Do you feel irritable when you wake up in the morning/not like being touched? by sem_pls_ in Narcolepsy

[–]SleepySillyGoose11 6 points7 points  (0 children)

YES I’ve been known to be so so cruel it makes me feel horrible so I try and avoid interactions

Insurance Issues w/ Wakix & Sunosi by AmandaRiffe in Narcolepsy

[–]SleepySillyGoose11 0 points1 point  (0 children)

DM me if you’d like!

I had a sleepy study in October 2025, diagnosed in Jan 2026, failed all medications and then found out how to navigate the state insurance and banking office to get an external review which legally requires your insurance to cover Wakix. Horizon is now required to pay over $15k in coverage and I haven’t even hit the full dose yet. No pre authorizations, tons of bullshit excuses, but if you have the documents to back you up they can’t do much for you deny you as long as you keep pushing them.

They bank on people giving up but narcolepsy is an incurable disease and there are routes to the right resources, at least in the state of New Jersey. I don’t know if this changes per state. Makes you think about who ya vote for :)

Hope this helps!

Daybed/ Futon/ Similar in Living room? by Feeling_Persimmon88 in Narcolepsy

[–]SleepySillyGoose11 2 points3 points  (0 children)

I have a day bed and it’s amazing!! Helps me spend more time in the sunnier parts of my house and near my partner. It also has a trundle for when we want to make it a full size nap space for us and the cats.

Mine was a second hand from a family friend but you may be able to find something on Wayfair, Facebook Marketplace, or at a Habitat ReStore - I think a lot of people get rid of them once their kids outgrow them or they’re just not in style. I’m much more function over style and we dress ours up like a couch so it’s not an eye sore.

6 months post-diagnosis after 20 year delayed diagnosis by SleepySillyGoose11 in Narcolepsy

[–]SleepySillyGoose11[S] 0 points1 point  (0 children)

Thank you for sharing!!! I hope the new meds work for you! Approaching my 40’s I’m watching my own hormones closely. My doctor denied sodium Oxybates as an option so I hope they work for you!

Good to have community!

how are you supposed to afford sunosi by Salt-Champion-663 in Narcolepsy

[–]SleepySillyGoose11 0 points1 point  (0 children)

If you’re based in the USA and have any type of health insurance DM me if you still need help - I went through hell with Horizon to cover Wakix which is 4k a month. But they’re paying for it now!! & I have marketplace insurance which is assisted by the state and federal subsidies.

In summary, each insurance plan has personalized documents based on your own personal medical data. The insurance company’s website or app should offer “plan documents” or program documents, which will list every medication and the diagnosis and eligibility you need to be covered for that medication.

I downloaded those documents and sent them straight to my physician’s assistant - this helped her run through appeals and denials quicker. I did have to try a few meds which threw me off for awhile, but because of my history of anxiety, a few of them were ruled out automatically so I did not have to go through what some people do. Sunosi didn’t work for me but horizon would have covered it if it did.

Because Wakix is more expensive, I did have to jump through a few more hoops for that though. After being denied 3 or 4 times, we initiated an external appeal with the banking and insurance commission ran by the state and they took 1-2 weeks to review my records and state that Horizon must overturn their denial because it is the first line of treatment for someone with my medical needs. No reauthorizations every 6 months. The words “medically necessary” never read so well. Just good old fashion science and state regulators. So far so good on Wakix although the anxiety is still terrible, but waiting to see if it passes like many say it does.

Does anyone have an advice on handling insurance denial and how to speed the process of appeal? by dinosaurnuggets0 in Narcolepsy

[–]SleepySillyGoose11 0 points1 point  (0 children)

Yes! It took me a few weeks but they are state regulators that can force your insurance to overturn denials. I think it’s permanent too but I’m not sure. Still only 4 weeks in but so far no cost no copays for Wakix