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#1 SleepyMe

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Posted 27 July 2009 - 01:02 PM

I live in eastern Ontario. 18 years ago I was diagnosed with having absent seizures and high blood pressure and told by my doctor that I would grow out of it. I have been driving tractor trailer now for 13 years and my symptoms have never changed...scary huh. All who know me well see that my symptoms are critical and a definately narcoleptic, it's something that I just cannot hide. I'm doing the sleep clinic thing now and there associating my symptoms with sleep apnea. When I begin to explain how even after an hour long afternoon nap, my legs will give out, I lose control of my lower jaw and begin to severely stutter. If I'm eating I'll fall asleep in mid chew with food in my mouth, I can even take naps while standing. Sleep paralysis and the feeling of being gently touched while I sleep I very much know what that is. I would sometimes wake and even though my surroundings seem familiar <girlfriend as well> I have no idea where I am or who that is sleeping next to me. And the list of my horrible experiences go on. I begin to explain this to the medical staff just to be cut off as if I have no idea what I'm talking about and that's it's due to sleep apnea. My last sleep session, the first with the mask was an extremely long night because I could not sleep which happens from time to time, I'm fully aware of everything that's going on around me although I'm incappable of doing anything about it. I heard the nurse approaching and she opened the door to wake me up, I was already awake and replied 'finally'. She replied 'what do you mean finally, you just woke up and were asleep all night'. Basically being straight out called a liar, regardless of what there stupid machine/computer says, shouln't I be the one to really know as to weather or not I'm awake? My reason for writing this topic, is I'm looking for either a new doctor or such who will take me seriously in what it is that I have been suffering from for almost 2 decades now.

#2 sleepless sleeper

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Posted 27 July 2009 - 02:12 PM

Nice to have u here!

I do this - I think that I'm awake, and the sleep lab machines have proven that I'm really asleep. I've done this for years. A long time ago i asked my dr about it, and he says that its not uncommon. I saw him again last Friday and asked about it again. He says that it has to do with your brain editing snippets together. Like you'll wake up, go to sleep, repeat cycle. You just don't realize it. Your brain just splices the wake times together and strings them together in a way that makes u think that you have ben awake the whole time. I am very bad at this. Even if u do get sleep, it is not good sleep. You still feel just as strung out as if you had none. It is one of the many complexities of this disease. Not everyone does this.

As far as doctors go, many pwn's have issues w/ their doctor. Even some of the specialists don't seem to fully comprehend the scope on N. I'm fortunate because i don't fall into this category. If you are fortunate enought to have a choice, and you are unhappy with your dr, then it may be a good thing to switch over because the relationship that you have with your doctor is very important.

Let us know what's going on.

#3 SleepyMe

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Posted 27 July 2009 - 02:15 PM

Nice to have u here!

I do this - I think that I'm awake, and the sleep lab machines have proven that I'm really asleep. I've done this for years. A long time ago i asked my dr about it, and he says that its not uncommon. I saw him again last Friday and asked about it again. He says that it has to do with your brain editing snippets together. Like you'll wake up, go to sleep, repeat cycle. You just don't realize it. Your brain just splices the wake times together and strings them together in a way that makes u think that you have ben awake the whole time. I am very bad at this. Even if u do get sleep, it is not good sleep. You still feel just as strung out as if you had none. It is one of the many complexities of this disease. Not everyone does this.

As far as doctors go, many pwn's have issues w/ their doctor. Even some of the specialists don't seem to fully comprehend the scope on N. I'm fortunate because i don't fall into this category. If you are fortunate enought to have a choice, and you are unhappy with your dr, then it may be a good thing to switch over because the relationship that you have with your doctor is very important.

Let us know what's going on.



#4 SleepyMe

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Posted 27 July 2009 - 02:21 PM

On Aug 3rd, I will be speaking to to a lawer about this. I have a Neurologist but have never met him. I think I will be seeking further examination in the U.S. however, here in Canada as nice as our medicare seems to be, it really isn't. As the saying goes, 'one gets what they pay for', and seeing as we inderectly pay for our services here <through taxes> that's just the kind of treatment we get:-S

#5 Andrea Egan

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Posted 27 July 2009 - 10:59 PM

I live in eastern Ontario. 18 years ago I was diagnosed with having absent seizures and high blood pressure and told by my doctor that I would grow out of it. I have been driving tractor trailer now for 13 years and my symptoms have never changed...scary huh. All who know me well see that my symptoms are critical and a definately narcoleptic, it's something that I just cannot hide. I'm doing the sleep clinic thing now and there associating my symptoms with sleep apnea. When I begin to explain how even after an hour long afternoon nap, my legs will give out, I lose control of my lower jaw and begin to severely stutter. If I'm eating I'll fall asleep in mid chew with food in my mouth, I can even take naps while standing. Sleep paralysis and the feeling of being gently touched while I sleep I very much know what that is. I would sometimes wake and even though my surroundings seem familiar <girlfriend as well> I have no idea where I am or who that is sleeping next to me. And the list of my horrible experiences go on. I begin to explain this to the medical staff just to be cut off as if I have no idea what I'm talking about and that's it's due to sleep apnea. My last sleep session, the first with the mask was an extremely long night because I could not sleep which happens from time to time, I'm fully aware of everything that's going on around me although I'm incappable of doing anything about it. I heard the nurse approaching and she opened the door to wake me up, I was already awake and replied 'finally'. She replied 'what do you mean finally, you just woke up and were asleep all night'. Basically being straight out called a liar, regardless of what there stupid machine/computer says, shouln't I be the one to really know as to weather or not I'm awake? My reason for writing this topic, is I'm looking for either a new doctor or such who will take me seriously in what it is that I have been suffering from for almost 2 decades now.


Hello SleepyMe,

Unfortunately I'm one of those evil "sleep nurses" that subject people to sleep tests/CPAP masks. But I was a sleep patient before I became a sleep tech. I understand what you're going through right now--from both sides of the issue.

First, it is important to understand that someone can have multiple sleep problems (just like someone can have a cold and a sinus infection at the same time). In order to get down to the root of your problem, a series of tests need to be carried out. An overnight sleep study (polysomnogram) is usually the first test performed when a sleep disorder is suspected. This test checks how you are sleeping at night and can detect how "good" of sleep you are getting. It lets the doctors see if you are getting the right amount of the different stages of sleep (stage 1, 2, 3, and REM) and checks for breathing problems or abnormal movement (things that can disrupt your sleep).

If there is a problem identified with your overnight sleep study, it will need to be addressed (and treated) before further investigation is made. No one is saying you're a liar with regard to your symptoms. It certainly sounds like suspect narcolepsy symptoms. Sometimes sleep disorders can manifest similar clinical findings. People with sleep apnea have been known to have hallucinations, sleep paralysis, etc. that cleared up when their sleep-disordered breathing problems were treated. I have had patients that I was totally convinced had narcolepsy based on the symptoms they presented, when it turned out they had severe sleep apnea and were completely "cured" by CPAP. I have also had patients with the similar symptoms and breathing problems at night go on CPAP and have a experience similar to yours--they kept breathing at night but were still having problems.

It is always frustrating when someone doesn't respond to CPAP the way they "should." I can't even begin to tell you how many patients have slept for 3+ hours--have fantastic sleep, go through an entire sleep cycle without any obvious interruptions--and then wake up and say to me, "I can't sleep at all with this mask on..." He/she can't explain the 3 hours that have passed, but he/she is sure that they had been fully conscious the entire time. Believe it or not, the patient's subjective experience is just as important as the objective one that the computer recorded. It is the sleep tech's job to get both sides of the story. I'm sorry to hear that your night didn't go very well and that your night tech was rather rude in HER assessment of YOUR sleep (as a rule, sleep techs should not disclose any information about the study). You're anger/frustration is understandable.

If symptoms persist once sleep apnea has been treated, a daytime sleep study known as the MSLT (nap test) will usually be ordered. This is 4 or 5 naps performed every 2 hours during the day after a full night's sleep. The patient is given 20 minutes to fall asleep and is allowed to sleep for 15 minutes if sleep is achieved. The doctors look for two things during these naps: how quickly the patient fell asleep, and if he/she had REM sleep during any of the naps. Two or more naps with REM is usually a positive diagnosis for narcolepsy.

CPAP is tough to get used to, but stick with it...it'll get easier with time. Your doctors will need to get your sleep apnea under control before they can continue on with the MSLT (the test for narcolepsy). No doctor would put a narcolepsy diagnosis on someone with untreated sleep apnea. I know "sleep apnea" isn't something you're wanting to hear when you're just wanting to feel better (and CPAP isn't offering any relief). If you can, get a hold of a copy of the results from your sleep study. There are two numbers that are indicators for sleep apnea: Respiratory Disturbance Index (RDI) and Apnea-Hypopnea Index (AHI). "Sleep apnea" is the diagnosis if either of these numbers is above 5 (times per hour). If you have any questions or concerns, feel free to PM me.

#6 SleepyMe

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Posted 28 July 2009 - 09:38 AM

Be careful about seeking malpractice in Canada. I have an N friend there that did that, and he lives in BC. His doctor treated him poorly, wouldn't treat him for N, but I can't remember everything actually. The result was : nothing. Lawyers now won't touch him with a ten foot pole. The only doctor within a reasonable travel distance from him is the one that he tried to sue, and the doctor will not see him now. Apparently it is extremely difficult to prove medical malpractice in Canada, and there are some ridiculous rules in place. I wish I could remember everything, but all that is in these dusty mental halls of my brain is the gist of the situation. Now he receives no treatment for n at all. Fortunately he was misdiagnosed with a diff illness before this happened, and he does receive meds that help him control his n a little bit. If you would like me to, I will ask him about it again.



#7 SleepyMe

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Posted 28 July 2009 - 09:44 AM

Oh I'm not out to sue anybody at all. I'll be talking with a lawyer to simply give me better guidance and to find a neurologist who has experience with in these fields. Our system here is so under funded that proper treatment for anything spanding from a flu to cancer of the brain is something everyone should get a second opinion on unfortunately.

#8 Bafflegab

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Posted 28 July 2009 - 03:05 PM

Our system here is so under funded that proper treatment for anything spanding from a flu to cancer of the brain is something everyone should get a second opinion on unfortunately.


At least you have a system. It might not be the best system, or even a really good system, but it 's a system that works for the people it is supposed to. The system in the States is run by insurance companies who are in the health care business to make a profit, and is represented by the American Medical Association who represents only 33 percent of the practicing physicians who are mostly specialists who, right or wrong, expect to be paid exceedingly handsome fees and who, for the most part, are afraid that any change in the current system (regardless of their personal opinion on the current health care reform debate) would mean they would have to accept a substantial cut in pay.

Overseeing the insurance industry and the practicing clinicians is congress who doesn't have a dog in the fight, except their own reelection campaign that is financed by (among others) the health care lobbyists who work for (you guessed it) this country's health care insurers. On top of that we have President Obama being advised by economic grave robbers (if you aren't as afraid of Laurence Summers and Tim Geithner as you are of Dick Cheney, you aren't paying attention) who haven't seen an economic decision they don't love if it means they get to stay in a position of power and make a few bucks while they're there.

If Obama was serious about economic reform and doing the right thing, he would have hired Elizabeth Warren and Joe Stiglitz to be his primary economic advisors. With the team he has, nothing is going to change. When Obama's term ends (whether in 4 or 8 years) the only thing that will have changed in this country is that the words "hope" and "change" will be remembered by voters in the same way as the pet rock is remembered by 40-year-old animal lovers.