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What Were Your Mslt Results & Diagnosis?


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#21 Livi

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Posted 23 August 2013 - 11:24 AM

Reply to TiredAgain, you said you question your results???  There is no reason to question them!  It is very clear narcolepsy!   You might think that you don't fall asleep like that normally, but that's what I thought as well.  The problem is that Stage 1 sleep is very much like being awake.  You might think that you are awake when you are really doing automatic behavior.  For all my naps (above), I thought that I was awake.

 

Sunshine000, I also had those jolts that you described, and I'm not sure what they were from.  

I don't think they can tell if you have a sex dream  ;)   It's not a Functional MRI so they can't tell which part of your brain is in use.  Wait....  <bleep>.



#22 TiredAgain

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Posted 23 August 2013 - 03:37 PM

Livi I think it's hard to get a good reading of sleep habits when your hanging out in a room trying to stay away. I really don't sleep that much when I can. When I try to nap it takes forever for me to fall asleep. On average I probably get about 5hrs a night and like 10 / 15mins during the day. Most people with N can fall asleep anytime. I keep going through sleep episodes 95% of the time because I know if I do lay down I probably wont sleep anyway



#23 Livi

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Posted 23 August 2013 - 10:35 PM

Trying to stay away? Did you mean awake? Why would you be trying to stay awake during your MSLT? Sorry, I'm just confused.... I'm trying to understand....
When you try to nap it takes you forever to fall asleep. That's what I would say too. Except I don't even realize that I'm in Stage 1 sleep and you might not realize it either.
What are the sleep episodes that you have 95% of the time?

#24 ironhands

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Posted 23 August 2013 - 10:48 PM

They need you to stay awake between naps, or it'll skew the results, unless it was an actual MWT.  Is that the right acronym, maintain wakefullness test?



#25 Livi

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Posted 24 August 2013 - 12:02 AM

Oh, he meant stay awake between naps? Well I did plenty of things between naps - watched movies, read books, talked to other patients & joked with the techs, did Sudoku, went down to the cafe, surfed the web. It wasn't hard to stay awake..... I'd say it's harder to stay awake at work every day than to do things i can quietly enjoy, knowing i am taking an excused "sick leave" from work which is exciting for me!
The purpose of the MSLT is not to get a good reading of your sleep habits. It's to see how quickly you fall asleep in that particular circumstance. The protocol exists so that there can be a standardization, regardless of how you normally live your life. And you said you have "sleep episodes" 95% of the time in your everyday life.
I dont want to argue about your beliefs though. Just had been wondering about your thought process.

Iron, yeah, it's the Maintenance of Wakefulness test. Is that even used for diagnosing N? I thought it was just used for the elderly, to determine whether they are fit to drive.

#26 ironhands

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Posted 24 August 2013 - 12:14 AM

Sounds like you had an awesome clinic.  In mine the sleep rooms double as the interview rooms.  Internet?  Cafe?  Luxury :P

 

Not sure if an MWT is used anymore for N, if it ever was.  It may have been useful in the past, or useful as a less-expensive alternative since it wouldn't really require any special diagnostic tools



#27 Beckylaine

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Posted 24 August 2013 - 12:37 AM

I definitely did not stay awake b/t naps during my MSLT. I tried to read, watch tv, etc. but these are the things that cause me to have sleep attacks anyway. Needless to say I'm sure this skewed my results, along with the fact that I was taking Effexor 150mg daily. Sorry, just aggravated that MSLT costs so much but they didn't tell me to stop taking Effexor which suppresses REM sleep, what the heck?

#28 TiredAgain

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Posted 24 August 2013 - 07:38 AM

Hi again no I don't have sleep episodes 95% of my day, I meant 95% of the times I get them I usually just keep going, I usually only get 1 or 2 a day. When I can lay down it takes forever to fall asleep.

 

 The reason I question the N diagnoses is because most of time I can't sleep. Your right I could be in stage 1 sleep. It's just annoying that everyone I know gets so much more sleep then I do, but I'm the one with a sleep disorder LOL. My sister can lay down anytime of the day and sleep for 2 hrs straight, I lay down and I fall asleep 30mins later for about 10mins. Then I feel worse, I'm grouchy or get a headache etc..

 

I was diagnosed in 09 and thought things would get better once I knew why I was so tired all the time but it hasn't. The only thing it has helped with is people understanding. Like my son gets it when I say I can't drive him some place at the moment etc..

 

I take 30mg of Adderall and it helps a tiny bit, but my Dr wont give me more because he said I'm going to be on it for the rest of my life.

 

Just feeling frustrated!!



#29 Livi

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Posted 24 August 2013 - 07:38 AM

I guess I'm fortunate that I've always been able withstand my sleep attacks. I've never just fallen asleep without warning but I do feel an incredible urge to lie down and go to sleep. If I'm not able to, I get very irritable like a cranky child. I don't like that about myself but its better than having no control at all, I think.
Becky, so sorry about the Effexor thing. I guess my lab was really good because they gave such detailed instructions, and yeah, I guess it was a bit luxurious too, Iron. ;). It WAS in a very, very expensive & upscale area, on the 17th floor, with quite a view. Just wished the waiting area had a bigger fridge cuz the staff filled it up completely. Not such a bad complaint to have. :). They even gave me their most luxurious bedroom - they said I "won the drawing." Big flat-screen TV, sound system, huge gorgeous fully-stocked private bathroom (like a 5-star hotel), queen-size bed - you could even change the temperature of the mattress! It was a vacation for me -I was so lucky.

#30 TiredAgain

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Posted 24 August 2013 - 07:47 AM

wow Livi sounds great and yes I did mean trying to stay awake between naps. Watching TV, reading, going on my computer are all things that put me to sleep. I'm just saying thought out the course of a regular day I couldn't fall asleep that much.

 

Becky that's terrible, my lab gave me very detailed instructions also.

 

I also never just fall asleep without warning, of course when you tell people you have Narcolepsy that's what they think your going to do.

 

Do either of you have Cataplexy?



#31 Livi

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Posted 24 August 2013 - 07:52 AM

Tired, so you would explain your MSLT sleep latencies as due to boredom?
Narcoleptics can feel worse after sleeping because their quality of sleep is not good.
I agree that that the diagnosis just helps with (some) people understanding. And being able to get stimulants and possibly naps at work but I don't tell them about my N at work. My boss would think it's hogwash since I manage it well.
I'm really shocked that I was diagnosed with it again when I feel so much better than I did 3 years ago. I can still always fall asleep when given the opportunity, but I never used to be able to get up in the morning, and if I did, I'd have to go right back to bed after my shower, etc. now I can get up and stay up, and no stimulants.

#32 Beckylaine

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Posted 24 August 2013 - 08:02 AM

Livi, where is this place, lol. I've never experienced cataplexy, but could effexor be masking that as well? My sleep attacks occur when I drive more than about 30 min. Or really anytime I sit still for more than min without being "engaged" in something. I sometimes can feel them ahead of time & postpone them.

#33 TiredAgain

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Posted 24 August 2013 - 08:05 AM

Livi I think some of them were due to boredom. There is no doudt that my tiredness and sleep habits are not normal. You said you can work through your sleep episodes but you can fall asleep when given the opportunity, that makes since. It doesn't make since to me that after fighting it all day when I get home and finally have the opportunity to lay down that I struggle to fall asleep.

 

I wake up in the morning automatically between like 4:00 and 4:30 let my dogs out, but then I go back to sleep and that's where I have the problem. I have to be up around 5:30 so my alarm goes off and its torture to get up, but I can. I tell myself to stay up but then I say why when I can actually fall asleep.

 

I'm glad that you feel better, I do think things change over time. I have different sleep issues now then I did 4 yrs ago. The bottom line is I'm tired!!



#34 TiredAgain

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Posted 24 August 2013 - 08:12 AM

Becky driving is a tough one I travel to work and it can take anywhere between 40mins and a hour. In the winter it has taken up to 2 hrs and that's torture. I work with special needs children in public schools so there are times that I'm sitting in a classroom observing and just struggle to stay awake. I can tell when I'm just feeling tired and when I'm going into a real sleep episode so I can get up and move around etc..

 

Do you get brain fog? That bothers me the most when I'm talking and forget what I'm saying or I can even say the wrong words. I always thought that was a sign I was getting a migraine, but now I know it's from lack of sleep.



#35 Livi

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Posted 24 August 2013 - 08:30 AM


I have the same experience as you, Becky. Being "engaged" in something helps. It is always a struggle for me to WANT to expend the energy to get "engaged" in something to begin with <one big groan>, but once I do, it really helps. also have sleep attacks when driving but not as much as I used to. Only on the 3.5 hour drive to see my parents.

I'm not sure if I have cataplexy or not. I don't have the symptoms in my face that others describe. I just feel weak in my arms and legs when I am angry, anxious, or emotionally distressed about something, not when I laugh. So for me it is rare. I also don't fall - I kneel on the floor voluntarily with my head down for maybe 30 seconds until the jelly-limb feeling goes away. I thought that feeling happened to everyone. Once I fell but caught myself when I thought my house was being broken into. And when I was 21 and pulled over by a cop for speeding I had no idea why my body went completely weak to the point where I couldn't get back on the road for a while. I told myself it was just a normal reaction, the result of an adrenaline rush. I'm still not sure.

#36 Livi

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Posted 24 August 2013 - 08:39 AM

Tired, I get that too!!! I didn't know that was from N!!!!!!! I will be in the middle of talking about something when I can't remember the word. It happens in almost every sentence. It is so embarrassing I don't want to talk to people, just let them do the talking so i dont sound stupid. I thought something was wrong with my cognition so I went to a neuropsychologist and did all these puzzles for testing. She wrote in my report that I had mild cognitive impairment!! I was in grad school for a Ph.D.!! It didn't make sense. Then I thought maybe it's from social anxiety. Or maybe I'm just aging faster than others.
Last weekend it was really bad. Thankfully I was with my parents and we all laugh about it. I even made my mom Google the description of the kind of car I was talking about that i couldn't remember the name of. She couldn't find it, and I remembered 5 hours later. I couldn't remember Mini Cooper for the life of me.

#37 TiredAgain

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Posted 24 August 2013 - 09:05 AM

Livi like I said I always thought it was a sign of migraines, but there were times I didn't get a migraine or a headache so I thought I was just lucky. Then I just thought from being tired, after doing research for N I started paying more attention to things going on and that's when I put it all together. I usually don't just get foggy, usually I will feel really tired and then word retrieval and forgetting what I was saying happens. Once in awhile it gets really bad and I start slurring my words, luckily this doesn't happen often and when it does its usually late afternoon so I'm out of work.

 

So with all these weird things that happen to me I guess I do really know I have N, I just wish I could sleep more.



#38 Livi

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Posted 24 August 2013 - 09:51 AM

I have no idea what slurring words is. Maybe I can look it up on YouTube. I have problems with word retrieval all the time, not just when I am aware of feeling more tired than usual. That's why I thought it might be something else. Maybe it is something else.

#39 Beckylaine

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Posted 24 August 2013 - 10:10 AM

I think I may be in denial about brain fog or my may try to attribute it to something else. But yes I forget what I'm doing, what I'm doing, what I've said, seen, & done, sigh. Not always but occasionally. I avoid driving more than 30 min if at all possible. My drive to work is only about 25min, but I have to be there for 6am so I'm usually in a fog until about 8am.

#40 Livi

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Posted 24 August 2013 - 11:03 AM

Yeah I know what you mean about the brain fog. I'll do something and forget I did it. I'll forget why I walked into a room. I'll forget what my point was when saying something. It's so embarrassing.
I am still single and don't know how I will ever meet someone or get married, being such a tired idiot. :(