Tell me about having a seizure disorder

[kilee]

DH had a seizure this morning and I've never been so scared. I was getting ready for work and dh was headed to go get a cup of coffee. I heard him walking towards the kitchen. Then I heard I really loud thud. I went to go see what it was and found dh on the floor twitching, w/ his eyes rolled in the back of his head, he was literally foaming at the mouth, and he wouldn't respond to me. This went on for about a minute and I called 911, the entire episode lasted about 3-3.5 minutes.


Over the last 18 months he's had 4-5 "odd episodes". Each would only last about 20-45 seconds where his eyes would roll back he'd twitch and be kind of out of it. I remember telling him on more than 1 occasion after these occured that it looked like he had a mini-seizure. I kept bugging him to see his doctor about it, but time would pass w/o another "episode" and he'd forget to make the appointment.

Anyhow, today was scary because it was never like this. This was much worse, last a lot longer too.

Anyhow they did bloodwork, a CT scan, and EKG at the hospital and said they've ruled out anything "serious". (Like a brain tumor). We now have to follow up w/ his physician (which the appt. is now made). They also put him on Dilantin.

He is 35 yrs old and in relatively good health. He does have 2 first cousins that are both epileptic. I talked to his mom today and she said he had several seizures as a toddler, but then never again so she assumed "he outgrew it".

He didn't remember it happening this morning and was really disoriented when he came out of it. However after 10 minutes or so he pretty much just snapped back to normal.

He drives for a living, so that changes a lot right there. I am online trying to find as much info as possible about adult onset of seizures. Anyone have any personal info?

 

[kirbydog48]

I would have him see a neurologist asap.

 

[Tinker'n'Fun]

for you. So sorry, it really sounds scary. My only experience is with my grandmother who used to get GrandMal seizures all the time. I hate to be the bearer of bad news, but they took her liscense. I am glad to hear that DH is doing better and I hope they find out the cause soon.

 

[Snoopymom]

Ds has Epilepsy, but not tonic clonics, or TCs as they are called now, but he should definitely see a nuerologist right away.

The epilepsyfoundation.org has great boards and this thread here may help.

http://www.disboards.com/showthread.php?t=2321754&highlight=epilepsy+awareness+month

 

[kilee]

Thank you for the link. We are figuring they will take his license. Which he doesn't want to be a danger to himself or others.

 

[Nette]

Yep, they'll take his license for at least 6 months. I can't remember how long they took mine, but I was still a teen, so I'm sure it seemed like forever.

Best wishes to you both!

 

[minkydog]

Oh, how awful! My son has gran mal seizures, too, and I never get used to them.

Here in GA even one seizure results in the loss of driving privileges for 12 months. I'm sure this will have a huge impact on your family. Driving=independence. Most of us would have a huge problem with losing our license.

Be aware that newly diagnosed chronic illness can often lead to depression. Even more so if you've ever been depressed in the past. The whole family has to adjust to the new order and it's not easy. We have three persons in our family with disabilities of varying degrees. There have been a few times when we've needed to seek out a therapist to help us deal with the impact of our chronic illnesses.

I hope you get the seizures straightened out quickly and no complications with the meds. Sometimes they have to change them around to get the best coverage and that can be very frustrating. There are a LOT of seizure meds out there, so if one doesn't help or has bad side effects, just know there are others available.

 

[NotUrsula]

Not what you want to hear, but in almost all states, anyone with a newly diagnosed seizure disorder will have their license suspended for a period of time until they can be medically certified seizure-free.

My state (MO) is one of the most strict: here anyone with a newly diagnosed seizure disorder automatically loses a drivers license for at least a period of six months, and I have been told by physicians that the Dept. of Revenue pressures them not to certify for 12 months, so most of them won't. There is no appeal process here if your application is denied.

This chart shows a list of the various regulations for the states:
http://www.nrsponline.com/files/DrivingandEpilepsy.pdf

The DOT permantly prohibits anyone with a seizure diagnosis from working as an interstate truck driver.

I'm sorry -- this has be a very rough thing.

 

[kilee]

My husband is already on anti-depressants has been for quite a few years. Though I'll watch for them having to up his dosage.

That was one of the first thoughts when we were at the hospital was his driving and how that is going to impact us financially and him mentally.

I guess in some ways I'm glad ds just got his liscense at least he'll be able to help take dh to doctors appts and such.

On that chart it states 12 months though my sister who deals w/ this at her practice often (she's an RN) says it's only 6 months. She said to trust her she fills out the forms for the doctors all the time. He's already talking about switching his career (which has been going through his mind lately anyhow). Which is going to be a must. Worst part, he just switched jobs so we won't get disability. So we are going to be out an income again. Good news is, I can support us as long as we watch it a little. I've been doing it the last year, while he was looking.

My question is........all our vehicles are registered to him. This is going to effect all of that? Also, do I get a letter from the physician or does he handle it all himself through the DMV?

 

[mrsdon]

My oldest DS has a seizure disorder
He was diagnosed at age 5 and is ow 27
His were small staring spells
He has also had 2 brain tumors, 2 mini strokes, 1 blood vessel that bled
But back to the orginal question
it took a long time to get the medicine straight, but as long as they remember to take the medicine and dont have any seizures, he should be able to keep his liscense
Good luck

 

[daughtersrus]

First of all, I want to offer you a hug. I know how scary it must have been.

From what you wrote, it sounds like your DH has had a few seizures recently. Of course, I'm not a doctor.

I would be sure to tell the neurologist about the other spells that your DH has had in the past. Before my DD was diagnosed with epilepsy, I had no idea that seizures came is so many forms. I thought that they were only the fall down, shaking spells known as grand-mal. I had no idea that the staring spells we had been seeing for years were seizures.

A close family member had an episode very similar to what your DH had although it lasted much longer and she was hospitalized for several days. The doctor did not have the state revoke her license but he did tell her and her parents that she was not to drive for at least 6months. That was about a year ago. It took a few different medications before they found one that would keep the seizures away and not cause side effects. Once they did, she waited 6 months after the last spell before she returned to driving. I really don't know if there's a law in place that requires doctors to notify the state (my DD has a rare genetic disease and is disabled so that is something that we will never deal with with her).

I would take one day at a time and cross that bridge if/when you need to.

Hugs to all of you at this scary time!

 

[lovin diz]

I have had it since i was about 12 or 13. Around 25 or so, they stopped, so i got off of my meds; but about 3 years ago i gave blood, and now they are back. I drive; however, i have warnings that i know i am about to have them. So if i am sick, i dont drive.

to you. You seem so concerned. I know it scares dh and dd so bad.

I have went from just being "dazed" and out of it for a few seconds to now having full grand mal seizures.

Good luck!

 

[NotUrsula]

In my state physicians are required to notify the Dept. of Revenue (our DMV), and it doesn't even have to be a diagnosis; they are supposed to report it even if it is only suspected.

My DH had what turned out to be a vaso-vagal episode that left him kind of twitchy once when he had just come home from the hospital after a surgery. I had to call an ambulance to return him to the hospital. When I spoke to the physician in the ER about what had happened to him, I said "It kind of looked like a sort of seizure to me", and he grabbed my arm, pulled me into a corner and said, "Don't say that word when talking to any medical personnel. If anyone here hears you say it and enters it into a chart, we will have to notify the Dept. of Revenue, and he will automatically lose his license. We never want that word to be on record anywhere unless we know for SURE that that is what it was."

 

[Sheree Bobbins]

Sorry to hear this. Prayers and thoughts are with you and DH.

 

[davidsprincess]

First off . It is a scary thing to witness when a loved one has a seizure. For me it never gets easier when my husband has them but that could be because he doen't have them that often, but when he does.......

Get an appointment with a neurologist. The one that we have here is AWESOME. He likes to do yearly follow ups with David, but if we need to see him anytime in between it is okay. One thing that he told us was that only HE would make changes to my husbands seizure meds. We can go to our regular doctor to get the perscription filled out, but if any changes need to be made as to dosage or new seizure meds etc. then only HE could do it. This is what they are trained to do. Find a neurologist that youl like, are comfortable with and will take time to answer your questions. The first appointment we had with our neurologist he turned and looked at ME and asked how I was coping. I had never had a doctor take that kind of concern for me as a spouse before. Go to each appointment with your husband so that you can be just as informed as to what is going on and what medication he wants your husband to be on. Mine currently takes Dilantin and Topimax.

Know (even write down and keep in your purse) what your husband is on, what doesage and how often he needs to take it each day. This will help in the long run if you ever have to go to the hospital again and the doctors there need all the info. (can you tell I have had to do this before?)

Remeber to breathe. Your life will change now in the sense that you will have a part of you on alert for the next seizure, but continue on with living. A person can live a long, fulfilling life even with seizures.

Talk to your husband and see if he remebers anything from right before it happened. Weird smells, seeing lights etc... If he can remember it will be a trigger for next time so he will know what is about to happen. My husband doesn't remember anything leading up to his, but I see changes in him. Two - three DAYS before he has one his memory will get really bad. Example: we can be watching a football game and at commercial he will get a drink and when the game comes back on will forget that a touch down was scored just before commercial. Little things like that. It will be different for each person but the more YOU know, the better prepared you will be for the next time it happens. It still doesn't make it easier when it does but..... it is not a shock.


If you need to talk, just PM me.


You will get through this. Just breathe and again,

 

[daughtersrus]

I found this link on the epilepsy foundation website.

http://www.epilepsyfoundation.org/living/wellness/transportation/drivinglaws.cfm

Not all states require that doctors even report the episode let alone revoke the driver's license.

 

[kilee]

I just looked up again, it looks like some states have laws requiring doctors to notify and others don't.

Trust me he's not going to be driving.....I just was thinking of our car registrations and all that stuff. If he doesn't hold a license I have to re-do all of that at a nice little expense (gotta love NY). Anyhow it looks like our state does not have doctors required to report it from the chart, though others do.

I told him we need to focus on the silver lining which is #1-- they ruled out something like a tumor or a stroke. #2-- this might be the push he needs to change careers which he's wanted to do.

 

[Tinker'n'Fun]

If you are really near Buffalo, Dent Neurology is wonderful. Dr. Metchler is an absolutely wonderful Dr. and a wonderful person also. Google them. Once again, prayers from my family.

 

[clovergirl5]

My son was diagnosed with childhood absence epilepsy (CAE) last year. His "seizures" are staring spells. He is currently on 2 meds and doing great. Stare free completely! This type is supposed to be grown out of.

I would get dh to a neurologist to begin with. They know so much more about whats going on rather than a reg. family dr or whatever. It was scary when we began all the testing and stuff, but now with meds, he is his normal self. Good luck to you and know there are so many people who have epilepsy and live pretty normal lives.

 

[JoiseyMom]

My son was diagnosed with childhood absence epilepsy (CAE) last year. His "seizures" are staring spells. He is currently on 2 meds and doing great. Stare free completely! This type is supposed to be grown out of.

I would get dh to a neurologist to begin with. They know so much more about whats going on rather than a reg. family dr or whatever. It was scary when we began all the testing and stuff, but now with meds, he is his normal self. Good luck to you and know there are so many people who have epilepsy and live pretty normal lives.

My DD13 was diagnosed with this when she was 7..she is now 13 and has been med and seizure free for a few years. She doesn't even have to go back to the neurologist anymore!! So yes, they can out grow it!! What meds is your son taking? DD was on keppra and lamictal.