Medical Forum / Diseases and Disorders / Epilepsy / July 2004
Need to vent, please
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Cher - 23 Jun 2004 17:53 GMT My husband has epilepsy.. had 3 grand mal seizures in 1994 and was put on Dilantin. He has not had any since and has maintained on his meds because he drives a commericial truck. He plows during the winter, at night with strobes, and does 16-hour overnight shifts. It kills me because the Dr. said he shouldn't do it, but he says he has to or his boss will fire him.
Now hear this.. the last few days he has missed a couple of doses and had to go in work earlier than his normal start time. THis happened a couple of times. He said at least 3 different days he would be standing there and then 'feel weird', like time stopped, like he has been there before doing the same exact thing, the same exact conversation, and he is watching it from afar.
Has anyone else experienced this? I am really worried about him.
Thanks, Cher
Bob - 23 Jun 2004 18:23 GMT > My husband has epilepsy.. had 3 grand mal seizures in 1994 and was put > on Dilantin. He has not had any since and has maintained on his meds [quoted text clipped - 14 lines] > Thanks, > Cher When he says that he would 'feel weird', he is having a seizure! It's a type of seizure called a Simple Partial Seizure. I have them quite often myself. Those Simple Partial Seizures are called an Aura when they are just a brief warning that the person is going into a Grand Mal seizure. Many people who suffer with Grand Mal Seizures have an Aura just before the Grand Mal.
Simple Partial Seizures & Auras have many variations and when you describe his feelings of time being stopped and doing the same exact thing you are describing the Deja Vu feeling that some people have. Other people can have strange tastes and odors.
All of what you describe is a serious warning. Things are being pushed too far with this lack of sleep and missing of medications. He is already having seizures and the next one could possibly be a Grand Mal while he is driving the plow. Nobody knows for sure, but . . .
Bob
Dawn Compton - 24 Jun 2004 03:39 GMT >When he says that he would 'feel weird', he is >having a seizure! It's a type of seizure called a >Simple Partial Seizure. I have those kind of feelings sometimes and it is not a simple partial seizure. I have simple partials and they are not like that for me. I have the weird feelings when I miss a dose of Dilantin or if the level is starting to fall. I am always needing an upping on Dilantin-I guess I get too immune to quickly and now Dilantin is not working for me.
Bob - 24 Jun 2004 04:36 GMT > >When he says that he would 'feel weird', he is > >having a seizure! It's a type of seizure called a [quoted text clipped - 5 lines] > is starting to fall. I am always needing an upping on Dilantin-I guess > I get too immune to quickly and now Dilantin is not working for me. I have that happen also. It's all "seizure" activity and I often have those feelings after I take my dose of meds and for up to ~1 hour afterwards.
Bob
Dawn Compton - 25 Jun 2004 05:23 GMT >I have that happen also. It's all "seizure" >activity and I often have those feelings after I >take my dose of meds and for up to ~1 hour >afterwards. Yeah, it is probably seizure activity, but I know it isn't a simple partial with me. The feeling usually strongly hit for a couple of minutes, but can stick around for hours. As I said, it is usually because I was late on a dose of meds or if the level is starting and/or is falling. I can usually fix it by taking an extra 100 mg of Dilantin.
gaross - 25 Jun 2004 06:06 GMT > >I have that happen also. It's all "seizure" > >activity and I often have those feelings after I [quoted text clipped - 6 lines] > because I was late on a dose of meds or if the level is starting and/or > is falling. I can usually fix it by taking an extra 100 mg of Dilantin. This is the Idaho Seizure Recognition and First aid page. Several of the websites group Simple Partial with the Aura part of the other seizure types, since we can often have the sensations of the Aura, without it progressing to a full seizure, if we're near to full control. (This chart doesn't mention Auras, but the Simple Partial describes some of the more frequent sensations.) http://www.epilepsyidaho.org/seizure.htm From that page, you can move about the rest of the Idaho site.
(When I was first 'here' and had others who didn't know what to do if I had a Complex Partial seizure, I printed this chart so they could look down to the C.P. part and see what to do and what NOT to do.) G./
Marco - 23 Jun 2004 18:26 GMT > My husband has epilepsy.. had 3 grand mal seizures in 1994 and was put > on Dilantin. He has not had any since and has maintained on his meds [quoted text clipped - 14 lines] > Thanks, > Cher Hello Cher,
Missing a dose could cause seizures to come back. Living on the edge may also cause the seizures to come back. Sorry that the news can't be good at this point, but your husband should indeed not do that and pay attention to your worries. You should convince him that he will loose his driver license anyway (at least for one year) when he gets his seizures back There may be some others out there that can shed some light regarding this boss person that will fire your husband when he does not drive the whole day (from legal perspectives of course).
All of best to you.
 Signature Take care.
Bye, Marco
gaross - 23 Jun 2004 18:40 GMT > My husband has epilepsy.. had 3 grand mal seizures in 1994 and was put > on Dilantin. He has not had any since and has maintained on his meds [quoted text clipped - 13 lines] > Thanks, > Cher Those 2 earlier posts are correct. Missed doses of Any Anti Ep. med can lead to drop out of the Medical levels in the blood. If he were to Lose a Cheap med. like Dilantin for control of his Seizures, the Newer ones that would replace it are about 4x the Cost. At most drugstores, you can get a 7-day Pill case and preload it with each day's dose. If he's to take it e.g. each AM and Night, have a Paper log, he writes down the Time he takes each pill, and try to stay as close to the dosing schedule his Doctor has laid out.
http://efa.org has descriptions of seizure types, the Aura (Simple Partial) can be a Forewarning of other types. One that might be his (if his feeling is Deja Vu type, above) is Right Temporal Lobe based seizures. Newer sites list it now under Complex Partial Seizures.
IF his are like that, those can lead to Loss of Consciousness if they get stronger.
Second, if he were to have a seizure and Injure Someone, if the Insurer finds he has had Uncontrolled seizures, any Liability Insurance he might have, becomes Void. It's not unusual in Ontario for 'loss of a breadwinner' to result in court awards to the Family at Loss exceeding $100,000. Not really a risk worth taking, in my opinion. G./
CyberCafe - 23 Jun 2004 19:28 GMT > My husband has epilepsy.. had 3 grand mal seizures in 1994 and was put > on Dilantin. He has not had any since and has maintained on his meds [quoted text clipped - 14 lines] > Thanks, > Cher What you describe sounds like deja vu, which is a symptom I've had (I have complex partial epilepsy).
I always carry a small supply of Dilantin in my purse in case I need to take them when I'm away from home. This company has a necklace style pill box and a key chain pill box: http://www.epill.com/easysafe.html. I'm sure there are other companies that sell similar take-along pillboxes. That's the first and most important step, taking the medications, and that might be all he needs to do. It's not a promise though. He also needs to check with the doctor to see where his blood level for Dilantin is. If it's on the low side, the medication might have to be upped a bit. With Dilantin it is a better late than never situation. In other words, if a person misses a dose, they can take it as soon as possible (there is no need to skip the dose entirely and wait for the next dose to get back on track).
http://www.epilepsyfoundation.org/answerplace/Social/photosensitivity.cfm has some recommendations about strobe lights. Here's another site, http://www.epilepsynse.org.uk/pages/info/leaflets/photo.cfm, that explains the strobe light problem is really a photosensitivity problem and offers a few helpful solutions. They didn't mention canceling out offending light by turning on non offending light. That means like having a regular lamp on at the same time the florescent lighting is on to cancel out whatever flickering problems might come from the florescent lights. The regular lamp needs to be closer to you than the florescent light. Maybe he could turn on the interior cab lights while he's plowing to cancel out the effect from the strobe light (there are no street lights where I live, which also would help cancel out the strobe lights).. By the way, nighttime falling snow (in areas without street lights) drives me absolutely nuts (but I'm driving much faster than a plow would). Has your husband noticed this too?
Are both the driving and plowing job with the same employer?
Barb
Marco - 24 Jun 2004 05:02 GMT > I always carry a small supply of Dilantin in my purse in case I need > to take them when I'm away from home. This company has a necklace > style pill box and a key chain pill box: Good catch. Though I do not carry a box with me (I only have to take two pills per day in the morning with breakfast and in the evening with dinner), I indeed take two pills with me in my purse.
 Signature Take care.
Bye, Marco
Dawn Compton - 25 Jun 2004 05:19 GMT >I'm sure there are other companies that sell >similar take-along pillboxes. I know that Walgreens used (I believe they still do) to sell them, at least in the U.S. It is formatted to either be able to put on a keychain, around a loop (like pants), or in a pocket or purse. The major difference is that you can't get anything written on it. It only cost me somewhere between 2-5 dollars for it. It even looks the same. It would probably hold close to 5-8 normal sized capsule pills.
Martin Bell - 02 Jul 2004 02:29 GMT Hi Cher,
I'm suprised no-one has mentioned that HE SHOULDN'T BE ON THE ROAD!! I'm also suprised the doctor hasn't reported him to the authorities.
Martin
> My husband has epilepsy.. had 3 grand mal seizures in 1994 and was put > on Dilantin. He has not had any since and has maintained on his meds [quoted text clipped - 14 lines] > Thanks, > Cher Cher - 02 Jul 2004 12:58 GMT Why would the doctor report him to the authorities and why shouldn't he be on the road? I'm confused.
Cher
> I'm suprised no-one has mentioned that HE SHOULDN'T BE ON THE ROAD!! > I'm also suprised the doctor hasn't reported him to the authorities. [quoted text clipped - 19 lines] > > Thanks, > > Cher Daz_n_Pat - 05 Jul 2004 18:04 GMT Ask the wife and four young kids of the man I killed a few years ago because I was foolish enough to drive even though I have epilepsy. Darryl.
> Why would the doctor report him to the authorities and why shouldn't > he be on the road? I'm confused. [quoted text clipped - 24 lines] > > > Thanks, > > > Cher Cher - 06 Jul 2004 00:04 GMT Sorry about your experience, but no need to be so short. My husband is not foolish enough to drive! He did not drive to work for 3 days while he felt this way. He got his blood checked and it turned out his level was low. He upped his meds. Where we live you can drive with epilepsy if you get a waiver, check your blood monthly, and have not had a seizure for a year. Simple partials do not count. My husband is not stupid enough to drive when he is feeling badly and I do not appreciate your tone. This board is supposed to be for support!
> Ask the wife and four young kids of the man I killed a few years ago because > I was foolish enough to drive even though I have epilepsy. [quoted text clipped - 28 lines] > > > > Thanks, > > > > Cher Bob - 06 Jul 2004 01:10 GMT > Sorry about your experience, but no need to be so short. He wasn't being "short", or at least I didn't take it that way. That was simply his way of conveying the pain that his incident causes him to this day.
> My husband > is not foolish enough to drive! He did not drive to work for 3 days > while he felt this way. Your question to which he was responding made all that in doubt.
> He got his blood checked and it turned out his > level was low. He upped his meds. Where we live you can drive with > epilepsy if you get a waiver, check your blood monthly, and have not > had a seizure for a year. Simple partials do not count. My husband is > not stupid enough to drive when he is feeling badly and I do not > appreciate your tone. This board is supposed to be for support! and that's a 2-way street. The people who respond to your posts may easily be in a more serious condition than your husband. Is this how you reward their support efforts?
Think about it.
Bob
> > Ask the wife and four young kids of the man I killed a few years ago because > > I was foolish enough to drive even though I have epilepsy. [quoted text clipped - 28 lines] > > > > > Thanks, > > > > > Cher gaross - 06 Jul 2004 01:24 GMT We had a long thread last year that developed over several people (in North America?) who had been diagnosed or were **Afraid they'd be diagnosed, and were continuing to drive even when they knew they weren't controlled. Some of them had also followed some larger accidents that got National TV Coverage since one of the drivers had a Known Medical Condition (Heart Condition?) and had been Advised (though not Ordered) to not Drive....
With respect to your post at Bottom, you didn't add more recent information (at top) in the First Post. There was no way they could tell if he had been seizure free for a year or wasn't -- especially when you opened with 'what's wrong with driving when you're not controlled? ' on earlier post.
And those 'weird feelings' you described at Bottom, when he forgot some doses of pills are called Auras or Simple Partial Seizures. In some of us when we're not controlled, that Aura gives us from 10 to 120 seconds warning if there's a risk of it Generalizing and becoming a stronger seizure. At Highway Speeds, that's not a whole lot of time to stop a large truck. Although they might have seemed 'brusque' to you, they weren't given all the information.
I'm glad he's able to tell when he's not feeling well enough to drive or at potential risk. I think I'm finally there now too, although it took almost 10 years. On Motor Accidents, depending on Country or State regulations, in some jurisdictions Liability Insurance may be void if an Insurer finds that a medical condition hadn't been reported by an Insured (that was on another thread back then where a poster had decided it was easier to *Not tell the Insurer, than to get any Medical forms filled out.). There was also a long discussion about whether it might reflect on 'the rest of us' if someone had a Large accident, while they were still not fully controlled. G./
> Sorry about your experience, but no need to be so short. My husband > is not foolish enough to drive! He did not drive to work for 3 days [quoted text clipped - 34 lines] > > > > > Thanks, > > > > > Cher Cher - 06 Jul 2004 11:40 GMT I'm sorry for flying off the cuff and responding like that. It came across differently to me. I had no idea about the past posts and issues.
My husband has not had a grand mal since 1994 and when he did he lost his license for a year. I drove him. He is normally very careful but the few things that happened recently led us to late nights out of the house and him not taking his meds. We took your advice and he now carries some with us whenever we go out, just in case we end up getting hung up somewhere.
The days he experienced aura, he called for me to come and drive him.
These incidents have led me to become more afraid of what the winter will be like. Since reading my posts here, he has agreed to go to the dr. and get a note. He drives for the city in the winter plowing and does 16-hour overnight shifts. With the strobe lights and lack of normal sleep he realizes he puts himself at risk. Thankfully, nothing has happened to this point, but he realizes now, and will not even risk anything happeneing.
Julie - 07 Jul 2004 04:32 GMT Cher, glad to hear your husband has listened to wise advice. Like your husband, when I don't feel well I ask my family and friends to drive - no need to take chances. And I haven't had a seizure for 9 years, but I realize that I could still have a seizure. Also glad to hear he will visit the doctor.
Take care, Julie
> I'm sorry for flying off the cuff and responding like that. It came > across differently to me. I had no idea about the past posts and [quoted text clipped - 16 lines] > has happened to this point, but he realizes now, and will not even > risk anything happeneing.
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