Staring at this picture, how does it make you feel? Dizzy?
Welcome to my world. I am dizzy 24/7/ 365 and nobody can tell me why...
Over a year ago, after I gave birth to my beautiful daughter, I woke up 2 days later with the room spinning so violently that I could barely sit up. What was happening? Thank goodness I was still in the hospital, but the ER Doctor, OB/GYN Doctor and the Nuerologist all came to visit but could not tell what was wrong. Little would I know, I would still be suffering with this over a year later...
This has been the HARDEST challenge of my life. When your life is flipped upside down, literally, it is so difficult to get anything accomplished. The worst part about it is nobody can tell me what is wrong or when or if it will ever go away. The scariest part is- will I live the rest of my life like this? I pray I won't, but at least I am living.
Rewind 20 years ago. I was 10-years-old and I was complaining to my mother about being dizzy. I do have memories of this and remember hating going to bed. I remember laying down was the worst (it still is- I feel like I am rolling down a hill or in plane turbulence-ick) so I would stack as many pillows as high as I could so my head would be up tall. Not as comfortable as it sounds, but hey, it kept the dizzies at bay. The Dr. then told my mom to put me in activities that would strenghen the inner-ear, which controls your balance system, and so gymnastics, figure skating, cheer, dance- you name it, I did it. I would then get "dizzy spells" a few times a year but identified my triggers- lack of sleep, oversleeping, not eating, etc. Also, the weather was a huge trigger. October and February were bad months for me as this was when the season and pressure changes in San Diego happen. But, why was this causing me to be dizzy?
After Hayden's c-section, I was SO dizzy the next day, so bad that I couldn't even get up to the NICU to see my new baby boy. The next day it had settled down, but what was it? The medications? Who knows?
Fast forward to the present. After numerous visits with Dr.'s, including "witch doctors" (i've tried them all! ;) inner ear specialists, nuerologists, accupuncurists, chiropractors, testings, mri's, vestibular rehabilitation therapy for 6 weeks, etc. nobody is able to "cure" me. it is beyond sad, depressing and very frusterating. it has worn and torn me down but i refuse to give up. i don't have a choice. i can't either sit and feel dizzy or be pro-active about it. I have learned that i need to be my own advocate and I need to perserve and keep going forward.
my current nuerologist is beyond impressed with all of my research and i have taught him a few things or two! because of this, i have been diagnosed with migraine associated vertigo. imagine that, a migraine that causes dizziness? i don't get the headache either (although I would perfer that if i had a choice) this is what i believe i had when i was 10-years-old. i have learned what my triggers are and i have started a migraine preventative medication that i've been taking since june. i have not had a migraine attack ever since!
it's just this other 24/7 dizzy rockiness that i can't get rid off. it's hard to explain, almost like i'm almost on a boat, or walking on a cloud. i tell hayden, "mommy feels like she is on the teacups at disneyland and can't get off!" (although i used to like that ride before! not anymore!)
these are a few of my hypothesis of what could be wrong with me...
Theory #1
I was sick with a cough/cold when I went into holland's c-section surgery but didn't have a fever so the Dr. thought I'd be fine. Because all of my brain testing has come back normal (thank goodness) my nuerologist now agrees with me that i could have had an inner ear virus aka vestibular neuritis. unfortunately, there is nothing i can do about except get back into vestibular rehabilitation and do exercises that will strenthen the inner-ear. I've had 2 Doctors say my inner-ear is fine so it's so tricky with the conflicting views? I guess the inner-ear is so tiny and small that it's really hard to see. I've met 2 friends on-line that took them 5 years before they felt 100%. This will be a long road to recovery if this is what I have, I am hoping this is what it is!
Theory #2
I had a spinal block, could I still have a small leak? There are 2 Doctors at Duke University that are treating chronic dizzy patients with abnormal Cerebral Spinal Fluids. Ever since that fateful day, I've had blurry vision, (tinnitus) ringing in my ears, brain fog, and of course vertigo which could all be signs of a spinal leak or abnormal CSF pressure. There are people that have been dizzy for years that are walking out not dizzy. I am hoping to be one of them! I just have to undergo a spinal tap (ouch) and see if our insurance will cover this...
Theory #3
I hope I am not this one, but Doctors at the Mayo Clinic have come up with "Chronic Subjective Vertigo" and bascially there is nothing you can do about it and you'll be dizzy the rest of your life-blah. My nuerologist doesn't agree with this diagnosis at all and doesn't think I have this so that's some good news!
Here is a diagram of the inner-ear. Basically, my brain and the inner-ear are not communicating and I'm guessing the virus attacked the vestibular nerve.
Inner-Ear
This is an invisible illness. On the outside, I might look "normal" but really I couldn't feel further from this (my face should be GREEN) It's been a really tough time on me and my family, but I try to carry on and keep busy. Even though I have gained 25 pounds from medications, I'm thankful for modern medicene that I can trial to see if anything will bring comfort. I'm thankful that I can go to work and still be a wife and mother even though I don't give myself the credit for being the best I can be. I am thankful for my amazing husband and my sweet kids that make me laugh and smile.
I am more than ever grateful for health. I've always taken that for granted and know without it, everything is more difficult and uncertain. I know that Heavenly Father doesn't give us anything we cannot handle and wants us to learn lessons and I have learned some very important ones such as slowing down and valuing the ordinary things that I wouldn't have done so before such as preparing my children's lunches, washing dishes, cleaning up toys, etc. These things become part of everyday "chores" when they are in fact so special and a wonderful duty as a mother.
Now, try shaking your head back and forth 20 times really fast and go do a task! That is how I feel. It's really hard but I have learned to live with it (gulp) and have hope my world will be non- dizzy once again.
i've had friends and family inquire about how i feel and i have found this wonderful, helpful website if you are interested...
http://www.labyrinthitis.org.uk/knowsum1.htm
i will keep updating with what is hopefully progress and i pray one day i can say that i am dizzy-free. thank you for reading my post and i appreciate any and all prayers.
godspeed.
i've had friends and family inquire about how i feel and i have found this wonderful, helpful website if you are interested...
http://www.labyrinthitis.org.uk/knowsum1.htm
i will keep updating with what is hopefully progress and i pray one day i can say that i am dizzy-free. thank you for reading my post and i appreciate any and all prayers.
godspeed.
mermaid holland along with her other mermaid friend!
