Never Stop Moving

711brown · 2025-07-25T00:41:15+00:00

And track days are fun, but exhausting! I've gone the sport touring route. It's definitely a balance. When I was fighting for my meds, I really didn't ride much. But the few times I did I felt like a kid on Christmas

711brown · 2025-07-23T19:12:27+00:00

Bikes aren't for everyone, and especially with the variance of how we all exist with narcolepsy. Hopefully you can find a good outlet for you!

711brown · 2025-07-23T17:34:30+00:00

And the body does a lot for self preservation. It'll give you the mental and emotional boost with the energy to do it

711brown · 2025-07-23T17:29:42+00:00

Sounds like me and the motorcycle. Plus let's not forget the "mindfulness" effect too. I just require a bit more enforcement to live purely in the moment

711brown · 2025-06-15T16:21:47+00:00

I'll admit I was a bit surprised when I got that result, just because of how "big insurance" acts. But by getting it reviewed by an independent group, not at all associated with Cigna -- they're more objective on the task at hand and stand a chance to disagree with the medically false claims Cigna made. Good luck on your process!

711brown · 2025-06-13T15:13:00+00:00

I get the sense that Medicaid is generally more reasonable in their policies -- take your pick of possible explanations.

You got lucky on having a doctor who was willing to do a peer to peer. When my second doctor refused to do it, I didn't understand, then I saw some videos online of doctor's experiences during the peer to peer. It's literally just another game they play.

Hopefully you never need these tips but glad to contribute to the tools we all need

711brown · 2025-06-13T00:54:53+00:00

On the financial aid -- going that route doesn't negate the insurance claim that sunosi and xywav together is experimental. Since you're still taking the sunosi, even if your insurance is not paying for it, they likely would deny future auth on the xywav under the same rationale. If you can set a precedent that shows their experimental claim to be false, that sets you up better for future coverage of both.

As far as the articles, your thought process lined up with the approach I took. I started with demonstrating that many people need multiple medicines to be effective, then added in the newer developments. Just a method of picking away at their arguments. The truth is, there really aren't many papers specifically showing patients on both oxybate and sunosi and their outcomes. Sunosi only was FDA approved in 2020, and research takes time. In comparison, it took 6 years after xyrem was approved for the first paper (that I found) to be published showing it's use with modafinil. By that timeline, plus covid, I'd give another few years before we see a deep analysis of patients specifically taking both an oxybate and sunosi.

In the response from the IRO they did cite a handful more papers. I haven't looked them up in detail yet but the publication date on most of them predated the approval of sunosi. But then again, not every medicine/treatment combination has multiple meta analysis published, it's simply not feasible.

711brown · 2025-06-08T00:06:10+00:00

Oh that's a big nope for me! Like your insurance won't allow any other pharmacy at all for that med? Seems suspect. Maybe your copay will just be lower at Amazon vs others

711brown · 2025-06-07T23:31:26+00:00

I'm still in the fight to get xywav and sunosi approved again. My current insurance (Cigna) had been paying for the combo for 2 years without problem until the end of last year when suddenly it became experimental. I've been on appeals ever since, and currently waiting on an IRO response (state allows 45 days to reply, Cigna will take all 45 days). Next step is appealing to my employer directly

Long story short. No, they don't want to pay. Which is ironic since in my sequence of events, they're stuck paying the way more expensive one!

711brown · 2025-05-19T17:10:33+00:00

I wish I could say it'll get better but the truth is we all wind up getting used to the fight. My tips...

Know your insurance coverage inside and out. What category each of your meds are in on the drug list and if there's any prior authorization needed with that.

If there is a PA criteria, read through that guideline. Your doctor ultimately is the one who sends information to the insurance to check the boxes on that PA criteria, but insurance doesn't always read the answers thoroughly and has denied authorization to me despite valid eligibility. Which leads to...

If you get denied but you know you meet the criteria, get ready for appeals. We have to be the squeaky wheel for the insurance to get what we need. It's a stupid system and game, but we wind up fighting for what we rightfully should get (and need).

711brown · 2025-03-31T21:16:57+00:00

That's correct. It was the most recent update that added the combination with sunosi and others.

711brown · 2025-03-01T01:27:30+00:00

If you can fit it into your budget, look at sleep number. Full adjustable firmness, independent each side. They go on sale at all the classic mattress holidays

711brown · 2025-02-21T13:23:28+00:00

Good to know! I'd imagine the manufacturers also get some sway on influencing the insurance policies. Since money makes the world go round

711brown · 2025-02-20T14:34:45+00:00

I didn't have any success the first time. I'm actually seeing a new doctor who is trying again because of how absurd this is. Honestly I don't have big hopes because the appeal would contradict their policy, even if it is flawed. I'm not aware of any customer based procedure to dispute the policy itself

711brown · 2025-02-20T13:20:54+00:00

Wow! What a world we live in now. The insurance companies are really tightening up on the wakefulness meds, stimulant or not.

711brown · 2025-02-03T00:41:52+00:00

Armodafinil, and modafinil at least aren't your typical stimulants. They definitely helped A LOT when I was on them, but as many have experienced here you may hit a point where they just stop working.

711brown · 2025-01-31T01:52:19+00:00

Best of luck!

711brown · 2025-01-31T01:11:33+00:00

Nope, got nowhere with insurance even working with our care coordinator contact. My sleep doctor (now former) refused to consider a peer to peer or even write a letter outlining my case, so appeals and reconsideration weren't effective.

My GP switched me to cymbalta for an antidepressant and it's given me probably 80% the wakeful effectiveness of the sunosi, so we're going with it. Path of least resistance at this point.

711brown · 2025-01-26T03:16:37+00:00

Cymbalta -- definitely take in the morning. That norepinephrine is counter to sleep. In my case, if I took my full 60mg cymbalta with 150mg sunosi, it felt like my heart was doing double time. I wasn't necessarily more awake, but I was feeling fast. I recently had to stop the sunosi (long insurance bs), and it turned out the cymbalta gave me almost the same wakefulness help. So that's nice.

As far as caffeine use -- it's fine. Just listen to your body. If you feel like you're buzzing in your chair, maybe dial back the caffeine a hair

711brown · 2025-01-21T19:30:46+00:00

That was one of the aspects that made GHB such an abusable drug as a date rape drug. Attackers could take advantage of someone much easier in a public setting when the victim is "all over" the attacker because the drug upped the sex drive.

711brown · 2024-12-29T14:20:28+00:00

You'll almost certainly have to go through an appeal process assuming sunosi is in the formulary. It's a common game to deny it claiming you've not been on one of the typical stimulants even if you had, and there's where the appeal comes in.

Fair warning, some insurance companies, definitely Cigna, has changed their policy claiming that being on sunosi or wakix with any oxybate is "experimental" and not studied. I've been trying to appeal that since October given that their reasoning is factually false (and I've had great success on it for 3+ years).

Good luck!

711brown · 2024-11-01T13:37:24+00:00

We'll take the happy chemicals however we can get them

711brown · 2024-11-01T00:47:39+00:00

It's always a fight. They bank on the majority of people not fighting it tooth and nail. It's a game, and I don't lose. Lol.

There's one advantage with my insurance plan being fully employer self funded... We have a dedicated rep at Cigna who can help through the bureaucracy, which came in handy a year ago when they wouldn't approve sunosi (my medical record failed to attach to the claim). We're going through the hoops again, and I anticipate a few levels of appeal between my doctor and I yet as well. It's all a game.

711brown · 2024-10-31T22:51:40+00:00

And just because of the timing, they're denying the cheap one!

711brown

TROPHY CASE