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#1 greyissleepy

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Posted 14 January 2010 - 10:06 PM

Hello,

I was just diagnosed yesterday. I have had sleep issues for so long and had just about given up there being a "real" problem. My first overnight sleeo study was completely normal. My doctor sent me back for a second one followed by a MSLP and my results from the nap study were off the wall.

I'm always tired and can sleep insane amount of time. This work week I have been avaring 10 -12 hours a night and on Satirday I slept for 17-18 hours.

My biggest problem is I CANNOT wake up in the morning. I use multiple alarm clarks. I will wake up enough to to hit snooze or turn it off and immediately fall back asleep. Even when it is only for 10 minutes. If anyone talks to me right after I wake up I don't remember the conversation or think I was dreaming. Not surprisingly I also suffer from depression and anxiety. I also have a long time issue with insomnia which seems ridiculous but I understand that isn't unheard of.

Right now I am about to fall asleep. I'm just relieved I am not just lazy. I've gotten in so much trouble at work for being late and I never have energy to do simple things at home like clean.

I am wondering if I could have any other autoimmune disease. I have not had a pysical in years.

Sorry to ramble just exhuasted and overwhelmed.

#2 Saraiah

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Posted 14 January 2010 - 10:38 PM

Welcome, GreyIsSleepy!

Everything that you are saying today, I was saying back in July when I got diagnosed. Even though I'm not like some who have a truly miraculous response to Xyrem and other medications, I can say with surety that your life is bound to get better from here.

I also can sleep for crazy amounts of time. My record, in the month before I got diagnosed, was 36 hours straight(Friday evening through Sunday morning!). Many other PWN (People with Narcolepsy) have difficulties waking up, including me. If you haven't already found this, there are alarm clocks made for the deaf and hard of hearing available over the internet that come with a vibrating device that is put under the mattress. I always joke that with the "bedshaker" under the mattress, I'm practically thrown out of bed. B)

Have you been able to talk with your doctor about treatment yet? Do you have 4,000 questions? Ask away!

And welcome to Narcolepsy Network - these are a good bunch of people!

Saraiah

#3 Rob

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Posted 15 January 2010 - 08:21 AM

yea you are not the only one. your symptoms sound exactly like me and i also have got in alot of trouble for being late. I have three alarm clocks that go off within like a min of each other. my alarms are a dual alarm clock set to the radio with the volume all the way up, a truck drivers alarm clock called a "Screamin' Meanie" its a 120dB alarm clockPosted Image both of those alarms are right beside my bed so they are blasting in my ear and then my final alarm clock is my iPod touch across the room plugged into a computer sound system with a subwoofer and it to is turned all the way up.Posted Image even with all that i still have a problem getting up. i have thought about investing in one of those alarm clocks that when it goes off it sends a helicopter that flys around the room and you have to catch the helicopter and put it back on the base before the alarm will shut off. knowing me since i'm not a morning person i would proally end up throwing my shoe at the helicopter and breaking it just to make it easier to catch.Posted Image as far as meds go i'm taking Nuvigil 150mg(which i have only been taking it like a week) the first couple of days it worked pretty good but yesterday and the day before i was fighting sleep while i was at work trying not to eat my keyboard.Posted Image anyways good luck, if you have any questions feel free to ask. also i know its pretty scary situation that your in right now but don't let it stress you out. Posted Image

#4 Mirianda

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Posted 15 January 2010 - 10:41 AM

Welcome!

Yeah you must be stressed! But if you have question don't be shy everyone here wants to help another PWN! So I hope everyting goes better for you from now on!

Have a Great day!

#5 greyissleepy

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Posted 15 January 2010 - 04:18 PM

Thanks for the welcome.

I'm just so relieved to be told I'm not just lazy. My house is always a disaster since work exhuasts me and I never have energy to do any cleaning. I don't drive which compounds my lack of energy

Is cataplexy always so strong you will collapse or fall down? I told my doctor I don't have that. I've been reading and when I get really emotional, I will suddenly feel odd and disconnected. Like I am outside my body. I also suffer from long term severe depression and anxiety so it may just be related to that.

I do get bad anxiety attacks which makes taking stimulants loads of fun. I already take one for my ADHD so my doctor is just mucking with the dosage to start.

Are the hallucinations always when you first wake up? I sometimes see or feel things that aren't there, but again I tend to think that is more related to my anxiety disorder or the meds I am on for that.

I'm giving work copies of my paperwork from the doctor since I have gotten in a lot of trouble for missing work and being late. HR really didn't seem to get it. I gave him a medline summary that explained this is not a mental illness. He started reading the treatment out loud asking and asking if I was taking this medicine or that. I really worry about getting to the point of not being able to work and being completely screwed. I need my health insurance and being able to pay rent is kinda nice.


#6 hathor

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Posted 16 January 2010 - 03:17 PM

hi grey and welcome.
u have come the right place if u need anything. i love this site. i have had narcolepsy for so long and thought hte docs had made it up until i found this lot. u are definatley not alone. i think we all must have problems with alarm clocks. i can sleep through them aswell or turn them off in my sleep. ive even tryed putting it across the room but it doesnt work.
i have a question for u to think about here tho. sorry if u dont like me asking its just a thought ok i dont mean it in a bad way. i have been coming to this site for a while now and i have read so many experiences. u say in your post u have ADHD and depression and anxiety. well u must have been told u have got them before narcolepsy and then u say u have just been diagnosed with narcolepsy. but some times people have been diagnosed with these kinds of things before actually getting to the real diagnoses of the problem being narcolepsy. just a thought for u to check out. if u check this out then it will give u a better chance for getting meds sorted that could help or dosages etc. im not very good at explaining what i mean so i hope u get what im saying.
u are not lazy and now you know that yourself dont let any one tell you otherwise. i live on my own so i know where u are coming from on the house work thing. lol it just takes so much energy especially when its a bad few days of sleeping.
i have cataplexy aswell. i dont always fall down. i have accidents every now and again tho. i dont know if i dont fall because i have had it so long i know to sit down or what because cataplexy affects me every single day every time i laugh but as u will learn we all have the same conditions but it is different with everyone.
so remember u are not alone with this you will always find someone here that understands. keep up the post tho cause there is always new people that are just dianosed aswell that u could help.
bye for now.
clare.

#7 Saraiah

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Posted 16 January 2010 - 05:10 PM

Hi Grey,

So many things to talk about! With your employer, until you get treatment that's really helping, you might want to think about asking for some periodic absences with Family and Medical Leave Act (FMLA) paperwork. Many people know that you can use that law to ask for up to 12 weeks of unpaid leave to deal with a health condition. Less well known is that you can ask for periodic part-time leave to cope with a medical condition as well. Asking your doctor to fill it out, and seriously thinking with your doctor about what kind of time off would help (for example, getting permission to come in to work 1-2 hours late as needed) might save your job in the long run. And you do not have to give HR any extra information about narcolepsy; all they need is the FMLA paperwork, because they must abide by a doctor's request on such paperwork.

Regarding the hallucinations, they can happen anytime. For me, they tend to happen both when I'm waking up, and when I'm awake and proceeding through my day. The daytime hallucinations happen because part of the narcoleptic mind can go into REM/dreaming states while the rest of the brain is mostly awake. This tends to happen right before or after "microsleeps," when we fall asleep for just a few seconds (even with our eyes open, or while talking!). For years, I was misunderstood as having a psychotic disorder like schizophrenia. Now my doctors and I know that my hallucinations are actually due to narolepsy.

There was a truly fantastic study that came out in the medical literature in 2009 which clarified the differences between the types of hallucinations that occur in schizophrenia versus those that happen in narcolepsy. People with schizophrenia tend to have hallucinations that they only hear, or only see; people with narcolepsy tend to have hallucinations that they at one time see, hear, feel, can touch, etc. etc. That is, schizophrenic hallucinations tend to happen in one one sense at a time, and narcoleptic hallucinations tend to happen in multiple senses all at once.

I too have dealt with controlling major depressive disorder and anxiety for most of my life. Just on an anecdoctal basis, an astonishingly high proportion of people with narcolepsy that I've met were diagnosed with some sort of mental or emotional disorder prior to finally getting diagnosed with narcolepsy. I've heard that a larger percentage of people with narcolepsy have depression than in the rest of the population, probably because narcolepsy is so very difficult to deal with on a day-in day-out basis. Luckily, for people who do have cataplexy, some antidepressants can also suppress some to all of the cataplexy for some reason. It can get pretty complicated to deal with multiple diagnoses all at once!

It is extraordinarily difficult to find useful factual books for laypeople on narcolepsy. For good solid information, I'd advise joining Narcolepsy Network as a member when that becomes financially possible. They send out a very helpful factual summary on narcolepsy to new members, and their newsletters are also very good. You might also want to purchase the book Narcolepsy: A funny disorder that's no laughing matter by Marguerite J. Utley. Although the book is now 15 years old and somewhat dated, it's the best thing for people with narcolepsy that I've been able to find in book form.

Keep asking all of your good questions! Soon, you'll be the one typing away to help the next newbie learn the ropes.

Cheers,

Saraiah

#8 greyissleepy

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Posted 25 January 2010 - 02:14 PM

Sorry for the delay in getting back to replying. I sort of lost the last week. I was getting up and going to work every day but I just got more and more out of it and more exhausted as the week progressed.

I have thought about the fact that ADHD/anxiety could be misdiagnosed N. I think it may be part of it but I know an anxiety attack for sure. I think some of what I think are panic attacks when I get upset may be narcolepsy. As for the ADHD, I have supposed had that since I was a little kid.

I appreciate the FMLA info but unfortunately my employer doesn't fall under it as we have less than 50 people here. :( If I could take some leave time now I would.

I went back to the doc this morning and was really discouraged. I told him some of the symptoms I thought were cat and he was very dismissive of them and told me to see a nuireologist since something else must be causing it. Or he thinks I'm crazy.

I had a very bad week last week including the death of a coworker so how I have been feeling has been spiraling downward to the point where I seem to be getting disoriented what day it is or where I am, especially when I am tired. I was told this wasn't N. May not be given how stressed and exhausted I am. I didn't even bring up the hallucinations as I didn't want to know what he thought about that.

#9 hathor

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Posted 25 January 2010 - 02:55 PM

hi grey. i dont know how things work in the states for seeing docs so i cant advise you on that one, ( i live iin the UK ). how ever i think u should see another doc or someone who has some kind of idea what they are talking about. u should be comfortable talking to your doc. sometimes i get so tired i cant function these times can last to the point i have slept that much i get days muddled up. it happens all the time, when i get like this i dont know what day it is, i lose track of time i can look at the time and look again and i can lose hours, if i get up to do something i end up forgetting and walking around doing other things or just trying to remember what was i was doing. if i think ive had an hallucination its normally when im really tired or feeling tired and down.
i dont know how other people are but i just wanted to reply to your post and let you know u are not alone. even people who dont have narcolepsy get forgetful if they get too run down so it can be especially hard for us.
well gotta go sleep.
take care.

#10 Saraiah

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Posted 25 January 2010 - 04:25 PM

Sorry for the delay in getting back to replying. I sort of lost the last week. I was getting up and going to work every day but I just got more and more out of it and more exhausted as the week progressed.

I have thought about the fact that ADHD/anxiety could be misdiagnosed N. I think it may be part of it but I know an anxiety attack for sure. I think some of what I think are panic attacks when I get upset may be narcolepsy. As for the ADHD, I have supposed had that since I was a little kid.

I appreciate the FMLA info but unfortunately my employer doesn't fall under it as we have less than 50 people here. :( If I could take some leave time now I would.

I went back to the doc this morning and was really discouraged. I told him some of the symptoms I thought were cat and he was very dismissive of them and told me to see a nuireologist since something else must be causing it. Or he thinks I'm crazy.

I had a very bad week last week including the death of a coworker so how I have been feeling has been spiraling downward to the point where I seem to be getting disoriented what day it is or where I am, especially when I am tired. I was told this wasn't N. May not be given how stressed and exhausted I am. I didn't even bring up the hallucinations as I didn't want to know what he thought about that.


Hi Grey,

I am so frustrated with your doctor! But it makes all the sense in the world that he would respond that way, since he's not a neurologist specializing in sleep disorders. Truly, using all means available to you, find a neurologist who's a sleep specialist as soon as humanly possible. Your current doctor likely does not have the expertise needed to understand cataplexy - honestly, not one of the MANY doctors of different persuasions had any idea I had narcolepsy over 19 years, until I finally encountered a sleep specialist. Once you start seeing a specialist, that person will likely be able to help you to better understand the differences between ADHD and anxiety and narcolepsy, etc.

There are even psychologists and other psychotherapists, at least in some places, who actually understand narcolepsy and can help you sort it all out as well. But I think they may be harder to find.

And you are not the only PWN to get so exhausted that she can't remember what day it is, or where she is, or what it is she was saying at the beginning of the sentence she finds herself in.... That's a part of the reason I first got demoted, and then my employer tried to fire me. To some extent, I couldn't do my job, because I could no longer think clearly, or even finish a task. I was - and still am - carrying around a piece of paper each day labeled with the current day of the week and date, and a schedule and reminders for everything I need to do that day.

(One tip till you start doing better: Stick that piece of paper I just mentioned inside the translucent cover of a 3-ring binder - you know, with one of those 3-ring binders that have a see-thru piece of plastic over the cover, so that one can put in a front cover page? Then you can glance at the front of your binder throughout the day when you get disoriented, and no one around you will be the wiser.)

You may want to go to a number of online narcolepsy forums as you search for a good sleep specialist. Some forums don't allow recommendations of doctors, some allow only positive recommendations, and some allow both positive recommendations and reports of bad experiences. I personally want to hear it all when I'm searching out a good doc. Good luck! And whatever happens, give us an update when you have the time and energy.

Saraiah

#11 amazingracie28

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Posted 26 January 2010 - 10:49 AM


I totally agree with what everyone has already been saying-find a different doctor who you feel comfortable with. My sleep doc is fantastic but he's a pulmonologist, not a neurologist. You may want to look at Pulmonologists as well.



#12 Mee

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Posted 27 January 2010 - 09:42 PM

Grey,

Sorry to hear about your co-worker. And I totally understand how you feel! I repeatedly ask my boyfriend what day it is and I constantly check my blackberry. I honestly will get lost without my blackberry. I constantly check the date/time and my calendar. There have been times where I find myself disorientated in a store (I hate shopping) and I almost panic because I feel lost. I often go straight home to bed if that happens or call my bf or good friend to re-orientate (is that a word?") myself.

And ditto about doctors. I've had good ones and bad ones. However, even my regular doctor, who I think is awesome, wanted me to go back to a sleep specialist when my N symptoms started to get worse. He just didn't have the training or knowledge. Organizations like NN and NSF are working on changing that. In any case, hang on and go see a specialist and bring back the information to your doc. Doctors can learn from their patients.

Take a deep breathe. Tomorrow will be better. Just think of this as a slingshot week... step back and then fly forward! You're do great. You're be great!

Hugs,
Mee




I went back to the doc this morning and was really discouraged. I told him some of the symptoms I thought were cat and he was very dismissive of them and told me to see a nuireologist since something else must be causing it. Or he thinks I'm crazy.

I had a very bad week last week including the death of a coworker so how I have been feeling has been spiraling downward to the point where I seem to be getting disoriented what day it is or where I am, especially when I am tired. I was told this wasn't N. May not be given how stressed and exhausted I am. I didn't even bring up the hallucinations as I didn't want to know what he thought about that.



#13 Nyx

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Posted 30 January 2010 - 03:37 PM

Grey: First off, narcolepsy is covered by the Americans with Disabilities Act, so you may be able to get some accommodations from your employer, and since you've notified them that you have narcolepsy, there are protections to help keep you from getting fired for your condition in most cases:

"Americans with Disabilities Act (ADA). This law requires employers to reasonably accommodate the needs of their workers who have disabilities. This includes people who have narcolepsy. For example, employers may allow workers to take short naps during the workday or adjust work schedules to avoid sleepy periods."

Perhaps you could request a later start time during the day, or a scheduled afternoon nap break? You could do some web searching or read through narcolepsy support forums about accommodations people have requested and received. Also, check out: http://blogs.myspace...logId=404188560 . It looked helpful.

Regarding cataplexy, no, it is not just when someone falls down. Cataplexy can manifest as a simple weakness in jaw muscles (causing the jaw to drop and the mouth to gape open), or part of the face to weaken (i.e., drooping eyelids) upon a strong emotion. Frequently it's when someone laughs, but really, it could be any really strong emotion, and they've found that the element of being surprised to some degree (i.e., you didn't expect something to be funny) tends to be the common denominator. It could also just be a weakness in the muscles of a leg, but which isn't enough to make you fall. It definitely sounds like you should get to a sleep medicine doctor. They come from all different backgrounds, but most commonly pulmonology, neurology or psychiatry. Not only would they be able to recognize and treat your cataplexy (if you have it), but they will also be more experienced in managing your treatment and medications. I think a sleep medicine physician with a background in psychiatry or neurology might be best in your case. Regardless, try to go to someone you can find that has been recommended, even if it's just by patient accounts posted in an online support forum. Narcolepsy patients can require a lot of time from a doctor in their first year of diagnosis, since a lot of management involves trying a myriad of different drugs and managing side effects. You don't want to go to someone who rarely has time or is too far away.

Also, it sounds like you should really talk to a doctor about a sleep aid, and not just stimulants. And I'm not just talking about xyrem. There are other medications like anti-depressants that can help you sleep better (and perhaps take a little of the edge off your excessive daytime sleepiness), or perhaps just something like ambien. They've found that narcoleptics tend to have disordered sleep, and thus it's not as refreshing as it should be. That may be why some people with narcolepsy (but without cataplexy) get a large benefit from taking xyrem, which really just impacts your sleep at night. I've heard many stories of people who were able to cut their stimulants in half (or completely discontinue them) due to xyrem. Alas, getting xyrem is a real byzantine process due to the extra regulations because it was abused as a date-rape drug in the past, so you might want to try some other sleep aids first in the interim.

Regardless, I think you should definitely find a sleep medicine physician, get some better medications (perhaps provigil plus a sleep aid to start), and review your rights for workplace accommodations and perhaps raise them with your employer. And if you are currently going to a psychiatrist, it might be a good idea to find a sleep medicine doctor who is also a psychiatrist, and they can help you determine which medications you may or may not need once you start treating your narcolepsy. If you have any more questions, of course feel free to post them. Hang tight, and good luck!