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- February 24, 2020 at 9:48 pm #12412Laces1989Participant
I know I just need to be patient, but I am having anxiety about receiving my slee test results. I know it’s odd to actually hope that I have narcolepsy, but I honestly just want some answers besides “I’m just a sleepy person” and I want something to help me feel more energetic. It is overwhelming to think that if they rule out a sleep disorder that I have no where to turn to.
The tech had a really good poker face and never disclosed any information to me during my study, but I do know that I slept for all five naps. I have no idea how quickly I fall sleep because sometimes I cannot even tell if I am in some weird form of sleep or if I am still awake.
I’ve had EDS as long as I can remember…maybe 16 or 18 I would guess. I do know that it has been progressively worsening with age. I’m 30 now and it’s recently got to the point where I am very close to dozing off while driving or at traffic lights. I have fallen asleep for very brief periods of time at work while sitting up at meetings or at my computer, which has never happened before. I have periods (usually several times per day, it some days are better or worse than others) where I have a very strong wave of exhaustion come over me. It takes all the energy I have to keep my eyes open. I often blink so much that I can’t see well and yawn almost continuously. I feel like I fall asleep easily. It is extremely rare to have any issue drifting off for naps if I get the luxury or taking one or bed. I never feel refreshed after naps. I more so take them just because it’s easier to cope with the exhaustion by being unconscious versus fighting it (if that makes sense). I could sleep for 12 hours (then I may feel rested compared to usual) but then 2 hours later I’m yawning and ready to nap, even after coffee.
I have complained about being very tired for a long time. I was first told “of course you’re tired, you’re a college student and work”. Then I worked third shift as an RN. The dr then told me it was the third shift. I quit that shift (it really was taxing for my sleep) and eventually got my thyroid tested and was diagnosed with hypothyroidism. The meds never helped me feel better. My doctor then told me I was probably one of the few people who have hypothyroidism but are asymptomatic. Now when I complain to the doctor about being excessively tired and wanting to sleep all the time I am told that I am a mother, so of course I am tired. I finally took it upon myself to just call a sleep specialist on my own and they immediately took my complaints seriously and said they could tell how tired I was by my behavior and scheduled me for a PSG & MSLT. Now when I complain to the doctor about being excessively tired and wanting to sleep all the time I am told that I am a mother, so of course I am tired. I finally took it upon myself to just call a sleep specialist on my own and they immediately took my complaints seriously and said they could tell how tired I was by my behavior and scheduled me for a PSG & MSLT.
I never would have thought about seeing a sleep specialist if it weren’t for one of my sisters friends recently being diagnosed with narcolepsy. I really did not have an adequate understanding of what narcolepsy was before my appointment or before she told me about her symptoms.
If anyone could chip in and answer a few of my questions I would greatly appreciate it:
1. I know it is probably impossible to tell if you enter room sleep quickly upon falling asleep or during naps, but I do know that frequently during naps as short as 15 or 20 minutes I wake up remembering having dreams. Also, when I fall asleep at night most nights I am aware of the point in which I seem to be falling asleep. I have very odd thoughts or see things while my eyes are closed. Sometimes I feel completely conscious during the event and other times I seem to come back to consciousness during. Sometimes I can continue the vision or event while still being aware of its absurdness and sometimes it ends and I’m left thinking about it. Is this a hypnagogic hallucination or possibly just REM or dreaming in light sleep if that’s a thing? Or maybe this is some thing completely normal that everyone experiences whether they have a sleep disorder or not? I feel like they are more dreams than hallucinations because when they are happening and I am conscious I am very aware of how strange they are and that they are not real, or I seem to come to afterwards or during and I am aware that it’s not real. The setting usually is not in my room either, but more visions when my eyes are closed or thinking a very strange things or almost observing something happening like a dream only I am not involved in it. I feel like dreams you are part of the plot where is what happens when I fall I feel like they are more dreams than hallucinations because when they are happening and I am conscious I am very aware of how strange they are and that they are not real, or I seem to come to afterward or during and I am aware that it’s not real. The setting usually is not in my room either, but more visions when my eyes are closed or thinking a very strange things or almost observing something happening like a dream only I am not involved in it. I feel like dreams you are part of the plot where is what happens when I fall asleep is I am observing something or sometimes hearing noises like a xylophone playing or a song. Experience these events almost daily, and during my sleep study I experienced them with all of my naps.
2. I have experienced sleep paralysis which is very frightening but it is rare. More often I have vivid nightmares that feel very real and sometimes I wake up sweating and crying in my heart pounding because it was so real to me. More commonly I have what I described as a dream within a dream, where I have a freaking dream, wake up from my dream, try to process it and call myself down, only for something else scary to happen in the exact setting I am presently in (in my bed sleeping) only for a boy to be staring at me, a burned face leering at me, etc. ) I wake up very abruptly at this point and to this day I remember all of these dreams. These happen maybe once a month, but nothing so frequent as to cause me anxiety.
3. My doctor asked me about cataplexy. I have never felt weak or buckling knees, but in the last year or so I have noticed that when I laugh or I’m hysterical about something it feels like my face is melting. I do not think anybody notices anything different about my face but it feels might like my cheeks and lower eyelids are getting pulled down. My eyes up and water at this point and get glassy and dry feeling. Could this be cataplexy in a minor form?
Thank you all and sorry for the book. I appreciate all of your insight.February 24, 2020 at 9:54 pm #12414Laces1989Participant
Also sorry for all of the typos. There is a strange glitch where I can’t see what I type. Hope it’s understandable.February 24, 2020 at 11:14 pm #12422NatdocParticipant
Hope you have not been waiting long for results.
As far as your testing goes without seeing the technical data it is hard to say positively that you experienced REM sleep, however, it certainly seems so.
Also clinically, you have all the signs and symptoms of narcolepsy.
The times you experience the feeling like your face is melting is probably cataplexy, the next time it occurs get a snapshot or video.
I would caution you that regardless of the outcome of this testing, keep searching for answers, there is always the possibility your MSLT is negative (although it certainly does not sound like it) perhaps it will need repeating, they often do.
I wish you all the bestFebruary 25, 2020 at 7:07 am #12444Laces1989Participant
Thank you for your insight. I’ll update once I have the results.February 25, 2020 at 8:34 am #12447FerretModerator
I would stop worrying about it because I think it’s a slam dunk. I agree with Natdoc that you have Narcolepsy with Cataplexy.
However, don’t expect a magic pharmaceutical remedy to suddenly make you without symptoms. Although I would wish that for you and everyone else!
Just take it one step at a time and incrementally improve your life. Chin up! And don’t ever give up!February 25, 2020 at 9:50 am #12453Laces1989Participant
Thank you. Is it normal to have those thoughts or almost observation like visions when falling asleep for naps or for the night? Do you think this may be dreams or hallucinations since I’m conscious somewhat during them or after?February 25, 2020 at 10:22 am #12455FerretModerator
@laces1989 Hynopompic or hypnogogic hallucinations are what you’re having. Mine felt like my soul was being extracted through the top of my head and I’ve also felt like I was having an out of body experience or dragged across the bed by my shoulders. The sound of glass breaking or music playing. You actually feel as if you’re losing a grasp on reality. Like cataplexy, it’s best not to fight them.February 27, 2020 at 10:15 am #12488Laces1989Participant
Well, my dr. Office called and set up an Appt for next week to discuss the results. I had a MSLT less than 8 min (naps SL 11, 11, 6, 4, 4). Sleep efficiency 94% on PSG. REM SL 67 min on PSG. PSG SL 11 min. No SOMREPS during the 15 min naps.
The day of my MSLT I felt more awake than a typical day, some days are much worse than others (yesterday was a bad day). It now sounds more like idiopathic hypersomnia than narcolepsy?February 27, 2020 at 3:12 pm #12492FerretModerator
Just to clarify, were you off all meds? Especially those that suppress REM. And, are you a smoker/vaper of nicotine?
And have you mentioned the face melting episodes? Because Cataplexy is always Narcolepsy Type 1 and can trump any psg/mslt. Make sure you mention it when you see your Doctor.February 27, 2020 at 3:40 pm #12495Laces1989Participant
I am on levothyroxine for hypothyroid (thyroid levels have been normal for years with treatment), zyrtec daily for allergies, just some vitamins, and Wellbutrin. Wellbutrin is not a REM suppressant. I take the wellbutrin for severe seasonal depression (I live in Michigan where at least 6 months of the year we have no sunshine). My dr. preferred that I got off the Wellbutrin but stated that she was comfortable with me staying on it if I wanted to because I have had symptoms for longer than I have been on the med, it isn’t a REM suppressant, and it is very unlikely to cause drowsiness as a NDRI and not an SSRI.
I did tell her about the face melting feeling but told her that no one, including my husband, has ever noticed anything. She stated that she did not know if that was cataplexy or not but did mark suspected narcolepsy with cataplexy in my chart as a reason for the PSG and MSLT.
Another thing she mentioned was how I mentioned that I tend to sleep for long periods of time overnight (if I don’t have to wake up with an alarm clock for work like most days), how my naps are over an hr in length if I got to choose how long I sleep, and how sleep generally is unrefreshing for me. She said that narcoleptics generally take short naps, don’t sleep extended periods of time overnight, and feel refreshed when they wake up in the morning and from naps and that they then get tired on and off later in the day.
Yesterday was a bad day for me. I had to leave work in the middle of the day because I couldn’t stay awake, even with 4 cups of coffee (4 containers, not actual measuring cups). I went to sleep and I am pretty sure I went into REM because when my alarm went off 45 minutes later I was very groggy and was in the middle of an unpleasant dream. It took me over an hr to get out of the groggy state and I felt very irritable. It was hard to open my eyes / keep them open for quite awhile after I woke up.
I do not smoke, use nicotine, or any other drugs besides the ones I listed above. I also very rarely even drink alcohol.February 27, 2020 at 8:14 pm #12500FerretModerator
“She said that narcoleptics generally take short naps, don’t sleep extended periods of time overnight, and feel refreshed when they wake up in the morning and from naps and that they then get tired on and off later in the day.”
Bunk! Sorry. There is absolutely NO one size fits all. There is also no way that Narcoleptics wake up feeling refreshed because they are not getting sufficient deep sleep at night because they are nearly constantly in REM.
REM suppressants are good for people with Narcolepsy BUT they can skew the results of a psg/mslt for diagnostic purposes. Thanks for being so open to my questions.
So, please read this link https://www.psychiatrictimes.com/depression/3-myths-about-bupropion/page/0/1 from which this quote comes…
” However, sleep quality is a different matter, and here bupropion shines. Depression impairs sleep architecture in several ways. There is more REM latency (the patient enters REM too quickly), REM density, and less of the restorative slow-wave sleep. Bupropion reverses those changes,”
…and tell me that it didn’t affect your psg/mslt.
It is yours and your Doctor’s right to take into consideration what meds you should or should not be on for your health. I just want your Doctor to be aware of the above when reading the results.
BTW, I was diagnosed in 1986 with N with C at age 35… I was always a long night sleeper (12 hours), a long napper (3 hours) and multiple zone out naps throughout the day and absolutely nothing refreshing about any of them. Even when I was 18 I remember my first thought of the day being when I could get back into bed.
Go to the section of this forum called Non Rx Strategies. Read at your leisure because I am worried that you are going to fall through the cracks with a Doctor who sees things in such a black and white and rigid manner.February 27, 2020 at 8:52 pm #12502Laces1989Participant
ThAnk you for your insight and personal story. I greatly appreciate that. I don’t mind you answering questions at all. There seems to be a lot of conflicting stuff online too on what narcolepsy is and isn’t. It sounds like both disorders are lacing research. Well I’ll see what she has to say at my Appt on Tuesday. Maybe she will want me to retake the MSLT after getting off the Wellbutrin. She said she wanted to talk to me about it in person.
When the nurse called at first she said that she had my results and that they looked good and that I “slept well”. I took good to mean normal. I don’t want to have something wrong with me but I was very sad and frustrated to hear it was good because I felt hopeless. She then said the dr wanted to go over the results with me. I called back the next day because I decided I have the right to know at least some basic information about the test results going into the appointment. I was surprised to find that my MSLT was 7 when they said all was good and that I slept well…February 27, 2020 at 8:56 pm #12504Laces1989Participant
I’m confused by the article…Wellbutrin causes people to enter REM less quickly or more quickly than if not on it?
Also, except for maybe xyrem, it sounds like treatment for IH and narcolepsy are the same except for those that need meds to treat severe cataplexy, correct? Or am I overestimating the similarities in treatment?February 27, 2020 at 9:00 pm #12506Laces1989Participant
Also, one other little thing I forgot to mention. For some reason I get bad palpitations on and off. They are so bad and persist sometimes for hours. I have had multiple tests because doctors have been concerned but having multiple EKGs and echocardiograms they’ve all come to the same conclusion that my heart is perfectly normal. I had one of these episodes a night of my PSG before falling asleep and for the first three naps. I feel like it definitely delay is going to sleep even though I am very tired just because my heart feels like it’s flopping around in my chest and about to come out of Also, one other little thing I forgot to mention. For some reason I get bad palpitations on and off. They are so bad and persist sometimes for hours. I have had multiple tests because doctors have been concerned but having multiple EKGs and echocardiograms they have all come to the same conclusion that my heart is perfectly normal. I had one of these episodes of the night of my PS2 before falling asleep and for the first three naps. I feel like it definitely delays going to sleep even though I am very tired just because my heart feels like it’s flopping around my chest and about to come out of my throatmy throat.
My blood pressure is fine and my heart rate has always been a little elevated. More like the 90 to 103 range if not lounging or sleeping. Maybe this affected my results too, I don’t know. I get them so off and on. Haven’t had any palps today. They have no idea on what causes them either. Possibly anxiety and stress.February 27, 2020 at 10:06 pm #12508FerretModerator
Or a deficit of magnesium. You can do some more research on magnesium but here’s a start …
Yeah, the Wellbutrin is IMPROVING your sleep structure which is a plus for you but a negative on a “clean” medication free psg/msg for diagnostic purposes.
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