I triggered into a migraine by breakfast time myself, so I feel you there.
We had fairly good responses from our 1st meeting with McCaskill's aide (Senate side), and the last aide from Graves' office (House side). The other 3 meetings we had were mixed, with 2 seeming to be listening politely and the other who was sympathetic (as she had once spent an entire week in bed with severe vertigo), but even seemed to also lean more towards a no on the other issues as well.
McCaskill's office was very receptive once we stated we were not looking for funding - yet - but we wanted a hearing. The aide in Graves' office had a girlfriend who suffered frequebt migraines. Her doctor's answer? Put her on caffeine pills. We were horrified!
I think my biggest point right now is how much money we could put back into the economy if we could get the most ill up and working again. I think that would be pretty self-explanatory, but I know it's just difficult right now in this political climate. We have funding for S.597 through the House, but not the Senate yet.
This was my first HOH so I can't compare it to other HOHs in theme or information, but I think having a patient voice in this effort is very important and I would do it all over again given the chance.
I'm sitting here, and have no words. I am so thankful there are people out there that are trying to actually make our pain "real" to others. I think the problem people have, is that they can't actually "see" anything physically wrong with us. Therefore, it doesn't exist. I had to quit my job 20 years ago because my boss just didn't get it. Unless you have ever had a migraine, it is IMPOSSIBLE to explain to someone. A brick, a Mack Truck, a sledgehammer, are all good ways to verbally explain, but it's just trapped inside your head where no one can see.
Thank you for speaking for all of us. (I can hardly chaperone a field trip without getting a migraine.) I hope they will listen.
Debbie
Hi Debbie,
Thanks for reading. Because Migraine is an "invisiable" illness the stigma that comes along with it is very real. But the thing is we all new to "do" something to help each other. If some of us can go to Headache on the Hill great, those who can't, can help by clicking on action alerts when the time comes.
I guess my thoughts are - we all need to work together to break the stigma that surrounds Migraine and headache disorders. No one else is going to do it for us. With 37 million of us, we can make a difference!
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Sounds like a job well done, Nancy!! Thank you for all you efforts. You were speaking for so many of us who couldn't be there but who were with you all in spirit.
It was quite the trip, Betsy. It will take me a while yet to recover but all for a good cause!