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Cruddy days

Jun 10, 2010 - 5 comments

I wish there were more good days than bad for Whitney.  It seems like for every "good" day she has, she then over does it, and then we have several bad days.  I know she overdid it all last weekend with family here and going on the float trip but she also just started the Lyrica and Nortriptyline.  So is it that???

She told me last night that the night before she woke up in the middle of the night shaking, not like she was cold either.  She didn't wake me up, but she says she couldn't and then went back to sleep and it happened a couple more times.  It didn't worry me at first, but now I am plagued by thoughts of siezures or something like that. Could it be? Or what else could it be?  

So many questions, not enough answers....

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Avatar universal
by LA1989, Jun 10, 2010
I know how you feel. And I'm really sorry she's been feeling so terrible.
Nick has been really bothered by the shaking lately, too. It wakes him up sometimes. Does she notice her heart seems to be racing or fluttering then? Nick seems to feel like his does those things more often than not when he is shaking.

I hope she's not having seizures....

Avatar universal
by CHRISTYDRAKE, Jun 10, 2010
It is hard to tell if it is the medicine or the regular AD symptoms, since side effects and the normal symptoms are usually the same.  I also hate it when Cody starts more than one medication at a time because you then can't tell which medication might be causing the side effects.  At one point, we took him off all meds(about 1 1/2 years ago) and started from scratch, one medication at a time(this was at the suggestion of the neurologist in St Louis).  Of course, none of those meds helped anyway.

Cody has been up for 36 hours now, can't sleep.  He is pushing it to make himself more tired so that maybe sleep will come.  If nothing changes over the weekend, I'm calling Cleveland-maybe time to try new meds.  Since the doxepin took care of so many symptoms, I don't think they want to change, but I figure we can always come back to what he is currently taking if new meds don't help at all.

1267372 tn?1317834880
by tdavidson, Jun 11, 2010
I am noticing that when Whitney wakes me up in the middle of the night because she doesn't feel good that she is tachycardic.  Something I will mention to the doctors soon.

I wish they only started one med at a time too & the fact that the side effects are the same symptoms as she was having before is completely frustrating to I call? do we just try to get thru it?  aaaaaahhhhhhh!!!!

I can't believe poor Cody can be up that long.  Have him read the dictionary, maybe that will put him to sleep!!! This AD is so frustrating and totally horrible. I am not a hating kind of person, but I hate this illness....

Avatar universal
by CHRISTYDRAKE, Jun 11, 2010
Cody finally hit a brick wall and fell asleep last night at 9:30.  He was still sleeping when I left for work at 8:00 this morning.  He was starving though, I always fix him breakfast before I go and he ate 4 waffles and 2 glasses of milk before crashing again.

That is the question isn't it? "'Do I call the doctor?"  I feel like I am a pest at times.  I haven't called since probably early May letting them know he was doing good with the vitamin D and what else can we do for the mornings.  They wanted him to start exercising, but he has worsened since starting the exercise.  I am going to see how the weekend goes, and if he is still struggling, I am going to make that call.

1267372 tn?1317834880
by tdavidson, Jun 11, 2010
I think to myself, that if Whitney had been fine (w/o AD) and she woke up feeling like she does now, I'd be running her to the doctor or ER....but since we know what she has and probably know more about it than any of the ER doctors here know about it, will it be worth it?  What would they do anyway?  

Glad Cody got some sleep!  Big breakfast eater!!! That's great.  Whitney hasn't been eating much this week.  When she was on the gabapentin she was ravenous and she gained 10 pounds! But she also go taller...go figure...But this week we are having a hard time getting her to drink as much as she should...maybe that's why she feels so yucky...

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