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Sleepycyn

On the road to diagnosis

12 posts in this topic

Hello. I'm new to all of this and I am still working on getting a diagnosis. Unfortunately our current sleep doc is just a locum and I can't stand him. The doc I really like will be back the end of July so until then I have to struggle. 

A little history... I suddenly started getting super sleepy summer 2012. After some pushing it was found I needed cpap and oxygen at night for mixed sleep apnea. Despite great therapy, I continued to be very sleepy and was getting worse. Spring 2014 my pcp, who I worked for, told me I either had to start taking modafinil or get suspended from my job due to my severe sleepiness, she said I was going to hurt someone.. I gave in and started the modafinil 200 mg daily. It took the edge off but still was sleepy. Had another sleep study spring 2014 and was changed to bipap but no help. I had a strict sleep schedule too. Moved back to my hometown in 2015. Due to insurance issues struggled for over a year. November 2016 had another psg and due to significant changes to my bipap they cancelled the mslt. My sleep doc was furious. In Dec I was diagnosed with type 2 diabetes and with treatment it us well controlled and I am still super sleepy. Finally had another pay and mslt a few weeks ago. The crappy doc I don't like said I just have EDS despite good bipap therapy. He also said I don't have cataplexy as it is only from strong positive emotions. Ha!! And he has never read my chart. Ugh.... So Here's the results of my tests:

PSG:

Sleep efficiency 92.4%

Sleep onset 0.4 minutes

Rem latency 80 minutes

N1 3.3%

N2 57.2%

N3 11.6%

Rem 27.9%

Arousals: 135 total majority in nrem.

Mslt:

No sorems

Mean sleep latency 6.65 minutes

Most of the time went from awake to n2 then bounced between n1 and n2

I did have a heart Cath 2 days before this and was given valium to relax me for it. Not sure if that one dose could affect the mslt. 

My symptoms are EDS, sleep paralysis, sleep hallucinations especially when going to sleep, automatic behaviour ( I don't always remember the whole drive to or from work), and mild cataplexy. My left leg suddenly buckles about twice a week usually when I am super upset or get startled and I start drooling for no apparent reason often but doesn't last long and I can usually hide it from my patients.

I'm sure there is other stuff but I'm too tired at the moment so I'll leave it at the moment.

Any advice to help me navigate this? I currently take modafinil 200 mg in the am and 100 mg after lunch. Helps for a few hours and then wears off. 

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Sleepycin

During the psg why so many arousals legs, breathing, snoring or spontaneous? Was psg with or without CPAP/, if without what were respiratory events? If with PAP what were final pressures. What did your sleep architecture look like?. What were the oxygen saturations.

Were you on any medication prior to the studies?

How about your medical history, why a heart cath?

Sounds like there is quite a bit going on here. Your symptoms certainly sound like narcolepsy symptoms and on PSG there is a rapid sleep onset and a rapid REM onset.

My first thoughts would be to get your sleep apnea under control  then repeat the MSLT. Prior to the studies any stimulants or antidepressants need to be stopped and you need to find a physician that will take the time to explain the entire test.

Best of luck

 

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And you have cataplexy. The sleep Doc is an idiot because it is caused by emotions that are both positive like mirth or pride and that are negative like grief or being upset or startled. Send the twit back to sleep school.

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Hi Natdoc.

Let's see if I can answer all of your questions.

Arousals:

Respiratory: 15 Leg Movement: 24 Snore: 1 Spontaneous: 95 total: 135  Awakenings: 0

This was my 6th PSG in 5 years and it was with Bipap 15/10 back up rate 10 and Oxygen 3 L. No changes were made to the settings during the PSG as my sleep doc (the one I like) and I made sure I was at optimal therapy for 3 months prior to this PSG. They did try me on Bipap and just room air (30 minutes) but found very quickly that I had to have the oxygen so turned it back on. Respiratory events: OA 4 Hypop: 16 RERA 2 for a total of 22 all NREM. AHI: 1.7. My AHI at home is usually below 1. Oxygen high was 96 and low was 82 on room air.

The MSLT for the naps I also wore the Bipap with oxygen.

As for medications I cannot take any antidepressants due to severe reactions. I had stopped taking the modafinil weeks before so it wouldn't interfere. I only took my metformin, diltiazem, pantoprazole, Zyrtec, montelukast, and a baby aspirin night of PSG. In the morning  only took some Ibuprofen (the bed was way too hard for me and made me hurt everywhere.) The sleep tech said it was ok.

Medical history: Well 1 1/2 years ago I got super sick and had a horrible time recovering. SOB, EDS, Peripheral edema, Headaches, Chest pain that sometimes went down my arms, No longer could exercise, could barely make it up to the office each day and had to sit for at least 10 minutes to rest and catch my breath. They did all kinds of tests and everything kept coming back normal. sigh. Over time the SOB improved the chest pain subsided except when I would exercise. We finally decided to do a heart cath as a last resort just to be on the safe side but as we figured all was good. They only thing now looking back was the single Valium they gave me for the cath. That was 2 days prior to my PSG/MSLT. Wondering if that could have affected the MSLT in particular.

On a normal day I do not take naps as I can't with my job. I work in a very busy doctor's office and I am on my feet all day. I yawn so hard all day long my eyes water and my jaw hurts. When I do get to sit at my desk I sometimes nod off. I often repeat myself or what I am doing as I don't remember saying or doing it. I blank out for mere seconds often.  By the time I get home if I sit down for any length of time I fall asleep and you can't wake me. I can sleep for just a few minutes to several hours. I can just wake up go crawl in bed and be asleep in a matter of minutes. I usually get up 1 to 2 times a night to go to the restroom.

Hope this answers your questions.

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Posted (edited)

Hi Ferret,

I agree with you. But he is adamant that it's not cataplexy since my knee only buckles when I am super angry or get startled. I see the sleep doc I really like the end of July  and he is very thorough and takes his time. I'm usually in the room with him for a good hour every visit.  So we will see what he says. In the mean time I will continue the modafinil and avoid caffeine til then. Do my best to stay awake and not screw up too bad at work. lol.

EDIT: The leg buckling is relatively new. It started about 6 weeks ago.

Edited by Sleepycyn
Forgot information

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Knee buckling is how my cataplexy started. I also gave up my career as a Registered Medical Laboratory Technologist because I didn't want to kill someone. Everybody's different.

 

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Kinda weird you have no SOREMs, but if you have cataplexy, unless you have a TBI in your past, the chance the you don't have narcolepsy is statistically insignificant. Probability of something being fudged in the MSLT is much higher. N w/o C is relatively common, accounting for as much as a third of N cases. C w/o N is pretty much fake news tho

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That was a pile of meds that were taken the night of the psg and, honestly, I'm too tired to look them all up and check their interactions to see whether or not they should have even been allowed. Sorry.

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The zyrtec I think can decrease REM, being a histamine antagonist, but a cursory look doesn't seem to show it to be as big a deal as it is with the the SSRIs, benzos, and the like.

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Sleeepycin

Wow thank you excellent report. I'm still wondering though if everything has come back normal on your testing I assume this means pulmonary function testing, serial ABGs and CT scan of your lungs. Im curious on your first overnight PSG what was your diagnosis? was it OSA, CSA, hypoventilation syndrome or what? Do you maintain your oxygen saturations throughout the day? Why is there a need for supplemental oxygen with a BPAP set at 15/10 and backup of 10? I assume you are fairly young (at least compared to me) and the need for PAP and O2 is at least unusual.

I think you most likely suffer from Narcolepsy in addition to whatever else is going on. I have seen patients with cataplexy that manifests only as drooping eyelids or the inability to form correct words. Buckling of the knees is certainly cataplexy. The diltiazem you take is a calcium channel blocker and does cause sleepiness although I do not think this would have affected your testing, also I do not believe valium would have either. Why do you take this medication if all your testing has been normal?

This is certainly interesting, although I know you just need answers, I do not think all of these problems can be attributed to sleep I really hope you keep us informed on your progress and I wish you the best of luck.

 

 

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Hi everyone,

I'll try to answer everyone in one post.

I've never had a TBI. Yes it was a handful of meds all approved by the sleep center and my sleep doc. The valium I don't take, it was a one time dose for my procedure. The diltiazem I only take at night and my cardiologist doesn't want to take me off of it as it is working really well for me. I used to take Lyrica for nerve pain and it made me super sleepy. When I moved I couldn't afford it and stopped taking it. Now I just deal with the nerve pain in my arm. (Not severe unless I get really cold.)

All testing so far has been normal. My first PSG I was diagnosed mild OSA. The 5th PSG I was diagnosed severe mixed sleep apnea with a pressure of 20/10 back up rate 12. That proved to be way too much pressure and we backed down and worked back up til we hit the magic number 15/10 and back up rate 10. They don't know why I have to have the oxygen at night. Oxygen alone isn't enough and neither is the bipap. It doesn't make sense but that's the way it is. My oxygen during the day is good unless I fall asleep. lol. Well if having 2 grown kids out on their own for several years is young I'll take it. =)

The sleep doc I like thinks I have Narcolepsy as well. I honestly can't wait to see him the end of July. The last time I saw him I wasn't having the knee buckling. I am really lucky with the coworkers I have as they watch out for me and will room a patient for me just so I can rest if I need it. Where I work I'm not really in a position to hurt anyone which is a good thing. I just tend to generate a lot of humor for everyone.

 

Question: Is it normal to go straight into N2 sleep then quickly into N3? That seems to be the norm for me at night.  On one of my PSG's (can't remember which one) I went straight into N3.  Also I read on here a lot of people can sleep 10-12 hours or more. I can't sleep that much straight. 6-8 hours is my max then I am wide awake for about an hour then the heavy eyelids and yawning hit. I go through multiple cycles of this all day long til I go to bed and crash.

Anyways... Long today so I am going to go get ready for bed and crash. =)

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Sleepycin

I wish you the best of luck when you see your sleep doc.

Keep us posted

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