Hi Maile and welcome to NeuroTalk!
I'm posting the link to the Headache Forum in case you haven't found it already. Hopefully someone there can offer you some suggestions.
http://neurotalk.psychcentral.com/forum32.html
I'm sorry that I'm not very familiar with your condition but I bet there are lots of people here who are. Please feel free to roam around all the forums and join in wherever you feel comfortable. Glad you found us!