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invisibALL
My Story
My story of recovering from vestibular migraines Lets ALL raise awareness of this invisible illness, so we can do ALL of the things we love again !

July 3, 2015. The day my life changed forever. I experienced bizarre feelings of imbalanced and tingling. I started my freshman year of college off in the ER and ended up going to over ten different doctors and getting every test imaginable done (all with good results thankfully). I was left puzzled and frustrated by these odd sensations that made walking to class, sitting still, and standing in crowds difficult for over five months, until reaching a diagnosis of vestibular migraine. I luckily, don't get unbearable headaches, instead I am left feeling imbalanced (like I am walking on clouds and need to hold onto something), pressure in my body, numb legs, tingling all over, neck pain, and other weird symptoms. I don't have a brain disorder. I just needed/need to retrain my brain to understand my environment. For the next eight months I spent every day attempting to get back to where I was a year ago before I lost my health. I took a 25 min taxi ride to vestibular rehab twice a week ( my savior), craniologist every week, and was on the migraine diet/still am (low sodium, no chocolate, cheese, nuts, avocado, citrus,yogurt,etc). I was doing everything I could to feel better but life was tough. Pretty miserable actually. I felt like I lost something, and that something was part of myself. The old me that could do everything or anything really. After being on multiple different vitamins and allergy medications I started Topamax. All of the neurologists I saw said I forget how to spell and say words sometimes, be drowsy, and have a difficult time paying attention. I felt drugged and brain fogged constantly. I remember in one class my professor asked me to do some easy arithmetic that I could usually do in my head or just on paper and I stared blankly. I laughed, but on the inside I was so frustrated. I knew how to add two numbers but the brain fog was really getting to me. Some days my sentences just get jumbled and I have to restart my thoughts. Even writing this blog took longer than it would have a little more than a year ago. Every day I took taxis to class and back. That was the biggest adventure of my days. I couldn't sit in the dinning hall for more than a couple of minutes. I couldn't stand in the shower and rinse all of the shampoo out of my hair. I couldn't read a page of my book. I would be asked if I was drunk at least five times a week. My parents came to visit every couple of weeks and check on me. I had gone from a crazy, fun, kind girl to someone who was basically handicapped. I felt like my life was so unfair. I was missing out on everything. But I was not going to give up. I rushed a sorority although I felt like i was going to vomit throughout the process. I passed three classes with the help of talking to my dad every night about each subject. I went to occasional parties for a solid ten minutes just to make an appearance. I loved the friends and school, I just had to do everything I could to feel good. Towards the end of the year as I raised my medication a tiny bit, I made some improvements. I could move my head from side to side without feeling imbalanced! I finished off my classes with mostly B's and was left with a big decision for my summer.  I was supposed to go back to my sleep away camp to be a counselor (11th summer). I was a nervous wreck. I was scared I would have to leave because i wouldn't be able to handle any of it. It had been a year since I started getting imbalanced every day. I spent every day leading up to camp playing a different sport for five minutes. I exposed myself to bad situations like escalators and the metro. I rode that thing 8 times until I didn't feel like I would puke. I left for camp. I still had some episodes but was on a schedule of all my medicines and meals. I was distracted by my wonderful campers. I was feeling better! I was exercising so much every day. Not only did I finish the summer, but I received the counselor of the year award. I have never been more proud of myself. Today, I am sitting in my college dorm room as a sophomore. A year ago I thought I would never see an end to this invisible illness. I thought I would have to leave this school I love. Six months ago I couldn't walk up the stairs without feeling sick. Now I have been on go-karts and can stand for 25 minutes. Today, i went back to my vestibular rehab and my incredible PT said I was done there. I still have bad days. I still have episodes of imbalance. I still have trouble processing and doing my school work which is new to me. But I have made so much progress. It has been quite a hell of a year, a year of recovery. Losing my health was unexpected. It was the scariest thing I have ever been through and am still going through. I am here to give others hope. I don’t want anyone to go through what I went through even though I had the best possible care. Not being able to get a diagnosis for so long and having people not understand has been the hardest parts. But this year has taught me more than I could ever imagine. I have learned that life is too short to worry about what other people think. Whether they think its so weird that you have to wear a baseball hat or sunglasses indoors. Whether you have to get up in the middle of class and run in place. They don’t know what your story is. I appreciate the small things in life. Whenever I feel good I make those the greatest moments ,because who knows when they will be taken away from you. I can't do as much in one day, I need breaks and to plan ahead. I can't drink. I can't eat any of the foods I love. But I don't need that. I have so much of my balance back. I can go on a walk by myself. I can wait at a cross walk without wanting to vomit. I can go to parties and actually enjoy parts of them. I can sit in resturants and have conversations without feeling imbalanced. All things I took for granted. I have my family that I couldn't have gone through any of this without. I have my wonderful friends. I want people to know that even at the lowest of times to not give up. This is my story. A story that had a perfect beginning until July 3, 2015. You would never know by looking at me. But on the inside I have experienced things like a 48 hour heart monitor that I didn't think would be included in my freshman year. I spent some time thinking I was going to feel that miserable forever. I sulked. But I needed to. After a little, I decided I wasn't going to let vestibular migraines define me. My mom said I am now a girl who has a condition on the side. I will not let vestibular migraines take over my life. For almost a year I missed out on the things I enjoyed, but now I might have to take more breaks along the road but I will do everything I love. The next time someone doesn't hold the door for you, don't mummer under your breath. Who knows, they could have a broken arm under their sleeve or just going through something tough. They have a story of their own. I don't need or want pity. I just want to inform others of this illness that can't be seen. I have been questioned by not only my peers but doctors if it was all in my head. I don't want anyone to go through what I went through. Feeling imbalanced every day of your life for a year is hard enough, but having to deal with explaining yourself is almost harder. I get what it's like to be on the other side. It's hard, no matter how much explanation I give no one will understand and I get that now (it took me a while). My mom who also has a vestbiluar disorder would ocassionaly not be able to do things ( before i was imbalanced) . I would say " come on mom you'll rest later". But I now know she not only needed rest but I should have been applauding her with what she was going through while we were sitting at a basketball game. I never understood when it wasn't happening to me. I hope to spread awareness to those who don't have vestibular disorders and those that do along with VEDA about this debilitating illness and together we can all share our stories and do ALL the things we love. I wish I had known about VEDA earlier in the to understand more about this process. Just remember,YOU can do this. Whatever "this" is. #defeatdizziness 


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