Topic : Struggling with Sleep Issues?

I am 45 years old and was diagnosed last year with Narcolepsy.  I also have Bipolar disorder, Fibromyalgia, Long QT syndrome,  Breast Cancer,and a few other things.  I have had a lot of bad doctors in my lifetime, who didn't pick up on the clues.  My current doctor is very understanding, and listens to me. 

My doctor referred my to a sleep specialist in Yakima, WA, near where I live.  Dr. Deshpande did a complete sleep study, nighttime, and daytime.  I was diagnosed with Narcolepsy.  He prescribed Provigil.  

I used to have to sleep all day.  I could not drive without falling asleep at the wheel.  I would have to nap for a couple of hours just to function for a little while.  I would get up in the morning to get my husband off to work and my kids off to school.  Then, I would go back to bed until noon or later.  I would be tired and groggy and need another nap around 4:00.

I was really ashamed of sleeping so much.  I felt lazy and useless.  Provigil has changed my life.

My husband has obstructive sleep apnea, and restless leg syndrome.  He uses Requip and a C-Pap machine.  His legs still get restless.  He finds that exercising in the evening helps a lot with the restless legs.

One of my three boys has Narcolepsy, which had been mis-diagnosed as ADHD for years.  Although some ADHD meds can be used for Narcolepsy, they have awful side effect, like bad tremors.  Since going on the Provigil, he has started making the A honor roll.  I wish that the psychiatrist who was treating the ADHD had tested more thouroghly.

My two younger boys both have restless leg syndrome, which was causing them to be hyperactive, inattentive, and terribly grouchy.  They are now both on Requip, and although we still have normal sibling rivalry, we do not have such a time with yelling and hitting each other.  My younger two boys also have Esophoria, which is a vision problem that can cause ADHD symptoms because it causes problems with reading and writing.  

Our middle son was on ADHD meds for years, and now it turns out to be a sleep problem.   We haven't completely ruled out ADHD, or Bipolar disorder in him, but it is a big frustration that the kids were automatically diagnosed with ADHD, when there should have been a lot more testing to find the underlying cause of the problems.  Because of a newly diagnosed heart arrythmia, our son can no longer take the ADHD meds, much to his teachers' dismay.  Between getting the sleep problems treated and treating the vision problems, we hope to see improvement in the kids' school performance. 

I can't be the only one out there with a sleep disorder...there are over 200 sleep disorders out there.  If you are excessively sleepy during the day, talk with your doctor about getting a sleep study done by a sleep specialist.  Getting diagnosed and treated has changed my life.

My husband has Restless Leg Syndrome and Sleep Apnea...he was not ever getting past phase I sleep...he is so much easier to live with, now that he is using Requip for the Restless Leg Syndrome, and a C-PAP machine for the sleep apnea.

One of our boys has Narcolepsy, and two of them have Restless Leg Syndrome.  The Restless Leg Syndrome was waking them up over 250 times a night!  They are all doing much better with the right meds.

I'm here,

I've been on Ambien for about 2 years. First the 10 mg and 6 months ago switched to the Ambien CR which is not all it's cracked up to be. It's a tablet so you can't break it in half, which I would do from time to time with the 10mg. Not sleeping can affect every part of your being. It's horrible.

I'm bipolar. I've been to therapy, and the docs discovered about 3 years ago. I am feeling so much better on meds. My doc got them perfect with the first try. Then I went into MP 5 years ago. The MP just recently started to be a problem. That just made me kookier. I would suggest that if you are over 45 and your cycle has been weird and you just know something is funny, go to your OB and ask them to do the bloodtest. I actually made a list of all the symtoms I was having. When I went to my appt, I gave my doc my list, and he knew right away. They did the bloodwork ( I'm waiting for a call back) but he already started me on Femhrt.

PW

I, too, have Bipolar Disorder.  Fortunately, I am on a good set of meds (finally).  I have just entered surgical menopause, due to hysterectomy with ovary removal (because of breast cancer...couldn't take the antihormone drug due to a heart arrhythmia...sounds like a soap, doesn't it?)

Sleep problems and Bipolar go hand in hand.  Sleep problems because of menopause go hand in hand.  Mood swings and menopause go hand in hand.  Unfortunately, I cannot take hormone therapy because the cancer had estrogen receptors.  My doc says I will be more succeptible to mood swings and depression for a couple of years.  We will adjust my meds as needed.

I take temazepam for sleep.  My sleep doc has me empty the capsule under my tongue and hold it there.  The mucosal tissue absorbs the chemicals faster than my stomache.  I have been able to cut my dose in half.  However, because I'm not getting any Delta sleep, we are researching meds to find one that will help.

Hey, have you checked out Dr. Phil's posting board for Bipolar Disorder?  Go to the message boards prompt.  Then go to "Mental Health", Then go to Bipolar Disorder.  There are a lot of people sharing their stories and offering encouragement to each other. 

Glad to hear from you.

I am 66 years old.  I work part time at a job that I really like.  My problem is I am taking 2 xanax every night to go to sleep.  When I get home from work I seem to sleep the rest of the day.  I  feel like a sluggard and it is all my fault because I obviously must be plain lazy.  i feel so guilty I just hid this note from my husband. Could this problem be because of the xanax.

thanks for any help you can give me.

I saw a sleep specialist last year, finally, after years of being so sleepy during the day that I could hardly keep my eyes open.  I had to sleep a lot just so I could stay awake to drive, or help the kids with their homework.  I have Narcolepsy (I've posted here previously, so I won't give you the long version of my story.)  I felt so ashamed and lazy.  I tried to hide it from my husband and everybody else.  I finally talked about it with my doctor.  She referred me to a sleep specialist, who did a nighttime and daytime sleep study.  I am now on Provigil and life is much better.  Hope you can get some help.

I don't have any experience with Xanex, but I have heard that anti-anxiety drugs make people sleepy.  I wouldn't stop taking it though until you check with your doctor.  I have anxiety issues, and you shouldn't be without your meds.  I'll pray for you.

Hello,

Hello everyone.  Just registered, so new to this! 

My name is Samantha and I am 34 years old.  Since my early twenties I have needed an awful lot of sleep.  My main problem is that in England (where I'm from) the Doctors do not seem to want to help with this problem.  It is so so debilitating.  I have been sent to a Psychiatrist which was a complete waste of time.  I was medicated with Prozac for years until I finally weaned myself from them over 2 years ago.

My blood has been tested for Thyroid problems, Diabetes etc. they always come back negative, which is a very good thing but at the same time, what is causing this fatigue!  My Doctor has said to me in the past that it is not Narcolepsy but probaby ME/CFS but there is no test and nothing he can do, which is not helpful at all.  I have had Psychoanalysis for a few years (now stopped due to money) and she said that I sleep a lot because my brain shuts down as I'm trying to shut the world out.  Does that mean that my life has to be perfect before I wake up!!  I'm not buying that.

I now have a one year old son and am very worried that as he gets older he will resent me not having a lot of energy, I feel trapped and want a new body!!

I would be so so grateful for any view points on this.

Thanks, Sam

I hit the wrong button, and it posted without a message!

As I was saying, does England have Sleep Specialists.  There are over 200 sleep disorders that make people extremely tired during the day.  My husband has sleep apnea AND restless leg syndrome.  I have Narcolepsy.  None of these could have been diagnosed or ruled out without a formal sleep study. 

In a sleep study, you stay overnight at the sleep facility.  They hook up monitors for EKG (heart), breathing, leg and arm movement, and some other things.  There is a camera that films in the dark.  This way, they can see how you sleep.  After the night time study, I stayed for a daytime study.  On every "nap", I fell asleep and had REM sleep within 5 minutes.

Look on the web under Narcolepsy...try the Provigil web site.  It is very informative.  There are other symptoms that go along with Narcolepsy.  Check them out.

I was misdiagnosed as a hypochondriac, and then with CFS (I have fibromyalgia, which is related).

I am now on Provigil, and it has changed my life. I am still sleepy sometimes, but I can function so much better.

All three of my boys have sleep disorders too...misdiagnosed with ADHD!  Two of my boys have restless leg syndrome, which was waking them up over 250 times a night!  The oldest one has Narcolepsy like me.  He is also on Provigil, and his grades have gone way up since starting on it.  Adderall made him so shakey, he could hardly play his trumpet.

I would encourage you to seek out a sleep specialist, wherever you can find one...make a trip to the United States if you have to.  Although, I thought Europe was ahead of the United States on using new drugs...our government puts so many regulations on getting them approved for use in the US.

Good Luck...Becky

Thank you for your reply.  I will find a sleep centre and try and talk my GP into referring me.   I try very hard to just cope with it but on days like today it is hard when I am nothing more than a zombie when awake.  It is very frustrating to go to bed and wake up in the morning and feel like you haven't slept.

It must be very hard for you all to cope, I admire you.

Thanks again.

Sam