fiancé’s update

[mamasita]

So after 3 months my fiancé’s epilepsy specialist allowed him to fly home for two days and one night. It was both a happy and a sad occasion. Happy because I finally got to see him after 3 months (Finances did not allow me to be with him) sad because of what I can see he is going through.
His seizures are petit mal and coming from the left temporal lobe area. They are not sure from where exactly, but will be doing more tests. Why it started now… yeah not sure about that either. But they have put him on Keppra and he has not had a seizure for a week 1/12, but poor guy is suffering with the bad, and I mean BAD headaches. It was so hard to see the pain he was in. Anything that would help rid the Keppra headaches?
The other thing I had a hard time with was the grappling for words. He would be telling me about things and couldn’t find the words. Trust me I had to sit on my hands and bite my lip not to say the word but to let him figure it out for himself. Is that what I should be doing?
His specialist has mentioned that he was a prime candidate for surgery, but wants to do three more tests first: Sleep deprived EEG, sleep EEG and another one (fiancé couldn’t remember). Does this sound like they are getting ready for surgery?
I hated to leave him at the airport.. Seeing and hearing what he is going through, and has gone through gives me more of a sense of awe in regards to you all. You all are heroes in my book! :clap:
K

 

[Nakamova]

It's odd that he was prescribed Keppra -- it's not usually considered effective against absence seizures (petit mals). I'm glad it's helping, though not about the headaches. B6 usually helps with the psychological effects of Keppra, -- maybe it will help with the headaches too. I assume he's tried all the over-the-counter painkillers?

 

[mamasita]

Hey Nak,
So far Keppra is the only thing that has worked, everything else the specialist has tried has failed. He is in good hands, is on epileptic floor in Victoria B.C hospital and has been there for 3 months. He is also very, ah shall we say stubborn, does not like taking pain meds. The doctors are doing ever thing they can. It is also good that he has his son and daughter-in-law near. The daughter-in-law has grand-mal seizures and has answered a lot of his questions when he remembers to ask..lol

 

[momof3boys]

Ive been on Keppra for 15 years now, and I first was put on Keppra. That gave me terriable headaches. It wasnt til almost 11 years after that I was told to try Keppra XR. My neurologist at the time said the regular Keppra is like a roller coaster affect in your body. I was getting headaches half way through the day. About the time the medication would start to get lower in my body, and stay that way til I took my next dose. When I was put on the Keppra XR, it slowly is released into your body, not having that roller coaster affect. It took care of the headaches and now I dont suffer from those nasty things no more! Maybe bring that up to the dr and see what they say about giving the Keppra XR a try?

 

[mamasita]

thanks Kristin
I will let him know. Yeah he said on a scale of 1 to 10 the headaches are from 10 to 15...
Will find out more when the next 3 tests are done.
Hope and wait...hurry up and wait.
Karen

 

[D-mo]

Sorry to hear about you and yours situation. Could you explain to us why he has been on the E floor for 3 month .. if you could, as this seems to be along time. Would this be a result of an injury?

seaching for word and phases .. and even names are always an issue. Yes help out .. as it will make him more confortable that you are there, helping with the situation .. but dont do it after he has suggested to you that stop ..

d-mo

 

[qtowngirl]

yeah i'm curious about that too... three months is an awfully long time.
i'm wondering if the test he couldn't remember was the WADA? if so, yes that is when they're looking at brain surgery.

 

[masterjen]

I have a different take on the searching for words and phrases part of your question (sorry d-mo). If I am with someone I am close to and trying to tell something to a third person who doesn't really know I am having an issue with this, then I like the first person to "conversation share" with me.
On the other hand, if the conversation is just between me and the person who senses I'm struggling, I prefer that they let me work with it (use a different word, or whatever). Makes me feel like I am thinking for myself and using strategies to help solve the issue on my own.
So, I guess it comes down to everybody is different and will have different preferences

 

[mamasita]

Thank you all for your answers. It is greatly appreciated as I am trying to figure things out as well.
As for being on an E floor for 3 months...oops my bad guess I should have elaborated. He has been in 3 Separate hospitals. He was visiting his son and daughter-in-law (the grand mal sufferer) in Kelowna and I suspect that they noticed something was off, so time was spent in Kelowna B.C. hospital. Tests, tests and more tests. They couldn’t figure it out so off to Vernon B.C hospital and, yup you got it, tests, tests and more tests. They thought he might have E but were not sure since the EEG came back negative, so then it was off to where he is now, Victoria B.C. E floor.
I asked him if they will be doing the wada test, and I described it. He said that he already had his head frozen and it felt very weird but he didn’t think they went through the groin, he couldn’t remember. All he knows is that he has to go to a sleep clinic for one of the tests (in June), but he couldn’t remember for what, and he is to have a sleep deprived EEG, and a longer EEG. The hardest thing for me was watching him try to remember what tests have been done and what ones he is going to have.
As for not filling in the words for him, I just had a feeling that it would frustrate him more if I said the words, than let him figure it out. He was sad enough about it all and told me that I didn't have to stay with him (not being married yet)
karen