New Daily Persistent Headache Support Group

Hi everyone! Long time no chat. The only news in my world is that my neuro's associate neuro tried to get my insurance to approve Botox. We were very hopeful as he has got it approved for more patients than not with my insurance. Turned out though that I have an inferior plan to some of his other patients and they turned me down. Guess there is nothing else I can do until we change insurance (we may have to this year as the word is our premiums are up 40%).

I am actually happy about it because even with only a $250 deductible and paying 10%, it was more than I wanted to part with. It was the last thing on my list to try though, but I sure wasn't expecting it to be approved despite what the doctor said. It was nice to have someone on my side finally, despite all the phone calls and visits it took (most doctors now won't do the pre-authorizations, including my neuro).

Besides that I'm still on the same meds and doing rather well for me.

It is nice to have someone willing to really go to a lot of trouble for you even if that treatment option doesn't turn out. It shows some serious dedication. I am glad that things are still going well for you on your current meds so that this wasn't something you desperately needed.

Thats a shame about the botox, hopefully you can try it when you change insurance. It might do the trick, or at least help out a bit.

I'm glad your other meds are still going well. I was wondering how you were doing.

Update: I got the letter and they said my plan doesn't cover "experimental" treatments. Lots of fancy wording with it that made me think that an appeal would be very costly for me. Other people with my insurance can get it, but not my specific plan. So silly. We may be changing again this year. They are keeping us in suspense for awhile. I sure hope we don't have any cost increase (I pay $0 right now) or coverage decrease. Thankfully I'm on all generics except the medication that isn't helping me, lol.

Kate, I find it interesting that they consider botox experimental. That said, my private insurance doesn't pay for it either and insurance works very differently over here. It was about $300 a treatment for me so I gave it a go but wasn't keen on doing it multiple times when it didn't work the first time. I understand it's much more expensive in the US though.

I think they quoted me about $1,800 a treatment...not a cash option. My $250/year deductible plus 10% was already pushing it. I think they chose to think of it as experimental as there is a lot out there saying it is helpful for a lot of head pain patients. Better success rate than any preventative I've heard of.

Yes, I agree that it is hardly experimental. Although it does seem marginally more effective for migraine type headache than NDPH, there still have been some NDPHers that have been helped by it. $1800 a treatment is very $$$. I think I paid about $300 for the actual botox and about $130 for the consult and injections (half of which I got back, and it was given in my normal consult anyway). I wonder why there is such a price difference?

I think this is mostly fees, because the difference between using 1 vial and 2 vials was a few hundred dollars (I quoted the 2 vial price as my doctor suspected we would want that for all treatments after the first treatment), showing that the actual medication is probably 1/3 of the cost. $600 for 2 vials of Botox and $1,200 for supplies and to inject it?

The actual botox is quite expensive, around $300 a vial is about right as I only had 1 vial so that seems to be the going rate here too (I know some other that have had it and that was about what they paid too for the actual drug). The additional costs for the actual procedure that you are expected to pay though are pheonomenal!