husband is a mess...

[Lothlorien]

I believe Tegretol is another medication for partial seizures. I'm thinking that Trileptal is a sistered medication from Tegretol....basically a cleaner medication. Tegretol had more side effects.

I'm glad you got the doses cleared up. I was really blown away that he was on such a low dose. But still....Missy is 80 pounds, taking 900 per day. Your husband is more than three times her weight.....I would think he should be on a higher does. The neuro's always dose according to her weight and they increase it to the higher level so there is so growing room and she's protected.

Two seizures a day is two too many. I think that's what is making him so tired.

Did the neuro call you back, yet?

 

[busywend]

I was going to suggest having Thyroid checked, too. I hope you get some answers soon!

 

[gcvmom]

No word from neuro yet. I called and spoke with his secretary to clarify the dosing issue and she said he's going to be calling husband today, so that's good to know. His GP appointment is in 90 minutes. I'll be sure to ask about the thyroid issue when we go in.

He went to bed around 10:30 last night and got up around 8:30 this morning, so that's a little better. But he's napping right now, too.

I have a feeling the GP's going to defer to the neuro But perhaps we can convince him to run some blood work just to make sure nothing else is amiss. He last had labs done pre-op last January/February.

 

[Shari]

Hope you get some answers!

 

[gcvmom]

Neuro just called and said to cut Trileptal dose in half for now. He said since we're going to see the GP today to have him order sodium levels (Trileptal can cause hyponatremia, and sometimes fatigue is a symptom, but I doubt this is the cause) and also a Trileptal level just to see what it its. So the timing of all this works out good.

He said when he sees husband in February, he's probably going to pull the Trileptal and put him on something else, but he didn't say what...

That gives us time to also talk to the psychiatrist about whether this is maybe depression on top of everything. And what other AED's are a good fit for husband's mood issues.

Such a lovely little puzzle, isn't he?

 

[witzend]

I'm glad that you were able to talk to the neuro. If it were me, I'd call back and talk to the scheduling person and ask that they call us if there are any cancellations between now and your scheduled appointments.

I would be beside myself with worry if they were getting ready to do a layoff. husband has been sleeping in a lot too, and they're not laying people off, but you have to watch your back in this day and age!

 

[gcvmom]

Thanks Witz... they've already put him on a list to bump him up if there are cancellations. Apparently the neuro is scheduled to assist in the OR this month so technically/legally he's not allowed to be in clinic during this time (probably has something to do with his workload). Anyway, he did say if the fatigue doesn't improve with reducing the dosage and/or the seizures increase in frequency or get worse to call and he'd figure a way to see him.

The meeting with the GP was very productive. Besides ordering the various blood tests (essentially doing a complete battery besides the specific things the neuro wants to see), he's ordering a sleep test because he thinks husband has apnea. This was actually something I'd been telling husband he should have done for the past few months because he has ALWAYS snored. When he was in the ICU after his surgery last year, the nurse claimed that husband had sleep apnea because his breathing kept stopping, but I thought that was just because of the heavy sedation he was under. The GP explained that a "normal" person without apnea wouldn't be affected the same way by the opiates as someone with sleep apnea is.

So at least we're on our way to helping him one way or another.

husband was a bit rattled by the scale, which indicated he's gained 20 more pounds than when he was at his absolute heaviest a few years ago. It puts him about 60 pounds overweight. That certainly isn't helping his situation in a number of ways.

Maybe this will be his year to finally get his mental and physical health back on track! That will certainly do wonders for MINE!

I'll start another thread next week when we know more... thanks everyone!

 

[TerryJ2]

Oh dear, what a mess. Poor guy. I hope he gets in, asap!

I've got my fingers crossed.

 

[Hound dog]

Travis took carbotrol (sp?) for his seizures. If I could get him to go back to the neuro, he'd still be taking it. It didn't make him the least bit drowsy. And he was on a pretty darn high dose.

Hope the docs can get it sorted out. Fatigue like that really is awful. I had it for a year, then just couldn't stand it anymore and headed to the doctor. (figuring he'd think me crazy) But it was my B12 and folic acid levels thanks to the kidneys. Once they got that straightened out I was good to go again.

Hugs