I haven't had a problem but my father has.  I don't know what caused your seizure but you were probably not thinking clearly and that is why you reacted so.  I've had to call 911 for my father twice.  The last time he was whiter than I have ever seen anyone because he was bleeding.  He really got belligerent with me.  He couldn't stand up and when I tried to help him it was like picking up dead weight. He was really mad at me but okay when the EMT's came.  His blood count/volume was dangerously low at 6 when it should be at least 12 for him but the doctor's are okay with it as long as it's a 10.

 

Please don't feel bad about it.  I'm sure the EMT's have had a lot of similar experiences.

 

I hope you are feeling well and know why you had the seizure. 

I work partly with neuro ICU patients. Yes, don't feel bad about being combative. It happens, sometimes, after such an event. 

 

I would bet there's probably little connection between having a pouch and having a seizure. 

When I was in law school I witnessed one of my law school professors have a "grand mol seizure" in mid lecture.  It was very scary.  One of my then classmates was a registered nurse like Jan Dollar and Rachel. As he was having the seizure, she told me and some other fellow students what was happening.  My professor was an epileptic.  He was not combative, he went from lecturing about evidence to what looked like a catatonic state. His hand was balled into a fist and he was rubbing his head and face with his balled hand.  He had a glazed look in his eyes and he was moaning incoherent words. After a few minutes he snapped out of it and initially didn't seem to know where he was, but then after a dazed moment or two, he suddenly regained his composure and resumed his lecture, but not where he left off.  He never said a word about it and I don't think he knew or was cognizant of what had just happened. It was very frightening to watch and I had no idea what was going on until my nurse classmate told us.

Seizures come in all shapes and sizes, have a dozen different origins and can be treated different ways.

I have left temporal lobe epilepsy. My seizures were diagnosed in 96 after a rather strange series of unexplained petit-mal seizures. Petit mal are more gentle and less violent on the outside. On the inside they are no party.

They range from an abscent feeling/look that can last a few minutes to an hour all the way to being ripped out of sleep (mine often happen when I am sleeping) in the middle of the night, the room/bed spinning on its axis and me feeling like I am living through the worst hang-over of my life. I can't move, turn over or get a handle on it, must be put onto my side or stomach until it passes and finally feel wrung out, exhausted, sweaty and out of breath. I've been on meds for it (tegretol 200mg/3) for the last 19yrs.

The only rules for me are never to take LP meds (dissolve in the colon! so not pouch friendly), avoid psycadelics, certain computers and computer games and alcohol...I hated swings and rides as a kid and would scream my head off to get off. The nurologist says that I was probably having seizures even then without knowing it. No more rides (other than the kiddie rides) for me either.

I get tested every other year, still there, and keep up the meds.

Hope that you are not epileptic, that it is a one-off and that you are better now.

Sharon

Thanks for your replies, especially Sharon. You have so much going on in your life, I appreciate you taking the time to comment about mine.

I'm out of the hospital now and only remember bits and pieces of the event until I was in the ER. (My wife says I was shaking and tensed up with my eyes rolled up).  I do remember being very upset because the police were there and they put me in hand cuffs for the ambulance ride and then I was put in wrist and ankle restraints at the hospital. At first I didn't know what day or even what year it was, but that began to come back by the time I was in the ER. I refused to let them do any tests until I was removed from the restraints. It took a while, but they finally agreed.  I had EKG, EEG, Cat scan, chest x-ray and MRI. The tests showed nothing except some brain shrinkage (I forget the word the neurologist used) which is not unusual for someone my age (69).  To lessen the chances of a repeat of this, I have started on Trileptal (Oxcarbazepine).

I doubt if this is related to my autoimmune problems, but who knows? I am also wondering if there are any hereditary factors. I just found out that my younger brother had 2 episodes like this when he was in college.  I've also read that insufficient sleep could be a factor. That certainly would have been true for my brother in college and also true for me.

The worst outcome from all this is that I am not supposed to drive for at least 6 months (New York State law). This seems really excessive since this has only happened once and it happened in my sleep. ( I find myself wondering what would have happened if I had just been left alone or no one else was with me. Would I have just gone back to sleep and never have known it happened?)  We live in a rural area and have to drive 10 miles just to go grocery shopping. While I am recently retired, I can't afford to be retired and was looking for a part-time job. This would probably require transportation. I feel stuck and punished for something that is not my fault.

Richard

Richard,

 

Although the not driving sucks, I am an insurance defense attorney, and in the past I defended epilpetic clients who had seizures while driving and caused serious motor vehicle accidents.  In one of them, my client, who was a middle aged woman, reported to me that she had a history of epilepsy and seizures and that she had taken medications but had done really well and was taken off of them.  Based on what my client reported to me, I filed a "sudden and unanticipated emergency" defense to liability for the injuries of the young man whose car she rear ended.  I also requested her physician's records of treatment to see if they backed up what she told me.  They did not.  What the records showed was that her Doctor had prescribed the meds but had never told her to go off of them.  He also hadn't seen her in the 2 years prior to the accident and in those 2 years there was no notation that the medical instructions to take the meds had changed.  Based on this evidence, I was forced to withdraw the defense to liability, and my client's insurance company had to pay most of her $100,000 liability policy to the young man who was injured when my client's car violently rear ended him after her seizure.  We mediated the case, having admitted to liability, and the only defense was excessive treatment by the young man, which the mediator partially accepted.

 

The moral of the story is that the driving instructions are for the safety of both you and others, however inconvenient that may be.  I in my 23 year legal career have been involved in numerous cases resulting from automobile accidents caused by medical emergencies, some of which were sudden and anticipated, and some of which were not, but many of those accidents caused serious injuries. One that I remember sadly caused the death of my client and I then represented the man's Estate.  He was rendered unconscious by a medical event according to witnesses, his vehicle hit another car (seriously injuring an occupant), then careened into a stonewall and exploded.  The autopsy found his death was due to blunt trauma from the impact.

In my I was told that if I did well on the meds and did not show any seizures over a specific period of time that I could drive without any problem. 

I went 2 yrs without a seizure after they changed my original seizure drug to tegretol (tegretol is carbodiazapam) and am well under control.

You have to make sure that the drug disolves in the stomach and is not time released or slow release (I had huge problems with slow release...They accumulated in my pouch and then at one point after continueing to have seizures I suddenly fell asleep for a very long time...they all dissolved at once!)

There is a test phase where you learn which meds work best for you and which don't. Once you have it under control you may well be fine to drive...just don't rush it.

ps. Your doctor may have mentioned that something had atrophied in your brain...in my case it was in the left temporal lobe... the hippocampus was atrophied and possibly since childhood)

Hope that you feel better soon

Sharon

My understanding is the anti-seizure meds work well as long as people take them.  It's when people stop taking them that the problems happen, as my client found out.  My client's explanation was she felt fine and didn't need them.  Subjective assertions like those, not backed up by a Doctor's recorded order, do not cut it in Court if a person has been treated for seizures in the past.  My office has handled a few cases involving motor vehicle accidents caused by persons having seizures at the wheel of a car.

 

I would pay careful attention to the laws of NY or whatever jurisdiction you live in because there may be dire consequences for you legally if you drive in violation of doctor's restriction.  It's a very risky situation and one should know the legal consequences of one's actions.

I feel fine now. That's the problem. I am "punished" as much as someone who has multiple seizures even though I had only one while I was asleep. I don't doubt what you say CTBarrister, it just sucks. Transportation around here is a necessity and the bus system is lousy.

 

There might be State transportation services in New York available for those determined to be disabled from driving under State law by virtue of a medical condition.  I would recommend looking into that.  I am not sure which branch of government that would be, but I would start with the one that took away your license and ask them. 

That's the strange thing.  No one has actually taken my license. I was only informed of this law by the neurologist who treated me. In NY our license also functions as a photo ID for purchasing alcohol. (Some places check no matter what age you are.)

I am only speculating - but you might be getting a letter in the mail from your Department of Motor Vehicles, in regards to your license.  From what you are saying your Doctor told you you can't drive, and he may have mentioned that law because he is under some legal duty to report your condition to the DMV (there could be an exception in the privacy laws in this regard).  So a letter could be coming.  Otherwise I would suggest you speak to a local attorney that you use for your legal matters.

 

There would be no reason for a doctor to bring up any law with you unless he had a reporting duty of some kind pursuant to said law. Did he ask you if you had a driver's license in NY?

http://www.cogrehab.com/resources/Whathappensto.pdf

The comment in the last paragraph is interesting.  

It appears that I keep my license, but I better not use it and risk being in an accident.

I will find out more when I visit my Dr next month. (on my bike)

Seizures are not a disease, but a symptom, like a headache or fever. The difference is that it is a symptom that can render you unsafe to drive. Seizures can be a single episode where they never discover the cause, or they can recur at any time. There can be triggers, but difficult to say what that might be since you were sleeping. Further testing may unravel this, but maybe not. Perhaps you have sleep apnea.

 

Your doctor may not have reported you to the DMV. You'll find out if he did. It may seem harsh and punishing to suggest you refrain from driving, but it protects others and you.

 

hope uou have good news at follow up.

 

Jan

There are laws in my state that don't allow for people to drive after such events.  I had a tax client that is diabetic and twice he totaled cars as he blanked out, or whatever and eventually drove off the interstate and in one case he crashed into the interstate bridge on another.  He told me he even woke up in a city 25 miles north one day and didn't have any memory of how he got there.  He was mad, the last time I was able to work tax season, because he had to wait so much longer to get driving privileges back.  He was wealthy enough to call taxi's or hire drivers and he wife drove.  They were both retired.  I thought to myself that I would never ever want to drive again, if It'd happened to me.  I'm a wimp.

 

I know your case is different because you weren't driving and you don't apparently have a condition that will cause further seizures.  Both of his accidents and the one where he woke up somewhere unexpected were serious.  The vehicle ones were because they were large Tahoe like vehicles that could have ended in his death and maybe many other people as well.

In France the equivalent of the DMV has strict rules as well as a medical review board for all sorts of problems that may empare your driving skills.

The rules are availilbe on their site as well as through a medical board office.

Call the DMV and ask. Enter driving and seizure activity.

They do not take away your licence if you have had a heart attack because they are scared that you may have one while driving. They don't take them away from deaf people for not hearing the car horns so why would they force you to stop driving after 1 night seizure?

NIght  or sleep seizures are different from daytime or awake seizures from what I learned...they are very different processes. My seizures came during sleep (still do other than very rare occasions). 

I do not fall down and froth. I have abscences or huge, incapacitating dizzy spells.

Neither stop me from driving and I get a sort of warning prior to it grabbing me and taking hold (if I am awake).

You need to consult with a seizure specialist and have tests done, find out (if possible) your triggers, if it was a single incident due to a chemical imbalance or other imbalance tand if it can be controlled.

If it was a one-off due to a specific or unknown cause it should not stop you from driving...that is why you need the investigations.

I have a week every 2yrs where my nuro makes me stop my meds then sends me for an EEG and other tests + a scan...the results tell him a lot (he tells me nothing other than to continue taking the meds).

Hope that you get some answers soon

Sharon

 

My manager's wife had a similar, single event and was indeed subjected to the same "punishment" (as you are calling it) of not driving for 6 months while they placed her on meds, and did a work up for her new seizure disorder. Just because the one seizure happened at night for you doesn't make for an exception to the rule, and as everyone previously mentioned, it is for the safety of all that they follow this rule.  Just have to be careful!!

I appreciate everyone's advice. I'm about to try biking to town--about a 20 mile round trip, but with hills. I used to bike a lot, so I guess I will have to get used to it again. At least this didn't happen in the winter. It would take me forever on my old cross-country skis!

Richard

Beware of bikes!

Hubby just broke his ankle in 3 and the elbow in 2...seizure + casts make a very sad mix!

Please exercise with caution

Sharon

Thanks Sharon,  I made it back OK, but may not be doing it too often. Some of the hills are too much for my knees, even with my granny gear, and I have to walk.

Sounds rough. I guess your wife does not drive or there are no buses in your area? Or maybe a neighbor who can drive you? Can't imagine 20 miles on a bike on a regular basis unless you were used to it.

 

The thing is that seizures do not occur for no reason at all. Something cause irritability in your brain to trigger it. I hope they get to the bottom of this soon for you.

 

Jan

Thanks Jan, My wife does drive, but also works and was not available. We are on a bus route but they are infrequent. You better not miss the one home, or you will have a long wait.

I would suggest that you call the doc's office and explain your transportation dilemma. Ask if they can accommmodate you for an early morning or late in the day appointment, so maybe your wife could take a few hours off work to drive you. Employers should provide time off for family medical issues, even if it is without pay. Hopefully this will not be a long term thing...

 

Jan

Sorry to hi jack this post

Sharon, I'm so sorry for all your Aliments. I have just been put on Tregerol for possible neuralgia. The doctor gave me time release but I have a jpouch. I'm a bit worried about these drugs And side effects.  Already at a low dose I'm feeling unwell and tomorrow I have to up it. I can't imagine being on these for a lifetime. The regular made me very very sick. I don't know how you do it. You gave me hope.

Catintnehat, I feel your pain. I live in the NY burbs and also need a car to get around. I recently broke my wrist and could not drive to 8 weeks. It was awful. I hope you do well on the meds. I find them scary to be honest.

Allykat,

I was very concerned about the seizure meds (especially with the extended release) and I was right...extended release is not pouch friendly at all! 

Better to take lower doses 2-3xs/day than 1 dose that does not dissolove correctly.

I was a bit sleepy and sluggish in the begining until my body got accustomed to it...naps help a lot. I needed a lot more sleep on the meds although the change to tegretol (200 3xs/day) helped my sleep patterns, prevented the dizzies and got rid of my seizures nicely (never 100% gone but around 95%).

Another warning is that in the case of any flu or other pouch irritation like pouchitis you need to monitor the output of your pills...I found that some would  come out whole. (didn't realise it until I started getting seizures again)...I had a bad bug and everything ran like water.

On the plus side, it was a great mood regulator!

Hang in there

Sharon

Sharon, I got very sick on the regular that's why the Dr has me trying this. Do u get blood work done frequently? Do u take with food?

I take it 3xs/day to spread things out. 

I only drink fluids in the morning (coffee, water, juice) so that dissolves things nicely and the others with meals...sometimes I take my last one at bedtime but I am a night eater so it is usually on a full stomach.

I am supposed to get my bloodwork done regularly but I only get it done about 1x/yr.

So far no problems with it.

Sharon

Jan-"Seizures are not a disease, but a symptom, like a headache or fever." OK, but a symptom of what? The tests showed changes consistent with someone of my age. I'd almost prefer that they did find something, so that they would know how to treat it.  Now I feel like I'm on a heavy duty med (Trileptal) just because they don't know what else to do.

As for transportation. I have 4 different doctors in 4 different directions. My rheumatologist is 60 miles away, my GI is 20 mi. Sorry to belabor this topic. I guess I have too much time on my hands.

A seizure is the result of irritation of the brain. With a grand mal seizure (which is what seems like happened in your case) the entire brain is irritated and discharges electrical activity that is disorganized. A single seizure does not mean epilepsy, but with your family history and a grand mal as a first (observed) seizure, it is important to be very cautious. If you know you are subject to sleep deprivation, that is something you can work on, since it is a known trigger. 

 

But, with your age, it is possible this could be due to a TIA (transient ischemic attack) or mini-stroke. Difficult to sort out for sure. You may need more testing.

 

It does not sound like you have good transportation options. My husband and I used to dream of retiring out in the country, for a simple life. But, we wound up choosing to live in the suburbs, where our doctors were close by. Many people move to accommodate their medical care. Happened to my in-laws. Still, I know that option is not always feasible. I wish I had some suggestions for you.

 

Jan

catinthehat  ( BTW I love your screen name - that's been one of my favorite books since I remember reading them  

 

I think you are right.  I have health problems that just the symptoms are or are not treated. For example both of my feet are numb.  It took me almost 10 years to finally get that diagnosis from a neurologist who said he didn't know the cause but come back in 6 months so I can check to see if it's worse and/or affecting your hands yet.  He gave me a prescription that got rid of the pins and needles feeling and the zaps of pain that ran down my legs.I looked it up and there are a thousand reason's for the cause. He also knew that they would never get better!  How the hell did he know that if he didn't know what caused it in the first place!!!!  I have a better neurologist now because he put me on the correct daily medication for my migraines.  The first guy didn't in treating me for several years.  I have other problems too that are lumped together to assume one thing or another - like Restless Legs.  I take a seizure medication for them and I don't know why it works!  Sometimes I need to take 2 doses because the problem starts in the late afternoon while I am awake. I have other examples but these are a few that drive me nuts.  I'm taking seizure medication but I don't have seizures.  I think it's like Remicaide, Humira and other drugs  used to treat UC, and Crohns.  No one searched for a cure for IBD patients they just found out that after using it for arthritis or whatever that it also helped people with IBDs.

 

I don't mean to hijack your topic, just wanted you to know I understand your frustration 

 

 

They started me on seizures meds for possible Terimgal neuralgia. I say possible cause the neuro says no and the oral surgeon says yes. All this started with a extracted tooth. I don't know how you r handling these meds cause the tergatol is making me very very sick And I'm not a happy camper either. 

Terimgal neuralgia sounds quite different than a seizure like I had but they apparently use the same type of meds to treat. I am on Trileptal (oxcarbazepine), starting at a low dose and increasing weekly. It is not making me sick but very tired and mild headache, bodyaches. This morning I went back to bed after breakfast and slept another 3 hours! Definitely not normal for me.  Does the tegratal seem to be helping at all or just making you sick? I had severe burning headaches about 15 years ago that it took them forever to figure out. Turned out to be polymyalgia rheumatica.

I now am very suspicious that my seizure may have been related to the opium tincture  I was taking. I'll be saying more about that in another post.

Richard

I think what Ally is talking about is trigeminal neuralgia (a nerve pain syndrome in the face). While neurogenic pain syndromes are commonly treated with anticonvulsant medications, they really have no other similarities to seizure activity. The anticonvulsants just serve to desensitize the nerves, which can reduce pain and also reduce excitability of the brain cells.

 

Jan

Still have some pain but just so sick. I don't know how you all can take these drugs. 

Believe me Ally, I don't want to be taking these drugs!. The doctors make you feel like you have no other options.

This is so true. I just hope that you adjust better than how I'm doing. Email me anytime.

I feel for you 2 as sometimes the medications seem worse than the problem.