Hi there everyone.
I was diagnosed last month after years of misdiagnosis for one thing and then another. Anyway, seems like my headaches have intensified as time passes. It starts on the right back/bottom side of my head/neck area and then intensifies to the front. The entire affected area feels numb. I feel weak and sick to my stomach. I have cases of vomiting and passing out in the bathroom after. There really is no telling when I will get an episode, it just happens and totally weakens me to the point that I can sleep for hours on end.
Initially my doctor prescribed Midrin for me to take on the onset of my headache and then I could take Rizatriptan for severe headaches. (this was prescribed before I had my MRI and diagnosis. My PCP tells me that my headaches are not associated with my chiari and that they are migraines. But how can that be?–
Hi there everyone.
What you need to start seeing is a Neurosurgeon, and one that specializes in Chiari. Also, if one does not happen to come up in your area on the internet or in the phonebook, check the Universities close to you. They usually have a least of few who specialize in it. Awareness is helping a great deal. However, the condition is still fairly rare. I am convinced you will be able to find someone soon in your area that will be able to help.
Believe it or not Migraine is a diagnosable type headache and distinguishable from others. There is a higher incidence of migraine with CM1 as well as Cervical Spasm. HOWEVER (and this gets dicey) there hasn’t been found to be a direct relation. Chiari surgery in most studies has been found to fail OVER 90% of the time when spasm is associated and over 50% of the time when pure migraine… I’m away from my library right now but here is one of many studies. The random nature of your headaches is pretty good clue that your doc is on the right track. Almost always there is an association between a specific event and a chiari headache exacerbations noted with cough, exercise, and Valsalva maneuver. As more and more is learned, there is fewer and fewer surgeries and even fewer "Chiari Specialists/centers. As catlover noted a University is prolly your best source (NOT a private practice associated with a university - there is a difference)
Thanks for the replies, it’s been kind of hard for me to actually sit with someone and talk about my headaches. Sometimes I feel like people (especially family) think I’m making this stuff up.
So I am very thankful that after many years of misdiagnosis I finally have an answer. I am waiting on call back for appointments at a few universities around the Dallas area. I’ve been harrasing the UT Southwestern neuro department but haven’t had luck yet. Even though I know what’s wrong with me, I still feel like I know nothing about CM.
I’m interested here as I have been diagnosed with Chiari (earlier last year), although the doctors I see keep returning to a diagnosis of migraine.
Maria’s initial post didn’t seem to mention any specifics of the headaches let your (ModSupport’s) reply talked about the random nature of the headaches being an indication of them being on the right track with migraine as a diagnosis.
Since I keep getting this diagnosis (my headaches are pretty consistent, pounding/whooshing causing pain/nausea and lethargy) I’m curious to see if this relates to me?
There is also no mention of duration of the headaches here or other specifics.
I have leaned that there are different types of headaches In the past year.
I do not have a neurosurgeon yet because of conflicts with insurance but I still take medication for migraines and a muscle relaxer. My headaches are different. For example I may get a headache from working out. I tend to have to do light workout or else my head feels like it will explode. I believe these to be true Chiari headaches. I also get these intense headaches that could be “stress” related according to my doctor. These headaches start at the back of my neck and travel to my head, they cause nausea and vomiting.
Just two months ago I experienced a different type of migraine that started out with a kaleidoscope vision and follows with nausea and vomiting. I have never experienced that before but the headache went away after taking midrin…that headache sounds more like a migraine to me.
Regardless, I know I won’t get straight answers until I see a neurosurgeon…for now I have been able to control my headaches with medication and sleep.