I am doing my June migraine awareness posts and images on my new blog I set aside for migraine related topics called Migraineur Mutterings and Musings with the images on the Facebook Page. So there is where you will find my blog posts this year and my images of awareness. I realized I needed a special place to focus on migraines, since I tend to focus on chronic pain, chronic illness and more general issues on here, although I refer to migraines of course. It will not have as many blog posts in general, so this is my main focus. But in June it will have a lot of action on it. So about a post a week. And two images a day on the Page.
For my awareness post here I will give you the rundown of my history with migraines. I was officially diagnosed with migraines with aura when I was 20. I had silent migraines when I was 12, given the auras I had. And I had menstrual migraines since then too but it took some time before they were diagnosed, since they were different from my other migraines and just though they were wicked headaches due to PMS and FM.
I got migraines from the get-go pretty frequently. Around 6-8 a month. It slowly increased from there. I never went into MOH. I took my triptans as prescribed and was never given a rescue med into much, much later in life. They became chronic. And I was told the reason was central sensitization. Much like FM. They progressed from there. From 15-20 to 20-25 to daily. Which I have stayed at for 14 years.
When I was working full-time I had a lot of issues with painsomnia resulting in sleep deprivation which led to status migraines. During on status migraine of a week and a half I got nerve damage in my hand. Either from the status migraine, or from a stroke in my sleep. Neuros debate about it.
Working wasn't working out so well for me however. I was on leaves a lot. Missing a lot of work. And work itself was a torture of pain tolerance. The pain clinic flat out told me I could not work full time. I take to find a way to work part-time. Which I have. On the work front this has indeed been easier to handle and less status migraines as a result.
One of the worst problems I face is people not understanding how severe the symptoms of migraines are. When I say I cannot work. I mean it. I mean it is over the top. Not a migraine I can work with. Or drive with. Or function with. Not 'well can you come in later?' If I could have treated it, then I'd be able to function somewhat. Obviously I tried that with no result.
One of my greatest fears it that the migraines will never decrease in frequency. I know they can. I just for for me they won't. I wish for pain breaks so bad.
One piece of advice I would give someone with migraines is this: When your neuro says he has run out of ideas... then he is not very creative because there are a hundred off-label preventatives to try and he is clearly not trying hard. Either recommend one to Him, ask him why the list of others won't work or switch neuros.