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Losing hope.

Apr 04, 2015 2:35 PM

So now for two years I've been dealing with virtigo like symptoms where I can't walk. It's become the norm for me and I've been to many neurologist for it and they have told me basically I'm crazy and that I just need to get up and get a life. I tried that, it didn't work. I was better for about six months, everything was going great and then bam. Everything hit me like a ton of bricks again, no warning, nothing. Everything has only gotten worse. I get head splitting migraines (although cortisone shots have helped a lot) I get nauseas, I pass out (I don't completely pass out but it's hard to explain because I don't fully lose consciousness, just mostly and I become very unresponsive) I forget how to talk, my legs, and sometimes my whole body goes totally numb. I get tunnel vision because the blood rushes out of my head, half of the time my brain feels like scrambled eggs! I saw a neurologist yesterday and I've told him all of this, he did an MRI on me and then told me I need to see a psychiatrist. Once I was in the car I started crying because I felt so ashamed and embarrassed. I feel stupid, but how can this all be in my head? Why would I want this on myself? I'm a 16 year old girl. I don't want to be stuck in bed most of the time, I want to be out with my friends. I get good grades, I have a few mental health issues but they're under control. I just don't understand how he can just know me for a month, have only actually seen me twice for about an hour combined and look me in the eyes and tell me there's nothing wrong with me. There's obviously something wrong. You can't fake passing out. The things that I'm going through I wouldn't wish on my worst enemy. I go through so much every day. It's a battle to stay focused and to stay awake and hopeful. It's a battle that I fight every single day and I just don't understand how he can just look me in the eye and tell me my battle is imaginary. 😢

Apr 04, 2015 3:10 PM

I'm sorry that you are going through that. It sounds super scary.
When doctors tell you it is all in your head and you must be making it up it really means one of 2 things. 1) They are stumped and have no idea and therefore it must be the patients fault because they can't admit they have no idea. 2) They are too lazy to continue looking.
Your age is unfortunately against you in this case. I find that the younger you are the less likely they are to listen to you. If you can take parents or grandparents who believe you to appointments the doctors might be more willing to listen to them. Maybe even written accounts of 'episodes' from school officials? I'm 28 and I finally just found a doctor who didn't immediately call me crazy, it's only taken 12 years for someone to actually listen to what I have to say.
Don't give up.
I hope you get some answers soon.

Apr 04, 2015 6:24 PM

Rainbowgirl, Don't give up. Go see another doctor, and another until you find one who listens. The next episode that happens, go to the ER. Also follow the advice from Gotobef, about taking a parent or go and parent with you. Have you ever been bitten by a tick? I'm reading a book on Lyme's disease and some of your symptoms are listed. Document dates, times, duration and type of symptoms you have. Use a camera and have someone else to video you. Praying for you. 🙏🌼

Apr 04, 2015 9:11 PM

Rainbow girl 00 I am so sorry that you are having to deal with all of this at such a young age. Don't give up get another Dr go to a children's hospital, they may be able to diagnose your problems. I will keep you in my prayers.

Apr 05, 2015 5:56 PM

Like FlappysLady81, I wondered if you might have Lyme disease. I would encourage you, if you can, to be seen by a neurologist at a large, teaching hospital. Local doctors aren't generally up on the odd and obscure.

Apr 05, 2015 8:45 PM

when I was about that age, I started experiencing similar symptoms. Drs kept telling me it was in my head too. It happened all the time. It happened at university, so I was taken to the campus Dr.

She recognized what I was going threw, having experienced it too. She told me I was having a paralyzing panic attack. She said that I was probably so chemicaly unbalanced that my body didn't know how to respond. She explained how the problem was very real even if it was 'in my head'.

She sent me home with prescriptions for anxiety medications. One to take when I had an episode and one to take daily to control it. I had no intension of filling either until I got home and started looking into her theory.
A few days later I got them filled out. Once I realized that the first medication really worked (the one I took during an episode), I started taking the daily ones.

Fast forward 15 years, and I rarely get an episode. I found that understanding my problem really helped me to control it. I really hope this helps you. I was so grateful once I realized that that Dr had 'fixed' me. I wish you all the best, and keep in mind that it does get better <3

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