Replies to 'Struggling with Sleep Issues?'

 
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December 11, 2006, 9:10 pm PST

Narcolepsy

Quote From: ttksb4

I have suffered with Narcolepsy for 2 years now.  I have been on Provigil that whole time.  Only recently have I noticed that it doesn't seem to be working anymore.  I am the only person in my family with this disorder too so that doesn't help.  No one understands it or seems to really care.  Everyone assumes that I'm just lazy... sometimes I even question that myself.  I am 31 years old... have a 12 year old son & 8 year old daughter... and I just have absolutely no energy.  I am currently on the verge of losing the job which I have had for almost almost 9 years.  Just can't seem to get enough sleep.  Some days are better than others.  I have noticed that if I am under a lot of stress it seems to trigger the sleep episods.  As I'm writing this right now I can barely keep my eyes open.  Just feel like my body is totally drained of all it's energy.  Arms and legs feel like they are getting heavier and heavier.  I hate this feeling!!  I hate being tired all the time!!!  I am just so tired ALL of it at this point.  Just want to be a normal person again. 

I have had Narcolepsy since I was a teenager, but it was only diagnosed a little over a year ago.  I have been on Provigil since the diagnosis.

 

In addition to the Narcolepsy, I also have some problems with my body's sleep clock...it is off schedule.  I am so tired in the morning, I can hardly move.  I am the same way in the late afternoon and evening.  Then, when bedtime rolls around, I am wide awake.

 

For the sleepiness, and for the time clock adjustment, my doctor prescribed a Feel Bright Light Visor.  They are about $200, and our insurance won't pay for it.  I don't have my light visor yet...saving up for it, but I am looking forward to getting it, and getting less tired.

 

The visor is worn at prescribed times of day...it is like a light box, only portable, so you don't have to sit there in front of it, doing nothing.  The light is supposed to help you feel more awake, and when used at the correct times of day, it is supposed to help your body's sleep rhythms get back into sync.

 

Also, with all of the stress and lack of energy, is it possible that you may be a little depressed?  Talk with your doctor about this...it just could be that you might need an antidepressant on top of the Provigil. 

 

I have bipolar disorder, and that messes with my moods and my sleep.  The right bipolar meds plus the provigil have made all the difference in the world.

 
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December 25, 2006, 4:55 pm PST

I forgot to mention

Quote From: ttksb4

I have suffered with Narcolepsy for 2 years now.  I have been on Provigil that whole time.  Only recently have I noticed that it doesn't seem to be working anymore.  I am the only person in my family with this disorder too so that doesn't help.  No one understands it or seems to really care.  Everyone assumes that I'm just lazy... sometimes I even question that myself.  I am 31 years old... have a 12 year old son & 8 year old daughter... and I just have absolutely no energy.  I am currently on the verge of losing the job which I have had for almost almost 9 years.  Just can't seem to get enough sleep.  Some days are better than others.  I have noticed that if I am under a lot of stress it seems to trigger the sleep episods.  As I'm writing this right now I can barely keep my eyes open.  Just feel like my body is totally drained of all it's energy.  Arms and legs feel like they are getting heavier and heavier.  I hate this feeling!!  I hate being tired all the time!!!  I am just so tired ALL of it at this point.  Just want to be a normal person again. 

I take Provigil for Narcolepsy...see earlier reply.

 

I forgot to mention that my doctor has me take one day off from provigil per week...a day with no Provigil once a week.  This is to help retain the effectiveness of the drug, and even though I am totally useless one day a week...no driving, etc...I am more awake and alert the rest of the week.  Ask your doctor about this.

 

Becky

 


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