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

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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?

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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!!

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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?

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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.

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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!!

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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! :)

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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.

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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

 

 

 

 

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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

 

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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

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