very severe side effects to the AEDs and I'm still on Dilantin and Clonipin. So far it's all I can take and all it does is slow sz's down. Dilantin lists a side effect of sleepiness supposedly patient's adjust to which at times I wonder does that mean our bodies adjust to and it goes away or our minds adjust to being sleepy a lot. Also short term memory loss. I'll add here this memory loss thing has gotten far worse, and continues to worsen. I get different theories it's the Dilantin, the epilepsy, a head injury that left some scarring yet the scars are in the wrong place for such severe memory loss, or a combination. It's no longer just short term. I have spotty long term loss, holes of lost long term memory now too. That is concerning. Anyway. Dilantin is normally started at 300 mg taken in one dose a day. At that dose at that time that dose achieved therapeutic blood levels. I couldn't do that tho - take all at once. I was too sleepy to work and nearly mindless so I divided the dose and that helped. After 3 weeks of Rx therapy I felt much less sleepy. Short term memory loss remained. In my specialty I had to pass 3 tests each year to stay at my level of expertise. Two of them are very difficult but I'd taken the same 3 tests each year without problems, always passed them. Not necessarily that I always breezed through these tests. They were pass/fail, each year new technology and information was added to the testing material so it was a challenge epileptic or no, but still, I had no reason to worry I would pass. However, I had to take these tests 3 months after I was diagnosed, medicated, and I couldn't pass them yet I was handling my challenging job satisfactorily. I was a night shift manager, the hospital had recruited me, not me them, so they were anxious for me to pass these tests, gave me several tries and finally I passed one. Could never pass the others. My theory right now, and that's all it is, is that the written part, not practicum, was multiple choice. The questions were long medical scenarios with many variables and the potential answers numbered 8. Usually the last 3 potential answers would be something like: "is it A,D,F". Heck if I could remember what A,D,F was by the time I got to G. I think being on Dilantin with my short term memory loss and I also wonder if I have thought organizational problems now looking back, I couldn't keep all that information in my head to answer the questions. I had to chronically go back and back to reread the questions, try to keep the potential answers in my head. I always failed because I timed out. These were timed tests. Not because I got answers wrong. And I mean, I didn't even get close to finishing the tests I failed ever. I'd estimate I left 20% or so of the test unanswered. Always when I took these tests in years past I had time left over when I finished, and passed. I preferred to work the night shift, usually had in my long career but I've never been a person to drink caffeine. It never kept me awake, working nights for so long I didn't need a boost to stay awake either, that was by then my natural rhythm plus it made me jittery but many nurse's on nights drink a ton of Mountain Dew or Jolt and I started having to also. Not necessarily to stay awake but my mind seemed a fraction of a beat behind reacting to patient events. I worked essentially on a critical care unit plus I was a manager of three other large units. I was stretched too thin but that's so common in medicine now I almost feel like why mention it. My primary position was unit manager of an L&D unit but I worked alone. Never, not ever, should there be one nurse in L&D. Things can go sour for a baby or mom in a second, often it takes multiple informed staff to safely handle it. Not just one person and for sure not just one person who is a fraction of a beat slow. What made that unit critical care in practicality is that most of our mothers were teens, my youngest was 10 years old. That automatically puts that patient and baby at high risk. Worse, many had no preneatal care, poor nutrition, many were terrified because they were young and unprepared which made it harder for them but me also. Then there was a woman's prison close by and we delivered their babies. Frankly it's tension producing for staff to deliver babies from patients who are handcuffed to the bed with two guards standing by watching. Then consider I had multiple patients of varying backgrounds in varying degrees of labor and I was a fraction of a beat slow in my reactions? That couldn't be tolerated in the work I did. It was too dangerous so I started drinking about 2 quarts of Mountain Dew each 12 hour shift. So, that was another thing I noted that had changed. I don't know if it helped. A little maybe but it made me so jittery I then had a new problem. I was also being trained in a type of nursing I wasn't familiar with. Like the qualifying tests I had to pass and couldn't, I had a ridiculous time even remembering where the supply room was on this unit. I had to manage this unit eventually so I had to know how to supervise and know what the patient needs were, learn new skills. It started becoming embarassing to me that I chronically couldn't remember where things were, chronically couldn't remember what to chart where, that sort of thing. Learning patient skills wasn't difficult. But organizing several CCU patient'smany needs should have been a breeze for me, but it wasn't, it was very hard. I had a cheat sheet that was shreaded by the end of every shift I'd have to pull it out so much. IF I felt at any time I was dangerous tho, I would have removed myself. I worked with very competent people who pulled up my slack. If I wouldn't have had that, I would have self reported I couldn't handle that assignment. Honestly I struggled, from unrelated reasons started sz'ing again before that training was completed but I do wonder if I could have completed it. I couldn't organize patient's with diagnoses not already known to me. I imagine my frustration and probably a fear factor contributed also to my difficulties in that training. What has always perplexed me though is this incident. In fact it was the last time I ever worked. We were horribly short staffed that night. We also had a high census in my primary dept.I was chronically being paged to my other departments. But this had happened before, I was very experienced, it was for sure a stretch but I'd been in that position many times before, deemed myself a safe staff person, and hadn't called in extra help in similar positions, ever. However on that night without even thinking about it is one thing that gets me, plus as hectic as things were everything was going in a positive direction, no complications and no indicators problems might occur. But I called in another staff person to help me. I also called the most experienced person on our staff. She questioned me several times when she did come in what the problem was, why I had called her knowing I had handled situations like that without to help before. I don't remember what I told her but I do remember feeling like it wasn't unusual I called her in at the time. About 5 hours after she came in, around 4:00 AM we had a delivery. The protocol is I was the primary nurse, she was secondary, meaning I accepted the baby to resuscitate if necessary and we lived so high a large percentage of our babies were born 02 poor, needed aggressive resuscitation because the air is thin. The other nurse would be there to hand instruments in this case to the doctor, add whatever to the IV, not a challenging job. I took without thought the secondary position. She questioned me about that, asked me if I felt okay and I did, told her so. I remember wondering then why she'd asked me that, not once thinking I'd taken the wrong position in the delivery yet I was still performing my duties correctly, safely. This baby was delivered from a 12 year old, her pelvis wasn't large enough, the baby was severely distressed. We swtiched positions, she wasn't as proficient as I was intubating. That was standard protocol. I had no problem with it, automatically switched my positions. I intubated him, did all the correct resuscitation measures and arranged for transfer to a NICU. There was of course a lot of commotion and I responded appropriately but I did feel like I couldn't keep up fast enough for the infant's safety. By then I knew I was just slightly failing to understand immediately things said to me, I was physically sluggish but I think I thought fleetingly, who wouldn't be with the load I've carried tonight. Brushed it off. I'm not super woman after all and that hospital was dangerously staffed. I was so busy and rushing in a blur it was just a little passing thought. The baby turned out fine BTW (whew). I called for a helicopter for transfer and on the way to rushing the infant to the copter in the warmer with one other? I fell and had another 2 hour sz. Now the thing that gets me about that is that I made this apparently gut level decision without any evaluation I can think of to summon help in a situation I'd handled alone many times successfully, plus that was hours before I had that sz yet I never felt an aura. And the things I told you I did feel I am looking at more retrospectively than in actuality, and maybe too critically trying to find the answer as to how subconsciously I knew I wasn't quite right. To this day the only things I know is what I described here. Which has to mean on some level I knew I was loosing it cognitively but it wasn't on a conscious level. It REALLY scares me now I was on automatic pilot some part of that time, with other's health and/or lives in my hands only. It makes me shudder thinking about it now mainly because, I didn't know it. I've learned since then when my cognition is reducing by the time I DO know it? It's usually to the point my emotions are inappropriate to my circumstances, my coordinationi has gone to heck and my cognition is in my shoes. That's way too late to be a nurse at the bedside in any situation, at any expertise level. Education and experience is out the door once that starts. Since that time I've learned when I'm clustering like when I'm sitting down with drops, I don't always know I've sz'd. I can rarely tell I've had an absence and when I have absences they usually cluster and of course at some point, my cognition is dropping but I don't know it. I am aware I have periods of lost time and assume I was clustering, didn't know it, lost significant cognition, the clustering stopped because when I have lost time periods it's always when I wake up I've realized. Probably sleeping off the clustering that stopped. It also scares me, frustrates me that I can sound literate, even seem marginally okay and still be able to write, do other purposeful thiings but I've said and written ghastly things, I've lost friends because my emotions can go into hyperdrive when I'm clustering or particularly after a status sz but for others it's not always detectable that's the problem. I've also done in the past more than now, things even I look back on and think good grief it's a wonder not as much I did these things but I did without killing myself. I was in a hitch hiking frenzy for several years. I'd never hitch iked in my entire life until I got this. At the postictal time I know I thought gosh I'm clever, I wonder why others don't hitch hike. YIKES! Combine that with "fleeing syndrome" I ran away from home I was so frustrated having epilepsy and I mean FAR away and stayed in these remote areas for weeks to several months. I had a hard adjustment, understatement. I had some wonderful experiences I have to say but good grief the getting there. PLUS on one trip I took both my cats and dogs over 1800 miles, hitch hiking. I don't think I'm up to that now. On all trips I left postictal tho which in me almost always gives me this feeling of being invincible. (Want to come live at our house? If there is such a thing, I've been a very bad epileptic the first 3 years or so. I'm told- repeatedly until I said ENUF) I sure do hope I have that out of my system. I get these little postictal urges still but less and less. So far right now I'm confining my "fleeing syndrome" to leaving the hospital AMA so often I'm not even chided for it any longer. It's part of my "profile". I've posted here postictal or clustering saying ridiculous, embarassing, often unreadable things way too often but at the time I don't think anything is wrong with me and that will never not bother me. These last two paragraphs are what finally made me apply for Disability in fact and give it up I could still work as a nurse or for that matter doing anything. I obviously get cognitive impairment and don't know it. My epileptologist has told me this is common. One of his residents told me it was "universal". At least my manifestations of sz's. We're all different. Don't think please I'm hinting, you're not fit to work. I don't think that,have no way of knowing if you are or aren't and I'm not encouraging you to think that. I'm only sharing my experiences. I wish I could find an AED that would help me more at the same time I'm very washed out with the horrifying AEd trials I'm chronically going through. They don't work, I can't get close to therapeutic levels without serious side effects. It's a Catch 22 tho. I sz too much to stop trying yet the side effects have lead to some serious injuries too and I do wonder if they effect me that severely, what is it doing to my brain? It's very hard to have this and work in the medical profession. It's very hard in many other professions that require precision too. I went thru many years of sheer anger feeling I could work with accomodations but just for me I know now I'm not safe. that realization for me took several years to realize. Good luck, 'tis hard. Gretchen