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.
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?
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…
“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.
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.
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.
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?
You can google side effects of any medicine. Here’s the side effects of Xyrem and they do include rapid heart rate and palpitations. I believe that it’s very important to stay very well hydrated when using Xyrem.
I also believe that it’s kind of a fake awakened feeling that many N meds cause… tired but can’t nap. Modafinil did that to me. I’m done with pharmaceutical meds screwing me up.
Yes, I absolutely struggle with the same thing. I take X and vyvannse. Do you take medicine? Do you think it could be side effects? I also take magnesium…
Although this article on magnesium mentions pain in the heading, it is very thorough on why we need supplementation…
Magnesium: The Miracle Mineral that Stops Pain…Including Chronic Neck Pain