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Narcolepsy Narcolepsy help

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#1 dasikins

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Posted 11 February 2013 - 02:42 PM

Hi everyone!

 

This is my first post and I have NOT been officially diagnosed with narcolepsy.  However, for the last 12-15 years I have many of the same symptoms.  

 

I never thought I could have this because I don't have the cataplexy.  Finally I decided to do something about it because of my life was spiraling out of control-much the same way I have read about through others on this forum.

 

My blood work and sleep study came back normal.  I have seen five-six different specialist to rule out other possibilities.  I have no other symptoms associated with chronic fatigue like joint or muscle soreness.  

 

Should I get another opinion on my sleep study for a new specialist?  They did not do a MSLT, but my doc didn't think I needed a follow up.

 

I fall sleep in meetings, nap after work daily, sleep in my car during lunch, AND under my desk because I couldn't stay awake along with a bunch more symptoms.  I use to think it was depression, but the meds never help and honestly I have nothing to be sad over other my fatigue.

 

What treatments have you found helpful?  I started ADD-PI stimulants about 3 weeks ago for that condition.  They have there own issues and I am still sleepy after about 5 hours.  

 

Any experiences or thoughts would be greatly appreciated.  I enjoy reading through these forums!

 

Danielle

 

 



#2 lilbrez51

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Posted 11 February 2013 - 05:33 PM

Hey Danielle, My name is Lori and I am ironically an EEG and Sleep tech. by trade. You said your sleep study was normal and that you have hypersomulence, usually that is when an MSLT is ordered.I would get an actual sleep doc. and go from there. Good Luck!



#3 dasikins

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Posted 11 February 2013 - 06:21 PM

Thanks!  



#4 Tre

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Posted 12 February 2013 - 12:14 PM

I've heard some docs don't do the MSLT.  It does have some unreliability to it but my main question is do you dreamwhen you nap for short periods?  Have you had sleep paralysis or hypogonic hallucianations.  I ask only because these things are what normally set IH (ideopathic hypersomnia) from Narcolepsy.

If you are having the strange REM symptoms then it's most likely N.  There can be some differences in treatments but both are helped by the stimulants and other meds for wakefullness.  Obviously IH patients wouldn't use xyrem or other REM reducers.

I'm tired so I hope that makes sense.  Some countries require it for an official diagnosis, but if you and your doc are working well together go with what you're doing.



#5 N50+

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Posted 14 February 2013 - 10:01 PM

MSLT is the gold standard when dx narcolepsy. The results are rarely other than black and white. You either have the N dx or not. Insist on a MSLT if you think you have N.

#6 dasikins

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Posted 15 February 2013 - 06:42 PM

I've heard some docs don't do the MSLT.  It does have some unreliability to it but my main question is do you dreamwhen you nap for short periods?  Have you had sleep paralysis or hypogonic hallucianations.  I ask only because these things are what normally set IH (ideopathic hypersomnia) from Narcolepsy.

If you are having the strange REM symptoms then it's most likely N.  There can be some differences in treatments but both are helped by the stimulants and other meds for wakefullness.  Obviously IH patients wouldn't use xyrem or other REM reducers.

I'm tired so I hope that makes sense.  Some countries require it for an official diagnosis, but if you and your doc are working well together go with what you're doing.

 I just saw this-do I day dream when I nap?  No.  I day dream more than others hence the ADHD, but I do not day dream when I nap.  I DO remember my dreams when I wake up most of the time.

 

No hypotonic hallucinations and I have had sleep paralysis, but I can count the number of times on my hand.  It was quite a scary experience!

 

I don't think I am having strange REM symptoms-my sleep study showed there were not that many, but I did have SOME.  

 

Thoughts?



#7 dasikins

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Posted 15 February 2013 - 06:45 PM

MSLT is the gold standard when dx narcolepsy. The results are rarely other than black and white. You either have the N dx or not. Insist on a MSLT if you think you have N.

 

Ok thanks!  I need to figure it out and I am hoping this sleep doc will have an open mind, because I am running out of options!  I have seen an/a: endocrinologist, psychiatrist, rheumatologist, allergist, sleep specialist, allergist, oncologist (since my parents had cancer), and my regular Pdoc.  It's like I am stabbing in the dark.  They don't have any helpful ideas.  Where is Dr.House when I need him?



#8 dasikins

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Posted 15 February 2013 - 06:48 PM

Hey Danielle, My name is Lori and I am ironically an EEG and Sleep tech. by trade. You said your sleep study was normal and that you have hypersomulence, usually that is when an MSLT is ordered.I would get an actual sleep doc. and go from there. Good Luck!

Hi Lori!

 

Would you recommend someone else rather than the individual who read my study?  Whatever he saw he did not recommend getting anything else done other than 'it was normal.'  I am a little confused.  He looks mostly for Sleep apnea I believe.  THanks!



#9 exanimo

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Posted 01 March 2013 - 09:25 AM

Most sleep specialists are trained to look for sleep apnea and restless leg syndrome, as these are two of the most common reasons for EDS. There are many who do not know enough, or believe in, Narcolepsy. These sleep specialists are often going to be close minded the moment the N word pops out. It's a rare disorder, and thus many have not seen it. But if you find a good sleep specialists, who listens to you, and asks you questions about your symptoms and daily activities, they are going to be more likely to be open minded. These sleep specialists are the ones who do know that while narcolepsy is far from common, it is just as much a possibility as sleep apnea or other sleep disorders. 

 

I recommend looking around - try and find research done by the sleep specialist. Most of them (if they're a doctor) will have written scholarly articles that will be published in scholarly journals. These are usually topics that are familiar to them, within their scope of study. Also check any reviews you might be able to find from their patients. But I think the articles would be the easiest to find.

 

I was lucky enough to find an amazing sleep doctor, who was very thorough and asked me questions and answered my questions. He didn't even hesitate to do the MSLT and read it just as a simply. Not overanalyzing minor details, if the bigger picture was more important. He is also very flexible with my treatment plan and wants to work with me to find the best solution. I hope that you can find a great doctor like this, because it really does make all of the difference.

 

I would recommend that you keep a sleep journal for a few weeks. Also record any other symptoms on a daily basis, including any dreaming, or mood changes. This will give you a better outline for what your symptoms are, and which are more prevalent. Also how much sleep you are getting and how many of those hours are during normal sleep hours. I think this would be very beneficial. 

 

Good luck, and please keep us updated!



#10 sk8aplexy

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Posted 01 March 2013 - 03:13 PM

Examino you said it very very well, there are sleep tech's who weigh their own opinion over especially yours and even whatever doctor/specialist...

 

I experienced such. 

I do not want to tell my entire story in great detail, as it will literally, scare many. 

I do recognize though, that being with very rare and complex health matters, in my own case and situation/s are (or was) not the usual.

 

I'd like to see sleep studies 'done at one's home where the person can sleep, normally' and especially for those suspected of N and/or for those with neck sensitivities; such (regarding home sleep studies) is being written about more and more in articles that I come across. 

http://www.usatoday....mentum/1922335/

If someone has an Apnea issue that requires attention, then sure they should go in for a more thorough study, but know that 'minimal apneas' (AHI of 5 or even 10, apneas per hour) are something that everyone experiences, at points in time (this I've read, I do not like speaking out of my behind..).

http://www.ncbi.nlm....les/PMC2564770/

Another interesting thing, which I've read, is that N sleep patterns are sort of unique even though they're complex/unusual. 

http://www.sleepasso...bstract&id=8213

http://www.sleepasso...bstract&id=8424

Somewhere, I read that 'a very good sleep tech can, tell by the sleep pattern/s, or recognize N.'

 

The experience that I went through scarred me, it scared me and it literally changed my life in a plethora of ways.

What I will say is this, be very very careful and pay close attention to how -whatever you are given and/or recommended- effects you, over the course of time.

Speak up, speak clearly, do not hesitate with questions and don't be told that you can not look out for yourself or read about stuff online...

It is through these sort of forums and many articles, then speaking with experts, that brings real confirmation; at least that's what it took for me.

Be careful, be cautious and be conscious.

 

The best to you all.

 

-Please, I simply will ask that no one quote, copy, cut and/or paste what I've written above, below...-



#11 dasikins

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Posted 03 March 2013 - 11:09 AM

Thanks Exanimo!  My sleep specialist has about 20 patients with narcolepsy.  He actually stated, he is 99% positive he thinks I have that or IH, because I would fall asleep in my classes at lunch as far back as high school (among everything else.)  You brought up some good tips which I will definately utilize.

 

My sleep lab gave me a sleep log for 2 weeks and I will fill that out.  Although I am on stimulants for ADD now...so kind of hard.

 

 

 

Most sleep specialists are trained to look for sleep apnea and restless leg syndrome, as these are two of the most common reasons for EDS. There are many who do not know enough, or believe in, Narcolepsy. These sleep specialists are often going to be close minded the moment the N word pops out. It's a rare disorder, and thus many have not seen it. But if you find a good sleep specialists, who listens to you, and asks you questions about your symptoms and daily activities, they are going to be more likely to be open minded. These sleep specialists are the ones who do know that while narcolepsy is far from common, it is just as much a possibility as sleep apnea or other sleep disorders. 

 

I recommend looking around - try and find research done by the sleep specialist. Most of them (if they're a doctor) will have written scholarly articles that will be published in scholarly journals. These are usually topics that are familiar to them, within their scope of study. Also check any reviews you might be able to find from their patients. But I think the articles would be the easiest to find.

 

I was lucky enough to find an amazing sleep doctor, who was very thorough and asked me questions and answered my questions. He didn't even hesitate to do the MSLT and read it just as a simply. Not overanalyzing minor details, if the bigger picture was more important. He is also very flexible with my treatment plan and wants to work with me to find the best solution. I hope that you can find a great doctor like this, because it really does make all of the difference.

 

I would recommend that you keep a sleep journal for a few weeks. Also record any other symptoms on a daily basis, including any dreaming, or mood changes. This will give you a better outline for what your symptoms are, and which are more prevalent. Also how much sleep you are getting and how many of those hours are during normal sleep hours. I think this would be very beneficial. 

 

Good luck, and please keep us updated!



#12 dasikins

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Posted 03 March 2013 - 11:15 AM

Thanks @Sk8aplexy...although I am not sure what you are referring to.  Were you suggesting I be careful about the medicine or a sleep tech or all?

 

Strange-my doctor indicated Narcolepsy or IH were not rare disorders.  They are just misdiagnosed.  Regardless, anything is better then not knowing (for me anyway.)

 

thanks for all your insight!



#13 sk8aplexy

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Posted 03 March 2013 - 11:54 AM

Perhaps I was referring to them becoming side-tracked and/or possibly being clueless; as was my experience. 

Having a complex and unusual, yet mild, Sleep Apnea complicated everything in my case, yet the Nw/C was so absolutely obvious and clear...

But also, was saying be careful with it all, as 'only one's self can actually begin to really judge how they themselves feel'.

Words can have different meaning, different rings, every one will interpret them differently and words evolve/change constantly; languages too.

N, as are most 'sleep disorders' are still far from entirely understood. 

As N recently more and more, seems to commonly be referred to as an Auto-Immune Disease, specifically of and/or within the brain...

 

The best of luck.



#14 MINItron

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Posted 03 March 2013 - 10:59 PM

Thanks @Sk8aplexy...although I am not sure what you are referring to.  Were you suggesting I be careful about the medicine or a sleep tech or all?

 

Strange-my doctor indicated Narcolepsy or IH were not rare disorders.  They are just misdiagnosed.  Regardless, anything is better then not knowing (for me anyway.)

 

thanks for all your insight!

 

It seems that the more we understand N, and the better we screen and diagnose the population the less rare it seems to be. I personally think there are untold masses out there living with varying degrees of N, or IH, that simply have not seen a doctor. Others, like me, spend a decade before they find a doctor that actually takes their complaint seriously, and seeks to find the real source.



#15 dasikins

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Posted 04 March 2013 - 05:49 PM

It seems that the more we understand N, and the better we screen and diagnose the population the less rare it seems to be. I personally think there are untold masses out there living with varying degrees of N, or IH, that simply have not seen a doctor. Others, like me, spend a decade before they find a doctor that actually takes their complaint seriously, and seeks to find the real source.

 

Yep this is me...but my doctor did mention it's often misdiagnosed by quite a large percentage.  More people are diagnosed with ADHD or Depression before narcolepsy.  Although we still have so much more to learn about the brain.  Research is showing some new and exciting things-I would guess a lot is interconnected.  The 'loop', as I call it is a strange place.



#16 MINItron

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Posted 05 March 2013 - 09:58 PM

Yep this is me...but my doctor did mention it's often misdiagnosed by quite a large percentage.  More people are diagnosed with ADHD or Depression before narcolepsy.  Although we still have so much more to learn about the brain.  Research is showing some new and exciting things-I would guess a lot is interconnected.  The 'loop', as I call it is a strange place.

 

I have had my thyroid and heart checked more times than I can count. They would check one or both as a source of my sleepiness, the tests would be normal, and they would send me away. Depression was mentioned in conjunction with my chronic pain once, but not seriously. 







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