Posted by Bob P (129.65.106.125) on September 25, 2001 at 19:15:07:
I went to see my GP (who knows nothing about CH) back in May to lay the ground work for my impending cluster. Got a referral to a neuro (so far so good).
Neuro gave me scripts for O2, prednisone, verap, and a bunch of triptan samples saying - try them all and whichever one works best is the one I'll prescribe. I leave the office all proud of myself for being proactive.
3 weeks ago the cluster starts. I try the triptans and call the neuro for a script. His staff won't let me talk to him and won't write a script cause it's been too long since I've seen him (4 months). O2 needs pre-approval from insurance so I ask the neuro to do that. Nope, not until I come in and see him. They can squeeze me in in 8 days.
I do an end run back to my GP and get him to do the approval on the O2 and write some imitrex. The O2 shows up the next day. Finally a success. The Imitrex (I wanted the vials with some syringes so I could take 1/2 doses) turns out to be 3 auto injector refills and no auto injector? Reorder.
I finally get in to see the neuro and get some Amerge. 1/2 a tab twice a day. 9 tabs in a box supposed to last 9 days. Wind up using 1 1/2 to 2 tabs a day. Have to swipe a bunch of samples from the neuro to get through the nine days till refill time. Go today to pick up the refill, insurance says nope, should last 22 days instead of 9!
Where's the Imitrex? It'll be here Thursday the pharmacist says (it's taken 2 weeks). I suggest it would be nice if they would let the patient know that their meds have been refused by the insurance company as soon as they know so the patient can go to work jumping through hoops rather than wait till the patient shows up at the paharmacy to pick them up. We're too busy!
Neuro trys to tell me that if the HAs last more than 6 weeks they're chronic!
The only shining star in this whole thing has been my GP who admits not knowing CH. He gladly accepted the Goadsby article I gave him. He was willing to see me right away and prescribe what I told him I needed.
As for the rest of them, OUCH has a lot of work to do.