Quick bio: hubby is 40 y/o and had a tonic-clonic seizure 2 months ago. He had a few episodes (one side of the body numbing, vision blurriness, unexplainable feelings) when he was in high school but couldn't explain them. Never saw a doc, sleeping it off seemed to work. Then in his 20s & 30s had severe migraines. We had a few great years then BAM, out of nowhere, he had a TC lasting 5 mins. He stayed in the hospital for 2 days, had a bunch of tests. MRI was clear. His EEG shows "intermittent inactivity in his left temporal lobe". Doc diagnosed him with seizure disorder.
The medication has been hard to adjust to. He started w/ Zonegran which made him extremely fatigued, depressed, nauseas, no sex drive, zombie-like. His neuro switched him to Trileptal, which gave him his first migraine in years. He stayed on the Zonegran because he was comfortably numb. At his last appt the Doc switched him to Lamictal, which so far looks like it may be the one. He is 2 wks into a 4 wk transition from Zonegran to Lamictal. He does have some nausea, low appetite & jitteriness but his personality is 90% better.
The hardest thing for us had been the complete lifestyle change. He was an active, busy, productive person. He worked for himself as a contractor, basically anything that requires using ladders and power tools. Was very well thought of by all customers. He is a volunteer fireman, trusted by the crew. He's the funny guy that the kids gravitate to.
His license has been taken for 6 months, understandably. He's been advised to change his career, which he's been doing for 22 years. He'll probably never be permitted to drive a firetruck again and I'm not sure about running into a burning building. I've noticed (not sure if he did) a woman at Church wouldn't let him hold her newborn baby, he absolutely loves babies. Can't say I blame her.
He has no income, money is tight. I'm working so much I'm losing control on household/child responsibilities and still can't financially support the family. He tries to keep up. While I'm at work I worry constantly if he's having a seizure alone. Is he on the rocks in the driveway? Was he too close to the pond? Was he near the steps? If my daughter is home I worry about how she'll handle it.
He's afraid to use power tools, something he could do before w/ his eyes closed. He's not sure what to do w/ his life and the medication makes it very hard for him to focus long enough to think about it. He's stuck home a lot and is depressed.
Gees, if you're still reading, I apologize. I don't mean to be all "poor us". But our friends don't understand so when the say "how are you?" we say "ok". I think they just want us to move on already. This is the first time I've put it all out there.
Anyone relate? How did you work through it? Do we give this new med a chance? Should he see a counseler? The thought of him having another seizure cripples us. I need some hope
I think it could help your overall situation if he were able to find another profession. That way he would be busy and it would relieve your financial situation. Can he do something related to what he already knows? Can he supervise or maybe teach? Maybe he could start his own little business and hire others to handle the tools? I know you said he feels fatiqued....but if he was busy he might not feel quite so fatiqued. I often feel more fatiqued if I am not busy doing something. And it would not have to be full time...it could be part time. It must be difficult for you to work and also think about what is happening with him at home. I hope that things go well so you can relax more.
Have you checked into social security disability? Does he have Long term disability from work in the meantime (that just takes an MD to verify he can't work...SSD takes a while, but seizures are definitely on the 'disability' list- I"m on SSD for seizures). Since he can't perform his normal job function, it sounds to me like at least the LTD (which in some cases goes on to age 62) would be available if he has it with his job...just important to be on medical leave, and not totally resign to keep that an option.
I hated going on disability, but being homeless was a worse thought. I hope to get better enough to go back to work- other health issues have been a problem, and the newer meds don't help me much- I do better on the old stuff.
Side effects from meds are also important with SSD- zombies can't work ! And changing/adjusting meds can be hazardous with a job involving ladders and power tools..... you might call a Social Security Lawyer, and look into whatever insurance he has- short term disability (first 3 months) and long term disability (after 90 days, and continues for varying lengths of time- but often until regular social security kicks in). At least you'd have some sort of income coming in- it won't pay for country club fees, but you can at least live indoors. It's hard to consider, but other options often run out.
Thank you both for your suggestions. I've had a crash course in the past 2 months for sure.
He was self employed, therefore he doesn't have short term diability through work. Ironically, we purchased a disability policy however that only covers accidents. We figured if he needed disability it would be because he fell off a roof or cut off a few fingers. SSI isn't an option because so far, it's not long term. Realistically, he should be able to work once his medication is regulated. From what I understand as long as he can punch buttons on a register it's a battle to get anything. We're hoping this is a temporary situation and years from now we'll be in a place we never would've pursued if this hadn't happened. And it's not pride stopping me, I've really learned the meaning of being humble. It's just a lot of fight and energy I'd rather put into his well being. If he has another seizure then we'll probably pursue SSI.
It's just the interum is so hard. Switching careers sounds simple but when he's done this for so long it's actually quite difficult. I mean, where do you direct your energy? Should he go to school? Does he take any old job he can get? Then there's the transportation issue (we live in a rural area). It just seems so overwhelming. We've discussed him hiring a few guys but neither one of us trust that he won't get a false sense that it won't happen. He'll be up on that roof in no time. He can't stand to watch other people work.
I really am hopeful that once he feels decent he'll be able to think a little more clearly. And of course when he gets his license and a little more freedom things will work out.
It's just that constant thought of "will it happen again and when?" What will he be doing when it does. The more weeks that past the more at ease I become, then I feel guilt over not worrying. Ugh.
Again, I'm so sorry about the whining. I know so many people have it so much worse then us. I am trying to feel positive and thankful. But every now and then I need to throw myself a pity party, even if noone comes.
Hugs to you both. You right your husband is suffer alot of grief. Your letter brought tears to my eyes.I am sorry for both of your losses: for the losses are great.I too am trying to rebuild my life with many limitations, of course you worry and he is depressed. Just let him know often of his value for we suffer from the thought that we are useless and just a burden. But a little praise can take us a long way. You can start the sentance by saying. "Do you know why I love you....often we get clouded by our limitations and need help to remember what we can do or to be reminded of our value to others.But he needs to sence your sicerity of your statment. Cher Bear
Epilepsy is long term. Check into SSD, not as much SSI (although with no long term disability, you're more likely to qualify- depending on household income, and total number in the house...... Social Security Disability - SSD- takes time to be processed, but it will protect some income. And they back pay to the date they determine disability occurred, but not before applying. Even if you have to appeal, the original application date could mean tens of thousands of dollars. And, you have to have worked a certain number of quarters within a certain time frame to qualify (which he more than likely has no worries about). Even if he goes back to work ( but epilepsy, ladders, and power tools are not a good combo), it might be after having to go through some occupational rehab, and finding another type of work- SSD can help with that, while sending monthly checks. Keep all the records you can, and talk to the neuro about it.
I hated having to go on disability (didn't qualify for SSI- supplemental security income- because I had long term disability insurance from work), but without it, I'd be on the streets. My LTD pays the difference between what SSD pays, and what LTD originally paid,so I still get the full LTD amount, just SSD pays part....who's on first? !!)
I can relate to you and your husband. I too am in the construction field and have epilepsy. I just got put on my second "medical leave" and i have a feeling I will not be going back to work for this company(a public utility). I feel like they are trying to push me out by documenting all the lapses in memory or unsafe working practices, and then using them to put me on medical leave. Money is also tight since disability is so much less than i make(by the way does your hubby qualify for disability through the state?)
Anyhoo, it is tough to adapt to, but that is something that you have to do in order to survive. You must ADAPT. That is something that has taken too long for me to understand. Hope it gets better for you.O, i just read the other posts, dont mind the disability thing...
Last edited by jaybob2006; 01-11-2008 at 08:24 PM.