By Stephanie Pazicni Karfelt / LipreadingMom.com Guest Blogger
Amusement parks. Carnival rides. Roller coasters. Are you a fan? House of mirrors. Swinging bridges. Optical illusions. Are you in? I’ve been trapped here for over a decade now, in my own personal Fun House. My universe is the world of chronic vertigo. We all have our cross to bear and after all of these years this is now the new normal. My world shifts, rolls, quivers and occasionally spins. I barely remember what it was like before, just vague memories of greener pastures – coordination, balance, no spinning, elevator dismounts without stumbling, multi-tasking without dropping. I know exactly when my world started to rock, it started suddenly and it has never completely righted itself in the ten years since.
For the sake time and space, let me sum up the early years spent searching for a diagnosis: Dozens of Doctors, Specialists, Eye Doctors, and Audiologists; testing included but not limited to heart, vision, hearing, CT Scans, PET Scans, MRIs, blood tests, biopsies. Medications: The good, the bad, and the ugly, most of which made me worse or ill. I’ve never been able to tolerate medication well, and now it tends to make me spin faster rather than the usual bouts of disorientation or rocking. Diagnoses that have been tossed my way: Lupus and a plethora of auto-immune diseases, including but not limited to MS, Lyme, Chronic Fatigue, Sjogren’s Syndrome (the only one that was ever substantiated) and the jewel in the crown – Pheochromocytoma. I’ll spare you those details beyond that those symptoms were caused by one of the medications.
After years spent chasing a diagnosis, I finally had enough. I staggered dizzily away from the dream of a cure. I’d lost trust in medicine, not to mention tens of thousands of dollars in out of pocket medical costs. I accepted my rocking life and learned to live with chronic vertigo. My conclusion is there are worse things than living in a Fun House, though some days I don’t always believe me.
Taking charge of what I could control, I made myself the healthiest dizzy person I could be. I eliminated things that made the vertigo worse (lack of sleep, caffeine, alcohol, TV). Focused on what helped (healthy food, exercise, positive attitude) and went about having a life. I try not to let my vertigo define me; in fact people who just meet me probably have no idea. I jog, travel, and wear heels when I’m feeling brave and somewhat stable. Last year I tried skydiving, this year I back-packed into the Grand Canyon on a twenty mile hike.
I’m one of the lucky ones. I have faith and a husband who is there when I fall down, a family that loves me, and a Doctor who supports my choices. My passion is my writing and I’m blessed to be able to do what I love. May we all be so fortunate, my friends. Be well and I suppose I will continue to rock on and dream of a world without stripes or patterned carpeting.
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Stephanie Pazicni Karfelt loves laughter, writing Speculative Fiction, being a wife and mother, and dabbling in the high-tech industry for story-fodder. Find her humorous take on writing at The Glitter Globe.
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Lipreading Mom 
Holy bananas, why hasn’t it been diagnosed? It sounds like Meniers Disease which can be accompanied by tinnitus and hearing issues. There is a Professor, at the Massachusetts Institute of Technology, I think, who has pioneered a cap like an underwater diving helmet. (It will get smaller with time.) It bypasses the ears by using receptors planced under the tongue to connect to the brain. Messages are sent, bypassing the ears. A woman patient managed to hold onto the table and let go for a few seconds without everything moving. The other good news is that they don’t operate any more. Doctors used to say that you could lose hearing in that ear which usually happened. One thing I read about was a lack of a particular vitamin. That’s hearsay. Of course if you can find the Professor, you might get on his next trial. Best of luck.
Thanks for the interesting info!
Maybe part of the problem with getting a diagnosis has been that I live in a fairly small area. I think a good portion of my medical run around might have been avoided if I’d gotten to the correct specialists sooner. I did, however, refer myself to The Cleveland Clinic and that got me as far as I didn’t have pheochromocytoma. I was told, soon after that, that there isn’t much to be done for vertigo even if it was Meniers Disease. What is done for the treatment of Meniers?
…dream of a world without stripes or patterned carpeting…
So funny! and so true! My episodes of vertigo are that, episodes. I have greater issues managing my sanity with my tinnitus. But knowing that an episode can always strike (and for me, it isn’t apparent that one thing or another causes it, for I can do the same movement twice and one time nothing comes of it, the other I’m tipping over. I know, essentially, what caused mine, but knowing does not bring on a ready solution. We cope. We manage. Some days. Ultimately, keeping the sense of humor (as I have referenced with a copy of your own line) is the deal maker or breaker. Thanks for sharing!
Deborah – Your courage and humor with your health is to be admired. Blessings to you.
Wow, Deborah, I’m sorry to know you understand what I’m saying. My spinning comes in episodes also. The degree of rocking and movement also varies. (Once I was in a minor earthquake, kept right on doing what I was doing, assuming it was me. Then I thought, “Wait, things are falling down, that’s new.” ;D Trying to figure out what makes it worse is a bit of a freaky path of its own for me. I tend to try to avoid anything that I was doing/eating or whatever brings the worst of it on. Do you do that too? *making the call me gesture* Us dizzies have to stick together.
Your story is touching im 22 and i just started having vertigo and its been 6 months so far and no silverlining in sight. Sadly im also an singular optic so its rough already. Its affected my my job and my life. Was there any thing in your experience that you can recommend?
Jim,
I’m sorry to hear that you have this. I laugh about it on the good days, and I’d cry on the bad days if it didn’t just make me dizzier. There is absolutely nothing funny about it on the days when it is bad.
Have you been to the doctor? Doctors? (Meaning plural?) What do they say?
As you saw in my story I’ve seen many, many doctors about it during the early years. Since it has now been twelve years, I know mine isn’t something “dangerous”.
I will tell you what has worked for me – but PLEASE see your doctor because there can be many reasons and sometimes cures for this problem, don’t try to wait it out.
After going through the roller coaster years of many meds/tests/doctors, in the end I ended up going off all medications except a low daily dose of diazepam. (point.5 mg a day) For some reason there are studies that show it helps with chronic vertigo. I don’t take it anymore, because after a few years I thought my dizziness was worse with it, but at first I think it really helped.
Physical Therapy helped me also. It was just to teach me to compensate.
A madly healthy lifestyle. If you’ve been through the doctors with no answers, and know it is nothing dangerous, you are possibly willing to consider trying about anything. Try eating vegan, sleeping at least eight hours a night, napping during the day if you can manage it, some type of exercise (I swear I think running – slow, maybe even on a treadmill, helps somehow), and avoid all negativity in your life. The reason I say avoid negativity is because you need all of your strength to fight your vertigo until you can get it under control enough to cope.
I’m no expert, I’m just another dizzy person, so I hope you have seen your doctor, and ENT (Ear Nose and Throat doctor), a neurologist, gotten an MRI, possibly a vascular specialist, even TMJ can supposedly cause it (I do have TMJ – it’s a jaw joint problem).
I hope to hear back from you. If you want to talk to me more, please feel free to comment here or contact me via my blog (www.TheGlitterGlobe.com) or send a message via TheGlitterGlobe@gmail.com and put DIZZY in the subject line.
I’m praying for you, Jim, hope you’ll be well, and I promise there is a beautiful life waiting for you. Hang on. It will get better.
Thank you for the insight. I’ve been through so far 5 doctors and now being brought to a neurologist. all i can do is hope they see something large or small, the doctors think its all in my head because nothing has shown up on an MRI or other expensive tests. Now i live my day question if what i feel is real or if im just imagining it. Its only when i watch a show or a movie or anything moving i feel everything is even worse then before. my wife has to hold me while we kiss or stand thinking im going to fall.
For what it is worth, Jim, I believe you. I have the same trouble with television/movies. I haven’t watched TV since 2008. Do you ever have migraines? There are migraines that do this. Ever spin a lot?