Probably the best known and least favorite symptom of Chiari Malformation I is the wretched headache that radiates pain and at times just feels like being hit with a sledge hammer. Over and over. Sometimes for days. Or weeks. Or, God forbid, years! My neurosurgeon told me many people take years to discover the true cause of their horrific pain and while I suffered for 18 months, once I was diagnosed, I had my surgery about two weeks later.
The thing is this, unlike many other surgeries, a Chiari Decompression is not so much for the purpose of treating pain although that is always a hopeful side effect, it is to prevent further damage from occurring to the brain stem and spinal column. Usually, opening up the space provides relief, but this is not always the case.
For me, the headaches are not as bad most of the time. It is a headache that is pretty steady and is able to keep me just able to live life but not in the exciting way. I have grown accustomed to the daily ins and outs of pain, they come and go throughout the day. There are days I wake up and I know a storm is coming, or worse, it is already here. These are often bad days where I don’t do much and I have built up a guilt tolerance. I have to rest on these days and that is life.
There is no medication that I have been prescribed that touches the headaches, all the meds that work come from the ER, but that is not where I like to be, so I try to calm my headaches when I feel them getting out of control. I will stop reading or doing anything that involves using my eyes, often this leads to going to sleep which often helps. I will ice my head and forehead and that works when the pain is too intense to sleep. I will meditate, sing to myself, and just do self-soothing actions until I can sleep. Sleep often helps make them better or even back to normal.
I will be honest with you; I would much rather prefer a cure than the normal headache, but I will take what I can get right now!
If you want to learn more about Chiari Malformation I urge you to visit Bobby Jones CSF and take some time looking around that site. (I do not work for them, but I do volunteer fundraising to further their cause of education and research.)
Also, if you want to help support fundraising for education and awareness about Chiari Malformation I suggest you visit Chimera Pillow and check out the comfy pillow that my mom created to help me with my headaches. (I am a spokesperson and blogger, both volunteer…for now.)