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Diagnosis of idiopathic hypersomnia - Online Doctor Chats

Date : 21-Feb-2012
User rating for this question
Very Good Posted in: Mental Health
Answered by

General & Family Physician
Practicing since : 2005
Answered : 2248 Questions
User :   I'm not sure that my diagnosis of idiopathic hypersomnia is accurate given my other symptoms. Can you help?
Doctor :   Hi
Doctor :   I am Dr. xxxxar
Doctor :   Yes I can help you
User :   Thank you
User :   Should I go over my other symptoms?
Doctor :   yes
User :   I have migraines, nausia, fatigue that is so bad that i sleep for up to 20 hours a day
User :   my neurologist diagnosed me with hypersomnia, but my PCP also diagnosed me with anemia
User :   my PCP has tested me for celiac, thyroid problems, mono, diabetes, and adrenaline problems, but everything came back normal
Doctor :   ok
User :   i have abdomial bloating and gas that is painful
User :   i don't do anything anymore except work...i'm either too sick or too tired to do anything else.
Doctor :   What is your age? and since how long you feel you are sick?
User :   28, and almost one year
Doctor :   What is your height and weight?
User :   156 lbs (i've gained 30 lbs in less than a year, too, diet has not changed) and i'm 5'6"
Doctor :   How did this start at first?
User :   in October of last year, I got what I thought was a cold. I became very tired and ever since then i don't feel that I ever got better.
User :   my PCP thought it might also be a vitamin D deficiency, and told me to take a supplement
Doctor :   ok
Doctor :   How many hours do you sleep at night?
Doctor :   Do you get up in between?
User :   A few years ago I slept a normal 8 hours, but now I come home right after work and go to sleep, probably about 10-12 per night. I wake up probably 2 times in the night, but just to roll over or go to the bathroom
Doctor :   Ok so did you see any change in the night sleep than last year ( before you were normal)
User :   not really. might wake up once or twice, for the same reasons
Doctor :   Ok now coming to the day time
Doctor :   Do you feel sleepy at work?
User :   yes, my doctor has rx'd my some nuvigil, which doesn't help much
Doctor :   Did you ever fall down because of sleep weakness at work or driving etc?
User :   i fell asleep at work once, but i didn't fall down. i sometimes don't drive myself to and from work because i am too tired. but i've never passed out, no.
Doctor :   Are you sure if you are fatigued or feeling sleepy during work / after work?
User :   i'm positive; falling asleep just happens with i get home, i don't even have to try
Doctor :   So it is not fatigue
Doctor :   but feel sleepy?
Doctor :   Do you have similar history in the family or symptoms of headache, hypotension or drop attacks in the family?
User :   i thought they were the same, but i guess sleepy is a good word...sleepy to the point of going to sleep at weird times
User :   everyone in my immediate family has migraines, my mom has HYPERtension, but no one has sleep disorders.
User :   I have an innocent heart murmer that was looked at by a cardiologist...he said I was ok
Doctor :   You are ok
Doctor :   Do you remember the dreams after the sleep?
User :   yes, i have many and they are vivid
Doctor :   Do you feel fresh after waking up?
User :   no
Doctor :   Ok
Doctor :   I am sure by now you would have read considerably about Idiopathic hypersomina
User :   yes
Doctor :   It is of three subtypes
Doctor :   1) One with family history
Doctor :   2) Second after viral infection
Doctor :   3) Pure idiopathic
Doctor :   This is a very rare sleep disorder
Doctor :   Managed by a sleep physician
Doctor :   The symptoms you have put fit into Idiopathic variety
Doctor :   however as I said, it is a very rare one and the diagnosis is made on exclusion
Doctor :   That is ruling out all other things
Doctor :   with the help of physical examination and a battery of tests
User :   will it ever get better?
Doctor :   blood work, including a basic metabolic panel, thyroid function tests, and a CBC with differential
Doctor :   If the diagnosis is correct, then I should say that these episodes can be controlled
Doctor :   However the there is no complete cure
Doctor :   The treatment includes Lifestyle modification and medications
Doctor :   Behavioral approaches and sleep hygiene techniques are recommended
Doctor :   I would like you to get this diagnosis confirmed
Doctor :   again with
Doctor :   Psychiatrist, Pulmonologist also
User :   ok. i had a sleep study already....I am making an appointment with a psychiatrist to make sure it's not depression, but i will also see a pulmonologist.
Doctor :   It should be NREM sleep in this variety
Doctor :   So ask if the sleep study states that
Doctor :   That is deep sleep
User :   ok
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