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Does this happen to anyone with narcolepsy?


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Hi,

My two different psychiatrists both think that my symptoms sound like narcolepsy, but I was wondering if anyone here who actually has it could tell me if they experience this particular thing:

All of a sudden, out of absolutely nowhere, I could be doing nothing, not even talking to anyone, I will get this overwhelming feeling like all of my energy is just gone. It's a deflated feeling, like somehow all of my energy got drained out somehow. It makes me feel really REALLY depressed, lonely, self-conscious, and verrry sleepy. All I want to do when it happens is go to sleep.

This has happened since I was really little, and never understood it until I was told that I probably have a sleep disorder. After starting Adderall, this happened a lot less often than it used to, too. It would happen a lot during school, which made me think it had something to do with anxiety or overworking my brain or something.

I also have a lot of sleep paralysis and lucid dreaming that almost immediately turns into sleep paralysis, because I get really scared when I realize I know I'm dreaming... I can't control it like some people can. I'm just there, in my dream, having to experience everything my sleeping mind is making up... it's creepy, I'm forced to continue the same dream I was having before I woke up inside of it, but now I just know I'm dreaming... wow sorry that just got complicated and confusing!

Anyways, does anyone have that overwhelming/deflated/sleepy feeling? I'm just curious if it has to do with possible narcolepsy or maybe it's just me being strange!

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That is very typical for someone with Narcolepsy. I can be "fine" one minute and totally zapped the next. I have an overwhelming need to sleep right then. The adderall is a stimulant, so it makes perfect sense that you have gotten somewhat better, but stimulants only last for so long and we still have our ups and downs during the day.

I totally understand about the SP and lucid dreaming. It didn't confuse me at all, but I guess maybe because I experience the same types of things.

You really should get a sleep study. Find a doctor who specializes in sleep medicine and also find out if he/she has ANY experience with Narcolepsy. One thing that will really help before you see your doctor is to keep a log. For a week, write down when you get the zapped feeling, how many times per week/day you get the SP and lucid dreaming. When you go to bed, get up, etc. This will help you also determine if your zapped periods follow a pattern. If so, you may be able to alter you med schedule to avoid some of this, schedule naps for that time of day or at least figure out when you should not be driving!

At least your pdocs have thought of Narcolepsy. I took me 20 years and several different ones to even find one who thougth I may have sleep issues. He figured it was sleep apnea, but at least I got into a good sleep doc. Good luck. Feel free to ask me any other questions you may have about Narcolepsy. Since my diagnois I think I have a degree from Google University on Sleep. ;)

As a rule I only check this site a few times a week because the sleep forums aren't that active, but I check more often if there is an recent thread or if I've offered to answer questions.

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  • 3 weeks later...

Thanks for replying!! I don't check the boards here very often either.. mainly because I forget that I post something, and I usually don't get many responses once I do. My doctors have been trying to get me to go to a sleep study for some time now, but my family's insurance has a $5000 dollar deductible to reach before we get anything paid for, and we are nowhere near it right now. I'm still in college, so I don't have much money to spend on a sleep study myself, as it would be a few thousand dollars ;) ! My parents don't think there is anything wrong with me (even though my sleeping problems have been getting progressively worse since high school), so it's been hard to convince them to spend money on a study.

That said, I do have a question that you might be able to help me with! I know you aren't a doctor, but like you said, you've had your own experiences with Narcolepsy, and have researched it to no end! Plus, I don't know when the next time I'm going to be seeing my own doctors, so it would be great to get the opinion of someone who knows a lot about Narcolepsy.

This is something that happens to me at times that I've been wondering about lately:

This happens more often when I haven't taken my Adderall. I start staring off into space, and I think about absolutely nothing. The best way to describe it is kind of like sleeping with my eyes open. If I'm trying to concentrate and do something, I feel exhausted, but if I switch into staring mode, it's like I'm conserving energy.. or at least putting it to a halt. My body feels nice and relaxed, and I really don't have the desire to move. Even if I'm sitting on my bed, most of the time I'd rather stay staring off into space instead of using the energy it would take to snap out of it, slide under the covers, and doze off.

People can be talking to me when I'm doing this and it is literally like the words go in one ear and out the other.. I can hear them speaking and somewhere in the back of my mind I know they are saying words to me that I understand, but I just don't process them. I end up having to ask the person "what did you say?" a few times before I either give up or concentrate hard enough to think about what they're saying. Sometimes I'll just start throwing in a few "uh huh"s and "yeah"s so that it seems like I'm listening. Really, those are the easiest noises to produce... if grunting was a form of language, I'd do that instead. It's the same with TV... before I finally started Adderall, I noticed that I was just staring at the television program and not even watching it 2/3 of the time! I feel really hazy when I'm in this staring mode, like my head is in the clouds.

Does this sound at all like something that would happen to someone with Narcolepsy? It's one of the main reasons I started taking Adderall, because I thought it was my inattention getting out of control. But I've recently realized that it's really just not the same feeling than when I'm actually having trouble paying attention as a symptom of ADHD. Usually I space out and daydream like crazy and get really fidgety... with this staring thing, I don't think about anything and I get super relaxed.

Thanks for your help and let me know what you think!

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  • 2 weeks later...

Yep, this has happened to me also (outside my more insidious fatigue attacks due to my unrelated infection).

It feels as if I'm having a combined attack of sleep as well as cataplexy (both mild, of course). Or sort of like an absence seizure (at least from what I've heard of them). I already get what look like simple partial seizures (though my neurologist thinks that they aren't epileptic but are something called "convulsive syncope", a result of disorder of blood flow to the brain), so it's remotely possible, at least in my case, that there is an absence issue going on.

In any event, I'm absent-minded 24/7 pretty much.... but my Concerta has REALLY helped, God bless it... adding Mirapex to it has given me a one-two-three punch against the "absence" feelings, sleepiness, and AD/HD. (My pdoc thinks that the Mirapex is 'blocking the exits' for Concerta's active ingredient, methylphenidate, from leaving my body, and that is why it is helping. Otherwise, as per him and the manufacturer Mirapex is actually associated WITH drop attacks!!).

I can also compare the feeling y'all described as a brief bout of depression (I have some variant of mood disorder, officially BP2, but whatever it is, my mood can cycle VERY rapidly, leaving me in those brief depressive states for no damn reason at all). Of course, the same disorder can also leave me in equally brief happy and even hypomanic states*, so it's your call.

*Indiana is not a hypomanic state. And it's not all that happy, either.

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It sounds like you are describing "microsleeps". You are aware and your eyes are open, but your brain takes a little nap. I get them all the time. Have you ever thought you may not have ADHD at all, just an inability to concentrate because your brain shorts out for a little snooze? The adderal would help with that because it keeps you stimulated and your brain isn't as likely to take a nap.

I hate when my brain does that because I always lose part of the conversation and have to ask people to repeat themselves. I am in love with my TiVo because I can simply rewind if zone out, which I do quite often.

Is there any way you can have your doctor talk to your parents and tell them you truly NEED a sleep study? Another way to get one is to participate in clinical trials if there are any in your area. My sleep doc runs one of the best research clinics in our state, and they have trials all the time for things like restless leg or apnea. That would be one way to get a study done. Being tired all the time can come from sleep apnea too, and it's very dangerous if not treated. Maybe you could talk to your folks about THAT and tell them they surely don't want to risk you having a stroke or something if you stop breathing at night. They do realize you are tired, right? Try giving them some info from the net if you think it has any chance of helping.

Some sleep clinics will also take you on a "need" basis, but since you do have insurance, I doubt you'd meet the criteria. Don't give up and just keep pushing. Good luck.

And feel free to post any other questions you may have. As I said, I'm not a doctor, but I battle this and can at least share personal stories. I also visit talkaboutsleep a LOT. They have a TON of information on sleep disorders and the message boards are full of stuff that may help you realize some things you do are just part of having a sleep disorder. I know just hearing from others who struggle has helped me so much. I don't feel so alone and realize how much of my behavior is completely normal for someone with Narcolepsy.

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It sounds like you are describing "microsleeps". You are aware and your eyes are open, but your brain takes a little nap. I get them all the time. Have you ever thought you may not have ADHD at all, just an inability to concentrate because your brain shorts out for a little snooze? The adderal would help with that because it keeps you stimulated and your brain isn't as likely to take a nap.

Hmmm... It seems like "microsleeps" may be a legitimate concept. I experience something like that all the time. Well, not all the time but often. I don't think they happen to me when I'm doing something dangerous (like driving), but they happen occasionally when I'm at school. (I often have some catching up to do.) And when I get home, I could probably just sit there and stare at the (uniformly painted) wall for half an hour.

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. It seems like "microsleeps" may be a legitimate concept

Microsleeps are part of having Narcolepsy. It's well documented and something we suffer from all the time. People with sleep apnea or people who are sleep deprived can have them also.

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herrfous --

It's funny that you mention absence seizures, because for awhile, I was wondering if that was what was happening to me. All of our home movies when I was a toddler until preschool age (the tapes when my sister and I were elementary school age are damaged and don't work, sadly ;) ) show me constantly doing the whole staring off into space thing. I'll be engaged in some sort of activity and then I'll just stop and sort of freeze and stare straight ahead. Kind of creepy, like I was a little robot and someone was pressing the off button on the remote! During one of these episodes, I froze as I was walking across a room. Someone walked right into me and I didn't move a muscle, I'm surprised I didn't get knocked to the ground. I read awhile ago that it can be somewhat common for children to get absence seizures a lot, and they usually just go away as the child gets older.

I realize now that what's happening to me presently and what used to happen are pretty different. I'd be totally out of it in those home movies and seemed like I had no idea I had even gotten stuck in place. When I'm staring off into space now, I know it's happening, and when I snap out of it, I know that it happened and I know that someone was trying to talk to me, but I just couldn't process it.

I'm interested to know what kind of prescription would help me the most before I can get into a sleep study. I'm seeing my pdoc on the 7th specifically to change to something other than Adderall. It's not keeping me awake like it used to, and it makes me really crabby, irritated, and uptight. I hate it.. I used to be extremely laid back and much more interested in being social, and slowly the Adderall (and of course, my sleepiness) has switched me around. I just looked up what Mirapex was, it's for RLS, right? I also have that going for me, since as long as I can remember... my mom has it like crazy too. The Adderall, for some reason, keeps my RLS pretty tame... but I don't know what will happen if I switch to something else...

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crazycatnapper -

Thanks for getting back to me again!

At first, I thought the same.. that maybe what I thought was ADHD was really just me zoning out from being so tired. But, I've had all the symptoms since childhood, and the diagnosis wasn't based just on the "microsleeps" I was experiencing, so I'm pretty sure it's an accurate diagnosis. The microsleeps, along with the challenge of staying focused in college lectures (not to mention not having any study skills) is what finally made me talk to my pdoc about it. There are two different feelings of zoning out that I get... one is the type that is like a microsleep - I'm not thinking about anything, I'm just sitting there staring. The other kind is basically that I can't concentrate on just one thing... I'll be thinking about one thing and then switch to another without meaning to, then maybe I'll see something that makes me think about that.. and it just continues on and on, I can't help it. Plus, I also have the inattention and hyperactivity aspects of ADHD, not just inattention. I probably would have gotten in a lot less trouble in high school if I was taking something to control my impulsiveness ;)

Anyway, my doctor could talk to my parents, although it wouldn't change their minds much. I've looked for clinical trials, but the ones I've found are hard to fit into my schedule, and I'll be going back to school at the end of this month, so it's just complicated. And, sadly, about 2 years ago after I recovered from mono, I started snoring and waking up from my sleep gasping for air. I told my parents about it, and they weren't very concerned. I feel horrible writing that, because it sounds like they don't care about me. They do, but they feel that they're going to end up wasting 3000 dollars on a sleep study. They really don't think it's affecting my life, because I've made it this long dealing with it on my own and they don't know what it actually feels like to never be refreshed from a night's sleep. My mom thinks that I'm overreacting, because she also experiences sleep paralysis, so she thinks she knows how I feel (she is MUCH too active, alert, and on top of things to be anywhere near how I'm feeling). My dad just thinks my sleep schedule needs to be adjusted and I'll be fine (coming from the guy who falls asleep 97% of the time he is in front of a television screen). Neither of them can come up with an answer for why in the world I'm able and wanting to sleep 12+ hours straight (is that even a symptom of Narcolepsy? I have done close to 36 hours straight, I had two 1-hour breaks in between, only because I needed to use the bathroom and I had to decorate my roommate's bedroom door for her birthday).

I've given my parents plenty of information to read up on, including personal stories I found on the internet that I can relate to, but for some reason they just choose not to believe me. They know I'm tired, I've been constantly sleepy since high school. Back then, I would get called lazy and get in trouble (or be accused of being on drugs) for taking naps or sleeping in. I know that they can afford the study, they just don't want the extra cost to think about. Every time I bring up getting the study done, they make me feel guilty about it, which makes me stressed out and makes me doubt whether or not I really need a study done (I know that I do, my parents are just very manipulative).

I'm going to visit talkaboutsleep, maybe I can find something else to show my parents... althought, it probably would still not change their minds...

Here's two other questions I've got, if you have an thoughts on it --

When I close my eyes to go to sleep, I usually daydream to help me fall asleep, and about 30 seconds to a minute after closing my eyes, I'm not controlling the daydream anymore, yet I'm not really sleeping (usually what's going on in my mind isn't even what I started with as a daydream, and it's sort of like a dream, but also sort of just random images). I can usually open my eyes and make it stop, but I usually don't want to because I know it means I'm falling asleep. Could this be a sign that I'm going into REM sleep right away? I sometimes also feel my eyeballs moving like crazy under my eyelids when I go to sleep. I have to open my eyes during this because it's an uncomfortable feeling, and it sort of just wakes me up for some reason.

Also, I'm seeing my pdoc next week to switch off of Adderall, because it's been making me crabby and irritable, which I don't like. It also used to keep me awake better than it has been recently. What have you tried that has helped you with being less sleepy? This doctor already thinks Narcolepsy is possible, and he always wants my opinion when we talk about switching meds, so I thought it might be a good idea to have some background info on what sort of options there are.

Thanks again for your help!

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(Guest)Running Fox--

Yeah, Mirapex and Requip (the latter is now generic in the US!) are both approved for RLS (as well as the symptoms of parkinson's disease and related disoders).

Nonetheless, Mirapex's PI sheet does carry a precaution that "drop attacks" (by what they describe them as, they seem similar to those of narcolepsy): [link=http://www.rxlist.com/cgi/generic/prampex_wcp.htm'>http://www.rxlist.com/cgi/generic/prampex_wcp.htm"'>http://www.rxlist.com/cgi/generic/prampex_wcp.htm'>http://www.rxlist.com/cgi/generic/prampex_wcp.htm" target="_blank]http://www.rxlist.com/cgi/generic/prampex_wcp.htm'>http://www.rxlist.com/cgi/generic/prampex_wcp.htm[/link]

The same warning was also placed on the Requip (similar drug, also for RLS) PI sheet: [link=http://www.rxlist.com/cgi/generic/prampex_wcp.htm'>http://www.rxlist.com/cgi/generic/prampex_wcp.htm"'>http://www.rxlist.com/cgi/generic/prampex_wcp.htm'>http://www.rxlist.com/cgi/generic/prampex_wcp.htm" target="_blank]http://www.rxlist.com/cgi/generic/prampex_wcp.htm'>http://www.rxlist.com/cgi/generic/prampex_wcp.htm[/link]

Anyways, it may be more likely that your daytime sleepiness symptoms and the risk of getting a drop attack from them (due to insomnia resulting from RLS)... and that adding Mirapex could actually make you less prone to "drop"/"absence"/etc. type attacks. This is a good time to discuss the risks and benefits of Mirapex (and Requip) with a doctor.

Anyways, I had another microsleep...

I just got one of these "microsleep" events today, when I was lying in bed trying to take a nap since my fever had gotten the best of me today after I went running around to see my tdoc and then going grocery and hardware shopping...

I was semi-awake but had these really dream-like thoughts... you know, the almost psychotic-sounding kind... unfortunately, most were about accusations my mother 'would' put towards me and then me feeling physically violent... I knew I was thrashing in bed (maybe a manifestation of my dream's violent ideation/behavior intruding into real life) since my sheets were tangled around my feet and/or on the floor within 20 minutes.

Would be further interesting to see if anybody has managed to have bizarre REM sleep disorder behavior during these microsleeps (during which we narcoleptics normally stand still).

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  • 2 weeks later...

Sorry I didn't respond sooner. My motherboard on my laptop got fried and I'm borrowing time on another computer.

I don't want to sound bitchy, but if the studies are available, then you have to chose what is more important. In the short run, school is, but your overall health is for the rest of your life. You can always miss some classes or skip a semester. Easier said than done I realize, but if you can get honest answers and improve your quality of life, it will be worth it. Remember, your health is forever; school is temporary.

I'd talk to your parents about the gasping for air thing. Whether they want to face it or not, that can kill you. If they won't go for the expense, is there any way they could foot the bill and have you repay them? And in all honesty, if the docs find something seriously wrong with you, I doubt your parents are then going to be worried about the money. They are just going to want to get you treatment. Maybe they just don't want to face that you have a serious illness because it scares them. It's easier to just write it off.

It sounds like you are entering REM sleep right away. I experience the same thing. It's kind of freaky, huh? I think I'm awake and just daydreaming, but I'm not. I wasn't sure if I even slept in some of my naps during the MSLT because I thought I was doing the daydreaming thing, but the tests proved I was dreaming.

Because of my aneursym, I can't take regular stimulants, but Provigil works wonders for some people. They may not be able to Rx it for you though unless you are diagnosed with a sleep disorder or have tried everything else under the sun. I have lots of info about meds, but it's mostly for people diagnosed already. Sorry.

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No no, not bitchy at all.. I completely understand and I absolutely agree. My parents are just really hard on me and very controlling, so like you said, easier said than done. They're paying $30,000 dollars a year for me to go to school, and I can't take a semester off because I'm an education major, and I'll be kicked out of the college-which was hard enough to get into- if I drop out for a semester. I already have to take an extra semester of school because they changed their requirements for getting in when I was going to apply, so I had to take a whole semester of useless classes for a semester (but I did end up with a minor in psychology because of it ;) ) I dread this next school year being like the last one.. I constantly wanted to just drop out because I just did not have the stamina to do it all and I literally couldn't half the time, which was really bad because I had a really full, really important semester and that wore me down like no other.

They could definitely pay for this sleep study, they just don't want to. I already told them I would pay them back in full, whether I end up having a sleep problem or not, and then they start avoiding the topic until I bring it up agin. I don't know what their deals are, but imagine the stress that adds to life, not being able to communicate your problems with the people who are supposed to care about and for you, our conversations are constant circles because they're right and I'm wrong.

I just got my tonsils out for infection reasons, so I'm hoping that A. my sleep and breathing/asthma related problems will improve (I can't tell yet because I'm constantly on vicodin for the pain which makes me sleepy.. but I am breathing a hell of a lot better than before), and B. our insurance covered the surgery, because it was expensive. If they did, then it would push us past our deductible and the sleep study would be absolutely free. If not, then I still have some fighting to do. Oh, and if it turns out I have Narcolepsy... I'm pretty sure it will still be all about the money, at least for my mom. She doesn't like me taking medication (even though she forced me to take anti-depressants-prescribed by the doctor- in high school. Which, by the way I didn't need.. I needed control of my impulsiveness and thrill of doing... well, anything thrilling! But the meds were free because the doctor got samples, so I'm sure that's why she was fine with it), and doesn't think the symptoms of Narcolepsy are anything out of the ordinary (she claims she has them too.. and she's fine. So obviously she doesn't feel like I do..). So for her to be paying for me to get treated for it, would not be something she'd be happy about. When I mentioned the sleep apnea breathing thing, she just said that I would get the study done, and I wouldn't do the treatment for it because I wouldn't want to, and then it would be a huge waste of money! She has no idea what it's like to be so sleep all the time. I seriously cannot wait to have a salary and my own place to live for the rest of my life.

Yeah.. the REM sleep right away sort of annoys me.. I guess it's nice sometimes, because I know I'm drifting off, because I no longer have control, but because of the ADHD, I have really awesome daydreams, and sometimes I just want to continue them before I go to sleep!! So sometimes I have to stop my self from drifting off and try to remember where I left off.. haha, I am such a weirdo! I just got put on Vyvanse instead of Adderall, but haven't started it yet because of the whole tonsillectomy and not being able to swallow well thing.. but my pdoc actually said he would be willing to write me a prescription for Provigil if I felt I needed one if the Vyvanse wasn't helping. He understands the sleep study problem, and wants me to get one too, but he said that if I can't, he would be able to prescribe it if need be, so I guess that's a positive thing... except it would probably be really expensive, which, again, leads to problems here :)

You've been such a help, thank you so much for listening and helping me out so far... hopefully I'll know soon whether or not the insurance covered the tonsillectomy... I'm keeping my fingers crossed!!

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Have you tried having your doctor explain to you parents that Narcolepy is a very serious Neurological disease and it NEEDS to be treeated at all costs? I'm sure you have, but I just can't think of anything else to add. Just good luck to you. Keep fighting and maybe your parents will one day understand. And I think Provigil has a program that helps people with their meds. You may not qualify if you are still under your parents insurance, but it's worth looking into.

By the way, I don't know if I mentioned it or not, but my father doesn't believe I have narcolepsy. Even though my sleep specialist and neurologist confirmed it, he thinks it's just the "diagnosis of the day". He says it's depression because so many doctors said it was for all those years and the sleepy, unmotivated parts fit. He simply refuses to take my tests seriously. Therefore, I just don't have contact with him anymore. He's controlling too and I can't believe he won't trust real tests but will take what other doctors think as gospel even though there are no hard and fast "medical" tests for depression. Yes, I was tired and seemed like an atypically depressed person, but my moods were fine. I still laughed and loved to socialize. My docs overlooked that for 20 years. Probably because they didn't know what else to do. Luckily, one said I needed a sleep study and I followed through. Of course, I was working and had my own insurance, so I didn't have to rely on anyone else to "let" me do it.

Please keep us updated on your progress. Hopefully, you can get Provigil and it will help you.

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Having been a previous Provigil patient (now on Concerta, more potent on the AD/HD and it helps me almost equally with the narcolepsy issues, your sleep attacks will vary), I guess I just have to add that honestly, if Provigil helps (or will help), then so be it. I know people who swear by the stuff as an antidepressant (and a few pdocs who swear by prescribing it side by side with SSRIs).

Regardless of the cause of EDS, be it primary narcolepsy or depression and/or insomnia and/or RLS, it's still EDS (also note that Provigil is approved for other forms of EDS, such as that resulting from sleep apnea and working odd hours with the shift sleep/wake syndrome).

I'm not sure that Provigil will help with the other narcolepsy-related issues (such as REM disorders and cataplexy; my experience is that it very slightly helped, and that may have been a placebo effect or perhaps maybe relieving the EDS somehow helped out with the other symptoms, I honestly have no idea). There's so much wild, random, and bizarre speculation on how Provigil works that I'm not even going to start on how it might or might not be unique in treating narcolepsy.

But all I can say is that my own Provigil experience was positive - and to me, it didn't matter as much to the cause of my EDS (I never had a formal sleep study done, if I ever do in the future, it's probably going to be geared towards looking for unrelated nocturnal seizures -- having an MSLT would be moot anyways, as my pdoc believes me fully when I tell him I lapse directly into REM sleep during my sleep attacks), but rather the positive results of treatment, and I certainly hope you are able to get on Provigil and see positive results with it.

Also, crazycatnapper, I'm sorry to hear about your specific situation with respect to the aneurysm and being unable to take stimulants due to it. Having Marfan syndrome (or some related connective tissue disorder) myself, I'm technically prone to aortic dissection (basically an aneurysm that doesn't balloon but can be even more dangerous) and honestly should be watching my blood pressure and avoiding stims (and even aerobic exercise!). For now I've sodded these recommendations (my ultrasounds and normograms have been completely normal, and it's possible I might never have any involvement of major blood vessels).

..and I'm even sorrier that your pundit father chalked it all up to your depression (even if the medical treatment were to be the same!!!!). The fact that you're otherwise happy and in the habit of socializing should tell him otherwise (and honestly, it's what swayed my current medical care team away from a diagnosis of somatoform disorder to one of some sort of infection or other with respect to my current non-MI non-Marfan medical issues).

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  • 2 weeks later...

Have you tried having your doctor explain to you parents that Narcolepy is a very serious Neurological disease and it NEEDS to be treeated at all costs? I'm sure you have, but I just can't think of anything else to add. Just good luck to you. Keep fighting and maybe your parents will one day understand. And I think Provigil has a program that helps people with their meds. You may not qualify if you are still under your parents insurance, but it's worth looking into.

By the way, I don't know if I mentioned it or not, but my father doesn't believe I have narcolepsy. Even though my sleep specialist and neurologist confirmed it, he thinks it's just the "diagnosis of the day". He says it's depression because so many doctors said it was for all those years and the sleepy, unmotivated parts fit. He simply refuses to take my tests seriously. Therefore, I just don't have contact with him anymore. He's controlling too and I can't believe he won't trust real tests but will take what other doctors think as gospel even though there are no hard and fast "medical" tests for depression. Yes, I was tired and seemed like an atypically depressed person, but my moods were fine. I still laughed and loved to socialize. My docs overlooked that for 20 years. Probably because they didn't know what else to do. Luckily, one said I needed a sleep study and I followed through. Of course, I was working and had my own insurance, so I didn't have to rely on anyone else to "let" me do it.

Please keep us updated on your progress. Hopefully, you can get Provigil and it will help you.

I'm sorry to hear about the way your father treated your diagnosis. I just don't understand how someone could ignore the proof from actual studies done, and then believe that it's something that can't be proven by tests... it's crazy. I know if my parents saw the results indicating that it was a sleep disorder, they'd finally accept it, but I can empathize with you about having someone not believe you or think they know better than you and the doctors.

I have never asked my doctor to talk to my parents, but they already don't like him because of the bills and medications he's prescribed for me. But, I've been at school for 2 weeks now, and yesterday, out of the blue, my mom called me to see if I had made an appointment for a sleep study yet, and that I should do that. I was extremely surprised, especially because she was being nice about it. So now all that's left to do is to make the appointment and figure out some sort of payment plan to pay my parents back for helping me out. It sucks not being able to have enough energy to go to school and have a job, it makes me feel like a bum because my roommates work so much. I don't know whether or not I should be making an appointment with another doctor beforehand to check for other things that could be making me tired, like my thyroid levels or something.. I've had my thyroid, and other things, checked 3 times in my life (once in middle school when I wasn't growing, once in high school because I was so tired all the time and my doctor thought maybe it was anemia, and once 2 years ago when I was having crazy joint pain in my fingers and of course more tiredness). The doctor said the results showed normal levels of everything for each time I went, so who knows. I guess I could ask the sleep study place if I should do this when I call for the appointment, though.

I'll have to update when I get the study done, it's such a relief knowing that this is actually going to happen now!

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  • 3 months later...

Hi... I just wanted to let anyone who's interested know that I got my sleep study done.. finally..

They let me go home early during the MSLT because I was going into REM sleep so quickly on every nap. I still have to wait for the results and everything but the lab technicians basically told me I have Narcolepsy and my sleep doctor was pretty sure about it when I saw her before the lab study.

So yeah. I guess my membership to the Narcolepsy club is currently pending... it really pisses me off that after years of being extremely sleepy and getting in trouble for it from my parents, I end up having an actual condition that causes me to be like that. And they never believed me when I said there was something wrong with my sleep. Never once. They still don't understand what a big deal it is, actually.

On a side note, it also turns out I have Lupus.. which is like, a really awesome combination.

My mom has been calling me a hypochondriac for the past few years.. umm yep. I wasn't making any of it up...

Sometimes, my parents are really awesome!

Anways.. I guess I'll find out soon enough if it's true Narcolepsy or not..

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If you hit REM that fast on every nap then youre probably Narcoleptic. Welcome to the club! Im currently not doing anything about mine now but I hope they give you really good treatment options. I used to be on Provigil and all it made me do was sleep. After 10-20mins of taking it! And I slept sound. But I dont know, herrfous wrapped Provigil in a neat package and if you havent tried it and and are going to try it, the best of luck to you.

Thanks for keeping us updated!

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  • 4 weeks later...
Guest Guest_runningfox_*

So I saw my sleep doctor about a week ago and the official diagnosis is Narcolepsy w/ cataplexy. She said she thinks my Narcolepsy is pretty severe, but my PSG was mostly normal. She was explaining so many things at the time that I didn't think to ask, but aren't you supposed to have messed up sleep cycles with Narcolepsy? The only abnormal part on my lab result for the PSG was that I snored because I couldn't breathe out of my nose (I have always had one nostril I haven't been able to breathe out of, probably a deviated septum), and that my snoring/blocked nose would wake me up. A LOT. But she had to explain that to me.. and the actual lab report that I have has very little mention of that problem and says that my sleep was "otherwise insignificant". Plus, that snoring problem has nothing to do with Narcolepsy, does it?

For the MSLT I did 4 naps and fell asleep for all of them right away, the average was about 3 minutes... it only took me 30 seconds for one of them ha! And I went into REM sleep for 3 out of the 4. I guess that's where the diagnosis is even coming from, because my sleep cycles during the PSG were relatively normal. I don't know why she said my Narcolepsy was severe though. I guess because of the REM sleep part?

So, she wanted to put me on Xyrem, but our insurance won't pay for that so it would be like $600 a month. And I tried Provigil and it made me feel sleepy too! I only felt it working on days where I only got a few hours of sleep because I was studying or doing homework... it was a weird feeling... like I was sleepy but awake... zoned out but not at the same time. I don't know, I hated it, and I couldn't take naps with it, which made me more tired because I couldn't get refreshed. So the only thing she could do was prescribe me a sleeping pill to see if it would help... but she doubted it would. And so far I haven't seen a difference.

And... big surprise, my parents think they know better than the doctors treatment options and don't think Narcolepsy is anything to worry about! I don't know if they are in denial, or what, but they refuse to educate themselves further on the topic no matter what I say or what information I hand to them. My mom is pissed, now that our deductible restarted with the new year, that I'm taking amphetamines. She doesn't mind whatsoever when our insurance is taking care of the bill... she freaked out and said she was going to call my psychiatrist to tell him to stop prescribing Vyvanse to me because I don't need it. She can't get the fact through her head that that is what is keeping me awake, and if my psychiatrist wasn't perscribing it, then my sleep doctor would be. The reason I stayed on Adderall so long was because without it, I would sleep for 24 hours straight... and now it's the same with the Vyvanse. And she even claimed she read about Narcolepsy... I don't really believe her...

Well yeah... so now I'm officially a member of the Narcolepsy club! And honestly, I'm going to go take a nap!

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  • 1 month later...

I don't know why she said my Narcolepsy was severe though. I guess because of the REM sleep part?

And... big surprise, my parents think they know better than the doctors treatment options and don't think Narcolepsy is anything to worry about!

She doesn't mind whatsoever when our insurance is taking care of the bill... she freaked out and said she was going to call my psychiatrist to tell him to stop prescribing Vyvanse to me because I don't need it. She can't get the fact through her head that that is what is keeping me awake, and if my psychiatrist wasn't perscribing it, then my sleep doctor would be. The reason I stayed on Adderall so long was because without it, I would sleep for 24 hours straight... and now it's the same with the Vyvanse. And she even claimed she read about Narcolepsy... I don't really believe her...

Well yeah... so now I'm officially a member of the Narcolepsy club! And honestly, I'm going to go take a nap!

Snip Snip (and I am in a hurry). Probably because you fell asleep so quickly, coupled with REM during your naps. I am so very sorry about your parents. My father is deceased but I think you must have my mom. She thinks we all need to look on the bright side and think happy thoughts and that if you are on antidepressents you are either weak or using them as an excuse and are not neccessary.

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