Advice/What to expect for MEB process for Narcolepsy

ZSR1598

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Hello, I recently got referred to the Medical Evaluation Board py PCM. I seeking for any advice, things I should now that aren't implied while going through the process, disability rating assesment and how the percentage for disability is decided. Besides Narcolepsy, I have tinnitus, migraines, damaged nerve in a incision caused by surgery while on active duty.

Before been diagnosed I almost got in 3 accidents, was falling asleep while stopped waiting for the light to change and stuck in traffic and last but not least almost runned someone over on my way to PT due to a sleep attack. I haven't been driving after this happened and had been relying in othe people for transportation.

I was diagnosed 3 months ago with Narcolepsy type 1 with cataplexy. Mentioned to PCM about being tired all the time even after sleeping the recommended 8 hours of sleep and that I would get some episodes where I just cant control how sleepy and tired I feel so I either fall asleep withouth any notice or have to take a nap. I got refer to a sleep doctor and we completed PSG and MSLT. Psg came back negative for sleep apnea, MSLT showed and average sleep latency of 1.2 minutes with soremps in all naps.

I started having cataplexy episodes 1.5 months after diagnosis. I average 3 to 6 sleep attacks and 2 cataplexy episodes per day. My sleep attacks manifest as having my eyes move erratically in all directions, eye twitching and extreme sleepiness where I can fall asleep while in a conversation and memory loss. Cataplexy episodes can be as mild as just tilting my head to one side, weakness on my hand where I drop things and more severe where I have weakness in my legs can be one or both and had fall due to this.

We started on armodafinil 150mg and later on went to 250mg. Armodafinil didn't help at all and caused me chest pain. Currently Im taking Wakix and Adderall. Aderrall just makes me feel more alert but doesn't help with my sleep attacks or tiredness. Recently got approved Lumryz (sodium oxybate) and
should be starting it either this week or the next one. Thanks in advance!
 
Hello, I recently got referred to the Medical Evaluation Board py PCM. I seeking for any advice, things I should now that aren't implied while going through the process, disability rating assesment and how the percentage for disability is decided. Besides Narcolepsy, I have tinnitus, migraines, damaged nerve in a incision caused by surgery while on active duty.

Before been diagnosed I almost got in 3 accidents, was falling asleep while stopped waiting for the light to change and stuck in traffic and last but not least almost runned someone over on my way to PT due to a sleep attack. I haven't been driving after this happened and had been relying in othe people for transportation.

I was diagnosed 3 months ago with Narcolepsy type 1 with cataplexy. Mentioned to PCM about being tired all the time even after sleeping the recommended 8 hours of sleep and that I would get some episodes where I just cant control how sleepy and tired I feel so I either fall asleep withouth any notice or have to take a nap. I got refer to a sleep doctor and we completed PSG and MSLT. Psg came back negative for sleep apnea, MSLT showed and average sleep latency of 1.2 minutes with soremps in all naps.

I started having cataplexy episodes 1.5 months after diagnosis. I average 3 to 6 sleep attacks and 2 cataplexy episodes per day. My sleep attacks manifest as having my eyes move erratically in all directions, eye twitching and extreme sleepiness where I can fall asleep while in a conversation and memory loss. Cataplexy episodes can be as mild as just tilting my head to one side, weakness on my hand where I drop things and more severe where I have weakness in my legs can be one or both and had fall due to this.

We started on armodafinil 150mg and later on went to 250mg. Armodafinil didn't help at all and caused me chest pain. Currently Im taking Wakix and Adderall. Aderrall just makes me feel more alert but doesn't help with my sleep attacks or tiredness. Recently got approved Lumryz (sodium oxybate) and
should be starting it either this week or the next one. Thanks in advance!
can you provide an update on your case? Thanks!
 
Hey! As someone who went through the MEB process myself (different condition but still had to navigate all the paperwork, exams, and uncertainty), my biggest advice is to document everything and be brutally honest during every evaluation. The percentage you get is based on how much your symptoms limit daily functioning, so keep a record of sleep attacks, cataplexy episodes, how often you can’t drive, how your meds affect you, and any safety issues, because this becomes important evidence. Make sure every condition you listed (narcolepsy with cataplexy, tinnitus, migraines, and the nerve damage) is formally documented in your medical record before the MEB starts, otherwise it may not be rated. Ask your PEBLO to explain each step clearly, take notes, and don’t rush decisions like signing the NARSUM. Most importantly, advocate for yourself: narcolepsy type 1 is a lifetime condition and the board needs to see the real daily impact, not a good day version of you.
 
I was diagnosed with type II and during my C & P exam, because my paperwork didn't say "seizure" they gave me a 10% rating, even though I take 250MG Armodafinil and Xywav twice daily at I think 8.6 in total. I requested my PCM to provide me a no driving paperwork to keep myself from crashing a military vehicle. I haven't tried Adderall, armodafinil works just fine but if I close my eyes I can still fall asleep. Good luck with the nausea caused by taking GBH, it scared me at first and I felt like my heart rate was going to drop to zero. Would not drink on it, gotta be pretty clear minded when mixing can get deadly. Any questions you might have please DM me, would love to help you.
 
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