I am scared

RE: I am scared

Submitted by Zoofemme on Wed, 2005-01-12 - 03:29

Have you read the info on the site yet? Lot's of good stuff there. The neurologist will be able to expalin things more thoroughly for you...a lot of things depend on what type of seizures your husband has. The way you have described him as feelign after the seizure is pretty typical to the way I feel after having one...nauseous, sore, tired, probably a bit dazed and confused as well I should think.Epilepsy is not just a childhood occurence. I have adult onset epilepsy...my first seizure occured when I was 34 yrs old. My doctors told me that it was most likely triggered by a severe virus that I had but would not discount several instances of head trauma I suffered when I was younger (the seizures started right after the virus). I have Tonic/Clonic or "grand mal" type seizures and take 1500 mg of trileptal a day. I am not saying this to scare you but for many, seizure control is a process that can take some time to accomplish. There are some who never fully gain it. From what you have described though, your husband had good results with the medication they prescribed him...that is great thing! I personally have had a difficult time and after 5 years of various meds have reached the near 2 month mark with no seizures (WOOHOO!) Please, DO NOT take that to mean your husband will have the same problem.I realize that szr meds can be very expensive but it is VERY, VERY important that your husband not start taking them and then stop. He will not only have a problem with szr recurrence but many of the meds present their own problems when stopped cold turkey. Discontinuing a med should only be done under the supervision of a doctor. If your med insurance doesn't have the med on it's formulary you can call them and ask them to add it or give their permission fro the pharmacist to bill them for it. There are also various agencies you can apply to in order to get financial assistance to help you get the meds you need. Some of the drug companies use to help out with this too but I'm not positive they still do. There use to be information on the site about it but they have changed things up a lot and I'm still trying to figure my way around. Perhaps you could do a search?The best thing you can do right now is educate yourself as much as possible regarding the basics on how to handle your husband and his szrs when he has one until you can see your neurologist and get more specific information regarding the type of szrs he is having. I will say this...whatever you do, DON'T try to stick anything in his mouth (he cannot swallow his tongue, that is a wives tale) and DON'T hold him down. I still have nightmares from having all of these things done to me by my FAMILY when they all panicked the first time I has a szr in front of them and my husband wasn't around. I think it is the worse i have ever felt after a szr *shudder*.Epilepsy is not the end. You will have to make some compromises to accomodate it (one thing we do is keep the floor plan of our house as open as possible to reduce the risk of my falling onto something) but nothing that is truly out of your reach. Again, I can't stress enough how important educating yourselves is.The only person who could tell you if it is hereditary in your family would be your dr. I should expect it would depend on the type of szrs your husband has and whether or not anyone else in his family has it.Don't be surprised if they run a bunch of tests and find "nothing". A lot of people with epilepsy never have it show up on any tests (I have one tiny bright spot that shows up on my MRI...my neuro says it is not "conclusive" though). That does not mean that they don't have epilepsy and it doesn't mean that treatment should be foregone. It is just one of the flukes of the disorder.I hope that helps some. I know everyone is afraid...it is a pretty scary thing, but probably the best thing you could do for your husband right now is to try not to over-worry and hover over him like something is going to happen any minute. Try to prepare yourself to be pushed away to an extent...a common first reaction of the individual having the seizures is fear, embarrassment and denial...not to mention anger. Try not to take it as being DIRECTED at you although you may bear a great deal of the brunt of it since you are the closest person to him. I know that probably doesn't sound very comforting but it is probably the best advice i can offer.You will here from more folks...just read all you can.Regards,Zoo

RE: I am scared

Submitted by gsness on Wed, 2005-01-12 - 08:55

Good Morning Shaneswife!My epilepsy started at the very young age of 42 (ha!). Now at the age of 50 we still haven‘t fully controlled the seizures; but at least they are more manageable.The previous writer gave you excellent advice about the meds, etc. Your husband really needs them. I have heard about some programs sponsored by major drug companies that assist people with either low incomes or without insurance in getting AEDs. Please contact your local (or nearest) Epilepsy Society or doctor to try to get information about these programs.As far as trips to the hospital…I once took my wife with me to visit my neurologist. One of the questions we specifically asked was: “Should she call an ambulance if I have a seizure, or try to take me to the hospital?” I'm not really easy to move when I am having a seizure… The fact is, if I went to the hospital every time I had a seizure my insurance company would go broke. Not that I would have a lot of sympathy for them; but I really do need my insurance.My neurologist (who is well known and actually is considered one of the best in the State of California), said that if the seizure didn't last much more than 5 minutes not counting the postictal confusion, and if I wasn't seriously injured, I should just rest up and recover in my own manner. Otherwise I'd be in the hospital about every week, and there wouldn't be much they could do for me anyway.I know that sounds a little hard to deal with; but as you learn more about the nature of Epilepsy be certain to study up on seizure safety and safeguarding people with seizures. It was really hard on my wonderful wife at first; but after a while she actually got used to it. She sees when the seizures come on, takes off my glasses, loosens my tie, helps me lie down (if I will do so), moves or covers sharp or hard furniture nearby, and then strokes my hand and talks softly to me until it passes, when she helps me to bed to rest up. (I don't recall her talking to me – but I feel confident that somehow I must sense that she is there taking care of me).Brightest blessings to both you and your husband!gsness

RE: I am scared

Submitted by jennamay on Wed, 2005-01-12 - 12:10

You may find the following useful in obtaining prescrition drug assistance:

http://www.epilepsy.com/epilepsy/drugassist_links.html

Best Wishes,

Epilepsy.com Staff