Nice to find you all...

[mouse]

Hi everyone, I am the caregiver for my husband who has developed a seizure disorder. It started with ventricular tachycardyma (technically not heart attacks, but still required the defibrillator), twice. Then within a few hours, he was in status epilepticus. They had to sedate him for two weeks until they could find the right combination of anti-convulsants. Since then, we've had long slow recovery full of setbacks. Still no diagnosis for the underlying cause, they call it "undiagnosed white matter disease". He has minor brain damage from lack of oxygen during the "heart attacks", and other damage from the brain lesions, seizures, etc.

He is currently on Dilantin, Keppra, Epival, Clobozam, and Primidone. As well as other stuff for prostate and depression. I can't tell what symptoms are side effects, which drugs are or are not helping. There is just too much going on. Keeping track of his history and day-to-day health is exhausting. Added to us grieving for our former lives, and me trying to help him cope with life in the hospital and accepting his physical limitations.

It's been a year and he keeps getting infections and having to return to the hospital. We are coming to the point where the hospital staff is telling me he needs to be in a home. The rough stuff is still to come.

I'll stop here, this seems to be a pretty long introductory post!

[xenome]

Welcome to the forums, mouse.

Im sorry that you and your husband are going through all this crap. That totally sucks.

Dont worry about the length of your posts, if you need to vent, we will all be here to listen and offer advice.

You have managed to find a good group of people.

My name is Jon. It is a pleasure to meet you, though I wish the circumstances were better.

[Birdbomb]

Welcome mouse

My husband has very precarious health issues too. It's exhausting having to deal with another person's medical. I do understand where you are coming from.

You have found a very comfortable forum with MANY supportive folks. We even have a place to vent called Padded Room!

Make your self at home...I'll put on a fresh pot of coffee!

[RobinN]

Hi Mouse
So sorry to hear about your situation. I too am a caregiver, but my daughter is just emerging from her cocoon. I am trying alternatives, as the side effects were too much for us to bear. Record keeping has been a difficult part of all of this, but I continue to say that the medical calendar that I keep by my side at all times is the best form of record keeping that I have found. I also have separate files for each doctor, and tests, but the calendar tells me the most.

Good luck, I am glad that you joined us here.

[skillefer]

Hi Mouse! I'm so sorry to hear about your hubby! The forum is a really supportive place. Feel free to ask questions or just vent. Check out the library...there's some really good articles there. I'm glad you joined us...

[speber]

Very nice to meet you!

[Bernard]

Hi mouse, welcome to the forum.

Sorry to hear about your DH's situation. I hope we can help you in some small way. Make yourself at home here.

[brain]

Mouse!


Welcome to CWE! And sorry that hubby is having
to undergo all of those health issues! Will keep him
in my thoughts! And here's some hugs for you!

[BuckeyeFan]

Welcome to CWE.

Make yourself at home and let this be the place where you can take a break. Remember to take care of yourself as well.

Please feel free to VENT in the Padded Room. I do once in awhile and it feels good afterward. No one here will judge or criticize you for that. It is a safe place to vent.

Hugs from all of us here.

[mooselips]

Hi Mouse,
Nice to meet you, sorry to hear of your hubby's health issues.



Hugs to you,