Re: Re: Sleep and PMG

[Guest guest]

I don't know what anti seizure meds your daughter is on, but I know our neuro

told us to be careful of dosing our daughter w/lomictal after noon as she will

be asleep by 8...apparently some of the AEDs can cause sleeplessness. Perhaps

ask your neuro about this? Also, make sure the bedroom is a bit on the chilly

side, that there are no sources of light (if you need a night light, it should

be on the red spectrum, as that is the only color that does not disturb the

pituitary's production of melatonin), spray organic lavender scent on a pillow

or two...etc. My husband and stepson call me the " sleep nazi " ! It is truly

exhausting to have to live like this, we all really understand!!

Good luck

Thea

Re: Sleep and PMG

Hi Diane,

Where is Dr. Chugani based? All this sounds too familiar. We seem to have every

other night be a sleepless one for Ruby after the Clonidine wears off at 3am.

Valium made her so drugged out and depressed I couldn't bare to see her in such

a zombie state. We are seeing the effects of no sleep and it's brutal (anger,

moodiness, ADHD,etc). It seems like every sleep EEG we do she sleeps through the

night, and while epileptical abnormalities are there, they never see what

happens at home- where she is up for hours talking, singing, unable to sleep. I

know this all comes with the PMG territory but I wish I could stop the wakeful

times. Thank you for sharing and please update if you come across anything

helpful. I have never had surgery suggested as she just has abnormal epileptic

activity, not a " classified " seizure-/ or maybe we have not had an experience

with a doctor who sees this issue enough. But I can't imagine how taxing this is

for the good part of her brain and b ody if it continues longer.

Thanks,

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> As I said Nisha was in the hospital to try and figure out the best option for

all her odd complaints of headache, dizziness and then the back sliding of her

gait and use of her leftie. So we had an 24 obs VEEG and PET scan and a visit

with Dr. Chugani. Things look great nothing uncontrolled as they said in

Indianapolis. We described that she cycles in doing well and then weak and looks

out to lunch. He said this sounds like ESES in cycles. This is non convulsive

electrical activity that looks like status on the EEG. The kids wake up feeling

horrible have ADHD sx, anger, behavior problems and learning problems especially

memory problems from the brain not being able to restore during sleep. And yes a

few had said what helps is Clobazam, valium or bursts of steroid. And yes it is

more common with PMG. I hope this helps someone. Now the hard part can be to do

it during the EEG. Dr. Chugani is such a great neurologist emails back in a few

hrs he said as soon as she starts wi th night awakening he will get her in for

another EEG to make sure this is what we are dealing with. Best of all she does

not need surgery!Diane

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