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Just Diagnosed And Unsure


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#1 CatLady

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Posted 04 November 2013 - 05:38 PM

Hi Everyone:

 

Like the title says, I've just been diagnosed with N and am not sure what to make of it.  I guess I'm having trouble believing it because my results seem borderline to me and I don't have a lot of the issues that  people have been talking about on here.

 

My MSLT results were:

Nap 1: Latency to sleep onset   6.5m   No SOREM

Nap 2: Latency to sleep onset   20m (didn't sleep)  No SOREM

Nap 3: Latency to sleep onset   5.5m   No SOREM

Nap 4: Latency to sleep onset   14.5m  SOREM  1m

Nap 5: Latency to sleep onset   4.0m   SOREM  3m

 

I had a PSG the night before with no signs of sleep apena.  I had a effenciey rating of 92.29%.  I know that two SOREMs are indicitive of N, but a lot of the other symptoms are mild or non-existant.  I dont' have sleep paralysis.  I do have EDS, but I don't have sleep attacks.  I mean, I would be more than happy to have nap during the day, but usually it's something that I can put up with.  Only once in a while do I HAVE to sleep during the day, like a couple of times every two weeks or so.   I don't have cataplexy.  I do have sleep hallucniations rarely.

 

Sorry about the spelling errors, I wasnt sure where spell check is on this.  :)

 

Any ideas or help you all could provide would be much appreciated!



#2 Hank

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Posted 04 November 2013 - 06:34 PM

Well, I am glad  you were diagnosed and that your symptoms have been minimal. As you get comfortable with the diagnosis, learn more and get some relief, you may begin to notice how much the symptoms have impacted you.

 

For me, I had gotten so accustomed to living under the weight of my symptoms that it seemed normal. Hard to believe.

 

I did not know that I had Cataplexy before diagnosis. Clumsy falls that knocked the wind out of me- yes. Fumbly hands and slurred speech- yes. But Cataplexy- I just did not make the connection. I am now aware that Cataplexy was the cause of those things.

 

I did not fall asleep during the day and never took naps. However, I was always struggling to stay awake. Maintaining my concentration was a huge challenge.

 

How you manage your life can impact your symptoms significantly. Seemingly small things can make a significant negative impact on your symptoms- like sleep schedule, exercise, stress. If your symptoms are minimal, you likely have made choices to minimize your symptoms without even realizing it.

 

Narcolepsy is essentially an extreme diagnosis. In order to hit SOREM without Narcolepsy, you would need to have stayed awake for 48-72 hours. So, it may be a bigger deal than you currently realize.

 

Take your time. Be easy on yourself as you learn more and pay attention to your body. Get some relief from medications if they are an option you choose. Make small changes and see how they impact you. You have probably been living with this for some time and you will be living with it for the rest of your life- you will find ways to adapt and live your life.

 

Be careful reading forums because so many of us have had bad experiences and difficulties with diagnoses, treatment and medications. So glad that has not been your experience.



#3 ironhands

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Posted 04 November 2013 - 06:34 PM

I feel the same way, my official diagnosis is still a ways off, I haven't done the MSLT but based on my PSG the doc's pretty sure it's N.

 

Don't stress it, your life's not going to change because they've given you this new diagnosis, you're still the same person today you were before the test, just now, you might get some drugs to help the EDS and focus issues.

 

I'm glad to see there's another on here with mild symptoms like I have.

 

*edit*

 

Hank posted while I was writing mine, and he's totally right.  Over the weeks that followed getting my PSG results and speaking to the right doctor, a lot of things started to make sense, those dreams that were way too vivid were probably hallucinations, as was the radio I'd hear before bed.  My depression?  Sleep deprivation.  Clumsiness, general lack of energy, focus, career choices, using alcohol "medicinally".... It all just kinda clicks and you life suddenly makes sense!



#4 Ferret

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Posted 04 November 2013 - 09:57 PM

Catlady, you didn't say how long you've been feeling that way or how old you are.

I'm sincerely hoping that you've hit the jackpot with your Doctor and have been diagnosed in the early stages of N. That may mean that you still have some Orexin producing neurons still intact and will require minimal medication (hopefully).

Being tired all the time is NOT normal and should never be ignored until the reason is sourced out. Hank is absolutely correct. As human beings, we keep plodding along and get used to what ails us when it progresses in small increments. We learn to compensate and rationalize our problems until it's too late and the damage is done.

So, when was the last time you felt like a million bucks and able to take on the world?



#5 CatLady

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Posted 06 November 2013 - 06:43 PM

Thanks for the words of wisdom, everyone.    I suppose that N seems like one of those things that happens to "other people", and my symptoms are pretty mild so it's difficult to acknowledge.  After reading more about N, there are some things that have made more sense now that I am looking at them in a different light: the auditory hallucinations, the brain fog, the clumsiness, falling asleep before my head even hits the pillow-all are helping to cement in my mind that, yes, I do have N.

 

Ferret, I've been feeling this way for the last few years, but I really couldn't put my finger on when it all started.  I may have been dealing with this for longer than I realize.  I am thankful for the positive experiences with my doctors regarding this.  My GP got me right in to see a sleep specialist, and he got me in a few weeks for a sleep study and then a diagnosis pretty soon after. It looks like some have been dealing with this for years, which would be terrible.



#6 Ferret

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Posted 06 November 2013 - 10:06 PM

It's not "terrible"...it's just a disability that you will learn to cope with.

I'm not blind or deaf, didn't lose an arm or a leg or the ability to walk or talk. Put it in perspective, live, learn and get on with your life. Above all, be kind to yourself and take care of yourself but don't become self centered and wallow in self pity.

Take a deep breath, you're gonna be fine.



#7 CatLady

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Posted 07 November 2013 - 07:11 AM

I didn't mean that N is terrible, although it's certainly not winning the lottery either.  What I meant was terrible was when people go to their doctors with issues and those issues are ignored or dismissed by the very people who are supposed to be helping.   That would be very frustrating, and I'm glad I didn't have that experience with mine.



#8 ironhands

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Posted 07 November 2013 - 09:14 AM

LOL.  Took me over a decade to finally find out what's wrong with me.  My GP told me it was because my B-12 is low.  Everyone else just said I was lazy, especially in school.  Then it was "just depression".



#9 Kimpossible

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Posted 15 November 2013 - 05:08 PM

I see a lot of doctors - I have IBS, frequent sinus infections, loose ligaments that wreak havoc on my joints, anxiety, depression, and an overwhelming desire to sleep all the time.  I was diagnosed with fibromyalgia 3 years ago which totally blew my mind.  I hadn't ever considered that to be my problem.  After reading about it, I felt like that was not my real problem and that I more likely had chronic fatigue syndrome.  I mentioned last year to my primary care doctor that I felt like I was having memory problems on top of everything else.  I had a rheumatologist, a psychiatrist, and an otolaryngologist all recommend I go see a sleep specialist.  Even after all those people telling me I might want to do that, it still took me two years to actually do it.

 

Narcolepsy was never on my radar as far as a possible diagnosis was concerned.  

 

My doctor suspected it at our first meeting and confirmed it with the PSG and MSLT although my MSLT was borderline at 8.5 minute average.  But, as he said, normal people can't nap 5 times after sleeping the night before.  And, oh, how I longed for those naps.  lol.

 

My mind was blown.  Narcolepsy?!?  I didn't fall asleep in the middle of conversations.  I don't randomly fall asleep at work.  

But, after reading more about it, more things started to make sense.  And, very slowly, as I read more about it, I realized I have a lot more of the symptoms than I originally thought.  It's been about a month since my diagnosis.  It has been a roller coaster.

 

My doctor is great, but for me, he is way too optimistic.  He explained the main treatments that he has had success with and that this was treatable and not a problem.  However, it hasn't been very easy at all.  I started with Nuvigil at 150 mg, increased quickly to 250 mg and had horrible anxiety.  I had a weekend of not taking a single nap at all - even lying in bed reading without falling asleep.  I don't think that's ever happened in my entire adult life!  I felt physically horrible though.  I stopped Nuvigil for several days and have worked up, slowly, to half of a 250mg tablet.  I'm doing alright now although not really feeling much of a difference with the EDS.  In a month, my doctor wants me to try adding Xyrem.  After reading the packet he gave me and reading about Xyrem on here, I am a bit nervous about trying it.  

 

I too thought I had mild symptoms.  And then I started thinking, and asking my friends how they felt during the day, and thinking about how I used to feel when I was younger.  I've always been a sleepy person, but I have deteriorated to such a sad state.  I don't have the energy to do anything.  I can't even muster the energy to vacuum and it's been a month (with 4 dogs!).  There is more hair on the floor than on my dogs.  I can't fathom having a clean house or a decent yard.  That does not take into consideration any of my hobbies that I no longer do - weeding/gardening, stained glass, and pole and burlesque dancing.  My dogs haven't been on a walk in an embarrassingly long time.  The weird part is, the changes occur over time, you don't even realize they are happening until one day you look back and realize you have no life.  Luckily, I have a couple of great friends who are not too bothered by me cancelling plans on them at the last minute (IBS is a big problem for me too).  I don't think I would have stayed friends with someone like me.

 

This week has been particularly emotional for me as I've been making a lot of connections about various side-effects I didn't think I had.  Also, realizing how much I want to do with my life and how much I may never get to do.  And realizing how it effects me at work.  Work has become a real struggle for me.  Understanding how much narcolepsy has changed me and learning how little people understand how debilitating it can be has been really frustrating.

 

Anyway, my whole point in starting this post was to let you know - you'll start seeing things more and more as time goes by about your diagnosis.  These things may trouble you or they may not.  But, it's really nice to know that there are others out there who understand.  An "early" diagnosis means you may still have parts of your life left that, for others, are gone.  Keep your chin up.  It won't always be easy, but you're not alone.



#10 Kimpossible

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Posted 15 November 2013 - 05:11 PM

Sorry for the novella.  :blink:



#11 NightinPhilly

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Posted 16 November 2013 - 12:25 AM

CatLady - I'm so happy you posted. Your post sounds very much like me. Was diagnosed a little over 3 weeks ago now. 
 
My MSLT results were:
Nap 1: Latency to sleep onset   6m   No SOREM
Nap 2: Latency to sleep onset   9m  No SOREM
Nap 3: Latency to sleep onset   4m  SOREM 5.5m
Nap 4: Latency to sleep onset   9m  SOREM  5m
Nap 5: Latency to sleep onset   9m   No SOREM  
 
I too had a PSG the night before with mild sleep apena (AHI 14.2) and REM Latency of 41m (sleep latency was 63m); my sleep efficiency rating was 74.4%. All of that led to a diagnosis of N, but a lot of the other symptoms are mild or non-existent for me as well - no sleep paralysis or visible sleep attacks, no cataplexy, rare vivid dreams/nightmares. While I have very strong EDS I rarely nap during weekdays, and don't fall asleep at work. I was floored by my diagnosis...still not sure I understand.
 
However, for the past few months I sleep heavily on the weekends. I stopped grocery shopping, wait until I absolutely have to do laundry, tell myself I'll take a quick 'nap' and wake up 3-5 hours later too tired to do normal chores / household activities. I fall asleep when hanging out with friends and family which now makes me feel badly that when I'm not stressed out they get to see my extreme desire to sleep.
 
My main concern is I have so much trouble actually going to sleep. I thought my diagnosis would be insomnia. I started taking Nuvigil and struggle to sleep before 11PM. And now, with the CPAP to treat the mild OSA I feel like I wake up even more now than I used to. I'm hoping this gets better because I feel like I'm still tired all the time. I will say I feel better knowing that my feelings of fatigue aren't all in my head. I'm just concerned because right now everything I'm doing to address my issues just seems to be making them worse. 


#12 CatLady

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Posted 16 November 2013 - 08:34 AM

Kimpossible: You are just fine with the length of your post.  :)   I appreciate learning about other people's experiences with N.  It's looking like the symptoms can be so varied in their number and intensity that can be difficult for someone like me, who has mild symptoms,  to wrap their head around a diagnosis of N.  I'm still trying.  I'm looking at the people with the most intense symptoms as being the standard, but I guess I need to start looking at it as a spectrum rather than a black/white situation.  Used to love that cartoon back in the day, BTW.

 

NightinPhilly:  I understand what you mean by feeling floored.  When my doctor informed me, I just looked at him and went, "Really?"  Thoughts of N had never even crossed my mind.  Do you feel that you N has progressed over the last few months?  That's been something that I've been wondering about, if N is progressive in nature or not.

 

Thanks for your stories and advice, everyone!



#13 Kimpossible

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Posted 16 November 2013 - 09:58 AM

Narcolepsy is definitely progressive in nature.  It sneaks up on you and before you know it, all you think about is sleeping.  All the time.  

 

And maybe some other things like eating.  Maybe showering.  lmao.

 

I'm in the middle of finding treatments that work and it is the most frustrating thing to go through. I would like to one day know what it's like to feel awake and alert.  It's my dream to want to get out of bed and kick ass all day long.



#14 NightinPhilly

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Posted 16 November 2013 - 02:24 PM

I agree - Now that I know what this is I do I think mine has progressed in the past few months. I've always considered myself a poor sleeper or said that I had bad sleep habits but it has never been like this. What really made me ask my doctor about what might be wrong with me was when I stopped doing things I considered normal on the weekends - when the state of my personal life was really declining. But I agree with Kimpossible - over time I found that I didn't want to do anything but sleep. Or I told myself I'd do it tomorrow... and then decided to just sleep.

 

My goal is also to have the energy to kick ass all day long - and I'm trying to be patient with the treatments because I feel like I have a day that creates a glimmer of hope... I'm awake, productive, my friends even say I'm 'perky'... and then it's back to the fog.  

 

Since I've read so much about it being progressive, while I'm grateful it was identified now I get worried - how do I make sure I don't allow it to get worse? Did I make it worse somehow? Can I learn how to manage stress better or catch myself early when I'm in a bad sleep cycle and get myself on a better track?

 

On a funny side note... I remember telling the tech during the MSLT that I didn't think I slept during 2 of the naps. And... never confessed that I fell asleep in between the naps when we weren't supposed to be sleeping.  :blink:



#15 Kimpossible

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Posted 16 November 2013 - 07:55 PM

What really made me ask my doctor about what might be wrong with me was when I stopped doing things I considered normal on the weekends - when the state of my personal life was really declining. But I agree with Kimpossible - over time I found that I didn't want to do anything but sleep. Or I told myself I'd do it tomorrow... and then decided to just sleep.

 

I used to be a pretty organized, clean, tidy, on-top-of-things person.  Slowly, I became a procrastinator.  Just like you said, NightinPhilly, I'll do it tomorrow yet tomorrow I just end up sleeping again.  My house is, compared to the "old" me, rather untidy and dirty.  I vacuumed the den after a month this evening.  It took a long time even though the room is rather small.  And I'm exhausted!

 

I often dream of having one of those micro-houses.  I could clean it in an hour or two and always have a spotless house.  lol.



#16 ironhands

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Posted 16 November 2013 - 08:27 PM

why can't we "like" posts lol.  I have a tiny house and I can't bring myself to keep the kitchen in order lately.  Time for paper plates :P

 

I'd rather have a house boat, if there wasn't such a high cost to maintain a boat... or an RV, if I could drive.