No. I haven’t been able to get a video. It usually lasts only a few seconds…maybe 5?
She said that if the symptoms can’t be managed with the meds or if they worsen or new ones are added then we can repeat the sleep studies off the Wellbutrin but she said insurance won’t pay for it for a year.
@natdoc @laces1989 And what about the Wellbutrin? Did your Doctor address that? And did you ever get a video of the face melting?
I got my results back today and the dr went over them. I was diagnosed with hypersomnia and not narcolepsy.
PSG: sleep latency 5 min. 0.9 apnea events per hr. Total sleep time 426 min. Sleep efficiency 94%. Wake during sleep 19 min. REM latency 97 min. Stage N1 2.7%, stage N2 64.7%, stage N3 16.9%. REM 15.7%. Avg. oxygen 94.5%. Pulse 76-84bpm with multiple PVCs. 10 PLMS no arousal. RR 11-14/min.
MSLT: latency to sleep in 5 naps were 12, 11.5, 6, 4, 4. First nap only went into stage 1, other 4 naps stage 2. No REM in naps. Naps were 15 min long. Mean sleep latency in all naps 7.5. Sleepiness index 62.5.
I’ve been given Provigil 200mg to take twice daily (both doses before noon) to see if this helps. I’ll start the meds tomorrow.
I am not on any medications currently actually. Still trying to figure out what I would want to take, if any. I don’t like stimulants, they make me feel kind of sick at some point.
A sleep efficiency of 94% means absolutely nothing if it was not quality sleep. Yes you are right all your symptoms suggest a high level of suspicion.
All the results must be quantified together and looked at in relation to your overall situation. I do hope you get better answers at your next visit. Please keep us informed
I’m guessing that the “you slept well” comment came from my sleep efficiency of 94%. Ive heard that narcoleptic patients normally have a sleep efficiency in the 80s not 90s (from a med school friend). I have no idea the truth to that though. Hope I learn a lot more at my Appt and I’ll share here. I Truly appreciate your insight. it sounds like I just don’t have the whole picture. Maybe the dr isn’t even sure. I would think the mean sleep latency being under 8 along with the symptoms my dr knows a about would at the very least warrant a high suspicion of IH if they don’t think it’s narcolepsy. I’m just hopeful someone can help me function like a normal person.
I must have used the wrong terminology. My mean sleep latency was 7 or 7.5. She said no apnea or leg movement disorder. The first nurse just said I slept good. Not much more than that. No results. Then when I called back and asked they gave me the results I mentioned above, no more detail than that. The second nurse after I called and asked for results said that it’s a clear indication of being tired but reiterated that the dr would talk to me more at my Appt. I’ll make sure to ask lots of questions and for a copy of the actual results. Shortest seep latency naps were 4, 4, 6, the other two I think were 11 or 11.5 , whatever i mentioned above. I doubt they would want to do a spinal tap unless they feel it’s absolutely necessary? Or is it pretty common to do that if results aren’t totally conclusive? Is there any major difference in treatment between narcolepsy and IH if I don’t have severe cataplexy that needs treatment?
Don’t get your hopes up HBOT is an excellent therapy for many disorders and, diseases and injuries. It may serve to slow the aging process by improving overall health but Im afraid there is no “magical” therapy that will reverse the aging process.
Now I am confused. I can tell you that narcoleptics are all over the place when it comes to sleep architecture, most have fragmented and unconsolidated sleep. I have never met a narcoleptic to whom I could say “you slept well” and I have been doing this for an extremely long time. I have no idea what they meant when you were told that your mslt was a 7, MSLT’s are not measured numerically unless they were referring to your sleep onset latencies. Information from your PSG that you need to know are the following: Sleep onset latency, REM latency, Sleep stage changes, number of arousals and the reason for the arousal, leg movements, respiratory data, were there obstructive or central events, were there any RERA’s, what was your oxygen saturation. What was the EKG, were there any artifacts or abnormal beats, What did the EMG look like, was the REM sleep tonic or phasic in nature.
If you experienced palpitations on the night of your study or on MSLT and if these palpitations were cardiac in nature it would have been recorded on the studies.
Please get these answers from your study, it will provide great insight as to what this sleep disturbance may be.
If all else fails ask for a blood test (HLA DQBi 0602) this may provide further insight.
There is also a definitive answer, although most folks dont relish the thought. a spinal tap will provide proof positive of narcolepsy.
Or a deficit of magnesium. You can do some more research on magnesium but here’s a start …
Magnesium: The Miracle Mineral that Stops Pain…Including Chronic Neck Pain
A cardiologist explains why magnesium is so good for your heart health
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.