Tell me about having a seizure disorder

[HOGFAN]

I had my first grand mal about 3 years after a hemorrhagic stroke. 18 months later had another one. Put on Keppra, neuro said he wouldnt contact DMV if I promised to not drive for 6 months. Said its best to keep the government out of it. They will dog you for 3 years minimum. I got rides from coworkers and family for 6 months. Mine are mostly under control. Only have small "tonic" if at all. I have at least a ten minute warning if something is about to happen, so I can get off the road(hasnt happened yet). My neuro told me to not use the word "epilepsy" unless I want a great parking space.

 

[starann]

Sorry you are dealing wit this right now.

I have had epilepsy since I was 16 (I am 29 now). I had jsut gotten my DL and a new car and WHAM! There went my DL!!! In PA you have to be seizure free for 6 month, so 3 months into my start of meds, I had another seizure and the 6 months started all over again.

My Dr notified the state, but it was right around the time the state had a fire and lost some documents, so they never actually got the letter, however I didn't drive. If they do actually send for his DL, you will want to take him to the DMV so he can get a photo ID.

You will also need to contact the insurance company for your car insuraunce. They need to know becuase if he ever has a seizure in the future while driving and they find out he had a known seizure history they could deny the claim, citing fraud.

I have 2 types of seizures......partial complex which I have an aura (warning signs, not everyone has them) and then 'pass out' Actually, I'm not passing out, but that's what it looks like. When I wake up I am post--ictal which is a lot like what you said your hubby was...disoriented, emotional, tearful and no or little memory of what happened. The other type of sz I have is absence seizures....it looks like I am staring off into space. I am awake the entire time, but you could talk to me until the cows some home and nada!

That all being said, I have been seeing a neurologist since I was diagnosed and I have been seizure free for 7 years!!!!! I do have to watch when I get sick such as a nausea and vommiting bug as I am not able to keep my meds down and run the risk of seizure. Stress is also not good (don't get me wrong, I have bills and such, but I have to make sure I get plently of sleep and see a dr when sick....a stressed body leads to an increased risk).

There are some meds, as an epileptic I can NEVER take.....antihistamines (like those found in common cold meds and cough meds) are a BIG no no. When I get sick, it's a box of tissues, when bad enough antibiotics and prescription cough med (Phenergan with codeine). Wellbutrin as an antidepressant can also increase the risk (my neurologist will not order it for any of her patients) and Demerol is a pain med that should not be used my epileptics.

Hopefully the neurologist will order a sleep deprived EEG to see if he has any triggers (for me, Strobe lights can send me into a sz) and a MRI. A CT Scan is good, but a MRI is better.

I do STRONGLY suggest getting him into a neuro dr who is up to date on the latest treatments. I'm not knocking family Drs, they know a little about a lot, but a neuro dr knows a lot about 1 thing!!! You wouldn't have a plumber work on the electrical work of your house, you's hire an electrician....your body is the same way! The wait time to get into one is about 3-4 months!!!!!! Sometimes they can 'squeeze' in a new patient if the family dr feels they should be seen ASAP.

Good Luck!

 

[lovepurple]

Several years ago my mom started having seizures. It was very scary. It took a long time to find out what was causing them and it was very frustrating. They finally found out it was a problem with her liver. She was put on medication and has been fine ever since.

 

[minkydog]

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.

kilee, I am a full believer that when one door closes another door opens. It *will* be a huge adjustment for all of you, but perhaps it will result in something very good.

I know when my husband was disabled we thought it was the absolute end of the world. How were we going to live? We were terrified. But you know, it all worked out eventually. Its been 2 years since he stopped working and now we're in a good routine so his disability has less of an impact on us than it did at first. You adjust and life goes on.

I'm going to second the motion for a neurologist. You want a specialist dealing with this. Your family doctor might be good, but a neurologist is the expert and you want him (or her.)

 

[Kennywife]

First of all, I wanted to give you a and tell you that I know what you're going through. I have seizures and I've watched others around me who wish they could do something and they can't. I wanted you to know you're not alone.

I don't have Grand Mal seizures often, usually Petit Mal (the staring kind). He will lose his license for a time. How long, it depends on your sate and how he can remain seizure-free. I haven't driven since I was 18 and I'm now 32. Everytime I get up where I think I can drive, I have an attack. I work at home because of it.

I would talk to a neurologist on what to expect and go from there. That's all I can say. The best thing to do is to be there and support him on whatever happens. If you need to chat, you can PM me.

Anna

 

[kellyg403]

I kinda skimmed through the posts and wanted to to also mention something. You said your dh has been taking meds for depression for some time. My aunt, who had been taking several different meds for depression started having seizures that were evidently a side affect of one of the new drugs she had been taking. Unfortunatly, she now has to take a different med but the original seizure issue is still there and she must take meds for them.

Make sure that they are looking closely at his meds as well. I am quite sure with a family history of epilepsy and his meds they will rule everything out to get to the bottom of it.

I will agree with the others, the dl issue for my aunt was a BIG thing for her. But, if he has something else to do...like looking into the new career..he may not feel as disgruntled. It was difficult for aunt because she was widowed, in her 50's and felt like she was a 'burden' on her grown children. Obviously she wasn't but you know, it has to be a shock.

Kelly

 

[CarolJ]

A year ago my husband had a suspected seizure while driving. He managed to pull over and tap into a utility pole. No damage to the vehicle, but he somehow broke his back. Thankfully he has fully recovered and has had no further episodes. He also goes to Dent Neurology as another person has mentioned.

NY state suspended his license 2 months after the incident. However, he would not drive even if he did not break his back. That's because our insurance company stated that if a person has a seizure and drives without a doctor's authorization they will not provide any coverage. So it didn't really matter whether his license was suspended or not- he would be driving without any coverage. He's self employed as a heating technician so we lost his income for 8 months which was a hardship, but thankfully he's fully healed so that's what we focus on.

 

[C.Ann]

I would have him see a neurologist asap.

I kinda skimmed through the posts and wanted to to also mention something. You said your dh has been taking meds for depression for some time. My aunt, who had been taking several different meds for depression started having seizures that were evidently a side affect of one of the new drugs she had been taking. Kelly

First of all :

My first thought was a side effect of the meds.. Also, has he ever had any episodes where you noticed that he was kind of mumbling - not really talking about what was going on at that very moment?

We have someone in the family that began seizures at the age of 12 - was on Dilantin for years until it was causing too much damage to said persons liver and bones - as well as the occasional breakthrough seizure.. Switched to Tegretol twice a day - no seizures or physical side effects from it for 13 years now..

Have them take a close look at the antidepressants.. Did he start new ones recently? Stop any recently? Change doses?

Hang in there.. It may turn out to be nothing more than a side effect from meds..