Jump to content


Photo

Currently At Sleep Study...

sleep study mslt narcolepsy diagnosis

  • Please log in to reply
15 replies to this topic

#1 AnnieJoy

AnnieJoy

    Member

  • Members
  • 48 posts
  • Gender:Female
  • Location:Arkansas
  • Interests:Ecology
    Environmental Toxicology
    Epistemology
    Philosophy
    Bioethics
    Equine care
    Naturopathic Medicine
    Holistic health
    Theology
    Doctor Who

Posted 20 June 2013 - 11:42 AM

I am currently at my sleep doc, undergoing the MSLT. I did the sleep study last night and it felt awful. It was probably the worst night of sleep I've had in recent memory. I couldn't fall asleep, I was nervous, my heart was racing, and I'm having the same problem today. Perhaps I'm having trouble sleeping because a) I know I am supposed to and a lot is riding on this for diagnostic purposes and B) all the wires and not being able to sleep in a proper position etc. is conflicting. 

What happens if I fail this MSLT and the sleep study lacks conclusive data for N? Does the possibility of positive diagnosis get thrown out? 

 

 

Any tips on getting MSLT results to reflect the DAILY CONSISTENT EDS I experience??? 

 

Sigh. 

I'm afraid I screwed up these tests with the nerves coming into it.



#2 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,102 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 20 June 2013 - 02:45 PM

It took 3 for me to get it. Relax, it'll be fine. And you never know, you might be microsleeping. I was doing REM microbursts during the naps without realizing.



#3 AnnieJoy

AnnieJoy

    Member

  • Members
  • 48 posts
  • Gender:Female
  • Location:Arkansas
  • Interests:Ecology
    Environmental Toxicology
    Epistemology
    Philosophy
    Bioethics
    Equine care
    Naturopathic Medicine
    Holistic health
    Theology
    Doctor Who

Posted 20 June 2013 - 03:31 PM

Okay. Really it took that many? That does make me feel better. I'm just so frustrated. 

  • They'd have to have sensors on me 24 hours a day during my regular life to accurately see what I go through. This makes no scientific sense. Control? NAH. Let's lock annie in a room all day with Styrofoam and plastics and digital screens and not allow her outside and lets pretend this is normal and diagnose her with absolutely nothing as she sits in a lounge chair dizzy, disoriented, and frustrated. Let's do that. It's SCIENCE.

     
     
     
    Maybe the data is better than I thought. I can't stand not having the information they have in their hands right now. 
     
    Thanks "Death Rabbit." 
  •  


#4 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,102 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 20 June 2013 - 04:48 PM

Yeah, the first two times, they tried to say it was sleep apnea, even though my blood oxygen only ever dipped 1% out of the normal range. It was just because I was fat then. So I lost about 90% of my excess weight just to be taken more seriously. And by the third sleep study, I guess I was so used to the process, it didn't even phase me. Also, get there early if you do another one and bring an iPod or something and just chill out beforehand. It helps.

 

EDIT: And yeah, I know DR is a weird handle. I've had it since I was about 15, blowing people away in video games online under that alias, and ever since, it's always been my online handle.



#5 lkl

lkl

    Member

  • Members
  • 61 posts
  • Gender:Female

Posted 21 June 2013 - 05:52 AM

I had to do 3 sleep studies ( 2 with MSLTs the following day), before I was diagnosed with narcolepsy, and even my most recent MSLT wasn't really text-book conclusive. This is my post where I talked about the results from my MSLTs: http://narcolepsynet...ble-narcolepsy/



#6 AnnieJoy

AnnieJoy

    Member

  • Members
  • 48 posts
  • Gender:Female
  • Location:Arkansas
  • Interests:Ecology
    Environmental Toxicology
    Epistemology
    Philosophy
    Bioethics
    Equine care
    Naturopathic Medicine
    Holistic health
    Theology
    Doctor Who

Posted 15 July 2013 - 11:43 PM

So I haven't been posting in the forums, mostly because I've been avoiding going off on a rant. 

 

I always feel like I come here panicking... Sigh. I'm sorry. 

The MSLT came back exactly as I feared. 
Not textbook Narcolepsy. My sleep times were all over the place. 8, 8, 11, 6

And during the night the doc said there was only one problem. He said I have periodic limb movement and was waking up several times an hour for a few seconds and then going back to sleep. 

I told him that night, and that day felt so out of place. So irregular to me. 
He proceeded to rant about "human perception of sleep time."
He basically threw out Narcolepsy when he read my MSLT. 

Which makes me so angry.

It's like he forgot about our first meeting when he said he was "85% sure I had Narcolespy" and I gave him "the best description of Cataplexy {he's} heard in 15 years."  Probably threw out my cataplexy survey too... 

I felt so closed in. Like I wasn't being heard anymore. 
Like we were so close to a solution and he took it away. 
He proceeded to say things that, regrettably in my vulnerable state, I took to be personal hits. Things that suggested I was doing the tiredness to myself. Or that the fact that I was 17 in a fast paced world was suddenly the explanation. 
When a week before I had a "debilitating neurological disorder."

 

He lamented that I needed to be keeping a scheduled wake and bed time and that I would need to understand that I might be the kind of person that would have to deal with taking a nap at my lull time... which, he decided, was about 4:00pm everyday based on my 6minute sleep time at the 4:00 nap on the MSLT.... 
I wanted to scream. 
Like I was doing this to myself. Like I had done it. Like all of this was my fault. As if I didn't feel guilty already. For the tiredness. For being there. 
As if we were spending hundreds of dollars on a sleep specialist because I HADN'T tried the perfect sleep routine and the late afternoon naps. 
I told him point blank  "Doctor, I am tired all of the time. Not just at 4:00pm." Fighting back tears here.
That seemed to have caught him off guard. 

He agreed to see me again to "help me figure out the problem" before school starts. 

I was given Sinemet for the limb movement. I tried it for a week and noticed no change in daytime sleepiness and the dreams were still bad. 
I called and gave him this information on a message I left. 
His secretary called back and I was to pick up Nuvigil to try as a sample for a few days. 

I am so confused.
I don't really have a diagnosis. But I have a drug that is given to Narcolepsy patients.

 

 

I guess my fear is that if Narcolepsy  is not recognized, I won't get the help and support I need at school, in medications, in the workplace. 

Idiopathic Hypersomnia doesn't explain everything. And periodic limb movement, while it is apparently present, doesn't either. The hallucinogenic dreams, the cataplexy... it just doesn't add up. 

 

Do you think Narcolepsy is completely off the table now?

After reading much information and talking to many N patients--I really think this is my answer. How do I get my doctor to keep pursuing this with me instead of shutting me down? 

 

I start the Nuvigil samples tomorrow. 
I may try to keep a nap schedule on the meds. 
I just can't imagine being alert all day. 
I haven't felt that... since I can remember. 

 

I know most of you went years before you got a diagnosis. I really hoped I could get it sooner rather than later. I'm skipping my senior year for goodness sakes. Decided I couldn't do another 8:45 to 3:45 schedule with studying at night. Going straight to college instead, and I really need help from my school to do as well as I can. Without a diagnosis... I have no help. 

 

I can't do that again. 



#7 Hank

Hank

    Member

  • Members
  • 986 posts
  • Gender:Male

Posted 16 July 2013 - 07:34 AM

My original diagnosis was periodic limb movements. I believed it. I was treated for it. My night sleep "improved". I still had a struggle through the day time.

Eventually, I went to a new doc and she told me PLM is a symptom, not a diagnosis. PLM is either primary or secondary. It is common in the elderly as a primary diagnosis- it just happens without a cause. It secondary to end stage renal failure, severe anemia and Narcolepsy.

So, I had been diagnosed with a symptom. For me, PLM was a minor and annoying symptom but objectively visible during the tests. PLM became "diagnosis" that caused all the "symptoms" of my yet undiagnosed Narcolepsy. PLM rarely requires treatment with medication.

When I honestly reported my symptoms of EDS, I was essentially marginalized as a "complainer". My doctor told me to get more exercise to help with EDS- so I trained for and completed a Triathlon. Still no change in EDS.

Your doctor is at least listening to you by offering you Nuvigil. If the PLM is treated and the symptoms continue, then that says something.

The difficult part of the N diagnosis is that every other possible cause of EDS needs to be ruled out first. Until the diagnosis is made, we are often not quite taken seriously.

So, persevere through this. Communicate with your doctor. Do your homework. Get a second opinion to confirm a diagnosis. Change doctors if you determine another is a better choice.

Stop when you get to the bottom of this- Do not settle for a best guess- you want a Diagnosis. I truly hope that you do not have N. If you do have N, I hope that you know it.

#8 Megssosleepy

Megssosleepy

    Member

  • Members
  • 433 posts
  • Gender:Female
  • Location:DreamLand USA

Posted 16 July 2013 - 09:25 AM

The only thing I am confused about is if you have Cataplexy you have N they co hand in hand I thought.  So, does the doc believe you have C or is he unsure about that?  



#9 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,102 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 16 July 2013 - 10:43 AM

So did you have any REM in your naps? It might not be a SOREM, but if you REM'd in all four of those naps, I'd say that's good enough to support N. Typical REM latency shouldn't be until 30 minutes at the earliest and more often its usually 45 min to an hour. But do the due diligence. Follow a sleep schedule and do everything he says. It gives you more ammo to spit back in his face if he keeps trying to blame you. I was blamed for my weight and inactivity for years. So I dropped 85lbs and started working out regularly. That's when they began to listen.



#10 BrainCloud

BrainCloud

    Member

  • Members
  • 13 posts
  • Gender:Female
  • Location:Michigan
  • Interests:Just about anything creative, drawing, sewing costumes, creating reborn dolls. Star Wars, Star Trek, LOTR, etc...

Posted 16 July 2013 - 03:51 PM

What about if you only REM for say 3 out of the 4 naps, or maybe 2 out of the 4 naps, would they discredit the Narcolepsy diagnosis?  I had my latency test yesterday with my sleep test Sunday night.  I'm afraid I failed it because of the same reasons AnnieJoy mentioned.  This was NOT a typical night/day for me at all.  :(



#11 Hank

Hank

    Member

  • Members
  • 986 posts
  • Gender:Male

Posted 16 July 2013 - 04:04 PM

2 REMs during the MSLT meets the standard for N diagnosis. I hit REM on 2 of 5 naps on my MSLT - 2nd and 5th. Sometimes the test needs to be repeated in order to catch 2 sleep onset REMs.

However, just sleeping during the naps shows evidence of extreme sleepiness. The normal person would take about 20 minutes to fall asleep and would not sleep more than once or twice.

The testing environment is not typical for anyone. But it is quiet and dark and reasonably comfortable. Our diagnosis is made when our eyes close. So, something was revealed during the test- it may not have been everything needed- but if you have N, something not normal would show up- not just nothing.

Staying relaxed was the biggest challenge. Anxiety is very stimulating and that does not help.

#12 BrainCloud

BrainCloud

    Member

  • Members
  • 13 posts
  • Gender:Female
  • Location:Michigan
  • Interests:Just about anything creative, drawing, sewing costumes, creating reborn dolls. Star Wars, Star Trek, LOTR, etc...

Posted 16 July 2013 - 04:46 PM

I know I dreamt during one of my naps because it woke me up, though I didn't remember falling asleep.  I dreamed my husband & I were almost in a car crash/accident.  I had other brief moments were I'm not sure if I was dreaming, or if it was just hallucinations with my eyes closed.  It didn't feel like I slept, but I remember dreaming.  Briefly.  I sure hope it's enough for a proper diagnosis, I really hated my tests, I missed my husband and kids so much.  I felt like a Veal in a booth sitting in that room waiting for naptime.  Then when it finally was naptime, I lay there finding myself thinking "Has it been 20 minutes yet?  When is he going to interrupt me?"  Erg!



#13 AnnieJoy

AnnieJoy

    Member

  • Members
  • 48 posts
  • Gender:Female
  • Location:Arkansas
  • Interests:Ecology
    Environmental Toxicology
    Epistemology
    Philosophy
    Bioethics
    Equine care
    Naturopathic Medicine
    Holistic health
    Theology
    Doctor Who

Posted 18 July 2013 - 03:51 PM

Death Rabbit: I do not think I went into REM in all four of the naps. I will have to look at my notes because I don't remember what he said. I just remember that I did fall asleep in all 4 and had to be awoken by the technician from my sleep. 

Thank you Hank! (And you are definitely right about the anxiety on test day--that is most likely what messed me up, and what will always mess me up during these tests, unfortunately) I have been doing everything the doc told me to do. I also have severe anemia, which of course, if affecting my tiredness due to low ferotin levels. We are working hard to get my iron up. I've been on supplements for years but I can't ever seem to absorb everything I need. I'm on prescription supplements double the dose most people take for anemia.My sleep doc is frustrated because this problem could be solved in an afternoon with an IV treatment, but insurance won't pay for it unless the pills absolutely don't work. So I'm on the iron pills for a few more months as well as birth control to regulate my cycle and lower the amt. of iron lost. I seem to be willing to try just about anything to get my memory and wakefulness back. 

 

Megssosleepy: I filled out a cataplexy survey, after my first appointment, but he has yet to revisit the subject. If what I do indeed have cataplexy, I have yet to have a full on "rag doll" episode. I can drop things and become extremely unbalanced and unfocused. The major facet is that I slur and mumble speech with strong (usually panic ridden) emotions. Ex: during confrontation, I cease up and can't seem to respond to questions. I forget words and everything becomes very hazy. I typically am very sleepy afterwards but may or may not fall asleep completely. This can make even just daily conversation difficult if I am already stressed and something is asked of me I am not prepared for. 
I suppose my doc dismissed it for now as just something that goes with the daytime sleepiness. Like an effect of the fogginess. 

 

The meds for PLM didn't seem to help much for daytime sleepiness. At night the only difference I really noticed was that I would wake up in the middle of the night at least once for about 5 minutes and then go straight back to sleep. 

This is my third day on Nuvigil and also the third way we have tried it. First day I took half in the morning (9am) and that was it. I was jittery and almost hyperalert for one hour and then was back to normal afterwards. At about 12 during lunch it felt like a caffeine crash (I have not been on caffeine for over a month) and I was tired and foggy. That night I had normal (terrifying but normal for me) dreams. 
Yesterday I took one half in the morning and one in the afternoon. The morning didn't seem to do much either. I was having clear conversations and memory recall for about an hour and then went back to normal. Took the second half a little after one and it was the same. All day I was with friends who knew I was trying something for my tiredness and they gave me feedback (LOVE these people!). At about 4 I met my boyfriend who observed me with the most side effects (or the result of the meds wearing off).  I was dizzy and a few times had to hold on to things to make sure I didn't fall over while walking. I was very foggy in conversation for a couple hours, would put my head down to rest for a little while (not fall asleep completely) bounce back for another little while, and then get foggy again. I asked him if he noticed any difference from the last few weeks without the meds and he said that I seemed MORE tired... 

 Oddly I was awake longer that evening and just couldn't bring myself to sleep at 10:30-11 like I've been trying to do. Finally went  to sleep with a small headache a couple hours later. 

 

I woke up very late today, slept right through alarms and even text messages. This time took 1 whole 150mg Nuvigil with a glass of water at about 11am. I haven't been up and around very much today so I'm not noticing things like how I am in conversation. But I don't feel very awake--I also don't feel like I could drop into REM sleep at any second. So... it's weird. I'm awake, but I'm foggy.

 

Kind of like normal for me. 

 

I almost FEEL like a complainer. It is frustrating that I know my doctor might wonder why the meds aren't drastically changing things for me and become suspicious or discouraged with my case--but at the same time, I want him to know how I'm reacting to the meds... And I don't seem to be reacting very much. Which is weird. It's a stimulant. I feel like I ought be experiencing a caffeine high or something, but it's like all I get is the crash. 

I'm going out of town for a debate camp. So I'll give it a try (got a prescription) for a week. It will be easier to keep on a schedule during this time--which will be good for control. But I don't know if I can do this... falsely awake thing for very long. I will probably do the half in the morning, half in the afternoon schedule and I may take a short nap or at least rest in the afternoon to help recharge. 

Do you think a stronger dose would help? Or will this med just not do much for me other than jitters? 
 

Trying to be patient as I do everything the doc says.



#14 DeathRabbit

DeathRabbit

    Member

  • Members
  • 1,102 posts
  • Gender:Male
  • Location:Rocket City, USA
  • Interests:Music, video games, exercise, hookah, not feeling like crap

Posted 18 July 2013 - 04:51 PM

Be patient with the docs and do what they say, but also remember they work for you, so don't let them bully you either!



#15 lkl

lkl

    Member

  • Members
  • 61 posts
  • Gender:Female

Posted 19 July 2013 - 05:57 AM

Have you tried taking a vitamin C supplement with your iron tablets and taking them on an empty stomach? Sometimes those things can help with iron absorption.

 

Having a trial of taking the Nuvigil, while you have a more regular sleep/wake/nap and medication taking schedule, should help give you a better idea of whether the Nuvgil is helping. Also don't be afraid to be honest with your doctor, about how the Nuvigil is going for you. Most people don't find the right medication and/or dose the first time round. It is often a process of trial and error, and doctors usually expect this.



#16 cremesoda34

cremesoda34

    Member

  • Members
  • 15 posts
  • Gender:Female
  • Location:Indiana

Posted 19 July 2013 - 09:19 AM

I hate to even mention this because just the thought alone sounds horrible but here it goes. Maybe your doc can do a spinal tap to check for cataplexy the HLA  test.  I had rem on all four naps all under 7 minutes. rem at 4,6,5,and 7 minutes.  I had a normal poly the night before.  I will tell you that I have days where all is normal, not alot of those days but they happen. Maybe you had a normal day. 

   I myself would go for a second opinion and ask for another mslt test be done or the horrible tap I mentioned above :(







Also tagged with one or more of these keywords: sleep study, mslt, narcolepsy, diagnosis