DLM--you sound like you could be a candidate for Botox for your craniotomy headaches--it is now FDA-approved for head pain/migraine, so it should be covered by insurance--it not, put up a big fight and get your neuro to contact them.
Katmac--I first set up an appt with a local neurologist in my small town--his first recommendation was Botox, but my insurance company (BCBS) refused to cover it so we started trying different meds, none of which really worked. After 2 1/2 years he sent me to a headache clinic, who gave me a bunch of trigger point injections in my head which gave me some short-term relief until some of the meds kicked in--meds for nerve pain have to be titrated and take a while to provide relief. I took a cocktail of gabapentin (Neurontin) and a few other generics which I can't remember the names of.
I was also able to attend an ANA symposium and go to a headache clinic and after a little one-on-one with one of the presenting docs, I convinced my headach doc to let me try Topamax--a drug I had tried to take twice before, but I found the side effects intolerable. The Symposium doc told me my titration had been too fast and when I slowed it down I was able to get on the drug and gabapentin and Neurontin became my cocktail for the next few years, which gave me some relief, but I was still getting a brainwreck from once a week to a few times a month (as opposed to being in bed crying most of the time)and I had a nagging low grade headache most of the time. I was still unable to do anything involving physical activity like hiking, kayaking, sailing boogie-boarding, or any of the fun stuff that my former self enjoyed, including working as a painter of large landscapes.
Meanwhile, I finally got disability and Medicare which has a very low deductible and headed right to my local pain clinic for a series of occipital nerve blocks. I went to the beach and went boogie-boarding! I started working again for a minimum of 4 hrs a day. Unfortunately your head can only take so much depo-medrol, so I started Botox, also approved by Medicare--what a difference!
So here's where the benefit of this forum comes in. If I had a do-over, I would by-pass all the crap I went through and try to find a headache clinic, OR a neurologist who can administer Botox injections. When I was offered Botox the first time, I would have gone for it, even though my insurance wouldn't cover it. I would have saved a whole lot of time and money spent on drugs that didn't work well, not to mention gas mileage on the 4 hr trip to the headache clinic.
Botox is also used as a diagnostic--if it doesn't work on your pain, something else is going on. Also opiod drugs like hydrocodone, oxycodone, work for a while, but they also trigger rebound headaches. And never never take NSAIDS like Advil without food. I have a permanently ruined stomach lining from NSAID overuse and they also cause rebound headaches.
Lately, I have stopped Botox after 2 years, rarely have a brainwreck that Injectable Imitrex doesn't take care of, and have had a chiropractor working on my neck. I have a twisted vertebrae that never showed up on any of my neck MRI's (lying down with comfy neck support in Tube O' Gloom didn't show it.) Chiropractor took 4-5 xrays with me sitting up and even I can see that it's a little wonky. He's been slowly ooching it back in place and I notice less neck pain and less headaches. (Note: I went originally to chiro on the advice of my pain specialist who I see for my back pain)
Point being......(sorry this is so lengthy) all of our headaches come from multiple issues and it's like a Chinese menu of causes. Order some CD transcripts from the ANA symposium headache workshops--$10 plus a few bucks shipping and worth every penny. My favorite is Dr Leonetti at the Chicago 2009. Read all you can of the past topics. Definitely call House and find a neurologist or pain clinic doc. The House docs are used to out of town patients who can't just drop in for follow-ups and are glad to speak with our health care providers.
Best of luck to you,
Capt Deb
