Narcolepsy

[Guest]

OVER THE PAST YEAR I HAVE HAD PRETTY SEVERE FATIGUE WITH SLEEP EPISODES.
I FINALLY WENT FOR A SLEEP TEST AND PASSED IT WITH FLYING COLORS.
THE MD TOLD ME I HAD A FORM OF NARCOLEPSY AND GAVE ME PROVIGIL; I AM PRETTY BLOWN AWAY AND UPSET KNOWING I MAY HAVE TO TAKE MEDS TO STAY AWAKE AND MEDS ALSO TO FALL ASLEEP.
QUESTION: I HAVE TAUGHT 2ND GRADE FOR ALMOST 4 YEARS AND IT HAS BEEEN EXTREMELY STRESSFUL; COULD THIS BE AT THE CORE OF MY SLEEPINESS
ALL OTHER MD TESTS ARE NEGATIVE
ANYONE WHO CAN RELATE TO THIS PLEASE ANSWER ME
WM AGE 52
DEAN

[Guest]

HELLO,

I WAS DIAGNOSED WITH NARCOLEPSY IN 2002 AND I TAKE 400 MG OF PROVIGIL A DAY AND 40 MG OF RITALIN LA TUESDAY THRU FRIDAY AND 80 MG ON SATURDAY,SUNDAY, AND MONDAY (DUE TO MY WORK SCHEDULE).I AM 28 YEARS OLD AND A MOTHER OF FOUR CHILDREN AND I HAVE A WONDERFUL HUSBAND OF THREE YEARS. THIS STUFF HIT ME LIKE A TON OF BRICKS. I HAVE ALWAYS BEEN AN INDEPPENDANT, HEALTHY, AND ACCTIVE PERSON BUT NOW I HAVE NO ENERGY AND I AM SLEEPY ALL THE TIME AND I HAVE TO TAKE MEDS FOR THE REST OF MY LIFE JUST TO FUNCTION EVERYDAY. I THOUGHT I HAD COME TO TERMS WITH IT BUT HONESTLY I HAVEN'T ESPECIALLY WHEN I WENT AND SEEN THE LAST DR. THAT I SAW WHO TOLD ME I SHOULDN'T DRIVE O RWORK BUT I REFUSE TO GIVE IN. SO DON'T GIVE UP AND IF YOU NEED HELP MY DR. SUGGESTED TO ME ON SEEING A THEROPIST. GOOD LUCK!!!
[quote] OVER THE PAST YEAR I HAVE HAD PRETTY SEVERE FATIGUE WITH SLEEP EPISODES.
I FINALLY WENT FOR A SLEEP TEST AND PASSED IT WITH FLYING COLORS... [/quote]

[Guest]

Well,

I posted my greetings message and then clicked on this thread only to see that my story is very similar to the two of you.

I started out on Concerta and was changed to Provigil 200mg today.

I am with you guys. One way or the other, although it didnt occur to me that this would be a chronic condition until reading your posts.


[quote] HELLO,

I WAS DIAGNOSED WITH NARCOLEPSY IN 2002 AND I TAKE 400 MG OF PROVIGIL A DAY AND 40 MG OF RITALIN LA TUESDAY THRU FRIDAY AND 80 MG ON SATURDAY,SUNDAY, AND MONDAY (DUE TO MY WORK SCHEDULE). I AM 28 YEARS OLD AND A MOTHER OF FOUR CHILDREN AND I HAVE A WONDERFUL HUSBAND OF THREE YEARS... [/quote]

[Guest]

If you passed your sleep test with no evidence of narcolepsy even after a meal of carbohydrates, it may be possible that you are just extremely stressed. Is there any way possible to find a more stress-free job, or at least some way to relieve yourself of the stress for extended periods. Do you have summer vacations that would allow you to try out a new vocation or get other training?

Are you getting proper nutrition and calcium? Is there an estrogen problem at your age? My sleep problems became worse and worse as I aged. Sometimes a decline in estrogen will cause sleep loss. And, hot sweats sure as heck will. Are you menopausal or perimenopausal?

Next, I hope your doctor tested your thyroid. Make sure they do the expensive test, not that half-fast, useless one. Sometimes if your thyroid comes up smack in the middle of the profile, the doctors will think you have enough thyroid, and they may be very wrong. I find that when my thyroid is at the upper end of the thyroid profile, I am a lot more alert. When it slips down toward the middle ranks, I have many more problems staying awake despite 200 mg.Provigil a day. The doctors will fight you on this one, so if your thyroid is in the middle, ask for a trial on something like synthroid and see how you feel.

Also, heat can be a problem. Keep yourself cooler, if you can. Getting warm and cozy puts me right to sleep. Too much heat, however, keeps me up and makes me irritable.

Good luck.
jff
[quote] OVER THE PAST YEAR I HAVE HAD PRETTY SEVERE FATIGUE WITH SLEEP EPISODES.
I FINALLY WENT FOR A SLEEP TEST AND PASSED IT WITH FLYING COLORS... [/quote]

[margie.g]

How do you regulate the thyroid medicine? Do you take it daily or just with symptoms? What are the doctors concern with taking the thyroid meds?

[mbg]

Hi everyone :)

I looked up Narcolepsy on the Health Channel and read an article last reviewed on 2006.

I have a close friend who is 26 and is married and has two children, 8 and 4. She wants to enter medical school next fall and has been diagnosed with Narcolepsy so I am doing this as much for her as I am for any other reason.

First of all I met her and her husband while playing MMORPG's...specifically World of Warcraft and Everquest2. Both of them are superb players and very intelligent.

She did not pass both of her sleep tests with "flying colors."

The article I read was interesting and the article referred to the disorder as being initially caused by an auto immune disorder or toxin that affects chromosome 6. The article refers to the disorder as being genetically linked and not genetically linked if you pay close attention but family medical history important as a beginning step in initial diagnosis. Also, the author states it is not autosomal recessive , x-linked, or passed on in any other classic pattern.

My dad used to fall asleep countless times while driving and run through fences and run into creeks and broadside cars, etc. for countless years. He was diagnosed with sleep apnea but I often wondered if something else was wrong. When he passed away in 2003 he was 6'2" and 222 pounds and had numerous health problems at age 83.

I was in the cattle feeding business from the mid 70's to 1986. In know the UDSA has little clout and the FDA has been gradually been de-fanged over the years. I don't want to get into specifics but I believe millions of Americans...million and millions of people world wide...are having their auto immune systems challenged and toxins are an everyday happenstance.

I like the thyroid testing idea mentioned previously. My wife worked in a poison factory in Texas and ever since has had thyroid problems. In men, thyroid problems are often the cause behind hormone production and erectile dysfunction. I was around numerous sprays, powders, virus vaccines and performed well-over 1000 autopsies. In our feedlots we had a few virus outbreaks and often traveled to other feedlots to handle other breakouts which I typically controlled with re-vaccination of Red Nose Vaccine regardless of which virus was diagnosed. I aways changed the nutrition of infected pens to high fiber and low energy. (This is useless info lol).

I believe many sleep and neurological disorders are Environmental Disorders.

Read the article on the Health Channel if you want. Hit prominent medical school research centers and gather more information. There are recent news stories out there about sewage plants being incapable of filtering out many toxins and drugs (people dump so much down stools and sinks). Test your drinking water and bottled water and other drinks. Don't smoke or drink alcohol or do illicit drugs.

Try to find a story on the Health Channel about a woman you would often stand and pass out and and had several sleep studies done and who baffled doctors when no medical treatment program would work. She utterly gave up on doctors until her husband found a doctor willing to tackle her case. They discovered for some odd reason the blood from her brain and heart and lungs would rush to extremities and down she went. I am not sure (wife told me this story) but think she had some problems sleeping.

I will tell you this...a qualified emergency room physician will tell you can't take the medications mentioned above for the rest of your life especially if you are passing sleep studies with flying colors. You will develop further complications over the years and the side-effects could be long-term.

Look for referrals, send out emails, find YOUNG doctors.

Good luck to you all...

mbg

[narcofarkle]

It's hard to accept that we will have this the rest of our lives and have to be medicated to have any hope of staying awake. Narcolepsy is at the core of your sleepiness-not teaching. I've had it as far back as I am able to remember (toddler). So I'm like the person who was born blind. I don't know what it's like to be energetic and alert. Much like they don't know what it's like to see a beautiful sunset. I was undiagnosed until I was 50! Can you believe how long it took me to find a doctor to take my symptoms seriously? It was not for lack of trying. I'm 54 now. I've searched and researched for answers to the mystery of narcolepsy for 4 years. And what I learned was this: the "experts" don't agree on very much about it. They all have their opinions and all their opinions sound valid. Some believe it is caused by environmental factors, and some believe it is caused by sedatives used in surgery.Some think it morphs from other "illnesses". Some of them call it an auto-immune disorder. Some say it's not a disorder in itself, but one of many symptoms of a neurological disorder. Some merely think it's a chemical imbalance, etc. And if they can't even agree what it actually is, you gotta know they can't figure out how to fix it. So little is known about the process of sleep, even healthy sleep. It's not surprising that they haven't quite figured out unhealthy sleep.