This topic contains 26 replies, has 3 voices, and was last updated by Laces1989 3 weeks, 5 days ago. This post has been viewed 226 times
- February 28, 2020 at 6:31 pm #12517
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.February 28, 2020 at 7:11 pm #12520
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?February 28, 2020 at 7:14 pm #12522
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.February 28, 2020 at 8:00 pm #12524
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 informedMarch 3, 2020 at 7:03 pm #12566
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.March 4, 2020 at 12:23 am #12578
@natdoc @laces1989 And what about the Wellbutrin? Did your Doctor address that? And did you ever get a video of the face melting?March 4, 2020 at 7:01 am #12584
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.March 4, 2020 at 7:13 am #12586
She did say it’s possible it’s narcolepsy but there isn’t evidence pointing that way right now. She said she will continue to monitor because sometimes narcolepsy evolves and it may just not be full blown at this point.March 4, 2020 at 9:05 am #12588
Good. I’m happy that she will continue to monitor you. Please let us know how it goes with the Modafinal and please read the Cataplexy Cheat Sheet under Resources at the top of this page so that you will recognize the various severities that can exist. Some are subtle and some are in your face obvious to those around you. Perhaps your husband should read it too. Any extreme UNEXPECTED emotion can be a trigger.
I wish you every success as you navigate through this.March 4, 2020 at 7:38 pm #12592
Ferrett is correct in that Wellbutrin has the effect of increasing REM latency. In most studies by an average of 22 minutes. It would not surprise me if the MSLT did not show REM episodes. The standard nap time for an mslt is 20 minutes. The Wellbutrin may have had the effect of suppressing you REM sleep enough that it did not show on the MSLT.
In addition if your Physician still suspects Narcolepsy there is no need to wait a year to repeat the study. Your physician may do a peer – peer review with the insurance companies medical director and explain that the results may have been affected by the medication and she can then get permission to repeat the test.
AT any rate you will also want to get those PVCs checked, multiple abnormal beats in an otherwise healthy person are NOT normal.
I certainly wish you the best and please keep us informed on your progress and response to treatmentMarch 4, 2020 at 9:59 pm #12594
Thank you. I had 20 min to fall asleep but after 15 min past sleep start time they woke me up.
I’m not really sure what to do about the PVCs anymore. I’ve already been seen by two cardiologists and they never had an abnormal EKG and echo was normal. I had to wear a Holter Monitor for two weeks. It showed PVCs and PACs (not daily but when they occurred it was on and off for much of the day) and a few very short episodes of SVT. I’ve had very unpleasant symptoms with the SVT but there wasn’t an explanation for it. Felt like I was going to collapse. For one of them my head felt like it almost dropped and slammers into the table when I was sitting down for dinner but when I looked up and felt normal again the person sitting across from me said my head didn’t drop at all. It felt like I almost lost consciousness. My HR can be a little tachy too but maybe I have an over excited heart. Caffeine doesn’t seem to cause the palpitations. They just seem to happen at random.March 4, 2020 at 10:05 pm #12596
Also I did just read the cheat sheet. I do get muscle twitches unilaterally frequently by my eyes. I’ll have to see if it correlates with unexpected emotion changes.
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