Nothing Seems to Work, What Do I Tell My Doc?

[silentstone7]

I have an appointment with my sleep doctor (a pulmonologist) on Thursday and since the only appointments I can get are months apart, I want to make it count and need some advice. Let me know if any of this is confusing, I had to write it in multiple short bursts.

In the last two years, I've been exhausted all the time. I have been falling asleep at random times during the day (like in the car on the commute home as a passenger, on the toilet during my breaks at work, watching TV, etc.) I've never fallen asleep easily, and never even napped as a child. I also have mental issues all day - it's like thinking through molasses and I can't focus on anything anymore, I just want to stop and sleep. I've become very forgetful, it's hard to remember a conversation from two days before or I forget an important step in a task at work. I've given up on my hobbies and socializing. At night, I feel slightly more awake a few hours before bed, and have a hard time falling asleep. It usually takes me 45 minutes to an hour to fall asleep. Last year I was waking up about twice a week with sleep paralysis and visual hallucinations. In the mornings, I have a very difficult time getting fully awake. I can wake up enough to respond to someone or turn off an alarm with no memory of it, and fall back to sleep and even go back to dreaming very easily.

I had all the blood work to rule out other diseases and mineral deficiencies as well, before getting referred to a sleep doctor.

Last year, I had an at home sleep study with an AHI of 8 and started on APAP in January with a setting of 5-15 pressure and a full face mask. After a few months, I noticed I was sleeping through the night more often, but otherwise still had all the tiredness symptoms.

My sleep doc did a follow up in lab sleep study, and I had an AHI of 25. Mostly hypopneas and flow limitations, lots of partial awakenings. During the study, the tech moved me to a bipap in the middle of the night and I responded well to it, so my doctor ordered it.

I've been on the bipap for almost 3 months. I use it every night and my AHI on it (and the apap before) is usually below 2. The only change I've noticed this whole time is sleeping more soundly through the night and lower blood pressure. My daytime sleepiness has improved slightly (but that also might be related to working from home during COVID being less stressful and easier to take breaks).

My follow up is Thursday, to discuss how well bipap is working. I'm willing to keep doing it for the benefits to my heart and lungs and brain, but it's not really helping the core issue - I'm still exhausted!

Other than just telling him the above, what should I be asking about? Should I push for a latency sleep test for narcolepsy? A neurologist referral for other sleep disorders? I don't know what else there is to try and I've spent years feeling awful and 6 months pushing for answers and I still have nothing to show for it.

Here's my last four nights in OSCAR. I apologize for the wonky text labels, I have a 4k screen and OSCAR doesn't scale right. https://imgur.com/a/yD8lowf

[Julie]

Couple of questions - have you recently gained even a little weight - it can make a big difference to things.

Have you gone onto new medication? Looked into side effects? Do you drink alcohol late in the day or exercise before bed (not a good idea).

I might try a max pressure of 20 (more usual) and bump the minimum 1-2 cms higher to see over 2-3 nights whether it helps... and please come back to this thread with results.

From what you've said, though, I'm not sure you need an MSLT which is usually done looking for narcolepsy... you didn't report symptoms of that, just serious apneic ones.

[kteague]

I'll let others deal with any possible optimizing of your settings. A couple other thoughts... I'm curious about your answer to the question about what meds you are on both in regards to your daytime symptoms and the unusual sleep symptoms. If you rule out any medication influence, your account of sleep paralysis and hallucinations would make me curious what an MSLT might show. Do first consider if your symptoms are enough for diagnosis and treatment to offset any potential downsides to having the diagnosis officially on your record. Some places it affects driving privileges, and would become a pre-existing condition in regards to insurance, maybe even from the time you mention it to your doctor. If you do get an MSLT ordered, they will have you stay overnight then for the day. Hopefully your doctor will order the nighttime part with you using a machine at your usual settings as that will give them a better picture of your current sleep issues. It's always possible to have more than one sleep conditions. Do be diligent to continue to treat your sleep apnea. Otherwise your symptoms from that could muddy the waters in trying to diagnosis any other conditions. Another tip on the nap test. Sit up on the bed to mask up and get settled before lying down. If you lay down before actually being ready to nap it may be considered you took too long to fall asleep to meet diagnostic criteria. Good luck with things.

[Miss Emerita]

I had to look up MSLT: Multiple Sleep Latency Test. Sounds like a great idea given what you report, silentstone7. Do you have a copy of the sleep report for your in-lab test? If so, could you post a scan, blanking out your personal information first?

[silentstone7]

EDIT: Here's my sleep study results: https://imgur.com/a/9dmZIMz


I haven't started any new medications or made any lifestyle changes in over a year. I'm currently taking:

• birth control
  Fexofenadine for seasonal allergies (which I do stop in the winter, but I've had the same symptoms both off and on.)
  a half dose of omeprazole for acid reflux/gerd (half a chewable because I get iron absorption issues on a full dose)
  Liquid probiotic
  daily multivitamin
  iron (when I first started having symptoms, my blood tests showed low iron because of the heartburn meds, supplemental iron made my levels normal on paper but didn't help with tiredness)
  magnesium
  vitamin d

And a little extra info:
I haven't gained or lost any weight in over a year. I was dieting two and a half years ago and lost 35 lbs, before I started feeling so severely tired, and my weight plateaued and I got sick and ditched the weight loss efforts, and have maintained the weight ever since.

I have bad eyesight and already don't drive, I'm not worried about any diagnosis affecting that.

I have Marfan Syndrome, so I have a high palette, very narrow mouth, recessed jaw, and I do carry weight in my neck. I had my tonsils and adnoids removed as a child due to snoring, and still snore. I can't say that a sleep apnea diagnosis was a surprise. I also have anxiety, and suspected UARS before I even talked to my sleep doctor, but my AHI was high enough that didn't even bother really looking for it. And now I'm on the bilevel and it's not helping.

I don't fall asleep fast at night, and when I lie down during the day to intentionally nap, I do still take 10-15 minutes to relax my mind and body enough to sleep. When I get hit with tiredness so overpowering that I can't control when I sleep, I'm usually already relaxed - watching tv or reading or similar - OR I'm taking a break from something stressful, like after exercise or a bathroom break at work. It often happens every day around 3:30 to the point where when I go from regular tired to overwhelmingly tired, and I can pretty much guess it's within a half hour of 3:30 every time.

On weekends or without an alarm set, I'll regularly sleep 10-14 hours and feel MUCH worse for having done so. The rest of those days is pretty much wasted.

[chunkyfrog]

I hope you are napping WITH your machine, not just at night.
Otherwise, the stress of sleeping even a little bit without the machine
could be messing you up.

[silentstone7]

I hope you are napping WITH your machine, not just at night.
Otherwise, the stress of sleeping even a little bit without the machine
could be messing you up.

I try to NOT nap during the day. Usually I'm working and can't, but even on weekends, I try to avoid napping so I can sleep better at night. When I nap, I find that it's even harder to fall asleep that night. I hate having a few hours of insomnia before bed when I'm so so tired the rest of the time.

[chunkyfrog]

Sleeping late tends to make one more tired, and could alter circadian rhythm.
I only sleep extra when fighting an illness--"cat medicine".

[Janknitz]

How are your iron levels on supplementation???

[Julie]

Have you tried raising the min. and max pressure settings - e.g. to 8-9 for the min, to 20 for the max (that's the usual for max)?

If adjusting settings helps you, you may not even need a bipap.

[silentstone7]

How are your iron levels on supplementation???

Just fine now. My iron levels were never actually low, only my iron absorption dropped low because of the heartburn meds. Both are now testing normal.

[colomom]

There are some overlaps between your story and my son's, it is anecdotal but perhaps some of his experiences might be of help.
My son also has a connective tissue disorder because he is crazy tall they suspected Marfan's at first, but thankfully genetic tests ruled out Marfan's and he was diagnosed with hEDS. Interestingly enough before we figured out my son's sleep and other health issues he also experienced hallucinations, narcolepsy was suspected as a possibility. Thankfully in my son's case his hallucinations were the result of severe sleep deprivation caused by untreated health issues including a couple of sleep disorders (OSA, circadian rhythm disorder, and RBD).

My advise on the MSLT:
If you have met or plan to meet your insurance deductible this year if I were you I would push for it. They will have you do a sleep study the night before (with your BiLevel) and the next day they will have you try to take 4-5 scheduled naps, they will be looking to see how quickly you fall asleep as well as looking to see how quickly you enter REM during the naps. My son's MSLT was very beneficial. It was nice to rule out narcolepsy, but more importantly the full night sleep study with an already titrated CPAP revealed that he needed supplemental O2. Once again anecdotal, but monitoring your sleep for an entire night on your BiLevel could possibly provide further incite into your sleep issues.

Other suggestions:
How is your sleep hygiene? Napping and sleeping in can disrupt your circadian rhythm, keeping a strict sleep schedule might help. Another trick to help keep your circadian rhythm in line is to get lots of light in the morning, and limit light exposure as much as possible before bed. Something that might help battle the fatigue that sets in in the afternoon is a brisk walk in the sunshine when the fatigue hits. How is comfortable is your bedroom? With Marfan's my guess is you're likely tall, do you have a bed designed for tall people? Do you have back or other pain that may be disrupting your sleep?

It sounds like you are doing a great job and using your Bilevel regularly! Even if it doesn't feel like it's helping the fatigue stick with it. Hopefully treating your sleep apnea will lesson your risk of developing the heart problems Marfan's puts you at higher risk for.

Good luck!

[silentstone7]

There are some overlaps between your story and my son's, it is anecdotal but perhaps some of his experiences might be of help.
...
Good luck!

Thank you so much for all your advice. Yes, I will be meeting my deductible and can push for the MSLT.

I do have back pain related to Marfan's (dural ectasia) and have a memory foam bed that's longer than standard. My bed is comfortable!

I'm hoping the doctor tomorrow can give me some combination of something to change NOW as well as more tests for LATER.

[silentstone7]

Just an update to end this thread:

My doctor didn't want to do the MSLT, because he said my last sleep study showed no signs or narcolepsy and he didn't feel my symptoms exactly fit.

Instead, he started me on Sunosi, for "sleep apnea related excessive drowsiness" so I'm starting that today. Hope it works!