Introduction

[Navy Veteran]

Hi. As you have probably guessed I am new here.
I was medically retired from the Navy when I was diagnosed having epilepsy. I was an Air Traffic Controller and loved the job. Well, having seizures automatically downed me.
The first time I had one (that I can recall) was in 2000 when I woke up in a pool of blood and my tongue chewed to shreds. I just thought I had a bad dream and bit my tongue. I was stationed on NALF San Clemente Island, off the coast of CA. I would fly out on Monday and fly back home on Friday, and once a month spend the weekend on duty.
After this occurred I noticed that I was having these weird sensations of deja vu, which happened a lot. I never gave them any thought. I woke up about 3 more times on the island with my tongue chewed. Again, I thought it was a bad dream.
One weekend when I was home, I fell asleep on the couch with my wife. The next thing I knew, I was in the hospital. My wife really freaked out when I had a gran mal while I was sleeping; blood was coming out of my mouth and I was convulsing and, not to offend anyone, I was flopping around like a dead fish. Well, I had to tell my flight surgeon and I knew my career was over. I have a lot more, but this is just a quick introduction.
Thanks for letting me post. I have been dealing with this for over 14 years, and it has taken a big toll on my marriage. I just need someplace to vent with people who are going through the same thing I am.

 

[Dolores]

Navy Veteran, Welcome to CWE. Lots of good and caring people here who have had to deal with all sorts of issues as a result of epilepsy. They are the best as they willing provide their support and information. And sometimes what we all need is a place to vent and people to vent to who have an understanding of the problems one is facing.

{{{Hugs}}} Dolores

 

[Dline]

Welcome!! As a sort-of-newbie, I can say, you've come to the right place

 

[arnie]

Hello and welcome! As the others have said this is a good place to be. There will always be someone who will be able to relate to some aspect of what you are going through and can give some help, some understanding, and a place to vent. Just reading the various posts can also give you ideas of ways to cope with what you're going through. Epilepsy can be hard on a spouse. They tend to worry more about it than we do a lot of the time. I also imagine that you must be at least somewhat depressed and on edge not being able to do the job you loved. That won't help a marriage, either. What do you do for work now?
Keep in touch and let us know how things progress.

Onward and upward!

 

[Navy Veteran]

Thanks for the welcome.
Go figure, however. I had another gran mal last night. Right now I feel like I just ran a triathlon. It sucks, but I really have gotten used to them.
Regarding my marriage, it is a lot better now. I didn't realize it, but for about 6 years after I was discharged I was really depressed and took it out on my wife. I blamed her because she was the one who took me to the hospital sealing my fate. We are still working through it, but I don't think we will ever be the same.
I guess I really can't complain. I have this condition but I am taken care of. I am 100% rated with the VA and with all the stuff going on now with them, I have not had a problem being seen. The neurologists I see are some of the best in the world. No matter what you hear, the doctors who work at the VA are some of the best. My neurologists work at UCSD. I am typing this, but I feel a little uncomfortable. I know that the vast majority of people with this affliction do not have the medical support I do.
Also, have any of you ever under gone brain mapping? I have had 5 VEEG's over the last two years. Since I have been diagnosed, I have gone through all the alphabet soup scans out there; MRI, PET, MEG, CT, VEEG. They are now talking about brain mapping in order to localize where they are coming from. In a little way it freaks me out but I just want to get rid of these things, no matter the cost. My wife really hates that I joke about it; "Eh, their going to cut me open and find out that there is nothing in there". But I guess it is my way of dealing with it.

 

[arnie]

I'm glad you have good coverage and good docs who sound like they are doing everything they can for you. As for your marriage, I would strongly urge you to find a good marriage and family counselor to help you with that aspect of your life. It's really hard, if not impossible, to get past and through issues like that by yourselves. Your marriage will not be the same as before, but with good help and work by the two of you it can be better and stronger than it's ever been. Finding a good counselor can be a bit of a challenge, but the VA probably has some recommendations, I would think.

Cheers!

 

[valeriedl]

I had my very first seizure, which was a tonic clonic, when I was with the guy I was dating at the time. He took me to the hospital and they had to put me in a coma, which I was in for probably 3 weeks, because they couldn't stop my seizures. I was in the hospital for about 6 weeks in total before they felt it was ok for me to leave.

When I did leave the hospital I had to move back home with my parents. When I did this my boyfriend lived and worked his full time job about an hour away and it was very hard to get together. Neither of us had long distance on our phone so we didn't talk very much. I was also having seizures like crazy, mostly complex partials with a tonic clonic here and there. I don't know how long we stayed together after I was diagnosed with epilepsy, it wasn't long though, but he just didn't want to deal with everything that came along with me then so he broke up with me.

I met my current husband about a year later. He lived about 20 minutes away. He knew I couldn't drive, I was still having a ton of seizures and everything else. He always came to my house to see me or take me out. His car was so beat up that I'm surprised it made it a half mile down the road.

When I had my first seizure with him it scared him half to death and he took me to the ER. Everyone thought for sure he was going to leave me when he saw what the seizures were like. But he stuck around because he loved me and didn't care what I was like. I can't even begin to imagine how many seizures, testing, surgeries that he's been through with me, but he's stuck around for over 10 years now. I'm glad your wife has stuck around like my husband has.

If you're wife hadn't taken you to the ER when you had that first seizure then there's a good chance you wouldn't be here right now. Even after many of the other seizures you've had it could be that way also. I know it's been like this for me.

As arnie said it could be a good idea to see a counselor, that might help a lot. Look into it and try it at least. It wouldn't hurt to do that.

I like your joke by the way, I think I've heard that once or twice from a few people!

Nice to meet you.