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Years Before Diagnosis


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#1 Dale

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Posted 24 November 2012 - 07:03 PM

I don't know how may others have this same story or experience but I hope not. It started at least 9 years ago, I would wake up in the morning real tired and felt it all day. Over time it got worse to where I was falling a sleep during the day in the worst of times. Doctors found my thyroid didn't work so on with the medication trials to get it right (this took about 1 year to get it right). All the doctors said this will solve everything, didn't happen. So they decided that it must be sleep apnea, on with the tests. After 4 negative tests I was getting frusterated. By this time it was at least 4 years of nothing, I was getting worse each month or so. About 2.5 years ago my memory got so bad that I couldn't even remember where I was going when I was driving. Now Dementia runs in my family, my grandfather died at age 52 from this (At this time I'm 40) so this came into my thoughts. I was having hallucinations all the time, shadows moving around, things running across the road when driving (the thought "I see dead people" came to mind). Finally my doctor referred me to a Neurologist, he didn't think it was early onset on dementia but a sleep disorder. I told him I went through this lots before with no results, he sugested it could be narcolepsy. So he referred me to the top sleep doctor in western Canada (This was the best thing that happened). After 1.5 years I finally got in to see him, I did a 24 hour sleep test so they could find out what was happening. The results were shocking, more for the doctor than for me. They found I have narcolepsy with sleep deprivation (very rare to have both). The computers found I woke up 260 times in 8 hours and during the day I fell asleep in less than 3 minutes all day long. My daytime tiredness was figured that after 8 hours of sleep, I was as tired as someone who hasn't slept for 36 hours. Everyone I knew couldn't figure out how I could function throughout the day (I work 10 hours a day and never missed work because of this). Now they figured my sleep problem caused my day problem, so on sleep medication to get me into REM sleep should get rid of my daytime tiredness. The first three drugs didn't work so they put me on Clonazepam .5mg, it wasn't until I got to 1.5mg before I started to dream again. This was amazing to actually dream after 8 years, but I still couldn't stay awake during the day. They tried Concerta 80mg (didn't work) Ritalin 100mg (didn't work) Dexedrine 80mg (worked well but not strong enough to last all day) finally they put me on Adderall 30mg x2 in the morning plus 10mg Dexedrine instant release in the morning and another 10mg's late afternoon once the Adderall wore off. Finally, sleep at night and stay awake during the day. It has been just over a week since the new drugs, so far it is working great. I just feel I need a stronger sleep medication since I only get around 5 - 6 hours of sleep during the night, but what a difference. I hope maybe my experience will help someone else, this is a frusterating process to get diagnosed correctly but get the right doctor who really cares, it will come in time. My blood pressure was so high due to the stress of no sleep. Look, it took almost 9 years for me, I really thought I was going insane which is scary.

So to end my story, my final words for anyone going through this is, your not alone and there is answers, however long it takes.

PM me if you need more information.

#2 Hank

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Posted 25 November 2012 - 03:20 PM

I don't know how may others have this same story or experience but I hope not. It started at least 9 years ago, I would wake up in the morning real tired and felt it all day. Over time it got worse to where I was falling a sleep during the day in the worst of times. Doctors found my thyroid didn't work so on with the medication trials to get it right (this took about 1 year to get it right). All the doctors said this will solve everything, didn't happen. So they decided that it must be sleep apnea, on with the tests. After 4 negative tests I was getting frusterated. By this time it was at least 4 years of nothing, I was getting worse each month or so. About 2.5 years ago my memory got so bad that I couldn't even remember where I was going when I was driving. Now Dementia runs in my family, my grandfather died at age 52 from this (At this time I'm 40) so this came into my thoughts. I was having hallucinations all the time, shadows moving around, things running across the road when driving (the thought "I see dead people" came to mind). Finally my doctor referred me to a Neurologist, he didn't think it was early onset on dementia but a sleep disorder. I told him I went through this lots before with no results, he sugested it could be narcolepsy. So he referred me to the top sleep doctor in western Canada (This was the best thing that happened). After 1.5 years I finally got in to see him, I did a 24 hour sleep test so they could find out what was happening. The results were shocking, more for the doctor than for me. They found I have narcolepsy with sleep deprivation (very rare to have both). The computers found I woke up 260 times in 8 hours and during the day I fell asleep in less than 3 minutes all day long. My daytime tiredness was figured that after 8 hours of sleep, I was as tired as someone who hasn't slept for 36 hours. Everyone I knew couldn't figure out how I could function throughout the day (I work 10 hours a day and never missed work because of this). Now they figured my sleep problem caused my day problem, so on sleep medication to get me into REM sleep should get rid of my daytime tiredness. The first three drugs didn't work so they put me on Clonazepam .5mg, it wasn't until I got to 1.5mg before I started to dream again. This was amazing to actually dream after 8 years, but I still couldn't stay awake during the day. They tried Concerta 80mg (didn't work) Ritalin 100mg (didn't work) Dexedrine 80mg (worked well but not strong enough to last all day) finally they put me on Adderall 30mg x2 in the morning plus 10mg Dexedrine instant release in the morning and another 10mg's late afternoon once the Adderall wore off. Finally, sleep at night and stay awake during the day. It has been just over a week since the new drugs, so far it is working great. I just feel I need a stronger sleep medication since I only get around 5 - 6 hours of sleep during the night, but what a difference. I hope maybe my experience will help someone else, this is a frusterating process to get diagnosed correctly but get the right doctor who really cares, it will come in time. My blood pressure was so high due to the stress of no sleep. Look, it took almost 9 years for me, I really thought I was going insane which is scary.

So to end my story, my final words for anyone going through this is, your not alone and there is answers, however long it takes.

PM me if you need more information.


Please do not stay on Clonazepam for long. It reduces stage 3 and REM sleep, and acts as a long acting sedative. Clonazepam will make you more tired. Long term, it will require a difficult hell-like withdrawal to discontinue.Consider reading up on your future with Clonazepam: http://recovery-road.org/ My former doctor told me it would be ok- it wasn't. I am almost ok now and nobody should have to go through that.

#3 SleepyRaffie

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Posted 26 November 2012 - 12:10 PM

Please do not stay on Clonazepam for long. It reduces stage 3 and REM sleep, and acts as a long acting sedative. Clonazepam will make you more tired. Long term, it will require a difficult hell-like withdrawal to discontinue.Consider reading up on your future with Clonazepam: http://recovery-road.org/ My former doctor told me it would be ok- it wasn't. I am almost ok now and nobody should have to go through that.


Hank. Thanks for posting this. My husband has been taking this and I have been trying to get him to research it. He likes it because he perceives his sleep as being better. Sigh.

#4 Hank

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Posted 27 November 2012 - 09:12 AM

Hank. Thanks for posting this. My husband has been taking this and I have been trying to get him to research it. He likes it because he perceives his sleep as being better. Sigh.



I don't know why your husband is on that medication or for how long, but I do know why he perceives his sleep is better. We don't know what happens when we are sleeping. Benzo's lengthen sleep but reduce the quality by reducing Stage 3 and REM. If he will be interested in stopping it- that needs to be a slow process. You will both need to be informed about this process.

I had no idea what to expect and did not know what was happening when it happened. Neither did my wife. All of this happened while I was receiving a diagnosis that was an emotional punch in the gut. The withdrawal was made worse by the firestorm of the diagnosis and intrusive family opinions.

You will both need to know what to expect and manage it gently. I did not have that and I hope you will. That will prevent the worst of what I experienced. It should then be manageable and you both can get past it. Being on that medication is easier than getting off it. Getting off it becomes harder the longer the body adapts to being on it. The brain (GABA receptors) need to slowly adjust to being without it. I did it the hard way because I did not know the right way- and nobody told me the right way.

It helps me to know that you will now know the right way and will be spared from what I experienced.

#5 DeathRabbit

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Posted 27 November 2012 - 10:41 AM

I don't know why your husband is on that medication or for how long, but I do know why he perceives his sleep is better. We don't know what happens when we are sleeping. Benzo's lengthen sleep but reduce the quality by reducing Stage 3 and REM. If he will be interested in stopping it- that needs to be a slow process. You will both need to be informed about this process.

I had no idea what to expect and did not know what was happening when it happened. Neither did my wife. All of this happened while I was receiving a diagnosis that was an emotional punch in the gut. The withdrawal was made worse by the firestorm of the diagnosis and intrusive family opinions.

You will both need to know what to expect and manage it gently. I did not have that and I hope you will. That will prevent the worst of what I experienced. It should then be manageable and you both can get past it. Being on that medication is easier than getting off it. Getting off it becomes harder the longer the body adapts to being on it. The brain (GABA receptors) need to slowly adjust to being without it. I did it the hard way because I did not know the right way- and nobody told me the right way.

It helps me to know that you will now know the right way and will be spared from what I experienced.


If I had to guess, I bet the REM reduction is what is making him feel better. It's probably suppressing REM behavior whilst awake, as well, allowing him to feel more alert. But it's goign to make the underlying cause worse over time methinks.

#6 SleepyRaffie

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Posted 27 November 2012 - 06:44 PM

He does not have narcolepsy (as far as we know). That would be me. He has sleep apnea and most likely RBD. He does not feel any better in the day, but likes the feeling of sleeping through the night. Anyway, I sent him the info and then asked him what he thought about it later. He was pretty shocked at the half life and the issues of withdrawal. I asked him if he wanted to wean down and he told me he ran out awhile ago, but probably will not get more since he got the additional info. He seems to be doing fine. Fortunately he had not been on it long. Thank you for all of the info.

#7 Dale

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Posted 27 November 2012 - 07:51 PM

I am wondering what there is for me to take at night instead of Clonazapam? When I wake up 260 time a night (which is less than every 2 minutes) I never get into REM sleep. I don't remember the wakings but it was recorded during my sleep test which diagnosed me as having Sleep Deprivation and Narcolepsy. I am wondering what a good drug would be for enducing REM and ok for narcolepsy. Anyone have advice?

#8 Sunrise

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Posted 29 November 2012 - 05:05 PM

I have a lot of awakenings at night too. On my first overnight, I had a huge number of arousals on the test. I was having sinus issues and the room smelling didn't help. Even on my 2nd overnight, I still had a lot too. On a normal night, if I don't work at it, I'll wake up all night.

I think the biggest factor for me are improving sleep hygiene and health issues. I used to have sinus problems, allergies, asthma, anemia and gerd that would affect my sleep at different times over the years. Doing everything I can to help those issues makes my sleep better at night. It is a constant battle to eliminate the factors that make those health issues worse, but it is worth it to improve my sleep. Sleep hygiene is also a major factor. I used to be really sensitive to light and noise when I slept. It helped to wear earplugs and have blackout shades on the windows. Also keeping the temperature not to hot or cold also helped. All of these issues I have to deal with every single night and if I don't do them, I pay the price in bad sleep. I don't do them all the time...but I at least try. I think sleep hygeine is something that helps normal people, but is critical for PWN.

Another thing is that stimulants can interfere with sleep at night. Even something as minor as a cup of coffee in the morning may be affect you at night because the caffeine can be still in your system in low, but significant amounts. I learned this years ago that any caffeine I had in the day made me less sleepy at night and interfered with my sleep. The bonus is that stimulants did make it easier to wake up in the morning though! So there has to be a careful balance of any stimulants in the day and sleep at night. What can happen is that you take more and more stimulants in the day to counter your sleepiness due to bad sleep at night caused by the stimulants. And then add on drugs at night to sleep. It can be a crazy and dangerous cycle in extremes. I think it is best to take stimulants as early as possible so they can wear off as much as possible by the time you sleep. For me this is better, but the sleep affect is still there.

Ok...one more problem can be stress. I did read somewhere that the partial cause of PWN sleep problems (aka insomnia) may be due to stress and anxiety issues. I know for me this is very true. So relaxing and lowering stress may help especially in the evening. This is hard for me to do, but I think it helps.

All of these things are difficult for me to do every day, but I know it does work when I do them. There is nothing worse than a bad night's sleep.