Re: New to the idea of PM
Sorry you are struggling. I can relate to your pain as I have had the same headache for 7 years. Working is definitely tough. If you have tried & failed years of standard treatments and respond to short acting narcotics, I'd see a pain management specialist to see if long acting narcotics could be a good option for you. Its been the only thing to provide me any significant lasting relief.
Agreed you should see a neuro who specializes in headaches if you haven't already. There are also some big name headache clinics that might be helpful, if only for a consult to bring ideas to a home doctor. You definitely want someone more familiar with Chiari.
However, it can come at a cost. I've never been able to replicate the relief I got in the beginning, due to tolerance (you require higher doses to obtain even close to the same relief). Tolerance can build quicker for some folks than others, especially those who are young. I started on the pain meds at 19, so no wonder.
Sounds like you also need to try more abortives, assuming you haven't exhausted all those, but that can be tough with so many headache days a month (doctors typically limit those to a couple days a week to avoid rebound, but for someone with daily pain, I think that is a moot point). Triptans, ergots, etc.
Maybe even Torodal injections to have at home (I have these, as well as a new nasal spray form called Sprix). The Sprix actually works better...my pain dr said that many headache patients say this...something about the med going closer to the pain or something.
With pain management, its common to have a long acting med plus a short acting med to take as needed. 100% pain relief isn't reasonable, but some patients can reach 50%. Then, when their pain spikes, they can take their short acting med to try ti get it back to baseline. Best relief often comes with a combo of treatments, such as both narcotic and non-narcotic meds combined with alternative therapies or injections. Best wishes.
constant headache since 2006