Newly Dx'd- A Little Help?

8 posts in this topic

So I took my PSG and MSLT at the end of June and finally heard back from the sleep doctor about two weeks ago. He gave me a diagnosis of N.


I asked for a written copy of the report and when I got it I became a bit confused.


My nighttime study showed a normal amount of REM (25%), no breathing problems, no PLMS, etc. It also says I spent a prolonged time in Slow Wave Sleep, which I’m to understand is the opposite of what usually happens with N? In addition it took me an hour to fall asleep.


During my MSLT my average sleep onset with over ten minutes, well within normal range, with the presence of REM in 3 out of 4 naps.


So it seems like I’ve been diagnosed based solely on the REM sleep in my naps.


I guess what I’d like to know, is if anyone else experienced prolonged sleep onset times as well? Can something like that be caused by anxiety or other circumstances? (as I’ve never slept anywhere other than my own bed, the room was ice cold, the air conditioner was rather loud, etc) Should I be questioning this dx or is the presence of REM in my naps enough?


I've never just fallen asleep anywhere. I've always been able to push through the sleepiness until I can get to a bed, which may be hours, despite how impossible it seems at the time (and how little I actually get done in the mean time). From what I can tell this is not the normal N experience?


My knees do get a little weak when I get frustrated, usually to the point I end up leaning on something without realizing it.

My doctor also looked at my weird when he asked if I ever experienced vivid images or sounds that were not there throughout the day and my response was "You mean daydreams?". Apparently daydreams are supposed to be a collection of runaway thoughts....not actual vivid images and sounds when you close you eyes for a few minutes?


I know that I have quite a lot of the symptoms, by my mind keeps sticking on the few inconsistencies (Excess slow wave sleep, prolonged sleep onset times, never actually falling asleep until I allow myself, etc) and it would make this dx a little easier to digest if anyone else had similar experiences?


Share this post

Link to post
Share on other sites

20 min latency is normal. 10 is not. If you slept well enough at night and hit REM during 3 of 4 naps, the N diagnosis sounds spot on.

Read up, ask questions and let yourself get used to this- it is big news. I was shocked that all the quirks I had been managing were actually symptoms of a disease I knew nothing about.

I never let myself falll asleep - I .fought it tooth and nail. That is not normal. It is not supposed to be that hard to stay awake. And this illness affects everyone a bit differently.

Share this post

Link to post
Share on other sites

I am the same way.  I never let myself fall asleep but like Hank said I have to exert a lot of energy.  To adapt to life I pretty much had to learn how to be extremely hard on myself to the point of anxiety about my performance at pretty much all times.  When I get weak I also lean on things, and if I am walking I learned to hold my breath for long periods of time (unconsciously I did this, it is something that people have always pointed out but I didn't really think about the timing of when I hold my breath until a Dr. suspected N...I do it even when I think really hard from time to time).

Share this post

Link to post
Share on other sites

To adapt to life I pretty much had to learn how to be extremely hard on myself to the point of anxiety about my performance at pretty much all times.  


Well I guess that explains my obsessive levels of perfectionism ^_^

Share this post

Link to post
Share on other sites

I too was diagnosed a few months ago based on the nap test.  I didn't sleep long enough at night because it took me too long to fall asleep and I woke several times during the night.  Normally I am not a napper - they make me cranky and foggy and ruin me for the rest of the day.  I fell asleep in four of my five naps (though I really thought I had slept during all of them), and in the four where I actually slept I hit REM in all of them.  There's no ifs ands or buts about it - REM during naps = Narcolepsy.  I, too, had rationalized a lot of symptoms that I've been experiencing for years and am still coming to terms with the diagnosis.  It seems to me that not everyone experiences the symptoms in the black-and-white way that medical text puts them.  Cataplexy, hallucinations, and paralysis differ from person to person.  Additionally, not everyone experiences all of the symptoms that are possible with narcolepsy.  



My advice - don't harp on the inconsistencies because you'll just make yourself crazy and it will make the diagnosis harder to accept.  Do your homework with your own history and the information about narcolepsy that is available.  Come up with questions that will help you understand, cope, and put your mind at ease to discuss with your doctor.  Most importantly - make sure you have a GOOD SLEEP DR!  Forums like this one are a great resource too.  I've been able to talk to people who have experienced similar things and have been coping with N a lot longer than I have - and I've found it very comforting.  Knowing you're not the only one, knowing others have found ways to cope, knowing there are people out there who already have or are still going through what you're going through, knowing other people have found a way to live wonderfully fulfilling lives without letting N hinder their abilities... It's important to have a good support system.  People at the network have been very helpful and supportive of me - I'm sure they'll do the same for you!

Share this post

Link to post
Share on other sites

DreamFox it is good that you are looking at details to truly understand your diagnosis instead of just taking what the doctors have told you.  I believe you should take an active role in your diagnosis and treatment in all things to help the doctors do their job correctly!  They are human and the more input they get from you the better you will both be able to manage your diagnosis.

-My experience was also that I got enough REM sleep overnight during my PSG test.  I also got enough slow-wave sleep but my patterns were a bit irregular so they had me stay for the MSLT.  Then, of course, I hit REM sleep in every nap.  As Apparently said above REM in a nap is a big indicator.  It shows an altered sleep cycle - slipping into REM sleep that quickly is not the norm.

-N does affect everyone differently and to varying degrees and, as I am finding out now 3 1/2 yrs after diagnosis, with many behavioral habits that we may have developed to deal with N before knowing of it.


-I have always had an issue with being tired, when I sat down.  Not a lack of energy, mind you.   I played sports growing up.  Played on the basketball team in high school and played 6 days a week in college, but once in the classroom I struggled all the time to stay awake and often did not.  Even subjects I enjoyed, especially history, I could often not be fully awake throughout the whole class.  I recognize now that my symptoms definitely started as a teen (which seems to be commom) as I would microsleep through classes.  Waking up enough some days as I walked from class to class to almost make it through the next one.  There were better days than others but I always slept on the bus - it was a 45 min ride for me.  Just always thought, as did my parents, that I was an active teenager who was catching up on sleep where I could.  I also was smart enough in school to do pretty well regardless of my EDS.  Yearly physicals- no problem- I was a healthy boy, young man.  I do not remember any issues with sleep being addressed when in my teens or into my 20's.  

-Ok I won't go through my entire life.

I now can recognize throughout my life many occurrences and situations that can be better understood (I hesitate to say explained by) knowing that I have N.  For me: I fall asleep very quickly, within 2 mins for each nap in the MSLT.  But I do not nap regularly, never have (except for the bus!)  I have had difficulty staying in a good sleep pattern, good sleep hygiene.  I am not sure if it would be categorized as cataplexy, but when tired my head will drop - I always fought that (and fought with my wife about it unfortunately).  And automatic behavior has been an issue for me - writing notes, eating, driving.  No HH for me though.

-So it hits us all differently, sorry to ramble a little.

-You are right to ask questions because you do have to get to a point of understanding for you so you can move forward!

Share this post

Link to post
Share on other sites


My advice - don't harp on the inconsistencies because you'll just make yourself crazy and it will make the diagnosis harder to accept.


I think my main problem here is that there are inconsistencies, even though all of you have mentioned that it's not the same in any two people with N.


I've been trying to figure out what's wrong with me since mid high school. At first I was told it "was just a phase teenagers go through" (presumably in reference to the tiredness- I guess she assumed it was the result of inconsistent sleeping patterns).

Then I was told that they couldn't explain the sleepiness, but my lack of focus (which I'm now thinking may have been a "sleep attack" which I fought and simply ended up asleep in my head- even if my body was still awake) was very clearly ADHD, diagnosed by a neurologist and everything.

A year later they told me I was sleepy because my "level of perfectionistic anxiety" was "causing a deep level of depression".

They (sorry! "They" is my primary care doctor) then sent me to see a therapist when it seemed I would not "snap out of it".

In her words, "If you're depressed, you've got to be the most optimistic and enthusiastic depressed patient to ever exist"....an obvious oxymoron... and that "anyone who talks to me consistently can tell I'm not suffering from ADHD".

I went back to my primary care and told her this, they did more blood work. I'm still not anemic and my thyroid levels are fine. So she's "going to refer me to an endocrine specialist, because if it's not psychological it's got to be a metabolic problem"- please note no one has ever brought up my sleeping inconsistencies since the first time.

The Endo did a more through work up, my A1C is nearing pre-diabetic and they found mass amounts of antibodies in my thyroid. Naturally this was thought to be the problem. They put me on metformin which brought my A1C level back down to normal and have not treated my thyroid because my TSH and T4 levels are still optimal. 

Except despite my change in diet and increased exercise routine, I was still exhausted for most of the day. My Endo told me she thought it might be a "learned state" since I spent so much of my life tired, I simply had to give myself time to adjust to the idea of not being tired.

Believe it or not, I actually went along with that. It wasn't until one of the RN's at work (I work for a cardiologist) started asking me why I was always so tired, and did I get enough sleep at night because "you're only 22 and your energy levels are just not normal" that I decided to go back to my primary and get a referral for a sleep specialist (we refer patients at work to the sleep doctor I asked to be referred to, the Dr. I work for recommended him specifically (And I would trust the Dr. I work for with my life))

The first question he asked me was "How long have you been experiencing sleep related problems?"- A: "How long have I been experiencing it? Or how long have I known it might be a sleeping problem?"- Cue Immediate PSG and MSLT testing.


I suppose after being "diagnosed" and then un-diagnosed so many times in the last 8-9 years, I'm just kind of naturally skeptical of ANY diagnosis. Ultimately, I just want an answer for what's wrong.

Share this post

Link to post
Share on other sites

"there are inconsistencies"

I think that little phrase, above, is hitting the nail on the head.

That is, as to 'why' Narcolepsy (with or without Cataplexy), in a large part (being aside/apart from the stereotyped misunderstandings from media), is so hard to grasp and difficult to begin, to understand.

It is those who live with it, that begin to understand it, likely, the best.  So many doctors do not fully, or nearly at all, actually grasp it.

For those who live with someone with the disease, close family or the close loved ones, they can with a open mind and 'willingness' to understand it, begin to; but experiencing seems to be the clutch, to understanding it.

Inconsistencies.  There are so many, not only is there a difference between each one who has the condition, the disorder, the disease, there is a variability of each symptom.  And, not only between the different persons with it, but for many there is over time not only a progression of and varying of the symptoms, but degrees of morphing of, or flip and flop of, symptoms.

Perhaps there is no consistency, to it at all, even some do not experience tiredness (or at least recognize it, as was my experience prior to confirmations after years of Cataplexy collapses and thinking of what I was experiencing as fatigue, not tiredness)...


It takes some time to grasp, you are in a good place, learning by reading about the disease and other experiences, stories and discussions is super helpful.


Hopefully, you'll find some relief upon your path, here soon.

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