MSLT Fail Not Fair

[Guest]

I asked my doc to have a sleep test done because I sometimes wake up with racing heart, have chronic migraine headaches, and I don't seem to sleep 8 hrs straight through. Boy was it a mistake to even go there. Did the overnight study, and then a daytime study (MSLT) I am now terrified to go back in fear that my drivers license is at stake. ......

My normal sleeping patterns are from 2 am to 9/10 am. At the sleep clinic I was told to show up at 8:30 pm. I didn't think they would be asking me to go to bed so off my schedule. I ended up with a full blown migraine and was able to sleep by 11. If I had not had a migraine I would have never been in bed that early. At 5:45 AM they woke me up. (It was still dark!!!) This is over 4 hours earlier than I ever get up at home. I was TIRED. I knew I would be tired all day being woke up so early. Plus, I took tylenol extra strength for the migraine and it really bags me out. I was asked to go to sleep every 2 hrs for 30 min. I tried very hard to sleep because I did not want to be awake with the migraine. I slept every time they told me I could. I can always fall asleep within minutes. Everytime they asked me how tired I was I said I could go back to sleep. At 4 pm went home.....Jump ahead to meeting with doctor a week later.....

Was told quite sternly that this was very serious, he is suggesting I have severe daytime sleepiness, and mild sleep apnea with moderate severe apnea during REM, & sleep fragmentation. Didnt bother to tell me any risks to my health until I asked. I rarely take naps at home, the only time I sleep during the day is when I have a migraine, at which point I am in bed for days and I do not drive during this time.
I don't agree with the MSLT. I argued that I had a migraine, took meds, was woke up at 5:45 am, and of course I was tired. I don't feel 6 hrs sleep was enough but the doctor did. He seemed quite angered that I was questioning the test and told me normal people don't sleep in the day after sleeping at night then he asked me if I drive and showed me a paper they send to the ministry for non compliance of CPAP. I ended up extremely upset and left the room crying, terrified that my drivers license is going to revoked. I am 49 yrs old, not overweight, with a history of anemia & Rhuematoid Arthritis. He said I am not narcoleptic but am displaying traits of them because I fell asleep so quickly during naps. I again argued that I did what they told me to do...go to sleep....I had a horrid headache, I don't respond well to being woke up so early in the AM. and not allowed caffeine. I also filled out the papers wrong...I answered them as if I had a migraine how tired would I be....

Was told to go across the hall and pick up my CPAP which I did. I've been using it for the past week and have to go back to the doc to hand in the results and go for another sleep study. I'm scared now. I don't want to go to sleep during the study because I'm afraid of my drivers license being taken. I don't know if this doctor was trying to scare me into getting the machine or what...are these thier usual tactics? Im Canadian, and this is the results of my study:

apnea & Hypopnea index of 12.8 hours of sleep
Rem & Supine AHI 16.1 & 18.1
73 Respiratory arousals with respiratory arousal index of 12 per hour of sleep
Oxygen saturation minimum was 91% with a mean of 96% Awake mean oxygen saturation was 96%
ECG : no cardiac arhythmia was reported
PLMS: No evidence of periodic leg movements
Alpha-intrusions: Yes
MSLT: 4 naps during the day with latencies of 4.5, 0.5, 0.4 and 1.3 minutes. Mean sleep latency was 1.6 minutes. No sleep-onset REM period (SOREMP) was noted.

Impression:
1. mild sleep apnea, but moderately severe in REM with associated disruptive snoring.
2. some sleep fragmentation due to intervening arousals and awakenings.
3. Reduced amount of REM sleep

Recommendations:
1. In view of MSLT results, CPAP trial recommended
2. Behavioral modifications positional therapy
3. advise patient about risks of driving motor vehicle and/or operating heavy machinery when feeling sleepy.
4. patient will be seen in follow up to discuss the sleep study results and treatment recomendations.

Can I get a second opinion? Is this guy going to notify the ministry ? I've been driving my whole life, never fall asleep at the wheel, never had an accident. He told me that if I get into an accident I may not be covered by insurance because of the results of my MSLT. Such bullshit. I don't want to go back for the followup but apparently theres an sd card in the CPAP that records everything. Can I argue the results of the MSLT based on my migraine? Has anyone else been treated this way after a study?

[Nick Danger]

I don't know the rules in Canada, so can't speak to the likelihood of revocation of a regular driver's license. A commercial license in the US would definitely be at risk if you refused treatment for sleep apnea.

The things you are reaching for as rationales don't invalidate the study. It appears that you have sleep apnea - welcome to the club!

Did your doctor share with you the health risks of untreated sleep apnea? They include high blood pressure, stroke, heart attack, depression, diabetes, weight gain, and automobile accidents - among others. This can result in premature death if untreated.

I admit I'm not impressed with your doctor's bedside manner. I think he may have said some of the things he said because he was trying to get your attention and point out how serious this can be if left untreated.

I'm sorry - I know this isn't what you wanted to hear. I wish you the best and hope you agree to treatment.

[Guest]

Hi Nick, thanx for your reply. Yes he did tell me the risks, but only after I asked what would happen if I didn't wear the machine. He seemed more worried about pointing out this letter to the ministry which immediately scared me into never wanting to return to this place again.
I'm not disputing the results of the apnea, it is what it is, and I don't have a problem wearing the mask if its necessary, but I doubt if it really IS necessary and I disagree with the daytime study results when I had a migraine and took meds for it. If they had told me not to go to sleep I would have stayed up all day. I don't believe that just because I went to sleep when they told me to is an indication that it would impair my driving.

[archangle]

Unless they're deliberately lying, the overnight sleep study is pretty conclusive. It doesn't matter if you're dead tired. Tired doesn't cause apnea in non-apneacs.

Heavy doses of opiates, codeine, Vicodin, or some other powerful drugs might make you show apnea. You could probably take enough Tylenol to damage your liver and it won't affect the sleep test.

[Julie]

What you're calling migraines might actually be true migraines, but... if you wake up with them routinely, they are in fact a classic symptom of apnea, and should go away (at least the a.m. ones) once you get Cpap working properly... so should overnight bathroom breaks if they're a factor, and of course daytime sleepiness in whatever form it might take for you. Sleep studies are notorious for being nasty and most of us feel we've hardly slept, let alone having to start at such an early hour, but they're what we have at the moment for any kind of standardized testing and do manage (regardless of what your MD said) to collect lots of useful info.

Please let us work with you to help you get sorted out with the right equipment, etc. for you. If you go along with it all you're much less likely to have your license pulled. However, I would try if at all possible to get another doctor, or at least referrals to either a neurologist or pulmonologist who deals with sleep problems, because your present doc does not sound very nice at all, and may not be terribly knowledgable either.

There is hope!

[Sludge]

I don't know how things work in Canada, but if you had an MSLT result like that in US and got into the aforementioned auto accident, in the subsequent civil suit you'd be paying approximately 10 godzillion bucks.

However, one would only need to get an "expert opinion" to counter that your MSLT results were not "not fair", they were "ridiculous". Taking a Delayed Sleep Phase person and subjecting them to that sleep pattern would result in precisely those results.

Consequently, I would take the approach of being calmly dismissive:

Somebody: "Omigod! Your Mean Sleep Latency is 1.6 minutes! You're going to die!"

You: "Not really. The results were caused by insufficient Sleep Secondary To Lab Effect (and them having NFI what they were doing."

Subsequently, IIWY I'd be quite aggressive in getting that result amended to be put into proper perspective. Have them rewrite the interpretation to include above.

Questioningly (running out of Introductory Adverbs), what was your Epworth Sleepiness Scale prior to testing?

[Sludge]

Unless they're deliberately lying...

Certainly a possibility.

apnea & Hypopnea index of 12.8 hours of sleep
Rem & Supine AHI 16.1 & 18.1
73 Respiratory arousals with respiratory arousal index of 12 per hour of sleep

Can you clarify exactly what this breakdown is (apneas. hypopneas and RERAs)?

Also, ask them for the Raw Data (it'll come on a DVD) because you need that for your second opinion.

[purple]

Another perspective. I have arthritis which causes me problems sleeping. That is, I can take pain killers, and sleep as long as those pain killers are in effect, waking up as my blood level of pain killer drops. Any doc who says that if you sleep at night, never needs to sleep during the day misses that individuals who have pain do not have long connected hours of sleep. Rather intermittent times of waking and some longer periods of lower level of sleep. In addition, as a diabetic, I am tired, during the day, not only because of high BG, but also moderate BG. That is, I have no energy when my BG is like 95, as my effective BG is much lower, and the cells are not getting sugar.

What I am trying to say is that your doc that you would not feel the desire to sleep during the day if you got sleep at night, is not completely true. If the issue is, he wants you to use the machine properly at night for a period of time, then see if you really still need to sleep during the day, he might be pushing you in the right direction.

[Guest]

Unless they're deliberately lying, the overnight sleep study is pretty conclusive. It doesn't matter if you're dead tired. Tired doesn't cause apnea in non-apneacs.

Heavy doses of opiates, codeine, Vicodin, or some other powerful drugs might make you show apnea. You could probably take enough Tylenol to damage your liver and it won't affect the sleep test.

Archangle, I don't think they are lying, not about the night time study anyway...but I think they are misinterpreting my MSLT as far worse than I actually am. I am a regular user of codeine & muscle relaxants for pain conditions but not high dose. Doctor said that these would not interfere with study, however, when I take tylenol at home, it makes me extremely tired. Migraines also make me extremely tired.

[TorontoJewel]

Unless they're deliberately lying...

Certainly a possibility.

apnea & Hypopnea index of 12.8 hours of sleep
Rem & Supine AHI 16.1 & 18.1
73 Respiratory arousals with respiratory arousal index of 12 per hour of sleep

Can you clarify exactly what this breakdown is (apneas. hypopneas and RERAs)?

Also, ask them for the Raw Data (it'll come on a DVD) because you need that for your second opinion.

The only breakdown on the paper is that the longest apnea 25.0 seconds, longest hypopnea 40.0 seconds
I will ask for the raw data thanx

[Sludge]

I am a regular user of codeine & muscle relaxants for pain conditions but not high dose. Doctor said that these would not interfere with study...

Drug-induced apnea. Taking certain medications such as opioids — including morphine sulfate (Ms Contin, Avinza, others), oxycodone (Oxycodone HCL, Oxycontin, others) or codeine sulfate — may cause your breathing to become irregular, to increase and decrease in a regular pattern, or to temporarily stop completely.

http://www.mayoclinic.org/diseases-cond ... n-20030485

Hey listen, we're not talking about you walking in there and dropping dead of a drug overdose.

We're talking about disturbing your brreathing just enough so they can score it a hypopnea or a RERA and now you're on CPAP with no driver's license.

[TorontoJewel]

What you're calling migraines might actually be true migraines, but... if you wake up with them routinely, they are in fact a classic symptom of apnea, and should go away (at least the a.m. ones) once you get Cpap working properly... so should overnight bathroom breaks if they're a factor, and of course daytime sleepiness in whatever form it might take for you. Sleep studies are notorious for being nasty and most of us feel we've hardly slept, let alone having to start at such an early hour, but they're what we have at the moment for any kind of standardized testing and do manage (regardless of what your MD said) to collect lots of useful info.

Please let us work with you to help you get sorted out with the right equipment, etc. for you. If you go along with it all you're much less likely to have your license pulled. However, I would try if at all possible to get another doctor, or at least referrals to either a neurologist or pulmonologist who deals with sleep problems, because your present doc does not sound very nice at all, and may not be terribly knowledgable either.

There is hope!

Yes I have true migraine...they come during barometric pressure changes & hormonal, increasing since my mid 40's. Vomiting, and last for days. I don't get morning headaches, just a headache that starts, usually in evening, and persists for 2-7 days at which time I'm bedridden. I'm currently seeking botox treatment for this as it has shown improvement for me. I'm also seeing a neurologist next month.

I have the machine, and although its very uncomfortable I am definitely wearing it. The doctor is American board certified, I believe he is quite knowledgeable, but I believe he's underestimating how tired tylenol and migraine can make a person during the day after being deprived of sleep. I also disagree with him that 6 hours is enough sleep.

[TorontoJewel]

What I am trying to say is that your doc that you would not feel the desire to sleep during the day if you got sleep at night, is not completely true. If the issue is, he wants you to use the machine properly at night for a period of time, then see if you really still need to sleep during the day, he might be pushing you in the right direction.

Lets hope thats what it is and that the problem is solved with the machine. He says it cures 90%.

[TorontoJewel]

We're talking about disturbing your brreathing just enough so they can score it a hypopnea or a RERA and now you're on CPAP with no driver's license.

I agree with you Sludge. I think codeine could alter the tests.

[Krelvin]

Sleep patterns. Kind of like you but for different reasons. Most of the time I have an unusual sleep pattern. I am on call 7x24 and as a result many times have to get up in the middle of the night to check things. It is quite common for me to go to sleep at 9am, sleep for 3 hours, get up for 2-3 hours and then back to bed for another 4.5 hours of sleep. total sleep for the "night" 7.5 hours which is more than enough for me.

When the sleep Dr saw my results from my machine his first comment was, wow, you have your sleep results then, that is an unusual sleep pattern (they were all split sleep segments). But then he said, you are getting more than enough good sleep however, not a problem, the BiPAP shows it is working for you.

And as far as sleeping during the day... that depends on how much mental stuff I have to deal with that day. Some days are very mental, somewhat stressfull and solid busy from 7am - 2-3pm. If I can take a short nap somewhere around 2-3pm, I wake up mentally awake again and can keep going on. If not, I have a low period in the day that I eventually come out of without the nap, just not as easily. I'm not really tired in the true sense, I am just not mentally awake enough to deal with complex problems for a while. For most people that would have been a full day already, but I work a lot.

Pain. Haven't had migraines since I was a kid. Had horrible ones like "ice pick" in the head kind. Really glad I don't have to deal with that and can truly relate to someone who has them. I do have CHF which means heart pain at various times in the day, every day, normally after physical exertion. Sometimes quite bad. It can actually keep me from lying down sometimes and have me bouncing throughout a night. Normally this doesn't happen but there are days when it does. Pain meds don't really do much for that, just have to calm down, relax and they normally will subside. If I do bounce in the middle of the night, I get up, go into another room (recliner) and do something relaxing until I am sleepy enough to try again. I don't just lay there awake. Any time I get up, it is normally a good 30-45 mins minimum before I attempt to go back to sleep.