RE: Sleep- Insomnia- Night Seizure Activity-Please help!

[Guest guest]

We are going to see Dr. Devinsky next week- I feel like I am " cheating " on our

neurologist who works in the same place, but I have to find someone who can help

us!!

Thanks,

sarah

> >

> > > Hi,

> > > I wanted to know if anyone on this board has found someone who specializes

in sleeping disorders or have found any success with an alternative type of

solution to sleep? We have seen two sleep specialists here in NYC with no real

solution and we feel like we are desperate to get help. Not only is Ruby not

getting a full nights sleep, but we are all affected by not getting sleep. She

takes Clonidine at night to fall asleep, and then an anti-seizure medication for

the abnormal epileptic activity at night. Not considered full seizures but

seizure activity, the belief is the activity keeps her from getting her brain to

slow down and sleep, however, the medications that we have tried have not

worked.

> > > We have tried melatonin, valium, ambien, klonzepam, lyrica, keppra, and

now are trying lorezepam which 3 out of 7 nights will work ok, the other nights

she will be up at 3 and restless, talking, moving around, and will not fall back

asleep. We have had sleep studies while on most of these medications which have

shown the seizure activity to be highly active and not under control. The

lorezepam does not work that well but so far it is the only medication that has

not altered her personality to be drugged out or highly volatile.

> > > I have this hope there is some specialist out there doing research or

someone who has had the same kind of situation, who has a great idea for us to

try. We are willing to travel to meet with a specialist, if it means that we

will find some answer. So far our neurologist has been trying all kinds of

medications, and his most recent idea is to do a controlled medication

experiment on her in the hospital where they give her high doses of valium and

other controlled medicine to see if anything can reduce the seizure activity

over the course of a few days.

> > > (sounds like a very expensive and scary thing to do and I am feeling a

little skeptical that this is the only alternative for her sleep problem).

> > > Thank you for any ideas or leads!

> > >

> > > (Ruby-5yrs old, right hemisphere polymicrogyria)

> > >

> > >

> >

> >

[Guest guest]

Hi Karla,

We live in NYC-Brooklyn.

Thanks--

sarah

> > >

> > > > Hi,

> > > > I wanted to know if anyone on this board has found someone who

specializes in sleeping disorders or have found any success with an alternative

type of solution to sleep? We have seen two sleep specialists here in NYC with

no real solution and we feel like we are desperate to get help. Not only is Ruby

not getting a full nights sleep, but we are all affected by not getting sleep.

She takes Clonidine at night to fall asleep, and then an anti-seizure medication

for the abnormal epileptic activity at night. Not considered full seizures but

seizure activity, the belief is the activity keeps her from getting her brain to

slow down and sleep, however, the medications that we have tried have not

worked.

> > > > We have tried melatonin, valium, ambien, klonzepam, lyrica, keppra, and

now are trying lorezepam which 3 out of 7 nights will work ok, the other nights

she will be up at 3 and restless, talking, moving around, and will not fall back

asleep. We have had sleep studies while on most of these medications which have

shown the seizure activity to be highly active and not under control. The

lorezepam does not work that well but so far it is the only medication that has

not altered her personality to be drugged out or highly volatile.

> > > > I have this hope there is some specialist out there doing research or

someone who has had the same kind of situation, who has a great idea for us to

try. We are willing to travel to meet with a specialist, if it means that we

will find some answer. So far our neurologist has been trying all kinds of

medications, and his most recent idea is to do a controlled medication

experiment on her in the hospital where they give her high doses of valium and

other controlled medicine to see if anything can reduce the seizure activity

over the course of a few days.

> > > > (sounds like a very expensive and scary thing to do and I am feeling a

little skeptical that this is the only alternative for her sleep problem).

> > > > Thank you for any ideas or leads!

> > > >

> > > > (Ruby-5yrs old, right hemisphere polymicrogyria)

> > > >

> > > >

> > >

> > >

[Guest guest]

We have been using Clobazam as well to keep the epileptic activity for

Finlay (BFPP, 10) low at night. In Belgium it has been legal for a while and

it has helped a lot these last 2 years.

Annelies

Sleep- Insomnia- Night Seizure Activity-Please

help!

Hi,

I wanted to know if anyone on this board has found someone who specializes

in sleeping disorders or have found any success with an alternative type of

solution to sleep? We have seen two sleep specialists here in NYC with no

real solution and we feel like we are desperate to get help. Not only is

Ruby not getting a full nights sleep, but we are all affected by not getting

sleep. She takes Clonidine at night to fall asleep, and then an anti-seizure

medication for the abnormal epileptic activity at night. Not considered full

seizures but seizure activity, the belief is the activity keeps her from

getting her brain to slow down and sleep, however, the medications that we

have tried have not worked.

We have tried melatonin, valium, ambien, klonzepam, lyrica, keppra, and now

are trying lorezepam which 3 out of 7 nights will work ok, the other nights

she will be up at 3 and restless, talking, moving around, and will not fall

back asleep. We have had sleep studies while on most of these medications

which have shown the seizure activity to be highly active and not under

control. The lorezepam does not work that well but so far it is the only

medication that has not altered her personality to be drugged out or highly

volatile.

I have this hope there is some specialist out there doing research or

someone who has had the same kind of situation, who has a great idea for us

to try. We are willing to travel to meet with a specialist, if it means that

we will find some answer. So far our neurologist has been trying all kinds

of medications, and his most recent idea is to do a controlled medication

experiment on her in the hospital where they give her high doses of valium

and other controlled medicine to see if anything can reduce the seizure

activity over the course of a few days.

(sounds like a very expensive and scary thing to do and I am feeling a

little skeptical that this is the only alternative for her sleep problem).

Thank you for any ideas or leads!

(Ruby-5yrs old, right hemisphere polymicrogyria)