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Sorry for the multiple posts today, I swear this one has some substance even if it’s a bit of a bummer.

First off, let me get this out of the way. This is how I feel about insurance companies that keep denying medications to people who need them, or jacking up the prices to incredible amounts:


I had a follow up with my sleep doctor today, who came in absolutely incensed because she had to break it to all of her patients that insurance is adding more to the huge list of medications they are denying coverage. This includes most of the things that cover IH, which is frustrating since it’s not an illness that gets enough funding for research, so we are already really limited on treatment options. Being early in the year, I haven’t hit my deductible and my insurance has already denied my usage of generics, so I am paying $300 a month for Adderall XR. My doctor suggested using coupons through GoodRX instead of insurance to pay for my meds as an alternative. So my first question is have any of you have tried to go this route to pay for your prescription costs? Did it work out well for you? This is the cheapest medication that works for me, and my HSA is dwindling quickly because of it. It sucks, but the alternative is too risky to consider.

Secondly, my doctor also suggested I check out a conference for people with IH where medical professionals keep us up to date on clinical trials and treatments. There’s one not too far from me that is happening soon, so I am considering going. So the other question is about conferences. I know that certain illnesses, like mine, are a relatively small club with very little information. Have you gone to any of these conferences for your invisible illness? If you have, did you find that it was valuable information in terms of understanding your illness or treatment options better?

For the other IH patients on here, if I go I’ll be sure to write something up about it.


I’d like to pretend it’s not a problem and that I’m totally fine, or that going off meds would be nbd, but if I’m honest all of this fucking sucks.

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