neilfein

I checked into Robert Wood Johnson in New Brunsick for the weekend, to get a video EEG. Martha visited a lot. Some friends came by as well; we played Apples to Apples and ate cookies. The majority of the time was pretty dull, though - I read a book and a half and dozed a lot. I was there from Friday afternoon to noon Sunday.


No, I didn't have a lobotomy, and they didn't have to shave my head. (I got asked those questions a lot.)
The gist of this is that they video you around the clock, while simultaneously taking EEG readings with a lot of electrodes, more than for the normal outpatient EEGs I've had. The cloth tube leading from my head to a computer off-picture is a fiber-optic cable.

When they see something alarming or strange on the EEG readouts, they can "go to the video tape" and see what I was doing then. (Or vice-versa, I suspect.)

I've come a long way, but not without some steps backwards. I'm hoping that this will provide some clues to help fine-tune my epilepsy drugs. The results won't be in for a while, but my neurologist has already confirmed one theory about why I'm getting lousy sleep at night - sleep deprivation can cause seizures. I don't expect that I'll get perfect seizure control without any side effects, but I'm trying to get as close as possible to that ideal.

epcolt

Hope you get some positive answers.

DnvrFox

My son has epilepsy, along with a lot of other stuff. Sometimes several gran mal per day. The best of luck to you in finding control.

Jeff Wills

I had a grand mal seizure a few years ago. I'm diabetic, and I had a severe hypoglycemic episode. (I'd screwed up my insulin dose.)

A couple days later, they sent me to get an MRI of my head, and they found nothing.


Hope everything goes well.

Wogster

You do realise that can be taken a couple of different ways, don't you.... <rimshot>

neilfein

Jeff, out of curiosity, did you have an EEG? I'm assuming that you haven't had any seizures since.

DnvrFox, sorry to hear about your son. It sounds like he's a lot worse off than I am, and I hope the situation improves.

MIH-Dave

I found out I had epilepsy the hard way. I woke up the morning after my Sr. prom in the hospital. Luckily, I had made it home and was talking to Mom when it happened. Totally screwed my after HS plans (no Cost Guard for me).

I went through the whole sleep study EEG thing. I laugh now, but I didn't enjoy it at the time. Imagine: 17 years old. Up for 24 hrs w/o Caffeine. Hot nurses. Told to sleep with +100 plus electrodes super glued to my head.

After 2 years, my doctor started weening me from the drug (depakote) and I had a second seizure, but we figured out my trigger... Sleep deprivation (long story). I've since only had 1 more seizure (last November) and have been off the meds since the second.

GOOD Luck. I feel for you!

MIH-Dave

On a positive though... That's how I got back into cycling. I lost my license for 6 months after that first seizure and bike everywhere. Also learned that you don't take fast / sharp turns from asphalt to gravel driveways (still have the scar).

Tex_Arcana

Welcome back Neil. Saw your Twitter updates and thought, WTF?

Well you know the old saw, I'd rather have a full bottle in front of me, then a full frontal lobotomy.

BigUgly

FWIW. My brother had/has epilepsy. He had a siezure while driving and ended crashing into a telephone pole in someone's front yard. He was able to walk away but lost his license. He was married at the time and I was in about 16 so my memory of everything is a little sketchy. He had some kind of operation the following year which I thought cured it. It was at a hospital in Philly off Henry Ave. I am not sure what the operation was or if it was experimental at the time. This was the mid 80's. Unfortunately, I have lost contact with him since his wife turned into a crazy controlling ......long story...he's divorced and driving cars again but I never had the chance to actually sit down and talk to him about it. I don't think he has had siezures since and I don't think he is on any meds. Good luck with everything and hopefully you will be back on the bike in no time.

nkfrench 

I have had several auras and some partial seizures since I had a craniotomy to remove a (benign) tumor a year ago. The worst seizure was when I was out alone riding my bike 10 months post-op. That episode highlighted that yes, my brain was short-circuiting and I do have epilepsy. Just before that seizure I had been riding 20 miles on a very hard & hilly course, got very lost (crucial turn sign was missing), was very fatigued, dehydrated and hungry, was supposed to be working overtime, had to get help and a ride from strangers to get back on my map, and I was on a teeth-chatteringly rough road. I was definitely physically and mentally stressed and probably a little short on sleep. Smaller prior episodes that I didn't recognize as "seizures" were related to sleep and/or stress. Some micro-episodes were when I was just sitting at my desk or visiting with co-workers, but I'm chronically a little short on sleep.

I am now on Keppra. I went for 3 days with no sleep after a dose increase, but seem OK now. The only problems I've had at this dose were when I inadvertantly chewed a slow-release tablet instead of swallowing whole.

Fortunately I was alert/aware and I had clear warning auras with a few minutes notice on my worst seizure. On my bike episode I had time to find a safe spot to get off the bike and sit down before things got rough. It was pretty scary since I had no idea what was happening. My first thought was that I was having a stroke.

It's amazing what was related to the epilepsy - the episodes include feelings of deja vu, a little tingling and tongue numbness, a little trouble word-finding or speaking, a little drooling. On the worst episode my head was shaking uncontrollably and violently w/ profuse drooling, one side of my face went numb, inability to speak or swallow, and vague stomach unrest.

The seizures aren't that frequent so my neurologist is just going to see how I do on medication without trying to catch me with an EEG during activity. The seizures weren't that bad ... yet. But it would be a huge lifestyle change for this single homeowner to go car-free. While I do bike commute to work a few times each week, I don't choose to ride 25-35 miles round-trip in harsh weather or more than a few days in a row to allow my body to recover. This past week it's been pelting rain, t-storms, and winds gusting to 40mph... there's always something.

Hopefully when I am weaned off the Keppra in 2 years my brain will have healed up some more from the surgery.

Actually the EEG sounds very interesting to get to see how the brain works.

Does your sleep deprivation cause seizures which then causes sleep deprivation ?

BTW, you look like a sheik with the headdress. Best wishes on a positive outcome.

jagraham

Sleep deprivation plays a role in my seizure activity, but stress and fatigue are bigger culprits. Get me in for a sleep study or a week long video EEG and nothing happens -- I'm far too relaxed.

Hope all goes well with your "Fein tuning". Call me if you'd like to talk...

Judy

neilfein

Close! Subepileptic activity during sleep is causing me to be tired, which can cause seizures.

Jeff Wills

Yeah- my sense of humor is a wittle bit twisted at times. With head MRI's, the people looking at the scans try to find structural anomalies, just to prove they looked closely. Most people have something that they can find and point out. In may case, their weren't any- which brings on the second joke:

Doctor: "Good news: your brain is completely normal."
Me: "You're not a very good doctor, are you?"

No EEGs, no seizures since. About the only lasting effect is a consistent crick in my back from the "arching" that happened. My chiropractor is still trying to get that to loosen up.

Jeff Wills

I thought the line was
"I'd rather have this bottle in front of me than a frontal lobotomy!"
https://dmdb.org/lyrics/exis.blues.html

In my case (since I work in a hospital) it's
"I'd rather have this bottle in front of me than a drunken phlebotomy!"

Wogster

MRI's brings back a memory I would rather leave in the dust (the big bike crash, they did an MRI to make sure I hadn't screwed up my neck, turned out it was nerve damage in my shoulder), do remember though how freaking loud those things are..... Thought the cat scan was way cooler though, it wasn't as noisy, and you could watch the camera spinning around..... Glad I live where there is government health insurance though, wouldn't want the bill for either one......

gotls1

Excuse me while I go collect my eyeballs...they just rolled clean out of my head...

The fact is you did pay the bill for both tests as well as probably some tests for other people you've never met. Unless you don't make much money, in which case some other person had to pay for it for you. This concept that government health care is "free" is laughable.

I've lived in the UK and witnessed socialized medicine first hand. A friend of mine had to wait 10 hours at the hospital (which WAS NOT busy) to have her ankle x-rayed by a World War II era machine. When she asked for an ice pack while she was waiting, the nurse looked at her like she had just asked for a diamond ring. Her grandfather who had heart problems and lived in a largish city (Belfast) was on a waiting list for a quadruple bypass for 3 YEARS!!! So you get to pay more taxes and receive an inferior product. Sounds like an fantastic plan.

The current system in the US is not perfect and some people unfortunately do fall through the cracks, but the vast majority of insurance costs here are paid by private industry and that's just fine with me. As a wise man once said, "The nine most terrifying words in the English language are: 'I'm from the government and I'm here to help.'"

Back on topic though - I hope your tests help the doctors figure out some answers for you Neil.

Wogster

Every country with social medicine is different, here in Canada wait times for less then serious injuries/illnesses can be long, but then you should probably see a GP at their office or a walk in clinic rather then going to the ER, anyway. I've been in the ER at HRRH-Finch several times and care was top notch, and NYGH more times then I can count, usually with other family members. What is funny is that HRRH is in a rather rough neighbourhood, equipment is well cared for, may not be the latest or greatest, but it works well. I think the longest I waited there was 3 hours, shortest was under 5 minutes (broken arm, 1:30AM) .. NYGH is in an upscale neighbourhood, they just completed a major expansion, and have all the latest and greatest stuff, I think the shortest wait there was also under 5 minutes (chest pain, 8:00PM) and the longest 12 hours. Given the choice I go to HRRH, they have nicer staff....