- This topic has 11 replies, 4 voices, and was last updated 3 years, 1 month ago by Ferret. This post has been viewed 2105 times
- August 6, 2017 at 7:34 pm #2647tortoisegirlParticipant
Sorry in advance for the long post, but I have an interesting / complicated case requiring a lot of background info.
I’ve been seeing a sleep specialist (pulmonologist background, but the most highly recommended in my area) with an in-house sleep lab. In the last 5 years I’ve had 5 sleep studies. The most recent was last month, which was also my first time doing the MSLT. My doctor hadn’t pushed me to do the MSLT previously as she thought narcolepsy was a long shot, it would require stopping meds, and it would only help in possibly getting insurance to cover meds. I was originally referred to a sleep specialist by my pain specialist due to me being on opioids for chronic pain (they wanted to check they weren’t causing apnea) and my reported sleepiness. I’m a female in my early 30s, and I’m also on a bunch of other meds for multiple chronic conditions in addition to the opioids.
We’ve since ruled out the pain meds being the cause of my sleepiness (as I took a month off from them with very little change in sleepiness, then re-started at a lower dose and didn’t have an increase in sleepiness, and I think I started developing milder excessive sleepiness even prior to starting on them). My main issues are being overly groggy in the morning upon waking up, and nodding off / microsleeping unexpectedly when I’m not doing something active (it occurs most when reading, watching tv, and driving). Often I really don’t feel all that tired when I start nodding off though (none of that difficult to keep eyes open type stuff like I’d get late at night), and I only know I am doing it when I wake up.
I feel the most sleepy in the morning and the least sleepy in the evening. The EDS has got worse over the years. My untreated ESS is around 15/24. I have no other symptoms associated with narcolepsy, definitely no cateplexy. The only slightly strange this is that on days I nod off a lot, sometimes I see movement at the corner of my vision which isn’t there, like a bug crawling at the edge of my desk; not sure if that is a vision trick or an actual hallucination. I feel slightly better when I sleep longer (9-10 instead of 7-8 hours), but that isn’t very feasible during the week, and doesn’t make me symptom-free.
I’ve been on stimulants for around 5 years, mostly low dose IR Ritalin in the morning on weekdays. That was chosen for affordability as insurance only covers it for ADD. The med controls the EDS effectively enough that I am not at risk of nodding off while driving or while at work. One dose often seems enough even though it doesn’t last the entire day as it gives me some momentum if you know what I mean. If I had a long class/meeting or something or I notice myself nodding off, I then take an extra smaller dose. However, lately I developed an issue where stimulants started causing a severe headache when they wore off, and a couple times a true rebound headache which would only go away while taking the med, or if I abstained from the meds for 4-5 days. I also was tried on IR Adderall, and more recently, Focalin/Dexmethylphenidate, with the same effect. My doctor suggested Dexedrine/Dexamphetamine next.
No idea why I took stimulants for years without this issue, but I am very prone to headaches as I have a chronic headache condition, and many many meds over the years that I’ve tried for various conditions give me a headache. I have the least issues with Focalin, but it is still a problem, and I’ve been managing it by taking as low of a dose as I can, and taking it 2 or 3 times a day (smaller doses later on) to taper off. I haven’t tried any long acting stimulants due to their higher cost, as often I don’t really need more than one dose per day, I need something which is strong and fast acting first thing in the morning so I can safely drive to work, and I think they would be more likely to cause a rebound headache which would stick around. Caffeine is effective at least at keeping me from nodding off, but not as good at making me feel awake, and I hate the side effects like jitters.
From past night sleep studies, I have a history of mild apnea, severe limb movements (PLMD), and lots of arousals (mix of respiratory, limb, and spontaneous). I am also very prone to twitching when falling asleep, often severe enough to wake myself up, sometimes cycling for an aggravating amount of time with being woken up as soon as I fall asleep. My highest AHI was 9/hour. I was tried on CPAP for 3 months, average AHI dropping to 2/hour, without an impact on my daytime sleepiness. Therefore, as the apnea was only mild, I decided not to use the CPAP.
They never did a study with CPAP as I got an auto titrating machine, but I wouldn’t be surprised if it was causing more arousals, counteracting the benefit of less apnea. I couldn’t tolerate the auto-pressure setting as it would knowingly wake me up, so I used a constant pressure. I’ve heard this is common with mild apnea, and why they usually don’t even treat with CPAP with an AHI under 15/hr unless you have daytime symptoms (or at least insurance won’t pay for it, as studies have shown it ineffective). I was started on Gabapentin for the PLMD (after not tolerating the 2 more common meds) and re-tested with only mild PLMD and very few arousals from it.
I hadn’t tried Provigil/Nuvigil due to cost / insurance not covering it (and as I was doing ok on CNS stimulants and I didn’t want to deal with the birth control interaction). Now that the cash price has gone down significantly and I’m having headache issues with stimulants, I recently tried a one time 25mg dose of Nuvigil. I didn’t react well, but not an allergy, so next time I have a chance on a day off I was going to try it again. My doctor thought that for me at least it may be a good background med, but I’d likely still need a short acting stimulant dose in the morning to kick start.
With my most recent studies (PSG & MSLT), I tapered off Nortriptyline (for migraine prevention) 2 weeks prior, and abstained from the Focalin for 5 days prior. I had a migraine the evening of the PSG with a lot of nausea, so I ended up taking multiple doses of triptans and 2 different nausea meds. I ended up sleeping very well between my usual meds, the migraine meds, and Ambien.
For the MSLT, my impression was that I only slept for parts of the first 2 naps (with dreams in both) and none of the last 3. I don’t commonly nap as it always seems like it takes me a long time to fall asleep, and once I do, I can nap for 2-4 hours, then wake up groggy. Sometimes I’ll do it if its a holiday and I’m bored, and can still sleep a full night after a long afternoon nap.
However, I got some really interesting results back from both the PSG and MSLT (my doctor actually said my sleep architecture on the PSG was the most bizarre she had ever seen!). No REM in either test. PSG had a big chunk of Stage 3/4 sleep in the beginning, then Stage 2 the rest of the night (no cycling at all except for a brief wakeup I don’t remember). Slept for 5/5 naps with an average latency of less than a minute.
My doctor said she wasn’t expecting my MSLT results to be that severe at all. After the fact we figured out that it was likely the nausea med Promethazine that suppressed REM (even though the 2 papers I found on it said it was a milder REM suppressant, likely to decrease but not eliminate total REM, on average from 21% to 16% of sleep at the dose I took). The sleep tech hadn’t noted that I took it, but had noted everything else, so its possible I forgot to tell her as I was feeling very ill. It was however on my med list that I reviewed with my doctor prior to the studies as something I took as needed, and she didn’t mention the need to avoid it (only antidepressants and stimulants), so I’m not sure if she knew prior to my weird study results that it could be an issue.
I had REM on all 4 previous PSGs, although not until the end of the night (and this study had the longest sleep time and least apnea & PLMDs of all of them, so its not like I didn’t sleep long enough or well enough to reach it). Promethazine is dosed every 6 hours, so it wouldn’t still have caused sedation for the MSLT. However, it has a 9-16hr half life, so it could have possibly still had a REM-suppressing impact during the MSLT, which is my main question and purpose of this post (see below).
SLEEP STUDY PSG RESULTS:
[all but (1) were on Ambien, all had snoring, all 100% on my back, all without significant desats]
(1) 2012: Done to cheap impact of opioids on sleep and rule out disorders causing EDS. 397min total sleep, 80% efficiency, 25min sleep latency, 411min REM latency, AHI 0.2/hr, arousals 3.8/hr, limb movements 8.2/hr, Stage 1 2.4%, Stage 2 76.4%, Stage 3/4 17.9%, REM 3.3%
(2) 2013: Repeated as I still had symptoms and I slept crummy in study 1. 507min total sleep time, 96% efficiency, 5.5min sleep latency, 451min REM latency, AHI=5.8/hr, arousals 21/hr (14/hr limb), limb movements 43.7/hr, Stage 1 3%, Stage 2 61%, Stage 3/4 23%, REM 13%
(3) 2014: Repeated to check PLMD treatment. 489min total sleep time, 94% efficiency, 12min sleep latency, 255min REM latency, AHI=9.0/hr, arousals 10/hr (3/hr limb), limb movements 24.8/hr, Stage 1 3%, Stage 2 64%, Stage 3/4 17%, REM 16%
(4) 2015: Repeated to verify untreated apnea hadn’t got worse as sleepiness was worse. 484min total sleep time, 98% efficiency, 4.5min sleep latency, 275min REM latency, AHI=7.2/hr, arousals 10/hr (limbs 3/hr), limb movements 43.7/hr, Stage 1 1%, Stage 2 47%, Stage 3/4 28%, REM 24%
(5) 2017: Repeated to verify untreated apnea hadn’t got worse & PLMD was under control, and to precede a MSLT.
518min total sleep, 99% efficiency, 4min sleep latency, AHI 0.9/hr, arousals 5.9/hr, limb movements 8.5/hr (none causing arousals), diffuse alpha wave intrusions (said to known to be associated with syndromes such as chronic pain – this was the first time it was noted, but my doctor said she hadn’t always noted this until more recently), sinus arrhythmia throughout (first time it was noted, noted as unknown significance, and my doctor didn’t mention it when reviewing my results), 2% Stage 1, Stage 2 63%, Stage 3/4 35%, REM 0%
(1), 2017: slept in 5/5 naps, no REM, average sleep latency 0.6min (0min, 0min, 0min, 1.5min, 1.5min), mix of Stage 1 & 2 sleep, avg sleep 14.8/15.7min in bed
(1) Does anyone here think it is possible I could have narcolepsy that could show up in the form of SOREMs in a repeat MSLT?
My doctor said the only benefit of a narcolepsy diagnosis is insurance coverage for Provigil/Nuvigil and the option of Xyrem. I asked her if I did end up being diagnosed with narcolepsy, with my meds (namely opioids and muscle relaxers), if Xyrem would even be an option, and she said probably not. Therefore it doesn’t sound like she thinks it is worth it to redo the MSLT despite knowing the REM part was inconclusive. It would be a huge pain to stay off meds and take a day off work to redo the test, I wonder if insurance would even cover it again (although they have covered 4 PSGs so far without an issue), and who knows if there would be unknown future ramifications with having it on my record.
However, it would be nice to have confidence in a diagnosis at least. My current diagnosis from the MSLT is idiopathic hypersomnia, but I seem to be right in between N w/o C and IH. I had a more severe MSLT sleep latency than is typical with IH, and get frequent sleep attacks which is more consistent with N, but none of the other N symptoms. My response to naps is more in line with IH, although I’m curious if I tried napping with an alarm set for 20 minutes, if I would wake refreshed (never tried that as I thought it took me that long to fall asleep…I think I must just be in Stage 1 and think I am awake).
(2) Did anyone have a very slow development of narcolepsy, later developing more symptoms like Cateplexy a decade or more later?
(3) Has anyone had a PSG where they didn’t reach REM until way later in the night, then gone on to have 2+ SOREMs on a MSLT? On all 4 previous PSGs I didn’t hit REM until later in the night, which seems to go way against N. It is possible one of my many meds (mostly taken at night) suppresses REM but then wears off, although I’ve looked them all up and none are noted to do so (although most haven’t been studied for their impact on sleep).
(4) Are any CNS stimulants FDA approved for narcolepsy? Does anyone get CNS stimulants covered by insurance for IH or N?
I seem to find mixed info, some saying Adderall and Ritalin are FDA approved for narcolepsy in addition to ADHD. From what I found, my insurance only covers CNS stimulants for ADD, and only covers Provigil/Nuvigul for narcolepsy, shift work, & treated apnea.
Right now I am leaning towards not repeating the MSLT unless something changes, like I get off opioids (opening the option for Xyrem if I could get diagnosed with N), take high-dose Provigil/Nuvigil that gets cost prohibitive, or get new insurance that would cover CNS stimulants for N. I just have that thought in the back of my head wondering what results I would have got on the MSLT without the REM-suppressant. I’ve read that 50% of folks get their diagnosis changed either from IH to N or from N to IH with a repeat MSLT, even without having an issue like this with their test (ie. low retest reliability).
Plus there is the issue that we wanted to do the repeat PSG to check if my apnea had got worse and now requires CPAP, and to verify the med I take for PLMD is still effective enough. I’ve previously had the majority of those two issues in REM, so not getting REM was likely what made both of those be a non-issue this time. Since my doctor and I communicated about the med suppressing REM in between visits, I wonder if at my next visit she will bring up re-testing.
All in all though, I think this MSLT was still worthwhile. My doctor is now taking my EDS much more seriously. I think despite her starting me on stimulants even prior to any study due to my saying I was falling asleep driving and such, she didn’t think my case was very severe. Maybe as my ESS isn’t severe? I’ve never fallen asleep when talking to someone or eating or anything like that.
Thanks in advance! I’d appreciate any input. I had previously been reading the NN forums. Its a shame that they aren’t still online for reference and that this board isn’t getting as many posts yet as that one did.August 6, 2017 at 8:02 pm #2649NatdocParticipant
Wow,thats some testing. Your symptoms and history certainly sound more in line with IH than narcolepsy. Is it possible to post a full list of medications you take? It would also be helpful to see the hypnograms associated with your studies.
Yes it is certainly possible to develop cataplexy later on.
Though it is not something that I routinely recommend I think at this point consideration for a lumbar puncture could be entertained, this at least will let you know if narcolepsy is a consideration, though not 100% positive it is more specific than the PSG/MSLT.
If I may be a little nosy why opioids? what type chronic pain issues do you have? Chronic pain and sleep go hand in hand and play a major role in sleep disorders. Both issues need addressed simultaneously for effective outcomes.August 6, 2017 at 10:05 pm #2651tortoisegirlParticipant
Hi! Thanks for the reply. I’ve been on the opioids for about 8 years due to a constant severe headache which started 11.5 years ago, diagnosed as New Daily Persistent Headache (although that is just a diagnosis of exclusion, like IH). The doctors I’ve seen (dozens) have tried me on the usual meds & treatments (dozens) and did all the usual tests and they have been the only thing that has been significantly helpful long term. My pain management is the best optimized as we can currently do through my pain management specialist and my headache specialist neurologist. However, I do have a seemingly high amount of spontaneous arousals and the newly-found alpha wave intrusion. I usually sleep straight through the night without remembered awakenings though.
Who knows for how much longer I’ll be on the pain meds though, as unfortunately the pain management community is moving away from daily opioids for noncancer chronic pain, even in patients like me who have done well on them long term and have tried & failed everything else. I used to be on 3x the dose, but they made me try Suboxone (usually for addiction but helpful for some folks for chronic pain) and go through a mess of withdrawal, then kept me at a lower dose, all they would agree to, and that is a lot more than many people get, especially with my type of unproven pain and at my youngish age. Doctors are getting a lot of pressure to reduce their prescribing, so they are doing all they can to cut down their risk of facing issues with the DEA.
At this time I wouldn’t be willing to do a lumbar puncture as from what I know, I don’t think the risk to my headache condition is worth what info it could give (and who knows if my doctor could even make that happen). I think if the chance of N is low, then waiting until if it is more of a slam dunk type diagnosis may make sense. My severe MSLT results really through me for a loop though and have me wondering if N is a real possibility, when I didn’t think so before. Plus IH doesn’t seem like a really close fit either
Something else I remembered that doesn’t seem to line up with IH: I have no problem getting out of bed at the first or second beep of the alarm. I read about a lot of IH patients who have to set multiple alarms and still don’t hear them. I’m not at all happy to be awake or alert or anything, but I’m vertical. Once I sit down I start nodding off without meds though.
I’ll see if I can get the hypnograms of sleep stages from my online records. I assume recent PSG & MSLT, and a more typical PSG?
Here is my med list. It isn’t quite as bad as it looks, as its a lot of as needed stuff and a lot are duplicates. Thanks!
Daily: Methadone (4x/day for pain), Tizanadine (bedtime, muscle relaxer), Gabapentin (bedtime, PLMD), Toviaz (bedtime, bladder spasms), Verapamil ER (bedtime, migraine prevention), Vitamin D (bedtime, deficiency treatment), Orthocyclen (bedtime, birth control), Linzess (am, laxative), Senna (am & bedtime, laxative), Miralax (am, laxative)
Daily, started after study 5: Nortriptyline (bedtime, antidepressant, for migraine), Namenda (bedtime, usually for Alzheimer’s, but I take it for NDPH & migraine)
As needed: Dexmethylphenidate (IH), Oxycodone (opioid, pain), Lorzone (daytime muscle relaxer), Ketamine (pain), Diclofenac (NSAID, pain), Zofran (nausea), Promethazine (nausea), Maxalt (migraine), Macrobid (UTIs), Simethicone (bloating), and a couple weird otc supplements with multiple ingredients for bowel issues, Elidel (topical, eczema), Triamcinolone (topical, eczema), Tretinoin (topical, acne)August 6, 2017 at 10:44 pm #2653tortoisegirlParticipant
I got some hypnograms; lets see if this will work.
August 8, 2017 at 7:53 pm #2737NatdocParticipant
After looking at this medication list I think I agree with you, there is no way to get an accurate sleep study or MSLT. Actually I have been in Neurology for 20+ years and I have never seen medications of this type , concentration or mixtures ever prescribed for headaches.
Virtually all of your medications affect sleep architecture,and cause drowsiness. Five of the medications you list may cause “serotonin syndrome”, three of the medications are responsible for cardiac dysrhythmias and may actually lead to Long QT syndrome or heart block. There is a mixture of Narcotics and benzodiazepines which is a deadly combination, and there are at least five CNS depressants.Most all the medications you are taking have the ability to cause rebound headache even if you miss only one dose, others will cause rebound headache when used on daily basis, headache management with rescue medications should not be used for more than 2 days per week.
I know you are seeing a headache specialist and a pain management physician, I hope they are talking to each other.
At any rate I do not believe you will have an answer to your sleep question while on these medications. Of course this is just my opinion and I certainly wish you all the bestAugust 8, 2017 at 7:57 pm #2741NatdocParticipant
Sorry I also hope that Jesse will see this post and give us expert advice on the combination of these medicationsAugust 8, 2017 at 9:15 pm #2745tortoisegirlParticipant
Umm what are you thinking is a benzo? I’m not aware of anything I’m taking being one. My pain clinic is very much against them for patients on opioids.
I don’t have a typical infrequent tension or migraine headache type condition, but a rare condition which causes *constant* severe pain that just happens to be in my head. The whole rebound headache thing went out the window as it just isn’t possible to have any sort of life and only take treatment meds twice a week when nothing else works…in the last decade I’ve probably tried over 100 treatments – meds, nerve blocks, Botox, every alternative therapy, and even a nerve stimulator trial.
I have had rebound headache from other meds but nothing I am taking now (no new headache pain type/location on top of the usual one). Many of the meds are taken infrequently as needed. Most everything that is sedating is only taken at night or infrequently. The usual culprits for rebound headache are meds which combine multiple analgesics with caffeine (like Excedrin or Fioricet), and some folks just aren’t prone to them while others are. Even if I did have a rebound headache, I wouldn’t care as long as I was functioning better than without the med.
I have multiple doctors agreeing this is the best thing they can offer and each knows what the other prescribes. I have no signs of Serotonin syndrome. I’ve had a warning of that from my pharmacy with different med combinations previously, but not the current one, and I use one pharmacy for everything but one prescription from a compounding pharmacy, and the usual pharmacy knows about it.
I’ve had an ECG back when I was on an even higher dose of Methadone and was cleared, no issues. None of my sleep studies had any breathing issues besides the mild apnea (which wasn’t even associated with significant oxygen desats). I added each of these meds one at a time and didn’t have an issue with sleepiness after adding them. The sleepiness started before any of these, and has just got slowly worse as the years progressed. Yes meds may make it slightly worse, but I am fairly certain none of them are causing it. Methadone would be the most likely culprit, and I took a month off from it a couple years back and there was very little change in my sleepiness.
Thanks for the input. It sounds like I may be in between IH and N, and waiting until something changes may be my best option. Most of what I read about either condition doesn’t really fit (I don’t have the other symptoms of N and I have delayed REM in previous PSGs, and I don’t have the long sleep time and difficulty getting up with an alarm and such of IH). I was just curious if any of you were in the sort of situation where things seemed in between IH and N and you knew you took something that suppressed REM in an MSLT if you would be asking to repeat it or not. At least I have a doctor willing to prescribe meds just to treat the sleepiness, even before these MSLT results. Best wishes.August 8, 2017 at 10:08 pm #2747FerretModerator
Tortoisegirl, you have my sympathy. I only had a constant headache for three solid years but that was a full ten years before being diagnosed N with C.
When I figured out what was causing it, I never looked back and very rarely get them now.
1) Birth control pill gave me headaches so bad I wanted to bang my head against a wall. Stopped those.
2) I made a different kind of packaged Uncle Ben’s Rice every night. BAD chemicals (specifically MSG) and BAD headaches every single flippin’ day. Stopped those too.
3) #2 was the start of the chemical confirmations for me. Orange cheese? headache. Old cheese (like Blue or Cambazola) headache. Old orange cheese? Close my eyes to the throbbing and pulsing pain in my head.
4) Preservatives, most food colourings and flavor enhancers followed the discovery. Campbell’s soups/ soup cubes/ Swiss Knorr soups? All kill me.
So, basically, I’m asking you to check your food consumption as to the cause of your headaches. You should also know that all that stuff will totally wreck my nights sleep as well. I can predict it… and throw in curry and chili as well.
edited to add: And constipation from pain killers is something else that causes headaches from all the toxins that you’re not getting rid of in a timely manner.August 8, 2017 at 10:58 pm #2753tortoisegirlParticipant
Thanks for the info. I don’t get headaches plural…it is literally one headache that started and has never left. This type of condition has never been known to be associated with typical headache/migraine triggers, as it wasn’t headaches that went from infrequent to frequent to constant, but constant from the start. It is more common post infection, surgery, injury, etc, where something triggers it and you just can’t turn off that “switch” in the brain. Mine was with a sinus infection after a year of frequent illness, including mono & strep.
That said, I have done extensive elimination diets and diet tracking. I have found some triggers for the migraines I get on top of the constant headache (certain artificial sweeteners), but nothing touches my regular constant headache besides a handful of meds. I’m glad you were able to figure things out! Success stories are awesome.August 8, 2017 at 11:25 pm #2755TheRabbitKingKeymaster
That constant headache thing happened to a friend after sky diving once. They kept on looking at sinuses and ear canals, cuz ya know, pressure differentials and all, but they never found a reason for it, but it was about 2 years before it completely went away, and even now she says she stills feels a twinge here and there.
My current jam: Anathema - SpringfieldAugust 9, 2017 at 8:12 am #2757tortoisegirlParticipant
Weird. Glad to read her headache went away. Some folks with my condition have a form which goes away on its own (and sometimes comes back, then goes away again), but most that have a constant sudden onset headache for over a year end up having it long term.August 9, 2017 at 9:49 am #2761FerretModerator
BTW, in case my post wasn’t clear, my constant three year headache (24/7/365) was caused by the Uncle Ben’s Rice (all the different flavours) which I prepared every night. When I stopped preparing that rice, the headache went away. I thought that the rice was healthier than potatoes. Man, was I wrong.
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