I have been having two types of what the doctors describe as migraines, although I would not have thought it was that. Two very distinct types of headaches--one is beyond horrific, and when I stand up I almost pass out afterwards. The other one is less acute, but it is constant and unrelenting, which makes it almost worse. I can't think, I don't want to move, I just dream about guillotines so that I can chop my head off and stop the pain LOL.
I screwed around with my rheumatologist and had a shitty primary, who I got rid of and got a new crackerjack primary, who has been very helpful with the headaches.
Previously I tried Fioricet, Percocet after onset of headaches. They both had some help with the lesser headache--would relieve, some but not all of pain. It was hit or miss which one would work, or if either would work.
I was also prescribed Dialtizem, which is a blood pressure medicine that is supposed to help with the Raynaud's I have also. It is supposed to help with headaches, although I didn't see much benefit with that.
The new primary doctor prescribed me a lower dose of amitriptyline (as a preventative), which at the dose he prescribed helped some, but not significantly.
The primary referred me to a neurologist who specializes in headaches, and she was amazing.
She gave me several options, the first was increasing my dose of amitriptyline. I did that, and it seems to help, but the problem is that after taking amitriptyline the night before, I sleep ALL day long the next day--like literally until 7:00 p.m., feeling like I'm under anesthesia. Not good.
She also prescribed Maxalt to try to take when there is a severe headache. They are really strict with this because they dont want to cause rebound headaches, so they only prescribe a maximum of 12 pills per month, 2 per day, 4 per week. I had mixed results with this. The first time I took it, totally resolved the headache fairly quickly and had no side effects whatsoever. The second time I took it, I got severe Raynaud's symptoms (my hands and feet were so cold I thought I had frostbite), and didn't help that much with the headache. The neurologist mentioned that it may cause problems with Raynaud's.
Another option was Topamax-- which I haven't tried yet because the doctor discussed that it could cause an increase in depression, which right now, I really don't need because I have been feeling low lately
Another option she prescribed, which I am amazed at, is Namenda, an alzheimer's drug. It is off-label use. They have a starter dose pack. I am on day four now. The first day I took it, I had had a chronic headache for 12 straight days and thought I was going to lose my mind. I woke up the next morning with no headache. I have had no headache for each of the four days I have been on it. It, so far, has been amazing. It is also alleged to have great effects on adult add.
Finally, the neuro said that if nothing else works, then we can look into botox injections, which she said is really the gold standard and has a high success rate. She said though that it can be difficult to get the insurance to cover and expensive, so they try to cycle through all the other options first.
From my personal experience, I can also add that during a bad flaire, putting biofreeze on the back of my head and then laying my head on a heating pad is kind of a distraction from the headache pain. I usually put lavender and peppermint on my heating pad, and that actually has helped.