Post by Amy Lombardi on Mar 31, 2009 9:42:10 GMT -5
Subject: feels like she's falling, panic
Name: Anonymous
Date Posted: Oct 16, 08 - 10:50 AM
Message: My daughter, JNCL age 19, says she feels like she's falling, asks how high up she is all the time, and panics if you try to move her, even rolling from side to side. It's been going on for a couple months now. We've adjusted meds with no change. I wondered if anyone else has seen this symptom?
Name: Dusti
Date Posted: Oct 16, 08 - 2:34 PM
Email: Click here to Email
Message: it just might be the part of the brain that the disease is affecting
Name: Corrina Dahl
Date Posted: Oct 17, 08 - 7:33 AM
Message: Could it be vertigo? An ear infection causing vertigo? I'm just throwing some stuff out there. Often in adults there aren't clear signs of ear infections, like pain or fever etc but vertigo can be a symptom.
I also think vertigo can cause a sensation of falling even if a person is only sitting or lying down.
Name: Anonymous
Date Posted: Oct 17, 08 - 8:30 PM
Message: Thanks for the info. I'll check out the ear infection idea. It's always so hard to tell what's going on.
Name: angela
Date Posted: Oct 18, 08 - 4:37 AM
Message: I think checking ears is a good idea but panic and anxiety when moving can be part of juvenile battens , when the young people are losing spacial awareness. I am sure you are doing this already but a calm environment and one person giving calm instructions can help, too many voices can add to the confusion and anxiety. I dont know which medications your daughter is having and you mentioned adjustments but some medications for anxiety might help?
Name: Anonymous
Date Posted: Oct 18, 08 - 7:27 AM
Message: We have tried several medications over the years - panic has been an ongoing problem. Ativan worked for awhile, but now increasing it seems to have an opposite effect, making her more anxious and sleepless. This is just the first time she's said she feels like she's falling. I kinda figured it was just disease, but hadn't read about this feeling specifically. Her neurologist thinks it's disease, too. I appreciate the feedback, though. It makes you crazy when there's nothing you can do to help.
Name: Nancy Peterson
Date Posted: Oct 20, 08 - 4:26 PM
Email: Click here to Email
Message: Disease or not you still want to try to treat it. When Ativan no longer worked for my son, surprisingly Valium did. It was for anxiety. If you don't have the help of a psychiatrist, I would suggest getting one. They are the pros on this type of thing and it was ours that found the answers when David was just about the age of your child. If it doesn't work for your child, maybe you can take it!!!!! Just kidding, but boy don't we feel like it sometimes. Hang in there, David's did stop with age and disease progression I am sorry to say. But there were many good years when he was a calm teddy bear!
Name: jb
Date Posted: Nov 4, 08 - 7:38 AM
Message: have you looked at the web site at seeability.com
go to services and find juvenille battens disease
they have 2 files on care of children with battens
disease i think you will find the information
valuable and you can copy it for reference and
for help at the doctors office it does talk about
moving kids and the panic we have dealt with these
behaviors and I agree valuim help one son and it was
xanax for the other and I also agree a low dose for
mom is good medicine I put a small cd player outside
my sons bedroom and kept it on this calming water
wave music and it really helped me keep calmer
they pick up on your anxiety very quickly and it
seems to make them increase in panic remember this
too will pass others will surely be able to express
that too you it seems forever when your there i know
but it passes all to quickly it the sceme of things
lots of love to you and your child.
Name: Anonymous
Date Posted: Oct 16, 08 - 10:50 AM
Message: My daughter, JNCL age 19, says she feels like she's falling, asks how high up she is all the time, and panics if you try to move her, even rolling from side to side. It's been going on for a couple months now. We've adjusted meds with no change. I wondered if anyone else has seen this symptom?
Name: Dusti
Date Posted: Oct 16, 08 - 2:34 PM
Email: Click here to Email
Message: it just might be the part of the brain that the disease is affecting
Name: Corrina Dahl
Date Posted: Oct 17, 08 - 7:33 AM
Message: Could it be vertigo? An ear infection causing vertigo? I'm just throwing some stuff out there. Often in adults there aren't clear signs of ear infections, like pain or fever etc but vertigo can be a symptom.
I also think vertigo can cause a sensation of falling even if a person is only sitting or lying down.
Name: Anonymous
Date Posted: Oct 17, 08 - 8:30 PM
Message: Thanks for the info. I'll check out the ear infection idea. It's always so hard to tell what's going on.
Name: angela
Date Posted: Oct 18, 08 - 4:37 AM
Message: I think checking ears is a good idea but panic and anxiety when moving can be part of juvenile battens , when the young people are losing spacial awareness. I am sure you are doing this already but a calm environment and one person giving calm instructions can help, too many voices can add to the confusion and anxiety. I dont know which medications your daughter is having and you mentioned adjustments but some medications for anxiety might help?
Name: Anonymous
Date Posted: Oct 18, 08 - 7:27 AM
Message: We have tried several medications over the years - panic has been an ongoing problem. Ativan worked for awhile, but now increasing it seems to have an opposite effect, making her more anxious and sleepless. This is just the first time she's said she feels like she's falling. I kinda figured it was just disease, but hadn't read about this feeling specifically. Her neurologist thinks it's disease, too. I appreciate the feedback, though. It makes you crazy when there's nothing you can do to help.
Name: Nancy Peterson
Date Posted: Oct 20, 08 - 4:26 PM
Email: Click here to Email
Message: Disease or not you still want to try to treat it. When Ativan no longer worked for my son, surprisingly Valium did. It was for anxiety. If you don't have the help of a psychiatrist, I would suggest getting one. They are the pros on this type of thing and it was ours that found the answers when David was just about the age of your child. If it doesn't work for your child, maybe you can take it!!!!! Just kidding, but boy don't we feel like it sometimes. Hang in there, David's did stop with age and disease progression I am sorry to say. But there were many good years when he was a calm teddy bear!
Name: jb
Date Posted: Nov 4, 08 - 7:38 AM
Message: have you looked at the web site at seeability.com
go to services and find juvenille battens disease
they have 2 files on care of children with battens
disease i think you will find the information
valuable and you can copy it for reference and
for help at the doctors office it does talk about
moving kids and the panic we have dealt with these
behaviors and I agree valuim help one son and it was
xanax for the other and I also agree a low dose for
mom is good medicine I put a small cd player outside
my sons bedroom and kept it on this calming water
wave music and it really helped me keep calmer
they pick up on your anxiety very quickly and it
seems to make them increase in panic remember this
too will pass others will surely be able to express
that too you it seems forever when your there i know
but it passes all to quickly it the sceme of things
lots of love to you and your child.