Narcolepsy Support Group

Hello, I would like advice about some problems I am having, I have read stories similar to mine on this forum, didnt know I was dealing with an "illness" untill recently.I would say I am tired,but that is a understatment.I tell my wife and freinds I am tired/sleepy, and they dont get it.I go to bed at 10pm, hope to fall asleep by 1 am.if my legs do not jerk to often, or my dreams dont wake me up.Then my alarm goes off at 4:30 am, and I throw it against the wall.Then my other alarm goes off, and I slam it on the table.Then my wifes alarm goes off, and she begins the task of trying to get me awake.When I do get up, I am still kinda asleep, somtimes walking in my sleep.I usualy have a headache.I then make my way to work, and begin guzzling coffee.I spend the next 8 hours on my feet, that soon start hurting, along with leg fatigue.As the day wears on I become extremly tired.My coworkers tease me about it,saying let me guess, you are sleepy again.I cant hold on to my tools, I am always dropping them, and If I need to borrow a tool from a co worker they tell me not to drop it.I usualy fall asllep on breaks, and am late getting back to my work station as well.When I get home from work, I DO NOTHING. I want to do alot of things, but cant, I am just to tired. And it is getting worst.I ache all over, my eyes burn, I am alawyas in a fog, unless I have just drank a couple cups of coffee.This has been going on for 2 years. I worked 3rd shift for 14 years.3 years ago I went to 1st shift, and it's been down hill ever since.The past 5 months have been the worst.

Next week they are putting me on 12 hour shift, 6 days a week.When my boss told me this, my heart sank. I know I will not be able to make it through the day.I started looking on the net for answers, I am afraid I will have to quit my job now.

After some searching I came accross Narcoepsy.As I read the symptoms, I got so happy I almost cried.I didnt know what I was going through was an illness. I also found some of my symptoms under Chronic Fatigue syndrom. I went to a doctor about 2 yrs ago, and he said I was depressed.OK...no I am not. I am very happy about every thing, except the way I feel.He put me on a med that didnt releive my symptoms, only zoned me out. I stopped taking it after 2 or 3 months.Havnt taken anything since.

After reading about Narcolepsy, and CFS, and shift work sleep disorder, I was so excited i went to the doctor the same day. He seems to think I am just sleepy, and perhaps i have CFS.He gave some meds to help me sleep.Ive taken it twice now and woke up with a bad head ache.I still did not fall asleep until midnight, it did seem to stop the leg jerks i get.Today is satarday, I slept 10 hours last night, am still tired, and feel cloudy.I recall waking up last night several times, seems my dreams were intense.I thank God for sat, I get too make up for my sleep loss.But starting next week I will have to work that day as well.I cant stand the thought of quiting my job, been there 12 years, but I cant keep this up.I am 36 and feel 99!

Any way, I was beginning to think I was going crasy.I know it cant be normal to be this tired all the time.I want my social life back, I want to be able to work at my job, and do a good job, with out fighting the urge all day to quit and just go home and rest.I want to wake up and feel energised again, feel like dooing somthing other than just trying to make it to the couch.I want to go one day with out my legs aching, my feet feeling like I dropped a boulder on them. A day without a head ache, a day with out dreding about how dredfull the next day is going to be if I have to work over time.Is there hope?I went to the drug store, I have boughts several over the counter suppliments, that are supposed to give you energy.My wife was taking a diet med last year, I tried one of those and it made a huge difference.But I am not over weight, and do not need to take diet pills.

Any suggestions, thoughts, ideas would be greatly appreciated.

First I want to welcome you to the group, there are many supportive people on this site. My advice would be to go see a neurologist. They specialize in sleep disorders and can focus on your symptoms more. Once you have met with one they will probably schedule a sleep study where you sleep over night at a sleep center hooked up to electrodes to see what rem of sleep you are in fact getting. Either they will find you are not going into a deep enough sleep and that is why you are not waking up rested or you are going into a deep sleep and they will do what is called an MSLT a series of naps after the sleep study to see how quickly you are getting to the deep sleep. That is the way they determine Narcolepsy. There is no other cut and dry way of knowing. I hope this has helped some. Good Luck, I a here if you have any other questions.

Have you had blood tests? If not, I would suggest doing that first. You may have a underlying problem that is causing the sleep problems. Also, with the headaches, I feel it may be necessary to explore having an MRI of the brain.

Like you, my sleeping habits were often attributed to depression. About 9 months ago during rough times I saw both a psychologist and a psychiatrist. They both recognized that my physical symptoms seemed more severe than the effects of depression. It took 10 years for this to be recognized. I feel that this is because I've been more open. Some advice I would give you - Don't hesitate to offer as much detail to your doctors as possible. If your doctor doesn't take you seriously, find another one. I suggest seeing a D.O. rather than an M.D. A D.O. will treat PROBLEMS not SYMPTOMS. Good luck on your quest to get well and keep us updated.

Another thing I thought of.... Have you researched sleep apnea?

Just a little something that I found that helps the leg pain if you are on your feet all day. I work in ga job were I do not sitt down at all the entire time I am at work and my legs and feet would bring me to tears by the time I hit the bed at night so I looked into shoes. I went and tried on a pair of z-coils. I absolutely love them. Yes they are a little pricey but I have owned the same pair for 3 years and they have worked out to be cheaper than if I continued to replace my shoes everytime the support wore out. But they still look new and will last a long time. Is this an answer to the important problem ..no but it takes the pain away that I was not will to chance with meds. Hope this might help you.

Thank you for welcolming me, yes it has helped.

Float25 I have not had blood test as of yet.I have read a little on sleep apnea, not much.I do know according to my wife I breath fine in my sleep, I dont even snore.Last week was the first doctor visit i had in a while, and only went because I was tired of beeing so tired.I began to look on the net for answers, and come accros narcolepsy and sleep disorders.After reading the symptoms, I felt I was on the right track. I hope in the next follow up the doctor will run blood tests.But it seems I will have to go to a sleep clinic to be certain. I was told you have to sleep on your back while they monitor you.That will be a problem, I have never been able to sleep on my back. I dont know what is going on with me, but I am going to find out.I have all but abandond my hobies, sports,hunting, hiking, ect..I rarley go out during the week, Just standing in a movie ticket line, wears me out.Thanks for the advice.

becbec I will look into those shoes.I am on my feet for 10 hours, I get one 10 minute break, and a 30 minute lunch.We are supposed to wear safty boots, big, heavy steel toed boots.I havnt worn them in over a year.I wear running shoes now, had to pay a doctor to excuse me from the safty boots.It was that or quit my job.I also had special inserts made from a cast, but it didnt seem to help.It is not only my feet and ankles that hurt, it is the sides of my upper legs, and hips as well.They feel like they are going to buckle on me, and sometimes do.I dont fall to the floor, but it is like my knee just buckles on me, and I almost fall.My legs feel like i just did a couple hundred squwats, and then somebody frogged me in the thighs.Some days just rubbing them is very painfull.

Yes, your post helped, I am googling z-coils now, thanks.

I have had 2 sleep studies and am going for my 3rd tomorrow night. You dont have to sleep on your back. They want you to sleep how you would any other night so it will be accurate results.

Malcom,

Any results on the shoes? Just curious if you have tried them on? There are a few local shops around me that carry them where you can go and try them on and get the right size, then you might be able to find them on Ebay at a cheaper price.