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Headaches increasing, multiple ccm

PostPosted: Tue Mar 26, 2019 7:25 pm
by Moebird
I was diagnosed 30 years ago, with the familial form of ccm. I've watched what it has done to my family members, and to me. I've had headaches for much of my life, in "cycles". I would have headaches for a period of time, and then they would go away for a period of time. I thought maybe these were small bleeds and when the blood was re-absorbed, the headache went away.

The neurologists here in the South Okanagan don't seem to think ccms are a big deal, and in the past 10 years I've have 2 MRIs, one because my GP thought maybe there was something other than an angioma in my head. It showed nothing new, no new bleeds. The last neurologist I saw basically told me to relax and stop worrying about what is going on in my head.

My GP has referred me to the local pain clinic (several months ago) but I have heard nothing as yet. The Chronic Pain Centre in Calgary didn't do much for me, just got me addicted to opiods and then finally gave me a medical marijuana license. I find cannabis is the best thing when I have a mild headache, but when I get a "9" nothing but Sumatriptan seems to help....and then I get a rebound headache. I've been off the opiods for about 6 years now.

I've been watching the World Migraine Summit this week, hoping to find something to relieve what has become "chronic migraine" - more than 15 migraine days per month. There are some promising new drugs that will be available in the next 2 to 3 years, but nothing for me right now.
I exercise regularly, am tracking my foods in the hope of determining what my triggers are, and just generally trying to take good care of myself, but I am still losing a lot of days to migraines.
Anyone else experience this?

I have too many small angiomas to count, mostly scattered throughout the cerebellum, with several in my brainstem, one in the pons and 2 in my spine.

Re: Headaches increasing, multiple ccm

PostPosted: Thu Apr 04, 2019 12:55 am
by Elizabeth
I'm so sorry. I know there are lots of others with bad headaches and angiomas. A lot of people here have been told ( incorrectly I think)....that angiomas don't cause headaches...ugh...I disagree, and am glad that at least for you they are sort of trying to help you. I wish there was a better solution. I had headaches years ago...thank god mine are gone. I know the misery. I only had one angiomas (hopefully) and it's gone. Many years ago, long before I knew about my angiomas I had bad was probably bleeding all those years I suffered. I tried all the diet things, sugar, caffeine, etc...nothing helped.. They did just stop when I was in my late 20s. I have no idea why. I hope for you that they just stop eventually too.