12 replies to this topic

[dasikins]

Ah!  Next week I meet with the women who 'read my PSG.'  The nurse called to tell me everything looked normal..not even the doctor.  After seeing my last two specialist I am running out of options.  Seriously.  I am healthy as a horse and I have no joint pain for CFS.

 

I was looking up her credentials to see if she specialized in sleep medicine, ect.  A previous thread on here indicated it was best to find someone who focuses on sleep medicine and not a pulmonologist.

 

Um, she is a: board certified internal medicine, Pulmonology, and sleep medicine.  This does not sound good for my diagnosis.  Plus, even if she has no experience, I would fail the MSLT.  I could not fall asleep for the life of me for me PSG.  My mind new it had to so it didn't want to.  Plus it was freezing!

 

Are there any questions you would recommend asking her specific to Narcolepsy or other sleep issues unrelated to pulmonology?   Do her credentials sound ok?

 

I tried getting in with a neurologist, but they require a letter from my doctor and she won't send one yet.  She actually told me ' well your on stimulants, see if those help.'  UM.  Yep.  Their great-I love feeling irritable and depressed while still having EDS in the afternoon once they wear off.

 

I am just ranting.  It's unbelievable how hard it is to find someone who can diagnosis (or throw ideas out at least) or someone who doesn't want you to just disappear.  

 

 

[Tre]

You wrote that you take stimulants...were you taking them near the time of testing?  I had this test twice...the better of the 2 asked if you were comfortable with temp etc. before the night test started, when they had to fix my wires (kicked em off in the night) and before each daytime nap.  It is required by the test that you be as comfortable as possible and the environment be one able to sleep in.  They also game me a windowless room...Not that they cared in the second test...jackhammers outside the window don't really help one sleep -.-

I've seen a pulmonologist and 2 neurologist and one of the neurologists is the person that screwed crap up so it's all about the doc personally although a neurologist would have more textbook experience with neurological disorders it doesn't mean that a pulmonologist couldn't be better if they take the time to read and take interest in that area.  I think I would be more interested in knowing how many people with narcolepsy the doc has meet or even treated.

[dasikins]

You wrote that you take stimulants...were you taking them near the time of testing?  I had this test twice...the better of the 2 asked if you were comfortable with temp etc. before the night test started, when they had to fix my wires (kicked em off in the night) and before each daytime nap.  It is required by the test that you be as comfortable as possible and the environment be one able to sleep in.  They also game me a windowless room...Not that they cared in the second test...jackhammers outside the window don't really help one sleep -.-

I've seen a pulmonologist and 2 neurologist and one of the neurologists is the person that screwed crap up so it's all about the doc personally although a neurologist would have more textbook experience with neurological disorders it doesn't mean that a pulmonologist couldn't be better if they take the time to read and take interest in that area.  I think I would be more interested in knowing how many people with narcolepsy the doc has meet or even treated.

No I just started them.  It was a good month after my testing.  I usually wake up once a night though..usually NES..aka to eat.  

Yah, the threads here HAVE suggested seeing a Neurologist, but honestly you can't just walk into one.  Plus they are not usually in private practice unless you live in a major metropolitan area.  

 

I hope some one can give advice here.  I will gladly give it back when I know more lol.  

 

Were you diagnosed with N?  I think you posted before, but I can't remember-damn ADHD lol.  What did your plum say?  Did you just find another one until you got help?  How did you find a good one?

[dasikins]

Woo Hoo!  Doc says he is 99% certain that I either have narcolepsy or IH (at least based on what I have told him.)  He treats over 20 patients with narcolepsy, which gave me some hope.  

 

I am only excited, because for 10 years I have felt this way.  I need to figure out what it is so I can function (as you all know.)  I just want to know.  If it's not this I am out of options other than autoimmune diseases, which rather unimaginable.  

 

Now I just need to take the MLST.  They are making me go back in over night for a good night's sleep and then all day the following day.  I told him my concerns about the temperature, noise, and anxiety from it.  Once my brain knows I HAVE to do something it stresses out.  Plus it has open windows.....it's bright.

 

Anyhoo, any recommendations on how to prepare for the MSLT?  What's it like?  I know I take 2 hour naps?  Did you guys actually sleep for two hours each time?  Eeek...I can tell this will be hard..I am already nervous to take it which means I won't be able to fall sleep.  

[MINItron]

Woo Hoo!  Doc says he is 99% certain that I either have narcolepsy or IH (at least based on what I have told him.)  He treats over 20 patients with narcolepsy, which gave me some hope.  

 

I am only excited, because for 10 years I have felt this way.  I need to figure out what it is so I can function (as you all know.)  I just want to know.  If it's not this I am out of options other than autoimmune diseases, which rather unimaginable.  

 

Now I just need to take the MLST.  They are making me go back in over night for a good night's sleep and then all day the following day.  I told him my concerns about the temperature, noise, and anxiety from it.  Once my brain knows I HAVE to do something it stresses out.  Plus it has open windows.....it's bright.

 

Anyhoo, any recommendations on how to prepare for the MSLT?  What's it like?  I know I take 2 hour naps?  Did you guys actually sleep for two hours each time?  Eeek...I can tell this will be hard..I am already nervous to take it which means I won't be able to fall sleep.  

 

It's a 20 minute nap every two hours. They should be using a room with blacked out windows if it has windows at all, and you need to insist on the temperature being reasonable. You should also do everything you can to make sure that you are ready to go to bed when they are ready for you the night before, even if that means getting up unusually early that day. 

 

I really can't help you with the anxiety. I experience anxiety induced cataplexy myself, but my anxiety tends to be very transient. I NEVER have a problem going to sleep. I slept for all five naps. The maximum time was eight minutes, and the minimum was around two.

[Bobbi]

I agree..wake up earlier than usual and make sure not to take any naps before you go in for the test. I did not sleep as well for my 2nd sleep study, but had the MSLT the next day. They woke me up at 5 am and I had to stay up until 8 am, so I was pretty tired when they told me to get back in the bed. I went to sleep all 4 naps ( only needed 4, because my max time going to sleep was 3 minutes and min time was 30 seconds..and hit rem in 2.. Good luck and hopefully all will go well!

[dasikins]

Thanks guys-yes that's a good point.  I should wake up extra early that day.  Even if I can't sleep well in the PSG (it can't be worse then the first time) I should be ok during the naps.  

 

Ok so you only have 20 minutes to fall asleep?  And then what do you do for the remaining part of the day? Wow, its 10 hours.  Do they feed you or do you just sit in your room?  

[2Tired4This]

During my MSLT they gave me ~15 to fall asleep. Then during that 15 u get the other 5 if you actually fell asleep. Then just when you think youre about to get some restful sleep they wake you up. =/ that rlly put me off haha. Then u spend 2 hours doing nothing. My room had cable so I was lucky. Then you do it all over again 3 more times or 4 if necessary. I only did 4 naps because I fell asleep in under 1 minute 30 seconds on all 4 of my naps. IDK what my REM latency was though. 

 

My lab was pretty lax about what you did inbetween naps. They said do whatever you want for 2 hours just dont fall asleep haha. I brought my own food so i snacked in the kitchen when I was hungry. I walked around the lab, played on my phone, watched TV, just w.e. to pass the time.

 

IDK about waking up early. Just try and realign your schedule during the prior weeks so that you will get tired when youre supposed to take the night test. If you stay awake even longer than you would during a normal day then you kind of botch the results. 

 

As for the cold, I was told that the reason they keep it so chilly is that the conductive paste they use to attach the electrodes onto you starts to run and melt if it gets any warmer. That's just what my tech told me in my lab. Could be different for you. IDK. 

 

I'm glad you like your doctor too. Experience is definitely a MUST for Narcolepsy. When I asked another doctor about what types of doctors treat Narcolepsy and why, she said that it ranges from neurology, pulmonology, psychiatry, and sleep medicine specialists. Because nobody knows for sure exactly what causes Narcolepsy it's hard to put it into any one category. She also said she didn't know why pulmonologists treat Narcolepsy haha, but that it's just the way things are done. 

[MINItron]

The standard protocol is a 20 minute nap every 2 hours. They fed me lunch, had a TV to watch, and let me wander around as I pleased to stay awake in between.

[sk8aplexy]

Wandering around with the nodes and large, Flavor Flav like clock, node connector unit; is awkward, yet to a point manageable.

I brought a jigsaw puzzle, which I did only the sides of before leaving after the 5 naps, on the floor (I don't recommend being on any hospital/lab floor though...).

They asked me each nap, about whether I dreamed, and what about; they actually wanted descriptions...

Also, call them out upfront and even write it out on the comment/questionare; for instance, during one of my naps someone opened the door around 5 to 10 minutes in. 

As a result of such disruption, my sleep latency was 9.5 minutes (they admitted the disruption and that it effected the mean #).  Because that was not below 8 minutes, my diagnosis resulted in being not 'full or 100%' as they worded it.  'Probable' it is, and that is fine; as all I was after was confirmation that I wasn't epileptic or with some other matter.

2tired4this said it well; the understanding of N is very limited and still quite unknown.  Don't get your hopes up nor too discouraged by any of it.

And, Good Luck.

[Bobbi]

It was a pretty boring day.. I had a tv in my room and I made sure to take lots magazines to read. I think that made me even more tired in between naps. I was ready to get in the bed everytime..and hated when they woke me up 20 minutes later They gave me some nasty waffles for breakfast ( I didn't eat) and a microwaved chicken sandwich (I didn't eat ) and chips for lunch. I was STARVING when I left. If I had known, I would have taken a muffin and maybe some cheese crackers or something. I did take a bottle of water with me. They didn't have a shower at the place I had my 2nd one done .So I left the place with the paste all in my hair..I wish I would have taken a cap with me to wear home.

[munky]

I'd already gone back to school when I had my test, so I took homework with me, as well as the iPad so I could play games and a book to read. The tech brought pizza and a bottle of sprite for me, but the paperwork they sent me ahead of time told me they'd provide meals, so I knew it in advance. I still took some snacks, in case their idea of a meal was something I didn't like ... so it wouldn't hurt to pack something that doesn't need refrigeration.

 

I was also the only person there that night, so I chatted with the tech between naps, which helped keep me awake. If there are other people there getting tests done, though, they may not have the time to chat. Or, they may not be interested in chatting ... Guess I got lucky.

 

I didn't think I'd fall asleep for any of the naps, but I fell asleep for all of them (we did all five), with REM in two of them. And, yes, we had the questionnaire after every nap. I remember the tech asking if I fell asleep after each nap. For the two with REM, I told her I must have, because I dreamt, but she didn't ask me what the dreams were about. For the other three, my answer was, "I'm not sure. I guess I must have, if it's been 20 minutes, because it feels like it's only been five." Neurologist, however, told me that I had, indeed, fallen asleep in all five naps, though only 2 had definite REM, both of them at sleep onset ...

[dasikins]

Thanks so much everyone!