16 replies to this topic

[MeanJeanSoSleepy]

Hi everyone!! So I am still in the process of going through the "diagnosis dance" as someone else on here called it. I was evaluated at the Cleveland Clinic roughly a month ago by an AMAZING sleep doctor who spent close to two hours listening to my story and trying to nit pick as to what has been going on with me. After telling him about the horrible experience during my last PSG/MSLT, he decided to have me undergo a second PSG and MSLT. He said that my clinical history did not fit the diagnostic results from my last study. 

 

I underwent this sleep study in a hotel not a hospital. This Dr. believes that hospitals are not really conducive to sleeping and that a hotel is more comforting. And, I was able to bring my husband to stay with me in order to ease my nerves. Let me say, what a HUGE difference!! Like night and day (no pun intended). Here's how it went:

 

- During my PSG, I didn't really have the best sleep. I kept waking up through the night. 

- During my MSLT, I know for sure that I definitely slept during four out of the five naps. I'm thinking that I might have slept through all five naps, as the one I'm questioning lasted 35 minutes, and I know if I hadn't have been asleep, the tech would have woken me up at the 20 minute mark. 

 

I just have a few questions for you guys as I await the results of my sleep study:

 

1. On my second nap, I first had an episode of sleep paralysis followed by a terrifying nightmare with lions in the road. I can depict this dream as if it were real, and it scared me so much that it woke me up. Does this mean I hit REM?

 

2. I don't remember dreaming during any of my other naps, does this mean I didn't hit REM? I do remember feeling as though I was in a deep sleep though. 

 

3. Is sleep paralysis detected on the MSLT? If so, what does it look like to the tech?

 

4. During my first nap that I'm questioning if I fell asleep or not, I remember my body feeling extremely "heavy". Is that a sign of anything?

 

5. Lastly, although my tech said that he couldn't tell me if I fell asleep during any of my naps, I asked him if there was good enough data for the Doctor to be able to figure out what's going on with me. He replied that there was good data and yes, he thinks they will be able to figure out something. What does that mean? 

[sweetest_shone]

I'm newly diagnosed, so i have recently had a sleep study and so I can only tell you my experience and its pretty much in laymon's terms but I want to try. . So here goes:
Normally, I do not remember my dreams. The night of my sleep study, the one for the sleep apnea, I remembered bits an pieces of 2-3 different dreams. My test was negative for sleep apnea.
For my MSLT I slept on all 5 nap opportunities. I went into REM which is my understanding is the dreaming stage of sleep on 3 out of 5 naps. I do not remember any dreams. They also gave me an average time it took me to go into REM which was 9 minutes I think. They also told me sleep latency which was immediate onset on 1 nap occasion, 4 minutes on another nap and my average latency was 5 mins and 30 sec. This all plays a part in the diagnosis of N... Or so I am told.
I know you have had these tests before. But I just mainly wanted you to know that for me it is very rare for me to remember dreaming. And also something very odd during my MSLT, even though they said I was asleep, I was still somewhat awake or aware I should say, of sounds and things going on around me if that makes since. I guess it's one of those N things, maybe the Hypnagogic hallucinations or paralysis type thing- who knows.
I know the waiting is killing you, hang in there. And good luck!

[dormir]

I was just thinking about you.  I think your doctor is still going to be willing to diagnose you with narcolepsy, even if you didn't get to REM on all naps.  

 

Not remembering dreams doesn't mean you didn't get to REM, but if you normally remember your dreams, and your dreams normally occur during REM sleep, it is too difficult to say.

 

 

The PSG tech told me they had a lot of good data, too, but I won't know what that means until April.

 

The MSLT tech told me they don't see SP or HH on the test.  During one of my naps, I had SP, so that is why I asked.

 

When do you go back for follow up?

[MeanJeanSoSleepy]

@sweetest_shore: thanks so much!! Now that you describe your experience, I'm wondering if in my first nap I hit REM, because although I thought I might be asleep, I was still aware of my surroundings. I'm glad you were able to find answers, and I hope you are getting the help you need :-).

 

@dormir: hey there !! Does this mean that you also repeated a second sleep study? If so, how did it go for you? Were you as anxious this time? I hope you also get some much needed answers, a diagnosis, and the treatment that you need. I go back this Friday for a followup visit. It will be the "make or break" appointment. I am so nervous to hear the results of my sleep study. I have read stories on here about people who knew they dreamed during their naps, but they actually never went into REM sleep during one of the naps. I will keep you posted, and please keep me posted on everything with you as well!! 

[sweetest_shone]

Thank you. Please keep us updated. I hope that you do not have N, I hope that you get answers and your problems are solvable/curable.
Good luck.

[nerkie]

I remember the MLST vividly. Mostly because I couldn't believe I was being diagnosed with Narcolepsy afterwards.

- I didn't dream. I didn't even remember falling asleep, it simply felt like a few minutes had passed in a dark room before the tech was buzzing me awake over the intercome, but according to my doctor I hit REM in all 5 naps and quickly too. So I don't think there is one set 'feeling' or sign that is indicative of REM or not.

I hope this helps and I hope you get the answers you need.

[munky]

It is possible to dream in non-REM sleep. Those dreams tend to be relatively ordinary, not the kind of crazy stuff you get in REM sleep ... and, of course, you could have the craziest dreams in the world and not remember it when you wake up! My sister never remembers her dreams, but I know she has them, and they can be pretty wild. I know, because she talks in her sleep ... and wow, can that be a lot of fun to play with! Ahem. Anyway, just because you don't remember dreaming doesn't mean you didn't. I remembered dreaming in one nap on my MSLT, but not the others. Apparently, however, I had 2 SOREM. Most of the naps, I wasn't even sure I'd slept, except, like nerkie says, it felt like I'd only been lying there a few minutes when they came in to wake me up.

[Megssosleepy]

I remembered dreaming in all of my naps, but didn't go into REM on the test.  My Doc still gave me a 100% N DX. I also fell asleep before a minute was up in each of the four naps I took (they didn't make me stay for the 5th), and have all the other classic symptoms of N. 

 

I really find it interesting that we don't need to be in REM to dream!

[munky]

I really find it interesting that we don't need to be in REM to dream!

 

Yeah, it was a big surprise to me, too! I'm trying to remember where I read that so I can post a link, but I've been doing so much research and reading lately that I'm having trouble remembering which things I've read and which I haven't!

 

I do remember, though, that same article mentioning that the nREM dreams are "ordinary," with maybe one thing out-of-place ... like dreaming that you're in the living room, watching TV, and you're using a fish for a remote control.

 

Really need to find that article again ...

[MeanJeanSoSleepy]

It's amazing that all of you didint feel as though you hit rem or slept in any of the naps, but it was quite the opposite.

I went for my follow up visit today. I had 2 SOREMs and a mean sleep latency of 12 minutes. Although my sleep latency was on the higher side, the Dr said I had all four symptoms of N including C, and said without a doubt that is what I have. Soo relieved to have an answer! I start on Provigil and Prozac tommorrow morning.

To all of those who know this is what they have yet fail their sleep study due to anxiety or some other environmental factor...KEEP PUSHING till you find an answer. I knew something wasint right with me, and although it was a long and tiring process to be diagnosed, I'm so glad that I didint give up.

And thank you to everyone on here for your advice and support. I'd especially like to thank Munky who has been so kind and gracious to listen and give advice.

When the whole world turns its back on you because they think your crazy, thank god for Narcolepsy Network and its members

[sweetest_shone]

I'm so glad everything worked out with your MSLT.
NN is definitely great for us newbies.And I agree! Everyone here is great!

[munky]

 I only did what I hope any of us would! Where would we be, after all, if we didn't support each other?

 

I am so glad you finally got a diagnosis, and now get to start treatment! I hope you're as lucky as I was, and that the first treatment you try works! If it doesn't, though, don't lose hope. The diagnosis itself took a long time, and thanks to the nature of the disorder, finding the right treatment for each person can take a long time, too. Hopefully, that won't be the case!

[dormir]

I had a feeling your doctor would diagnose you with narcolepsy even if you had "borderline" MSLT results!  Your doctor seemed willing to take more than just the MSLT into consideration.  

 

Please keep us updated about your experiences with the medication.  Prozac made my naps and night sleep a lot worse with dreaming, though felt more mentally sharp during the day.  I have never tried Provigil.  Hopefully these will be the successful key for you so you can manage your life, feel refreshed during the day, and get rid of those dreams.  I'm excited that you are getting treated finally.

 

 

I have dreams in non-REM sleep, too, like some of the other that have commented here.  

 

No, I haven't had a second sleep study.  I have my actual, real first follow up appointment with the pulmonologist in April and I'm holding him to his "we can make the dreams go away" statement since I don't know what he has in mind since he is now double guessing his original narcolepsy diagnosis.  I will post in my novel length thread once I see him.  

 

 

Please keep us updated on you, girly!

[MeanJeanSoSleepy]

Thank you guys again so, so much!! You guys are all so amazing!! 

 

So I started on the Prozac Provigil combo yesterday morning. Yesterday I felt AMAZING! Like I finally felt alive again!! Today on the other hand is a different story. I felt great about an hour or so after taking my P&P. Now it's 1:51pm, which is usually the part of the day I struggle most with to stay awake, and I feel as though I am "crashing". So frustrating, because yesterday I felt great, now I'm feeling like I need to sleep. Is this normal during the initiation phase of treatment? I'm only on 100mg of Provigil and 20mg of Prozac.

 

@ Dormir...good luck with everything!! I hope you get the answers that you need. 

[MeanJeanSoSleepy]

Also, I find it strange that for some reason I am feeling this way...

 

Before my official DX, I knew without a shadow of a doubt this is what I had. I would get upset when friends or coworkers thought I was crazy for believing I have this. Now, that I have been DX, I guess I am sort of going through a denial stage. I can't believe that I actually have this, which is strange because prior to DX I knew I had it, if that makes any sense. I also feel like it's something I can never get rid of, and I am unsure as to what the future holds. 

 

Any advice? 

[sk8aplexy]

Not sure the advice in my mind, is real advice or perhaps simplification.

It took a few years to get a grasp, of/on it.

It's only been around 5 years, if even, that I've even known of N w/ C being a real possibility for what was going on (collapsing from Cataplexy for a good 8 years prior to), and now between 2 to 3 years that I've known it for what it was, with dx.

Edit-> The below may be more appropriate in the 'Treatment' section, post 'My Medicine, My Enemy?'..? <-End Edit

Now, I'm very stubborn and I am one to want solid criteria and proof, before I dive into things.  Having complex problematic health matters from basically the day I was born (2 months in it really began, seizures which related to severe hypoglycemia and then 9/10ths pancreas removed...), with frequently sporadic pain/aches and some being near constant, and with many other annoyances like tinnitus/sinusitis/frequent migraines; what I'm saying is my pain tolerance is high and I haven't had a history of medicine helping, it actually often rebounds anymore, I do have occasions where something grave or severe is fixed temporarily or lessened by meds but 'I do not believe in normal' and I believe the systems of the body are not to be broken into different 'specifics' then viewed from separate directions or angles... 

I remember 'Dare' in school telling us, 'Just Say No, to Drugs.'   In my mind there are terms, representing legal and/or illegal drugs, but both are drugs, some good and many bad, each has different effects on each person and effects can vary from person to person from drug to drug; the hypocrisy today is rampant and only one can begin knowing how, to actually, look out for themselves, yet many are unable to recognize much within themselves...

Please, no one take what I am saying to heart heavily, do not take offense, step back and look broadly at things, as well as within.  Connect dots for yourselves and form, then have your own opinions, a lot that people say 'often' is not necessarily on (from) their own behalf; profiteering and the state of such does have an impact on stability, that is to say there is a lot of instability today in many realms, which most will easily recognize, if they allow themselves to.

Many mask are worn, by too many and all I'm really trying to say is this: look out for yourselves and recognize whether or not you are gaining a benefit from what you consume.  I've been amazed at the difference which diet alone can make on so much, we are what we eat, not limiting eating by dieting but rather eating safe and health foods, knowing what it is that you eat.  For example, one can say cigarettes are of entirely just tobacco; yet, we all know that's not the actual, entire, case...

Edit -> So, my advice to your MeanJeanSoSleepy is below. <-End Edit

Be safe and be cautious, that's all.

 

The best of luck.  Time tells.

[munky]

Two things for you, Jean:

 

First, medication can be like that. It'll take your body some time to acclimate to it, but it should even out. When I satarted taking 250mg Nuvigil every day, for the first three days, it was like I was awake for the first time ever in my life. No brain fog, no lingering tiredness, tons of energy to get everything done ... school wasn't a constant struggle just to be able to parse what the professors were saying when they lectured, I wasn't forgetting things ... it was amazing. And then it went away. I'm still better on the meds than I was before them, just don't have that amazing feeling of being awake. And boy do I miss it!

 

And, no, I think it's perfectly normal for you to have hit the denial stage. You were convinced before the diagnosis that you had it, yes, but consider how hard you had to fight to get the diagnosis! If you weren't convinced to start with, the long fight alone might be enough to convince you! And, at the time, you were focused only on getting the diagnosis so you could get effective treatment. You wanted treatment, and you got it! But now, perhaps subconsciously, you're starting to realize that you're going to have to deal with all the other implications, and seriously, who wants that? So, yes, it's no surprise that you've hit a denial phase. I know I was thrilled at first to have a diagnosis, which meant I could get treatment. Not thrilled, obviously, to have narcolepsy, but thrilled to know what it was ... And a month or so later, I was questioning it myself, and I honestly don't think I've quite accepted it yet. I'm closer, but I keep running up against things and saying, "no, don't want that," even knowing it's not something I have a choice about.

 

We'll get there, Jean. We'll get there. It'll probably take a while, but we'll get there.