Ask The Neurologist Updates

Go to Neurology homepage!
Enter your E-mail Address
Enter your First Name

Narcolepsy

Excessive Daytime Sleepiness/RLS/Idiopathic Hypersomnia

Narcolepsy

Postby jhp on Wed Nov 05, 2008 11:45 am

My sister has been diagnosed with narcolepsy. They do not know how she got it. She is 21yrs old. Its a pretty severe case with extreme cataplexy attacks. She has hypocretin... We have tried everything and she gets no REM sleep. We just dont know what to do now. She takes everything under the sun to stay awake and still falls ;"asleep" but never any good sleep. HELP
User avatar
jhp
 
Posts: 1
Joined: Wed Nov 05, 2008 11:43 am

Re: Narcolepsy

Postby Dr_Brown on Wed Nov 12, 2008 11:38 am

She has hypocretin
What do you mean by this?

... We have tried everything and she gets no REM sleep. We just dont know what to do now. She takes everything under the sun to stay awake and still falls ;"asleep" but never any good sleep. HELP


What does she take and at what dosage?
User avatar
Dr_Brown
Neurology Expert MD
 
Posts: 2
Joined: Wed Nov 12, 2008 10:36 am

Re: Narcolepsy

Postby owzxk82 on Tue Nov 29, 2011 11:34 pm

I am new to homeopathy. My wife has narcolepsy, and has for about five years. It is becoming apparent that she is getting worse, and the prescriptions are getting stronger, so I am eagerly seeking alternative treatments.

Initally, it took about two years to get the correct diagnosis. After two sleep studies with different physicians, both have said she has narcolepsy.

She suffers extreme daytime sleepiness, even though she can sleep as much as 18 hours a night (when not medicated), as well as cataplexy, hallucinations, sleep walking, and vivid/disturbing dreams.

Her cataplexy is rare, and in random (not associated with emotional change).

Since Ritalin and Provigil have not helped alertness, and sleep aids have not helped quality of sleep, she now takes Amphetamines in daytime (just changed presciprtion from Aderall to DextroAmphetamine), and GHB (Sodium Oxybate, trade name Xyrem) for nighttime.

She seems better with medication, but still is not normal. And neither of us likes the idea of taking amphetamines and date-rape drugs indefinitely.

She also has two seemingly unrelated health problems: cold hands and feet, and dietary intolerance of dairy and wheat.

I mention the cold hands and feet because they are always cold, profoundly cold, in any weather, yet she does not feel cold.

And the food sensitivity is unusual. I say sensitivity because she has tested negative for food allergies. If she eats dairy or wheat, about 12 hours later she gets extreme gastric distress, gas, bloating, diarreah, occasionally vomiting. She then gets whole body soreness, and retains a great deal of water in all her tissues for about 48 hours.

The diet can be controlled; the sleep disorder, however, is often debilitating, so it is our primary area of concern.

Any thoughts on where I can find additional material on homeopathy and narcolepsy
User avatar
owzxk82
 
Posts: 4
Joined: Sat Nov 26, 2011 1:37 am


Return to Sleep problems

Who is online

Users browsing this forum: No registered users and 1 guest