- This topic has 32 replies, 5 voices, and was last updated 8 months ago by TheRabbitKing. This post has been viewed 1316 times
- February 28, 2020 at 6:31 pm #12517NatdocParticipant
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 #12520Laces1989Participant
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 #12522Laces1989Participant
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 #12524NatdocParticipant
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 #12566Laces1989Participant
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 #12578FerretModerator
@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 #12584Laces1989Participant
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 #12586Laces1989Participant
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 #12588FerretModerator
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 #12592NatdocParticipant
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 #12594Laces1989Participant
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 #12596Laces1989Participant
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.August 31, 2020 at 2:05 pm #15602Laces1989Participant
All-I just wanted to update you. I’ve been on Modafanil since February or early March and it’s something that I never want to live without. It doesn’t cure me but it makes a huge difference. I’ve barely had any days where I’ve felt like I might fall asleep at a stop light. I am still tired and yawn a lot and take naps some days but I feel such a difference. The other somewhat strange thing is that I almost never wake up with the sleep inertia I almost always had. I still am tired and rarely want to get up when my kids wake me, but I rarely wake up with a pounding headache and hours of mental fogginess and feeling sick. I have also noticed that my hypnagogic hallucinations (or dreams that I’m conscious of watching, whatever they are) have all gone away. I’m not sure I’ve had any since starting these meds. I do still get some very emotional dreams where I wake up crying or am trying not to cry and am heavy breathing while partially awake, but it’s not often. They are usually about death of my kids or monsters.
I did have to see my cardiologist for more testing because of the PVCs and I was diagnosed with inappropriate sinus tach. They said it’s not really an issue, my heart structure is normal, but I take 25mg metoprolol before bed to manage the palpitations and being the HR down a bit. It took about a week of taking it but I barely ever notice palpitations anymore. I was taking it in the AM with the modafanil but it caused drowsiness.
I recently was switched to adderall xr 10mg once daily (insurance wouldn’t cover an additional pill 4 hrs later like I did with the modafanil) and I’ve actually found it doesn’t help me as much as the modafanil did, at least at the 10mg dose. I’ve been monitoring my HR and BP as requested by my dr and no changes. I might see if they can bump up the dose a bit because I’ve had to take a few naps per day since I started taking the adderall a few days ago. I’ve had no other side affects besides decreased appetite, which isn’t a problem for me since my BMI is 30 or 31.
One reason I also think I feel better is that I’m not working. Late March I was permanently laid off due to COVID and as a result I get more sleep overnight and can occasionally take naps if my kids allow me to do so. I also just have overall less “time stress”, don’t have to get places by a sharp time, don’t have to do my hair and makeup daily, etc. it all helps me get more sleep.
Side note,(Modafanil had to get switched with something else at least temporarily as it interferes with oral birth control pills and even some of the others like nuvaring. My IUD is perforated and is getting removed in a few days. My husband is getting a vasectomy in a few months so I didn’t want another IUD places and opted to go back on the pill.September 1, 2020 at 12:28 am #15627FerretModerator
Glad you found something that helped (Modafinal) but tell your hubby to get that vasectomy asap because Adderall can diminish in effectiveness over time unless you take regular vacations from it and/or increase the dosage.
Modafinal is a dream to stop and start but Adderall is not.
Also (excuse me for budding in but) make sure your hubby does a seminal fluid check AFTER (don’t remember how long) the vasectomy to make sure the vasectomy actually worked.
You’re on your way! It’s a process but it’s wonderful to hear that you’ve had early success with treatment. Build on it.
Sending cyber/masked/no touch hugs!September 2, 2020 at 1:07 pm #15642Laces1989Participant
Thank you Ferret, helpful to know about the Adderall. I don’t think 10mg is enough but I don’t think I need to be on a really high dose. Maybe 20mg would work well enough I would think since I’m on 10mg now. Maybe it would help if I just reduce doses short term, especially in summer when the weather is nice, and then bump back up? It seems that I can cope better with sleepiness when we have sunshine and warmth vs cold and no sun here in Michigan for months on end (late October-late April usually…)
My husband has been trying to get his vasectomy since May, but because of COVID they wouldn’t even see him until late August and the soonest they could get him in for the procedure is Oct. We will definitely be testing for effectiveness! I love kids but I don’t think I have the energy to handle a third child. It’s just too much.
My Dr. won’t increase the Adderall dose until I’ve been on it for 30 days, so we will see how I’m doing with it at that point. Also, I’ve heard Adderall can cause tooth issues like meth, is this true? I’ve always taken good care of my teeth and have never had a cavity, but seeing this statement online made me worried.
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