My name is Dominique, I was diagnosed with narcolepsy this past April after a 11 year battle in trying to understand what is wrong with me. All of my symptoms started when I was 8, after I went into super early puberty. It started with migraines that made me black out and run into things, or fall down steps. I've been admitted to Dupont, and CHOP at least 4-5 times. When the doctors first diagnosed my migraines they suggested a stress therapy approach with mild antidepressants to control the migraines. This was all after they ran every possible test they could, cancer week was probably the worst week of my life and I was only 8. That helped for awhile, but I still had extreme trouble falling asleep and staying asleep at night and I was always extremely tired during the day. I had my first cataplectic event in a grocery store parking lot, I got hit by a car during it. At the time, everyone associated my cataplexy with a severe anxiety problem that I've had since birth. My mom decided it would be better to leave me off of the medication because she didn't want me to develop a dependancy. I continued to have problems sleeping, migraines, severe anxiety and mild depression for the next 4 years. By the time I was 13 I had already had at least 10 cataplectic events, the worst of which was in a mall when I almost broke my jaw. The doctors tested me for everything they could possibly think of. I felt like a lab rat, and at times like I was crazy because everyone insisted that it was in my head and nothing was wrong with me. I struggled through high school, falling asleep in ALL of my classes. I even went to CHOP 3 times a year because at this point they were convinced my "fainting spells" were due to a sodium deficiency and orthostatic hypotension. My sleeping problems and migraines were all side affects of my depression and anxiety. I had cataplectic events every day while I was in the shower for 6 months. My doctor was very insistent that I see a counselor to work on my anxiety and depression to try to improve my sleep. I was put on Lexipro for two years before I was fed up with not being able to feel anything. I wasn't even directed to the idea of narcolepsy until this March. The morning after my boyfriend at the time's birthday party, I woke up to get a drink and I fainted. I recovered from that episode, and fainted 5 minutes later. In the whole 10 years I've struggled with episodes like this, I had never had 2 in one day let alone 2 in the same hour. Luckily I saw my Great Aunt later that day, who also has narcolepsy with cataplexy. I explained to her what had happened because she's a physicians assistant, and she led me along the not so long battle to diagnose my narcolepsy. Since being diagnosed, I am on 400 mg provigil a day, along with 30 mg of adderall. I've never felt so alone in my life. No one in my family, or group of friends can understand why I can't sleep for days at a time, but then some days I fall asleep mid conversation. The medication is hit or miss, some days it helps, but most days it doesn't. I still have cataplectic events all the time, they are just more limited to my hands and feet. I had no intention on actually posting anything onto here, I was going to try to just skim through other articles and hope it helped, but I honestly just needed to vent. I haven't talked to anyone that understands what it's like to be where I am. I get frustrated every day. Some days I can't get out of bed and I can't explain to any one why. I'm drained, emotionally, physically and mentally. I'm at the end of my rope.
Hey Dominique.
I was also misdiagnosed many times before the doctors got it right. It's interesting how they jump to all these conclusion - especially when narcolepsy is not that uncommon. I wanted to remind you, you are in control. Although it mat feel like we're helpless and alone with this condition, we don't have to be. All we have to do is make the choice not to be. The power within us is great and our reality is what we make it. Try looking in the mirror and telling yourself, "I can handle this. Today will not be ruined by my condition. I love you." It may feel really stupid, but it has helped me so much. We are truly capable of anything, but we have to ask ourselves for it first. And when we do, we can come to rely on ourselves and wont feel so alone. Hey and don't forget there are things we can do to manage this (i.e. diet, exercise, avoiding caffeine)! I'm glad you joined this group and I hope you realize you are not alone and can come to rely on yourself to make the best out of every day!
Best Wishes,
Correna
Hey Dominique
I am also 19 and I have narcolepsy with cataplexy. I was diagnosed with narcolepsy when I was 12 although my symptoms started when I was 10. Cataplexy is very scary and can be a huge pain. I also take 400mg of provigil and I take vivactil twice a day to help me sleep at night and to help with my cataplexy. Make sure you take your medications at the same time every day. Its very important to make everyday a routine. Make sure you get as least 8 hours of sleep every day and take a few 30 minute naps throughout the day.
What triggers your cataplexy? It's usually triggered by emotion, for example I have attacks when I laugh. I'm just curious because you have attacks in the shower.
If you ever want to talk about ANYTHING just let me know. I would gladly talk to you about anything with narcolepsy or just even life. I know what it's like to have people that don't understand what you're going through. My "friends" think my cataplexy is hilarious and they take pictures of me laying on the floor motionless. It hurts, and it's embarrassing. I've never talked to anyone who has cataplexy.
Thank you both so much. It really does help to know that other people struggle with the same things I do daily. I'd be more than willing to talk about my cataplexy with you. My trigger is anxiety, if it gets too high I go right out. And even when it isn't that high I have attacks in my hands a lot. Finding a routine is difficult for me because of my job. I don't have normal hours and being able to have a set routine everyday with what I do isn't really possible. Both my friends and my family make jokes out of my cataplexy and narcolepsy but that's not the part that bothers me. I get more upset by them saying it isn't as hard as I make it, and I'm just being lazy. Or there's no way I could be as tired as I say I am.
Hi Dominique. I was diagnosed with Narcolepsy at the age of 18, right when I began college. It was a MAJOR struggle. I have all of the symptoms. Cataplexy, hypnagogic hallucinations, sleep paralysis and ofcourse the chronic drowsiness.My cataplexy triggers the most when I'm angry, sometimes when I'm excited and other times when I'm sad. I felt like I had no control. I was so overwhelmed. I felt like my life was slipping away because of my inability to stay awake. I am speaking in past tense because I now have a significant amount of control and YOU CAN TOO. The answer is VITAMINS. I take Niacin(Flush-Free), Boron, B-6, CoQ-10, Royal Jelly, Ginkgo Biloba, Calcium and Lecithin. I only take 250mg of Nuvigil when I feel I need it. I don't trust pharmaceutical drugs. When I was diagnosed 5 years ago, the ratings of my sleep study were far above the normal stats needed in order to diagnose. I have a severe case of Narcolepsy w/all the symptoms and the main thing that saved me is VITAMINS. I am able to drive short distances without feeling drowsy and I just graduated from college. Don't let Narcolepsy take away who you are. You have it, it doesn't have you. Try the regimen. STAY POSITIVE. God Bless.
My cataplexy is triggered by stress and anxiety. It doesn't help much that I have an anxiety disorder. I go to see a new neurologist at the end of August. Some day's the medication makes me shake so bad I can't even type, or write without getting aggravated. I'm not sure the vitamin regiment will work for me, but I'm definitely willing to try anything at this point. I'm an EMT, so I work three back to back 12 hour shifts a week. It ends up working out pretty well, cause I get four days to recover, but with being an EMT I can't regulate my schedule the way I need to I can't tell my dispatcher that I'm unavailable for the CPR in progress cause it's my scheduled nap time. From what I understand I have a really severe case as well. I just hope that some time soon, my medications can be regulated so that I can get on with normal life.
Dominique,
This almost brings tears to my eyes. I now realize how lucky I have been. I am only 15 and been struggling with Cataplectic Narcolepsy for a couple years. For a long time, I didn't know what was wrong with me or how to explain it. I told my mom I was having seizures when I laughed. After that it was test after test, until finally my mother finally diagnosed me herself. She saw the TrueLife episode "I have Narcolepsy" and we put the pieces together and went to a specialists. Every since then I have only been put on Concerta which is a nightmare. It makes me irritable and angry. I actually started cutting myself, and thought about suicide. I didn't realize what was happening before my eyes until one of my friends finally confronted me. It takes so long for me to get into the sleep doctor that I am still taking Concerta at a smaller dosage. It is amazing to me to read other's stories because nobody not even my bestest of friends understand what I am going through. I am a very bright child, and it being my first year of High School I am struggling. My school is somewhat working with me on my condition but none of them REALLY understand what I'm going through. Although a lot of sources say to avoid caffeine, my sleep doctor said a little bit here and there throughout the day will help, and it has. I am just so worried about my future, I am aiming for a 4.0+ GPA and to get into a very good college. But, some days I feel like I'll never get there simply because nobody understands. I haven't severely injured myself due to cataplexay YET but I worry about it everyday. My friends also make a joke of my cataplexay. But, I'm so glad I stumbled upon this post. If any of you want to talk I'd love to!
P.S. Can you talk while having episodes? People I have seen (on the internet) sit there and have a conversation during an episode. I, however cannot.
My heart goes out to each and every one of you....I have come to believe my narcolepsy began when I was in high school too as I look back on my life....my school nurse used to let me take naps during my last year of high school...but I went on went on to college, graduated and pursued a career eventually ending up in law enforcement..In my mind, I always thought I was no different from others....EVERYONE must be dealing with the same bouts of such as me....so I never really mentioned it to others except for one time in my early 30s...and then my remedy was to go work out to try and push thru it although it was torture for me that day....It would be years yet before it dawned on me that I was narcoleptic....
I was brought up in family where no one complained about their ills and now worked in an environment much the same....everyone was tuff and steeped in denial about any weakness on their part.
It took driving home one night and falling home asleep at the wheel for my fatigue to stand out to me....that car rolled over on the highway at 60mph and spun quite a ways before it came to a stand still....it nearly killed me.....no other cars were involved thank God. Many years and doctors were involved in my care and rehabilitation after that and tested me for many things in attempts to determine the source of my continued fatigue level with negative results and when I finally suggested narcolepsy I was laughed at....with.."No, Marietta, You don't want that....the treatment is worse than the condition." And the subject was dropped. At this point, I was convinced I had narcolepsy, and later went back to my managing physician with the ruse that I thought perhaps I had sleep apnea and that was the cause of my continuing fatigue ....still believing I had narcolepsy but knowing this would get me my sleep study.
The results of the sleep study confirmed I had severe narcolepsy...and it was compounded by cataplexy and shortly thereafter I had a full cataplectic event...to the ground.....prior to that I had struggled for years with holding my head up and keeping my eyes open and standing tall....for me my trigger is stress....
For a number of years I was on a rather large dose of Dexedrine and it helped but then I began to get blisters in my moth and ears constantly and stopped taking it....Provigil and Nuvigil do not seem to help......
As I have gotten older, the narcolepsy and cataplexy symptoms appear to be diminishing if that helps any of you....I do not take meds now although there are days I do wish there were something available to me....but that is life for us my friends.....and yes, no one who is NOT in our shoes seldom understands us.....they do not know the burdens we face on a daily basis with our chronic fatigue....and how it interferes with our lives....but there are others out there just like us, and we can be there for one another and know we are not alone in this world.....God Bless
My names Stacey and I live in Australia (hence the username lol). I'm 26 and I've had Narcolepsy and cataplexy since I was about 16. My Cataplexy fits are from laughter and yes I've had the same problem with friends thinking im a party trick. I fell asleep in my end of year exams in my final year at high school too. I have found that when I am eating well and exercising regularly I manage my symptoms better. I'm proactive in monitoring content on the Internet about narcolepsy (in fact that's how I found this group) and I'm trying to stay abreast of any research or studies etc that are being done all over the world. I'm also part of a narcolepsy support group on Facebook and have recently met up with other people suffering from N and C which has been comforting. We often talk about how we can improve awareness of N because just like yourself, a lot of people have been through such a battle to even be diagnosed correctly. I believe the best way we can help ourselves is to band together. Not only because we can support one another by actually have some understanding of each others situation but also because I think it's important that we learn from one another's experiences and be proactive in trying to make our lives better. I feel like doctors are often out of touch - maybe because they have become somewhat 'used to' dealing with illness. They often see there job as simply to diagnose and prescribe and aren't really all that interested in actually improving the quality of our lives. The way i see it, we have to take control of our own destiny and fight for rights to a "normal" life. My aim is to try and form alliances with as many Narcs as possible so we can be power in numbers and a force that cant be ignored. Are you all in America? I am coming to the narcolepsy conference in Atlanta in October this year - will any of you be attending? We are working at trying to make Xyrem legal in Australia because we have heard good things about it - can any of you report? I would love to learn what people are doing in other countries and how effective treatments are. Anyway better finish up here - turned out to be a bit of an essay! (Sorry) Please add me or 'support' or whatever it is you have to do on this site to become friends :)
I am from America, however I don’t live near Atlanta and I’ll be back at college so I won’t be able to attend the conference. I’ve tried Xyrem and I found that it actually didn’t work very well for me. I didn’t like the whole waking up in the middle of the night to take the second dose thing. I actually missed the alarm almost every night, so when I woke up naturally like an hour and a half after my alarm went off I was taking the dose late. Then when I woke up for good it still had the drowsy effect on me, and I would fall asleep at school and stuff. It pissed me off haha. Or I just didn’t take the second dose at all so I wouldn’t be tired at school, but that wasn’t good either. I also found that my cataplexy got worse. I have heard you don’t see results from Xyrem instantly, and that it takes awhile for things to improve. I guess I just got impatient, so I switched back to my old medication. From what I’ve read though Xyrem really works, so if your willing to risk it, are patient enough to wait for the results, and have access to the medication then I would definitely go for it. I hope you get it legal in Australia so you can have the chance to try it out. It’s probably hard to get it to Australia because there is only one manufacturer in America that makes it. Insurance is a pain in the butt with it too because of that. Everything has to be hard right? lol