- This topic has 9 replies, 3 voices, and was last updated 3 years, 1 month ago by strangedaze. This post has been viewed 2171 times
- July 26, 2017 at 9:31 am #2282strangedazeParticipant
So, I posted back on the old board right before it was shut down and followed you all over here just in case I ended up with a diagnosis of N.
I had the MSLT yesterday and had my PSG 2 weeks beforehand (long story). Anyway, I haven’t received complete results of either but I know psg was clear of apnea. I also know that I had at least 1 sorem in the mslt because they made me do 5 naps. The tech initially told me I’d probably only do 4 but after my third nap, she changed her tune and said I’d most likely need 5 unless there was rem in the 4th. I totally freaked out in the 4th and 5th nap because I knew what that meant. I went into the MSLT confident that I did NOT have narcolepsy. But now I’m so confused and I’m freaking out that I have to wait 2 weeks to find out what happened.
I don’t feel like I fell into any kind of deep sleep (where I wasn’t consciously thinking) in any of them but experienced lots of visuals, images and “memories” in all. Tech acted like I never slept in any of them (though she was good at poker face) except after the 3rd, which strangely she looked excited. Really? who would be excited that someone could have narcolepsy?
This whole thing, and the stress of it has thrown my sleep off so bad the past 3 days that I feel like dirt and I’m starting to hallucinate 40 minutes after falling asleep (a past pattern for me that comes in clumps). So now I’m thinking, “oh no! What if I do have N and I didn’t get enough sorems on the MSLT” OR even worse, what if I have to redo it. It was so stressful that I could feel my heart beating over 100 for a few minutes at the start of every nap.
I realize I just have to wait… and I know many of you have been through that…it’s just so nerve wracking.
Thanks for listening to me ramble! It feels good to get that out!July 26, 2017 at 9:50 am #2284TheRabbitKingKeymaster
1 SOREM and a PSG that suggests N is strongly suspicious of Narcolepsy dx but usually two SOREMs or more is considered more conclusive. Do you have any cataplexy or sleep paralysis? That would probably make it a slam dunk. Either way, I personally feel N is likely for you, unless there is something else weird in the PSG. Welcome to the club. It sucks because its N but it’s good to know what you’re up against so you can treat appropriately. Good luck and we’re here for you.
My current jam: Anathema - SpringfieldJuly 26, 2017 at 11:52 am #2288strangedazeParticipant
Thanks, THERABBITKING. I appreciate your reply and as nice as you all are, I really don’t want to have to be part of the club, haha… So I guess I’ll just be patient. Because maybe it’s all fine. Like maybe I didn’t sleep in any of my naps and only had the 1 sorem.
Anyway, yes, I have had sleep paralysis. It’s been about 7 years ago since the really vivid ones where I had 2 incidences of very clear hallucinations and being frozen. One of a prairie woman ghost that literally flew into my body (yes I sound crazy!) and another of a golden blob lady dripping down the wall and coming for me. Geez. I also had some when I was a child around age 8 maybe and 2 other incidences of vivid hallucinations where I was up out of bed, seeing things and acting on my dreams (one 7 years ago and a few when I was a child). Now, about every 7-10 days I have an arousal, usually 40-50 min after falling asleep, where I am very confused and staring at the walls, occasionally jumping away from something, sometimes yelling, but mostly just staring and confused with a touch of fear but mostly confusion. I can’t remember why or what I’m looking at and I fall straight back asleep. These leave me very tired the next day. And I do have paralysis still but not my whole body and not with the hallucinations anymore. Just 1 arm will be frozen or something and I can’t move it for minutes and my brain feels real fuzzy at the same time and the sensation goes through my body in waves. I actually started considering seizures of some sort, but haven’t asked the dr about this.
My memory stinks now and I have a hard time some days getting anything worthwhile done. I have lapses in the day where I can’t remember if I’ve done something or driving and can’t remember where I’m going or trying to make a grocery list is a nightmare because I forget what I’m thinking before I can make it to a piece of paper or my phone to make a note. And a bunch of other really weird stuff, but this is starting to get long, sorry so I’ll cut myself off there :)…
Other than all the above, I am perfectly “normal” (if there is such a thing) mother of 2 kids, active, healthy, not depressed, etc. So, it’s a mystery but I know that something is up and maybe it’s not N, but if not, we have some more digging to do. Thanks so much!July 26, 2017 at 6:56 pm #2316NatdocParticipant
If I may ask who did you see for your complaints? and are they familiar with diagnosing and treating Narcolepsy? In my experience the overnight studies are performed the night before MSLT this is to assure adequate sleep on the night before, otherwise it is just a guess.
Were you on medications at the time of your testing?
What else did your study show besides the absence of sleep apnea?
Have other neurological causes been ruled out?
Sorry for all the questions but this sounds like a little screwed up testing.
All my bestJuly 26, 2017 at 9:16 pm #2322strangedazeParticipant
I appreciate your questions and concern. I certainly want to get this diagnosis right or whatever else “it” may be!
I am seeing a board certified sleep doctor who only sees sleep and lipidology patients (mainly sleep) though he has a background in family practice. He’s been the director of a local sleep center in this area for over 20 yrs and seems to be well liked.
The reason I ended up at a sleep Dr at all is that I had some electrical heart issues back in November. Those were never fully explained but thought to be a focal atrial tachycardia mixed possibly with a sinus reentrant tachycardia after I ended up in the ER twice. I took some meds and tapered off in April and my heart’s been better since. However, at my last appointment with the heart Dr (in May) I mentioned that I saw some correlation between my heart acting up and some weird sleep disturbances I was having. He INSISTED that I go to a sleep Dr, so I made an appointment and went mid-June. I really figured it was much to do about nothing, but the sleep doc listened to my history, did the eds survey, all the usual things. When I mentioned some of the dreams, some arousals, lots of headaches and feeling terrible lots of mornings upon waking, he immediately thought I should have a PSG & MSLT and mentioned narcolepsy & possible apnea (due to overbite, not neck circumference or snoring or overweight). I thought he was crazy – I didn’t consider myself THAT sleepy but I didn’t have a clue what narcolepsy was beside the Hollywood depictions.
Fast forward to about 2 weeks ago, I was scheduled to have a 2-night PSG and MSLT (the 2 night just in case it turned out to be apnea) and when I showed up, they had had a tech with a family emergency (death in family) so they were not going to be able to do the MSLT, only the PSG but encouraged me to go ahead, because they said if it was apnea they’d cancel the MSLT anyway. It wasn’t apnea. I don’t have the complete results yet. I know nothing except I had 0.9 apneas/hr and that I had almost 7 hours of sleep, at least 6.5 if I remember correctly. They said it was fine if I did the MSLT on a separate day (trust me, I asked as I was concerned about insurance being ok with this). Guess they trusted my sleep would be adequate? I do wear a fitbit but don’t know how accurate those are. Got 6 hrs. 50 min. according to it, slightly short of my norm (7.5), but only because I had to wake early to drive an hour to the center. Got there at 8, testing at 9.
I’ve had general blood work done for thyroid, cell counts, and all that regular stuff during my two visits to the ER. All fine. I’m also 39, fit, eat well, workout, etc. I never had any reason to think I had neurological issues, so haven’t been that route yet. Though, if this doesn’t explain things I think a neurologist might be my next stop, as I did have several head injuries 10 years ago or so from extreme sports type stuff.
All I know is that something is off with me and I don’t know what. It all really seemed to start right around the time I ended up in the ER in November. I was having some weird stuff that day, right before the heart palpitations, I felt really bad all morning, flu-like and lightheaded, then a really weird sensation hit me while I was driving and I almost blacked out at the traffic light to my subdivision, then I pulled off the road and freaked out because I felt terrible, and then bam, like a panic attack would do, the heart took off, only it got stuck in a cycle of tachycardia that lasted on/off for 6+ hours. And it was this same sort of pattern each time. Even to this day, I still get that similar rush with the lightheaded feeling (not panicky, almost euphoric, starts in belly and travels to head so head feels like a helium balloon) then sometimes it goes away or is closely followed by feeling slightly ill and I can’t help but put my head down, I usually woozy (not dizzy, no spinning), and if I rest for a few minutes I am ok. I have not had tachycardia with those spells since coming off the heart meds.
I haven’t discussed with the sleep doc any of that in detail or the memory or other issues I have been having. I plan to talk about all when we meet Aug 7th. Hopefully, he can make sense of it all as he seems to be a good listener and proactive. And if I need to go elsewhere to a different Dr, I hope he points me in the proper direction.
Anyway, sorry for the length of all of that, but that’s the only way I could explain it! I greatly appreciate you taking the time to ask me these things and to care. Hopefully, I’ll get to the bottom of this soon.August 8, 2017 at 3:14 pm #2728strangedazeParticipant
So, I got my results yesterday and as I said I would, I am going to update here so others might benefit.
I officially do not have narcolepsy. I slept ZERO in any of my naps as they were unable to figure out my wakefulness from my sleep. The Dr said I experienced tons of eye rolling movements but said that I had bizarre (unmatching any sleep stage) EEG waves. The interpreting clinician saw the same thing during my night study and I was scored as having only 5.6 hours of sleep and 16 arousals per hour (only .9 apnea and 1 incidence of less than 90% o2), sleep efficiency of 78%.
On the MSLT report, it says, “This was an extremely difficult record to review and score. The patient’s EEG, eye movements, and EMG did not change appreciably during the nap trials. There was brief slowing at times, indicating brief lapses into sleep, however, clear sleep onset was not possible to score during any nap trial. It should be noted that the patient’s nocturnal polysomnogram, her EEG was difficult to differentiate between wakefulness and sleep.”
Their Impression was an “MSLT of questionable validity.”
So, the Dr doesn’t know what the deal is, but he knows it’s not narcolepsy. As to my memory issues, he is concerned about my amnesia and wants me to keep a journal for 3 mos and revisit then. If still problematic, a neurologist is where I’ll be sent since the brain waves were different, and the memory and lightheaded issues persist. I was hoping those were caused by crappy sleep but it seems otherwise?
Anyway, I guess having hypnogogic hallucinations and sleep paralysis and EDS does not necessarily equal Narcolepsy. I’m still having all this stuff but now the sleep dr is against the idea of sleep being my problem, soooo…. pretty much leaves me with zero answers still!
Thanks to you all for listening and good luck in your journey of diagnosis and/or treatment!August 8, 2017 at 3:20 pm #2730TheRabbitKingKeymaster
Sorry to hear you don’t have any firm answers. Are they giving you the IH Dx now?
My current jam: Anathema - SpringfieldAugust 8, 2017 at 3:26 pm #2732strangedazeParticipant
Thanks, TheRabbitKing. No diagnosis at all. I can’t prove that I’m sleepy if I don’t sleep, haha… so, oh well. It’s probably for the best as maybe there is a different reason for all of this and if I continue to have issues maybe one day some dr will figure it out, or even better, maybe it will all just resolve itself and get better.August 8, 2017 at 7:25 pm #2735NatdocParticipant
I’m sorry for your misfortune with all this. I really wish you would not give up on this. Of course I cannot see your results of testing but if you had a 78% sleep efficiency then you did sleep, the question is how well did you sleep? And the MSLT interpretation contradicts itself, from what I see it says that the EEG, eye movements and EMG did not change appreciably during the naps.It also says that there were brief lapses into sleep so Im not sure what they are saying here. Either you slept or you did not which is it?
And if you don’t know what the “deal” is , then you don’t know that it is not narcolepsy.
Some folks repeat their PSG and MSLT several times prior to a proper diagnosis. I would be interested to see what a blood test for HLA would show. I do think making the appointment with the Neurologist is a good idea in your case.
And by the way sleep paralysis, hallucinations and EDS manifest in many sleep disorders beside Narcolepsy
It is so important to review your overnight studies with a fine view, even narcolepsy holds clues in the overnight study.
I really wish you all the bestAugust 9, 2017 at 9:39 am #2759strangedazeParticipant
Thanks, Natdoc, for your reply. And, yes, I agree with you. They seem to contradict themselves, as it’s impossible to sleep and not sleep at the same time! So perhaps I’m sitting here typing this and sleeping simultaneously based on their reasoning, haha. Which would be some pretty extreme narcolepsy 😉
Anyway, I won’t “give up” per se, but I will just continue to track symptoms and figure out if any of this is worth pursuing further.
I’m definitely bummed about the results though as the whole thing seemed to be a waste of time since we learned nothing and neither of the tests was representative of how I sleep at home.
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