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Symptoms Of Narcolepsy?


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#1 Cyl5306

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Posted 08 December 2013 - 05:34 PM

I was wondering if anyone on here can tell me if they think these symptoms are typical symptoms of narcolepsy? I've been having a lot of medical problems the past few months (since August) and have recently been going to the doctors to figure out what's wrong. The biggest issue is the extreme exhaustion every single day. I usually have to take naps throughout the day to stay somewhat functional. I had these chest pains and stomach pains as well.. from idk what, but the medicine the ER gave me had made that pretty much go away. My focus/concentration is horrible. I've been getting these weird headaches as well. I've felt very shaky, and most times it's pretty visible shaking. As well as dizziness a lot. I really thought at first it was mono or thyroid disease, but all of those tests came back negative. My echocardiogram, EKG, chest X-rays, and all the blood tests they've done have come back negative or completely fine. The reason I'm wondering if I should get tested for narcolepsy is because I'm getting more symptoms and some of them are very odd. The symptoms I've mentioned we're ones that started first and were a red flag something's not right. The exhaustion/sleepiness is getting to the point I can barely leave my house, I can't really work, and I've dropped most of my classes because I can't walk around very much. My knees have been giving way a lot lately, making me collapse. My muscles have been acting weird that make me collapse, and they kinda shut down sometimes. Other times I kind of stumble over myself and I get really confused and almost delirious? What's scaring me though are the symptoms dealing with my sleep. I can't ever sleep for 8 hours straight at night, it's always for four or five hours, wake up, sleep for a few more hours, and so on. I have the absolute hardest time waking up, and usually when I try to wake up, I'm not really awake. It's almost as if I can't move, I'm still dreaming, but I'm still kind of awake. It's odd. I also have extremely vivid nightmares every single time I fall asleep, whether it's at night time or just a nap. Finally, the worst part (besides the EDS) are these weird "events" that happen. Almost like hallucinations I suppose? I either think something happened, and it didn't, or vice versa. I can't distinguish what's my dreams and what's reality, and it's happening A LOT and it's scary. I'm only 20 years old, and I wouldn't have come to think I might have Narcolepsy, but my half sister has it and all of my blood tests and everything are normal. But I KNOW something isn't right. Sorry for the long post guys!

#2 Hank

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Posted 08 December 2013 - 07:01 PM

You have described your symptoms very well and they certainly fit the picture for Narcolepsy with Cataplexy. The fact that you have a half-sibling with Narcolepsy is a red flag.

 

Find a well qualified Sleep Medicine Specialist- usually a Neurologist who is fellowship trained in Sleep Medicine. Pulmonologists tend to focus on Apnea. Neurologists generally don't know enough about sleep.

 

The standard is a Ploysomnogram (PSG) followed by a Multiple Sleep Latency Test (MSLT). After that, you should know for sure.

 

I hope you get some relief soon. It will be easier to manage than it is now.



#3 Cyl5306

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Posted 08 December 2013 - 07:29 PM

Thanks, hopefully I get it figured out! I just have a feeling that that's what it is, but I don't want to do a lot of research on it and convince myself I have it yet. Some people are already making me feel like a hypochondriac and saying I just need to stop being lazy or eat better. They really have no idea. I just wanted to get an opinion because if I tell my family or doctor of these symptoms the past few weeks, I don't want to sound crazy!

#4 ruthie s.

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Posted 09 December 2013 - 08:13 AM

I am newly diagnosed w/ Narc. after 20 yrs of excessive sleepiness. .....so I'm still trying to figure it all out too. But I get several different "types" of headaches at misc. points as well - and most profoundly, a particularly "special" type of headache following a few days of incessant consecutive napping (I call it binge sleeping) which always accompanies sea-sickness in those one or two days trying to ramp out of it with adderall. This happened for about three years, like clockwork. Now that I am binge sleeping MORE, I get less of that coming out of it - but do get random bouts of nausea when awake some days, and now also once a month (give or take) I experience an all day shivering feeling + sensation of starving yet can't eat-!?

#5 ABitColtish

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Posted 14 December 2013 - 10:14 PM

Thanks, hopefully I get it figured out! I just have a feeling that that's what it is, but I don't want to do a lot of research on it and convince myself I have it yet. Some people are already making me feel like a hypochondriac and saying I just need to stop being lazy or eat better. They really have no idea. I just wanted to get an opinion because if I tell my family or doctor of these symptoms the past few weeks, I don't want to sound crazy!

In response to the whole "being 20 years old," it seems that (someone may correct me on this if they'd like) the onset of the symptoms of narcolepsy most often occurs between the ages of 15 and 30. At least, that's what I've read. I've always been a drowsy kid, but it really started to show by the time I was in high school (I am 19 now). However, I wasn't diagnosed until August, after I spent some time with a family friend, who suggested that maybe narcolepsy was the cause of my ESD. She was the first one to ever mention it; everyone else just complained about me being tired, or asked why I couldn't function like normal people. It was and still is really hurtful when people blame your behavior on your willpower, without consideration for a condition that you can't really control.

 

I think that teens and twenty-somethings are especially not taken seriously, because society expects them to be lazy, unorganized and to have poor nutritional habits in the first place. I am currently studying at really rigorous college, and while ESD is the only problem I usually have with N (which can be corrected with my prescribed pills), extreme sleep deprivation from studying bumps my condition up to the MAX. I'm talking daytime hallucinations, severe ADD/ADHD symptoms, anxiety, depression, headaches and nausea, minor injuries that come from Lord knows where, etc. However, because I'm a college student, adults think that it's typical for me to be sleep deprived. People don't understand how much more deprived I am with the factor of N, nor just how difficult it is to cope with; I saw my advisor a few weeks ago to discuss my spring semester courses, and when I told him that I was really exhausted, he said that I just had to do all my assignments and go to all my classes, and I would be just fine.

Like, what?

My problem was that I'd been trying to do just that. I don't even party, and there is no nightlife in this tiny, tiny town; I just have a crushing workload, and it is draining me.

 

Even with my diagnosis, and after fully explaining my condition to my friends and family, they all suggest that I not stress so much, that I should just sleep more, that I should practice time management, and a number of other self-help suggestions. My mom still constantly asks why she sees some of my friends posting on Facebook pictures of them partying or doing something fun while I'm one all-nighter away from getting carrie out in a stretcher. She doesn't consider that I have other friends who are stressed over an impossible workload, or that those partying friends don't have to deal with ADHD, anxiety, or other collateral symptoms of narcolepsy/extreme sleep deprivation.

 

If you feel something is wrong with your body, research it. And try not to feel bad about being so worried. One of my biggest fears that I've also had to struggle with is that I might be a hypochondriac. There were so many issues with my body that I didn't fully understand and couldn't control, and it didn't help that people kept saying that it was just typical teenager life. Obviously, it wasn't. It started with researching narcolepsy; after tests in a sleep lab, I came out as positive. This semester, I looked up ADHD and anxiety; I realized that I had a lot of the symptoms, and an online test even said I have moderate ADHD (severe when I spend a month sleeping 4hrs/night). Of course, I need to get these officially checked out by a doctor, but at least I know there is a good possibility, which no one can argue.

 

I'd also like to mention that, while consulting my doctor about the possibility of narcolepsy, my mom asked if he could also see if I had depression (I was kinda like, "Well, no *BEEP*." but didn't say anything). She had never considered that I might have depression, until we got in an argument over my academics at my grandmother's house, and my grandmother suggested the possibility. He confirmed that I had at least mild depression, but I already knew. I had severe depression and suicidal thoughts at the age of 13, and though I've survived and been much happier since, I know it's never gone away. The point I'm trying to make is that you probably know your physical and mental state best. If something's wrong, check it out; find a good doctor and hear what they have to say, because those close to you are not experts on the condition nor on the inner workings of your mind and body. My mom is the person who knows me best by far, and even after gushing evidence of my lack of self-confidence, it took her 6 or 7 years to even consider that I might have depression.

 

And that's kind of the issue with conditions/disorders and diagnosing; our culture often stresses that "Life is tough. Get over it." without holding any sympathy for anyone who might be at an uncontrollable disadvantage to functioning at a "normal" level. When I was a preteen coping with academic stress (yes, even then) and hormonal changes, my parents always said that feeling sorry for myself wasn't going to help my productivity at all, and that life is only going to get harder so I may as well get used to it. You learn to hide your vulnerability, grit your teeth and keep pushing on, and while this makes you resilient in a positive way, there is only much you can handle. Also, it saves a lot of unnecessary work/effort and emotional/psychological insecurity by just asking for help and getting it.

Sorry this was long. I hope it helps, and that everything turns out alright for you. :)



#6 Hank

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Posted 15 December 2013 - 10:02 AM

Well said ABitColtish. Some of your descriptions are exactly my experience but I have never been able to describe it as clearly as you. Thanks.  



#7 Cyl5306

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Posted 15 December 2013 - 01:04 PM

Thanks ABitColtish! I know exactly what you mean about the relatives and other people suggesting you're just lazy or need to eat better. Luckily my older sister understands, and some of my close friends and family can obviously see something isn't right anymore. I've had a long history of medical problems so I know to keep an open mind, and my doctor is wonderful. I saw her on Friday and I told her about my new symptoms and about my sister having N. She says it would make a lot if sense if I have N or a different sleep disorder, so she's making me go get an EEG and see a Neurologist. Is it weird for me to say I'm excited to go see the doctor to finally get some answers? Also, did anyone else get an EEG test done? Did your results come out normal or abnormal?