Chiari Online Support Group

ChiariLand is a lonely place...But we are not alone!🙌🏽

About 7 years ago, I started experiencing symptoms of what doctors thought was lupus. After seeing endless specialists, I realized that the stress from not knowing what was wrong was making me feel worse than my symptoms. I stopped seeing doctors for testing shorty thereafter. A few years later, I was attacked during my birthday celebration during which I suffered punches, stomping, and kicks to my head repeatedly. I was diagnosed with a concussion and referred to a neurologist. Nervous about the impact to my career, I chose to see my PCP instead. She recommended a few weeks out of work for healing and driving safety, but didn’t anticipate long term implications. Over time, the migraines that I’d become accustomed to became more frequent and severe. When the tremors and fainting started, I knew I needed to see a neurologist. The first doctor ordered an MRI, jotted “Arnold Chiari -3 MM” on a yellow sticky note and prescribed me propranolol for tremors and headaches. Told me to call her if I decided to have surgery. No need for a follow up. :thinking: She left after saying “Remember…you are not a hysterical woman.” :flushed: The meds helped with tremors but not with my headaches…nor my figure for that matter. A year or so later, desperate for relief and answers, I decided to get a second opinion. The new doctor has been amazing…but I still feel like I’m over medicated for symptoms with no long term solutions in sight. This is the longest flare I’ve head. I’ve been in and out of bed for almost 2 weeks, missing more days of work than I can count. My employer has been extremely supportive; however, I can’t help noticing the side eyes in the office. I have a fiancé and 12 year old son. While I normally feel like the princess of the household, I now feel like a nuisance. I feel like I’m annoying them by being sick. I still feel responsible for making sure they eat and keeping our home in decent shape. If I ask for help, they comply…but I always feel like I’m a burden. I feel guilty for making my son worry and not being the fun-loving woman my fiancé met 9 years ago. I’m spending a lot of time meditating and praying. It has done wonders for my psyche. The worst part of this is feeling like no one understands. I am so happy to have found this group. I read so many posts and think “THAT’s MY LIFE!!” What a relief to be able to share with other people who actually GET IT!! I don’t claim to be a holy roller and God knows I’m not perfect, but I find my peace in Him. I hope you guys can too.

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Hey Yazclass,
For a start, Welcome to Ben’s Friends. Brain conditions can be such fun. NOT.
When you hurt your leg it affects your leg, you may limp and it’s pretty obvious you have a sore leg, but the brain is totally different. There may be no outwardly signs and It can affect EVERYTHING and some people simply don’t understand it, this includes the medical fraternity. I’ve given up on the specialists, each one has their own opinion and often discredits any other specialist opinions. If I wasn’t confused enough before seeing the medicos I sure was by the time I decided I’d had enough of them all.
I too had major stumbling blocks with ‘roles’. I’m the man of the house, the provider and now I can’t. My wife is so very supportive, I’d be lost without her, but those societal norms still play a role in my own self expectations. I tried to push myself to rehabilitate and get back to ‘normal’, but it wasn’t to be, all I was doing was driving myself further into the ground. For months I’d wake in the morning and apologize, eventually my wife jokingly told me to stop apologising or she’d give me something to apologise for. She could see that I wasn’t in this position by choice and having that understanding from her has meant the world to me.

Merl from Moderator Support Team

You’re so right! It doesn’t feel like anyone understands!! I have a habit of trying to carry the world on my shoulders and feeling guilty about everything…even when I haven’t done anything wrong. It is comforting to know that it’s a normal sentiment. I wish I could make everyone around me understand… Thanks so much for the encouraging words.

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I started having symptoms about 6-8 years ago. Obviously they have all gotten progressively worse. The last year I didn’t feel like hiking, because I fall down so much causing torn ligaments and ankle surgery. I don’t like to go to the casinos, the smoke and lights make the headaches worse. I was finally diagnosed last January 9mm drop. It was to late. My husband said he wanted to find someone he could still go live a life with. (Someone not sick). We were together 14 years. He was the love of my life. Now my stepsons want nothing to do with me. They feel loyal to their father and he has already replaced me. The divorce isn’t even final yet. I also just found out my dog is dying of cancer. All I can do is thank everyday I have extra with my dog. This support group has been a life saver. I live in a state with no friends and no family. I just turned 41but my mother has to call me everyday to make sure I have taken my medicine and have not fallen and injured myself. However, I promise no bad we think we have it, someone else has it worse. Everyday I thank God for the family and dog I still have left. When I hit rock bottom it actually gave me some perspective. I have become more great full even though I have less to appreciate. God only gives us what he thinks we can handle. He must think I am a warrior.

You are a warrior! I KNOW it’s not easy…and how difficult it is to form new relationships in a city all alone when you frankly just don’t have the energy to be present enough to pursue them. When I was married before, I lived away from my family and I wasn’t aware of the condition yet. When I had what I known now to be flares, my ex would sit at home hanging out with this family while I drove myself to the hospital thinking I was having a stroke. Going through a divorce is already hard …and we both know the taxing effects of stress on brain disorder sufferers. The good news is that you found out who he WASN’T in time to learn not to depend on someone who isn’t armed to give you the unconditional love that you deserve . God’s Love surpasses all. You and strong and you will make it through this! Considering surgery…or moving closer to family? I can only imagine what you are going through dealing with this alone and I will be praying for you.

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