Leslie,
I thought I was going to have a piece of cake recovery because I was doing so well at 3-4 weeks post-op. I did have a colossal migraine 10 days post-op but I had been having migraine headaches for years before my diagnosis, but they were quite mild and ususally went away in a few hours with a couple ibuprophen. My surgeon said I had had a magnified migraine from the surgery. I was fine for months until about 4-5 months post-op I started having "headaches." I started seeing my local neurologist because I had had my surg in Cali at HEI and I am in NC. I got worse and worse and the neuro tried about every preventive med under the sun. Nothing worked, even acupuncture.
I finally went to a headache specialist at a headache clinic who gave me trigger point injections for immediate relief and he put me on a cocktail of meds including gabapentin (Neurontin.) He also got me started on injectable Imitrex--I used small doses out of vials--usually 2.5 to3 mg. I also went to one of the ANA Symposiums and got some good info on Topamax and started on that. I applied for disability because I could no longer work and after 2 turndowns, finally got it (It took 4 years)which meant I could start with more aggressive treatment that my insurance wouldn't cover. Occipital nerve blocks were my first step and they really worked like a charm, but you can only have 5 of them in 12 months. My next step was Botox, which really gave me my life back. I stopped Botox about a year ago and rarely have a headache, but when I do they are doozies but I am armed with injectable Imitrex which usually knocks it out in about an hour.
That is the condensed version of almost 9 years.
My advice to you is
1. Start keeping a headache journal--(If you google "headache journal template" a bunch of them will pop up for you to download.) makes it easier when you see a headache specialist. Note the type of pain (throbbing, continuous,) Where the source of the pain is (neck, jaw) Also note the activity you have done to trigger it or did you wake up with it (that was me)How long it lasted, what meds you took for it (never, never take Advil or any other NSAID on an empty stomach--that's what graham crackers are for--trust me on this one)
2. Get on the ANA website and order audio transcripts from the headache workshops at the ANA Symposiums. Dr Leonetti's from Chicago 09 is really good.
3. Wrap your head around the fact that the source of your headaches will probably never be known because they are caused by a combination of factors
4. If you're not better by 6 months to a year, get thyself to a headache specialist at a headache clinic (mine was a 3 hour drive at first once a week, then once a month, then once every 3 months) Do not rely on your surgeon for headache treatment if you have them for more than 6 months. After 6 months no one should have "post-operative pain." By then you are considered to be "chronic." Pain management professionals come into play at this point.
5. Botox has been cleared for headache management by the FDA which means that many insurance companies will cover it. In looking for someone to administer it, make sure you will be getting 15-20 shots--4 or 5 and you are wasting your time and money. My neurologist gives me 3 full syringes and injects me about 7 times with each syringe--not fun, but not nearly as painful as a brainwreck. Ask in advance for some mild sedation like Xanax or Ativan--they'll give it to you.
6. Keep in touch with the folks here for moral support, they are great and save up your money to get to the next Symposium--if you can't afford it, there is financial aid through the ANA to help with airfare, hotel and the Symposium fees. There are at least 2 headache workshops there, plus roundtable discussions where you can get one on one help from a professional.
In all my research I have come to my own theory--as my incision and all the stuff that was sliced and diced inside my head healed, it healed wrong. Also, since many of my headaches begin with severe neck pain, the position my head was in during surgery (middle fossa) injured my neck as well, adding a cervicogenic component to my headaches.
And be aware that, since there are multiple components to our headaches, we are all different and what works for one of us may not work for you. It is really a crap shoot. Hence the headache journal which is an important tool for a professional to use for your treatment.
I hope this helps--I know exactly what you are going through and it is frightening and horrific to endure so much pain--unfortunately I went through this process "flying blind"without this resource and the benefit of other peoples experience. I hope you are able to find relief and find it soon.
Best Regards,
Capt Deb
Resident Headache Slayer
