valnagy

What Were Your Mslt Results & Diagnosis?

64 posts in this topic

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

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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!!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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. :(

Share this post


Link to post
Share on other sites

marriage is highly overrated, look at how many married people are miserable :P

 

Seriously, nothing wrong with being single.  Nice to have someone around once in a while, I get that, but why is it that we put so much weight on a career and marriage as a measure of worth?  You can get the same level of fulfillment from a cat, volunteer work (especially with kids) and dating once in a while if you really find the urge.

Share this post


Link to post
Share on other sites

Thanks for the smile. :) Do want my own family and kids though.... Someone to love and be loved by.... I'm kind of a romantic <sigh>. :)

Not a measure of worth though. I get my worth from God, not from human standards of status, popularity, wealth, beauty, success, or even what others think of me.

Share this post


Link to post
Share on other sites

marriage is highly overrated, look at how many married people are miserable :P

 

Seriously, nothing wrong with being single.  Nice to have someone around once in a while, I get that, but why is it that we put so much weight on a career and marriage as a measure of worth?  You can get the same level of fulfillment from a cat, volunteer work (especially with kids) and dating once in a while if you really find the urge.

I agree strongly. I am married for 15 years with 3 children 13, 13 and 9.

 

A family is a wonderful, exhausting, loving, draining, expensive and demanding hobby. There is no time off for good behavior, no exit strategy, and is an enormous responsibility.

 

I do not intend to sound negative- just bracingly realistic.

 

I would not trade what I have for anything- and I love being a husband and father.

 

Choosing the role of spouse and parent is more about what you can give to others than what you want others to give.

 

If you want someone to love you and lots of positives without the negatives- there are lots of ways to get that. Dogs, for me, are a great source of unconditional love, happiness, comfort and protection.

 

Family is all of those things combined with stress, financial strain, frustration, selflessness, exhaustion and uncertainty. It is certainly the toughest job you will ever love- if it does not destroy you or someone else in the process.

 

Children are a crap shoot- they go through phases that require enormous patience and guidance. Some have special needs and you may get little back for a long, long time.

 

It is a commitment that requires years of giving with little in return- so those little things must carry enough value and importance to carry you through with a smile on your face and love in your heart.

 

You need to smile at vomit on your clothes and poo on your hands- stains on your carpet- crumbs and spills in our car- late nights and early mornings- hormones- cuts and bruises- illness- drama- arguments- all with a sense of beauty, amazement and pride that is found in nothing else.

 

Marriage and family amplifies your weaknesses and challenges your strengths. Your strengths and resources (personal, spiritual and financial) need to be enough to overcome your weaknesses. It is a very sobering prospect and one that continues to humble me.

 

We also rescue and train abused pit-bulls which seems quite easy in comparison. There is no EASY button or SNOOZE button.

Share this post


Link to post
Share on other sites

That's what I thought about family until I developed narcolepsy.  My family, friends, and co-workers have not been very sympathetic or all that supportive.  They don't even think it's real.  I get more kindness from my doctor.  They were around when times were good, and that's all.

 

Narcolepsy? ... oh, that's nothing.  Get up, drink a coffee!  Amphetamines? ... then I get those condescending stares like I'm a bad person for taking them.

Share this post


Link to post
Share on other sites

Just wait until your family members start complaining about their prostates and menopause- they will be looking for lots of sympathy.

 

Sorry, the bathroom's occupied-you'll have to wait. Sorry about your hot flash, but my windows don't open.

Share this post


Link to post
Share on other sites

I'm 23

160 lbs

5'4"

Female

PSG

AI 0.6

HI 9.9

AHI 10,5

REM AHI 20.7

Supine AHI 11.8

Desaturation index 11.6

Minimum oxygen saturation 88%

MSLT

5 naps

Average sleep latency 0.7 minutes

5 onset REM periods occurred

Previous night had 595 minutes of total sleep time

Test date: July 17-18, 2013

All so new all so confusing! I really hope my sleep apnea = sleep deprivation (especially in REM) = false positive MSLT.

I don't want to be on meds the rest of my life. CPAP machine on the other hand...not pretty but not drugs messing with my brain chemistry.

Any thoughts are appreciated! :)

Share this post


Link to post
Share on other sites

The drugs are a necessary evil, and you should not feel guilty about taking them.  Millions of people take drugs for the rest of their lives for a wide range of issues -- nothing wrong with that.

 

Your feelings are perfectly normal, and I want to assure you that you will get better.

 

Your hyponea index (partial obstruction, not full) by itself could not cause a latency of 0.7 minutes, and REM in all five.  I'm afraid you have narcolepsy.

Share this post


Link to post
Share on other sites

This is my MSLT & overnight PSG results from early 2012. Then I will post my overnight psg & MWT from mid 2013.

A lot of it I don't understand. Yet. I have been diagnosed with narcolepsy, but I am not convinced I actually have it.

 

This is the MSLT, the attached image will have the other info including sleep statistics, events and graphical summary of the PSG.

 

The question I'm asking about the overnight study is: Does it look like Narcolepsy to you?

 

nap 1: 

TIME: 8.43 min SL: 1.5 SOREM: no.

NAP 2:

TIME: 10.40 SL: 2.0 SOREM: No.

NAP 3:

TIME: 12.42 SL: 2.5 SOREM: Yes.

NAP 4:

TIME: 14.43 SL: 3.0 SOREM: No.

NAP 5:

TIME: 16.28 SL: 3.5 SOREM: Yes.

 

As you can see from the MSLT, I do fit the criteria for Narcolepsy. I don't have cataplexy (to my knowledge), I have had severe sleep paralysis in the past (but not now), and I'm unsure about hypnogogic hallucinations. I do have a quite annoying level of EDS.

 

Overnight PSG from 2012

post-12037-0-68359100-1378788463_thumb.j

Sleep Statistics from 2012

post-12037-0-67804200-1378788523_thumb.j

 

 

 

 

Share this post


Link to post
Share on other sites

Results from 2013 overnight PSG

 

Does this look like Narcolepsy to you?

 

Overnight PSG for 2013

post-12037-0-58775000-1378790371_thumb.j

 

Sleep statistics for 2013

post-12037-0-13607800-1378790521_thumb.j

 

Share this post


Link to post
Share on other sites

The clinical criteria for N is 2 SOREMs on an MSLT, by definition, you have N.  The label doesn't really matter though, the treatment for the EDS wouldn't be much different, if at all.  Drugs to keep you awake.

 

Get up to go to the bathroom around 5am? :P

 

Nice REM latency on the PSG though.

 

Here's my PSG from a few weeks ago.  It's sheer madness.

 

IMG_20130814_145257.jpg

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now