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My Chiari Life: Update

Growing up I had headaches all the time. I spent a lot of time crying in my dark dark room at really young ages because my migraines were so bad. I had a great pediatrician growing up and he always equated it to my sinuses (I was ALWAYS congested). I took a lot of antibiotics as a child for sinus infections. I was also super lucky, because I had a nurse mom who would just call my amazing pediatrician and say, "Another infection..." and he would call in the medication, at least that's how I remember it. And, while I did have sinus infections a lot, that was not always the reason for my headaches when I was little. 

In high school I was super accident prone. Basketball practices were the prime time to make jokes about me being on the ground again, and my coaches would check my shoe laces and tie them in triple knots. The fourth or fifth time I would fall, hard (and this was at every practice mind you), Coach would walk up to the black lines and wipe them down just to make sure they really were flat and smooth. Those line monsters were real. Either that or I had some serious balance issues. Needless to say, gym floors are hard and I was a walking bruise in high school. 

In college we found a TMJ specialist who swore he could cure my headaches that were occurring even more frequently. I definitely had some space issues around my jaw and the base of my skull according to his x-rays. We prepaid a lot of money for all the treatments, he gave me a retainer, then he left town. Ummmm..... Thanks pal? 

A couple years later I was really sick. Not like visibly sick, but I was unable to do much of anything because I had 4 to 5 violent migraine days a week. My anxiety was through the roof. The basic action of standing up would at times cause me to black out, and my fingers and toes were always numb. If I was able to be a functioning adult, I couldn't hear anything because my ears were constantly ringing. And the ring was so LOUD! That among other really strange medical anomalies caused my genius doctor to think "BRAIN TUMOR!" She promptly ordered a MRI of my brain. 

We got the great news just after my 25th Birthday, on Christmas Eve's Eve. I say great news because she started with, "Well, it's not a brain tumor..." but, there was a major but. 

Arnold Chiari Malformation Type 1 isn't something many people knew much about in my lovely town. We spent a lot of time researching in online, and WebMd makes everything sound like a death sentence! I visited a couple neurologist in town who told me that I showed every sign of it but my brain scans didn't show enough damage for Chiari (whatever that means?) so they couldn't treat me. But then I got the amazing referral to the University of Utah Headache Clinic. (Have you checked out my last post? It is my explanation of what Chiari actually is.)

The headache clinic has been every answer to every prayer. My amazing doctor there and my amazing doctor at home have a great relationship and work so well together to ensure that I am taken care of. 

I am now highly medicated and that is working. There are other options for treatment, like brain surgery, but for my case that is really extreme and the medication is taking care of most of my symptoms. I take 4 medications, 7 pills, each night (this makes me a spoonie). One script to help keep my back muscles calm and relaxed. One to help with the neuropathy and any damage that has happened because of the pressure that exists due to the malformation. I take another to help make sure I don't have seizures (not an actual side effect of Chiari it is just an anti seizure medicine that prevents migraines and they don't know the actual reason why). And an iron supplement because iron rich foods have an enzyme that triggers my migraines. I also have PRNs that I can take when I need them to help me go about my day to day life. 

My Chiari Life in the last year has been so much different than in any year past. I still experience tinnitus, which is ear ringing- but not as extreme. My fingers, toes and nose feel like ice cubes on a day to day basis and you will typically see me in a chunky sweater because I am so cold. This is due to my low iron count. Dizziness and blacking out happens a lot less frequently but still occurs, typically right before or right after a migraine flare, and I hardly see my orbie friend anymore. Although, I have had headaches often, I have had maybe 5 migraine days in the last year! 

A couple months ago I also chose to get daith piercings. Some days I think they help and other days I can really feel the pressure build up at the base of my neck and down my spine and then I think the piercings are a hoax. We have played with some of my medications to see what I can come off and that feels really promising. 

All in all, I really think with the help of my doctors and the extra baggage of negativity and stress I have dropped, I am beginning to find a happy medium in this Chiari journey. Because there is no cure, there is a lot of trial and error that goes on.  I really miss eating bananas and avocados, but I do sneak an occasional taste here and there, and suffer the consequences each time. I am feeling so blessed to have the support group I have and the doctors I have who answer text messages and emails almost instantly. 

A year ago, my Chiari Life was just looking forward to the next time I had a doctor visit and I could go to the donut shop, but now I can honestly say, I'm looking forward to living life. 





*** Note: I just read the Journey To A Doughnut  back- life is so good now! Also, I don't get hiccups very often now, so that means better fluid flow which is good. 

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