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Confused

Sat, 09/10/2016 - 18:50
Hello, I'm not sure where to turn for answers. I've had epilepsy for 13 years and about 5 different neurologists (due to insurance and location changes). My epilepsy seems to be "evolving" and getting progressively worse during the past three years, and especially the past year. Right now my memory is HORRIBLE, I feel like I have Alzheimers. I have so many symptoms and it gets really confusing, so the timeline for the meds is probably off, but I'll try: I am a 25 year old female. I was diagnosed with epilepsy when I was 12. I had grand mal seizures back then, but they changed to nocturnal "sleepwalking" seizures. It was under control on Carbatrol until I was about 17, when I decided that I had hair loss and switched. I went on Lamictal and it caused confusion (couldn't concentrate on anything). My neurologist put me back on Carbatrol, then decided to "try again" on Lamictal. The same thing happened, and I had to go to the emergency room. They put me on Seroquel to calm the thinking down. This worked partially, but I was still confused. Ever since then, every single night while falling asleep I get VERY confused and have completely illogical thoughts. The same thing happens when waking up, but goes away when I lift my head off the pillow. Then my insurance changed, so I had to switch neurologists. I would still have seizures every now and then, so this neurologist put me on Depakote in addition to Lamictal and Seroquel. This seemed to solve things except for the confusion at night and morning (by the way, the hair loss never stopped after stopping Carbatrol). Then, I have a very foggy memory about the timeline of things. My mom died and I think I went into a depression for a while. In 2010 I went back to college and was doing so-so, until the middle of my last semester, in 2013. I started sleepwalking again, maybe twice a month (Thankfully I lived off campus then!). After these sleepwalking episodes, I would be in a "fog" for days, unable to concentrate and very forgetful. I couldn't wake up in the morning and be lucid enough to go to class, plus I lived a mile away and had to walk because I can't drive. Then one day, all of a sudden I just "snapped" and stopped being able to think, like at all. I was having "automatic" movements, like I was sleepwalking but 100% conscious (as opposed to ~50%). Literally like a zombie. When I would talk, I would think of what to say, then hear myself say it, then forget that I "told" myself to say it and it would feel like someone else's voice. I thought that I had died and was in purgatory, and the doctor was Jesus (haha). I had trouble recognizing myself in the mirror, delusions, paranoia, VERY thirsty, among other symptoms. I was in the hospital (they put me in the psych ward!) for five days and they finally said it was a post-ictal state. Then my insurance all of a sudden stopped paying for seroquel, so I had to stop taking it. Fast-forward to last year: I was still having the confusion, but the sleepwalking seizures were happening about every week. I also started having panic attacks in my sleep and would wake up terrified with an extremely high heart rate and sweaty. I would be almost asleep and "jolt" awake like I was struck by lightning. At some point I was put on the anti-depressant Celexa, which did nothing so I stopped taking it. I was constantly confused, even during the day. After a seizure, I would have head pain for about a day, then just mild head pains for the rest of the time. So many other things...night sweats, delusions, paranoia, trouble swallowing, weird feeling in arms and legs, lots more... It seems to "evolve" and change every night. The confusion that I experience at night/in the morning has been sort of a "comparing two things, then realizing that those two things are completely unrelated, then getting scared because I feel like I'm crazy, and I also think of something, then "see" in my head, patterns or images that are completely unrelated. Like if you shut your eyes and try to think about something, your thought would "split" in two and part would be thinking of something totally nonsense (for example, a car driving by, then all of a sudden the car turns into a book) and the other would be following a zig-zag pattern. The reason that I feel that it's worse now than ever is that my memory is extremely bad. I'll think of my favorite band, and not be able to name a single song by them. I'll try to think of my college housemates' names and only be able to name 2 or 3 out of the 11 I've had. It's REALLY bad. When I wake up I have trouble snapping out of the confusion state and staying conscious. I am very absent-minded. My neurologist is two hours away because I moved. I had an extended EEG scheduled for Monday but it was just cancelled on 4:30 Friday because my insurance declined the pre-authorization. Sorry about the long and confusing post. I'm sure I left a LOT out. I just hope someone might know what this could possibly be. It would make me feel a lot better to know that this is a known issue that doctors know how to handle. The last real job that I had was a year and a half ago, before it got REALLY bad. Since then I worked independently as a live-in caretaker at a cat shelter, so that was easy. Now I live in a city and can't get a job or go anywhere in the condition that I'm in. I can't drive so it's really hard getting to a neurologist appointment 2 hours away. I am going to call them up and have them send my records to a new neurologist closer. I've been trying too avoid that since I've had so many neurologists. Thanks for any help! - Emily

Comments

Epilepsy is a progressive

Submitted by ffetherbay3345 on Tue, 2016-11-08 - 10:11
Epilepsy is a progressive disorder, meaning the seizures and symptoms can worsen the longer they are not under control with medications (and still on medications some of the time). The key is finding the right medications for YOU. Everyone responds differently to each medication. All you can do is stick with the neurologist you feel has the mostime invested in your recovery and work through the difficult months to years of trying out every option until they find what works for you. It's a long and tedious process a lot of times, but the alternative of just trying to live with the seizures is much worse. Don't give up hope. You should also cut out any of your personal habits that may be attributing to the increased activity or worsening symptoms. No alcohol, no smoking, limited amount of caffeine, avoid grapefruit as it effects the way your body metabolites the medications and no amphetamines or hallucinogens. Some of these seem obvious, but you'd be surprised by how many people are not aware. 

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