My Doctor Told Me To.

After 4 great years of being a narcoleptic with cataplexy, and by great I mean grateful as I am able to drive and hold a full time job, I was told by my doctor that I should join some site or group. As I have already joined multiple sites over the years- this is the only one that has any recent activity so this is my first time telling anyone ( aside from grampa who suffers from the same) that has narcolepsy my story.
it goes a little something like this..

I was about 12 years old when this all started ( im guessing im right because it seems to be that I usually am) I had a really bad case of mono and was out for about a week. I was a very active child and after that one week I noticed that I had lost a lot of energy. I wasn't able to run multiple sprints during my track practices without feeling winded, and suicide drills in basketball.. well.
I started sleeping in school when I was a freshman- only in math and sometimes religion-
my sophmore year I transfered from a catholic school to a public school, and I was put into classes I had already taken so I suppose I didnt see a point in being awake when I was passing the classes. Junior year I slept in almost every class, and had awesome teachers who knew I would get my work done anyways.
Senior year was the worst year of my entire school career thus far. I was only in 4 classes, and welding was the only one that I would sometimes be awake for as its quite dangerous to be tired and weld. This year was also very difficult for my family as my parents had planned on moving out of state ( my father had already moved for a job and my mother was selling our house) 2 weeks after our house was put up for sale and my father had left my sister broke her back and was diagnosed with Hodgkin's Lymphoma( she has been in remission for 3 years.)
So i was a senior, I was a waitress, and I was the only person living in my home that was working- I slept from 11pm-1pm waking up between classes to move my body- I even slept in gym class.
After being harassed by 1 teacher I was told I needed a doctors note- which I had already brought to them- I gave them probably 10 notes saying I was being treated for severe fatigue and was still almost kicked out of school more than 5 times in less than a school year.
I had originally gone to my doctor because I was having horrifically lucid dreams, and was unable to sleep with my lights off or alone, and because i thought i was going to break my knees because my body would collapse when racing my boyfriend to the car. I was put on multiple anti-depressants over the course of 10 months- if anything it just made me feel worse.

It wasn't until after high-school that I was even referred to neurologist. I did a sleep study at the hospital and had a take home MSLT- i looked like the predator- they thought maybe id continue the next two days regularly, i didnt leave my house, and the results were inconclusive. I was referred my current doctor and had an overnight study done.
The overnight sleep study required a great deal of preperation- I had to cut down on the massive amount of caffiene I had been drinking; stop eating all processed meats; take sleep pills and maintain 8 hours of sleep every night; and try to quit smoking.
Not easy.
I was diagnosed with narcolepsy and cataplexy- they didnt need to even keep me for the entire test (but they did) as the results of my first two naps showed me in REM cycles in less than a minute. It was a big win for me- being able to dream within 20 seconds! yay!

So I took provigil for a year and a half and it wore off- I started taking 250 mg of nuvigil and after a while it too was not as strong.
I took xyrem against my wishes- the one time I eat anything all day is after work around 9 or 10 pm and you cant eat 2 hours before taking it and you have to sleep 8 hours so i was forced to either go all day without eating almost anything or wake up later than 8 am and be late for school ( which I was in, but am no longer doing)
I currently take 250mg of Nuvigil and some amount of Concerta- which i do not care for personally as I now eat less than nothing most days.

I never really realized how lucky I was to have such understanding friends and family through all of this- my father was the only family member who thought my cataplexy was me being overdramatic, and then one day I fell down the stairs and i think he got the idea.
However recently I have noticed that my great friendships arent so great anymore, and that being awake is a lot more important to me because I need some of these people in my life so I dont spiral into a horrible depression-- my best answer so far is the re-explanation of its sometimes out of my control- and I cant stand being left out of something because i was asleep when someone asked or I wasnt asked because they assumed i didnt want to do it because it involved being outdoors for a long period of time or standing or just being awake.

I often times feel as though I have nothing to offer- I mean I have given myself enough fake confidence to think im awesome, but at the same time I have major fears and doubts as to whether or not ill ever be able to go to school, and if i do what for? my current job requires me to be on my feet and active which is great and I can do it- but i dont want to do it forever. Ive convinced myself that I cannot have any medical degree as quite a few people I have spoken with at local junior colleges told me that you cant hold a medical degree and have a chronic illness, and to me it seems dangerous to be in charge of someone else when I am not always in control of myself.
I also have a lot of trouble reading or staying awake when sitting at a desk-
The worst part sometimes is the realization of what I cant do. I dont think ill ever be a mom because I dont want anyone to go through what I have, and on top of that what happens when I am too tired to take care of a child- how would I even go 9 months without medicine because im sure that its not extremely healthy to be heavily dependant on basically speed while being pregnant.
Anyways thats about all ive got to say- dont know if anything I said would help anyone in anyway, but i guess it has made me feel a little better and a little worse at the same time- I like to think that I can help other people with almost any problem, and I try to, but helping myself is the last thing ill ever do.
ALadyBeast ALadyBeast
22-25, F
6 Responses Jan 9, 2013

Hi, I just read your message. I have lived with Narcolepsy/cataplexy/sleep paralysis/ night time hallucinations (visual, olfactory, and auditory), restless legs, etc., etc. I am 75 and have had problems since I was 10. Nothing you said surprises me. I didn't even know what was wrong until I was 26. Most meds prescribed just made life worse. It is an embarrassing, frightening, difficult chronic problem to have.

For me, the answer has been Prozac. I take the generic fluoxetine ... 40 mg. once a day with no side effects. When first on fluoxetine, I noticed my sleep pattern improved at night and I wasn't as tired in the mornings.
I have been on this dosage since in the 1990's. The longer I have been on the fluoxetine, the more normal my life has become. My cataplexsy is almost completely controlled. I still have tired times, but they are not so extreme and dangerous as in the past. I find that a healthy diet helps, and that certain foods triggered my muscle weakness. I avoid things that are aged like cheese and wine. I'm more prone to sleep paralysis when I don't stick to a whole and natural diet ... It is more difficult to know what is in a packaged food versus eating fresh foods.

I have read in recent years that fluoxetine will work for people with cataplexy ... It was originally for depression. At first I didn't want to take it, because I wasn't depressed. But now I consider it to be a real miracle in my life. Maybe it would work for you too.

Fluoxetine/prozac is a seritonen re-uptake inhibitor. In my case, especially when I had sleep paralysis, my brain was screaming at my body to move, but it wouldn't. In our nervous system there is an area between the nerve cells called the synapse area. Seritonen is a neuro chemical. Maybe I just didn't have enough of it between my cells at times to transfer the message from brain to body. (That's probably not a super medical explanation) I really don't know many narcoleptics, and of those I know, I am the only one taking fluoxetine to control my chronic nervous system disorder. Since I have had so much success with it, I just felt I should mention it to you.

By the way, my children do not have my health problem.

msleepy2

Hey there Aladtbeast,
I'm Willow, I've had narcolepsy and cataplexy for 8 years. I'm 25, all I can say is dido! I experience almost everything you where describing. Except, I don't like Provigil? Is there anything else you would suggest? And I don't take anything for the cataplexy? Fortunately I have an awesome boyfriend that helps me with everything! If it wasn't for him, I dont know what I'd do? I'd love to get to know more people with narcolepsy and cataplexy cause you know what we deal with everyday! Thanks for listening. :)

I recently switched doctors and am seeing the head of women's sleep disorders at a well known hospital- best decision of my life!
I took xyrem more or less against my will and hated it, but it worked a little to help the fact that I laugh about everything-
I'm currently taking 20mg adderall xr
In the morning 10 mg adderall ( not xr which is time release) in the afternoon when I am tired and 50mg of a mild antidepressant called Clomipromine- I barely fall over- It has been the best thing I have ever taken and I am ecstatic! Except if you are anything like me and have a small bladder- you may find yourself peeing your pants like you did before the narcolepsy really hit... But that's only happens a handful of times :/ hahaha but I'd rather pee my pants laughing than lose control and have my neck bent back so I have trouble breathing and start crying ! Hope this helps you and hope you find this useful!

Hi ALadyBeast

Thank you for sharing your story. I am in that should or should not have baby place right now. I would not take my meds during that time and I have no idea if I will be able to keep my job (I think not!)? My worst fear is that I would sleep so much during the pregnancy that I would hardly remember it afterwards. I have been saving money in case I become pregnant and have to stop working. I was told that Narcolepsy is not something my family has and I should not be worried about giving it to a child? any thoughts on that??

Also to @mymeshelle Wow, you should really get some help. It can be dangerous if you keep going like that.

Hugs
NaNa

Sorry for such a late reply nana! There's no evidence that it is hereditary, and it is against ADA for your job to fire you for being pregnant and having a disability- I know some women continue to take their meds, but I fear what it may do to the child- I think you should speak with a few neuros and get their opinions on it. I always assumed I would be hospitalized for that time- I can't stay awake and won't eat :/ I know this isn't probably super helpful but it's all based on how bad your n is and what medication you're taking to control it.

you are just like me :)

except the being preg part :)

I have been told after one sleep study that I have borderline narcolepsy. I have a 14 month old and I made it somehow through my whole pregnancy without medication, and maintaining a full time class load. I now work part time, attend school 3 quarter time, and I also am in the U.S Navy Reserves. My major is nursing and I'm doing my second sleep study is soon. I'm hoping that provigil (what they want to give me) will help but due to your post, I am now scared that it will be ineffective after a period of time and it will be a nightmare (no pun intended) cycle.

That is awesome for you! I would definitely suggest trying the provigil- I think my case may be a little worse than others, and my dependency for medication seems to become greater and greater everyday- I do know a lot of people take provigil for quite a long time especially with a mild case! If you have to change medications it probably won't be for a while!! You will know when the effects of the medication seem to wear off you will be sluggish and feel as though there is no differnce between taking the medicine and not taking it!

I have narcolepsy that i have not gone in to be treated because i became pregnant... Im 35 now and it getting worse... i think u might be worse than i... I only nod off when im driving or dental assisting.. what i do for work... but i almost fell on a patient today so im worried!!

I'm sorry, when were you diagnosed? I defiantly suggest seeing someone as you don't want to fall asleep driving or doing dental work! A lot of people who already have careers, in my opinion, and are later diagnosed have an advantage- i wouldn't be worried outside of that- as this is a manageable disease-- especially if its mild- which is sounds to be if you hve been able to maintain your life til now. I have had problems since I was younger with just being awake socially- and i think I've had to take naps at every job I've had so far.. Good luck!