JOIN BOSSY'S OLD SCHOOL BLOG ROLL!

i am bossy

Ten-Word Tuesday — It’s Not So Much A Migraine As A Mygraine

Ever have symptoms that when taken together aren’t attributed to any known medical condition so you traipse from specialist to specialister and at the end of a decade you end up diagnosed with an unpronounceable name that has no cure anyway and probably isn’t even what you have?

That’s a coincidence, because that exact thing happened to Bossy.

It all began in 1994 when Bossy and her husband and five-year old son went on a trip to Florida.

bossy-gracie

You are looking at a photo of Bossy during this exact time, taken in her backyard with her Golden Retriever puppy Gracie. You see, Bossy has a history of exorcising her list of favorite girls’ names through her dogs. If it wasn’t for Bossy’s many domestic pets, she probably would have ten or eleven kids. Times three.

And speaking of Bossy in 1994, it was during this time Bossy and her son looked nearly identical:

georgia-getz-bossy-son

And Bossy knows what you’re thinking. You’re thinking this doesn’t have anything to do with unusual medical conditions – but you would be entirely correct!

Anyway. So Bossy and her son and her husband went to Florida, and it was there they rented boats for an hour so they could tool around on the nearby lake. And Bossy had such a fun time there on the water, with the wind in her hair and her hair in her hair.

Then, later that night while enjoying some dinner, Bossy realized she was still feeling as though she were on the boat.

Actually, it was a more subtle sensation than the rocking of a boat. It was as if Bossy were sitting on a gently rolling dock. Or living on a well-moored houseboat. Or walking on a mattress. Or the many other examples Bossy came up with those first few days because hi have you met Bossy?

moving-restaurant

This balance disturbance continued throughout Bossy’s entire Florida vacation. But Bossy managed to stay in good spirits, where spirits equals the many spirits Bossy drank, figuring if she was going to be weaving around Disney World, she may as well be as drunk as she looked.

And then Bossy flew home. And boy were her arms tired! Of typing this health crisis post!

silly-bossy

Anyway. Bossy flew home. And as soon as she landed she realized the dizzy sensation was gone! Days later an Ear Nose and Throat specialist attributed this shift to the change in altitude pressure in Bossy’s ears, causing her body to reset itself.

doctor-1

Fast forward a few years, and Bossy and her husband and her son and her two-year-old daughter were once again on their way to Florida.

florida-map

bossy-dad-daughter

This time the Bossy family took the Auto Train:

children-auto-train

A decade of sleepless hours later, the train arrived at its destination, and Bossy disembarked with the rest of the passengers only to realize she felt as though she were still on the Auto Train.

And thus it all began again:

dizziness

This time the three-hour-tour sensation lasted nearly a month — every day just like the first. It was at this time Bossy saw a Neurologist who gave Bossy a diagnosis so ridiculous, the Merck Manual doesn’t even bother with an English translation:

mal-de-debarquement

doctor-2

Mal de debarquement means a persistent sense of motion long after the motion has ceased. Most often this is associated with time spent on the water. Which was why it was so medically atypical when Bossy experienced her next episode with Mal de debarquement, which followed forty minutes on a rowing machine on that very famous lake known as Bossy’s Basement.

rowing-machine-sea

It was at this time Bossy ended up at Johns Hopkins:

johns-hopkins

During her appointment at Johns Hopkins, Bossy learned of the rarity of her condition, and was offered a spot in a clinical trial which included a large dose of what Bossy later learned was a seizure medication. Bossy declined.

It was also at Johns Hopkins that Bossy was first told that her diagnosis is actually situated within the painless migraine family.

migraine-family

Still, for a month Bossy’s symptoms wouldn’t alleviate. Not to mention the confusion it caused when Bossy frequently described her symptoms as feeling like she was still on the boat she was never on.

This is when Bossy went to an Osteopath specializing in Craniosacral therapy.

According to Bossy’s exhaustive research, where exhaustive research equals Wikipedia, the Craniosacral practitioner gently works with the spine and the skull and its cranial sutures, diaphragms, and fascia, easing nerve passages and optimizing the movement of cerebrospinal fluid through the spinal cord, but Bossy couldn’t stop being ticklish the entire time.

But here’s one thing Bossy did gain from her visit to the Osteopath, her fifth medical appointment. He looked at Bossy across the desk and he asked, “What do you think it is?”

Not that Bossy had a definitive answer outside of thinking her condition was related to the sustained wavering of her vestibular hair cells stimulated by fluid’s movement in the semicircular canals within the ear — except to think the condition also had to be activated by a perfect storm of hormones and a spinal positioning component and overall fatigue.

In other words, Bossy occasionally has what she refers to as a Mygraine.

Still, Bossy thinks there’s power in asking the patient that direct question, as sometimes we know what we have even though we’re afraid to confirm it, or it’s difficult to confirm.

In whatever case, Bossy can sum up her experience with her thankfully fleeting medical condition as follows: Bossy thought she had another episode, but awoke better today.

Which is what today’s Ten-Word Challenge is all about. In exactly ten words, can you tell Bossy about weird medical symptoms you’ve had trouble diagnosing and treating? And feel free to offer responsible feedback to other commenters. Let’s get this layman’s diagnosis party started!

And be sure to check back later today for the most interesting symptoms on the web.

Reader Interactions

Comments

  8. Since early menopause at 42 have similar symptoms to Bossy. And depression. pills don’t work. nothing works.

    Reply

  10. Shin/top foot pain occurs in ski boots – excruciating

    (In March it hit me so hard that I took off boot (on flat area) AND ski while attachd and then lost both. Sending 12 years old to look for both. Which embarrassment worse? Kids looking for ski/boot, me riding snowmobile w/neither?)

    Reply

  32. Million symptoms, MS diagnosis. Million more, Formaldehyde allergy. Both managable! (For now)

    Once you have a correct diagnosis, makes all the difference!

    Reply

  41. I had no idea so many people had the same electricity issue! My sister also can’t tolerate alloy silverware; she says it gives the same stinging sensation as foil on a tooth filling!

    Reply

  50. Colette – I had dry skin and discoloration on my torso also and it turned out to be GLUTEN. Bah. Doctors were no help.

    New problem: Internet induced hypochondria and whining.

    Reply

  55. True story: I believed that double-basses (in an orchestra) were inaudible, and provided only a magical kind of stabilising musical force.

    Age 25: diagnosed with moderate congenital hearing loss in both ears. I’d been deaf my whole life! Hearing aids demonstrated that not only are double-basses audible, but also sliding doors, car engines, birds in trees etc etc ad infinitum…

    Reply

  67. #30, That’a cuz the tear ducts are connected to the sinuses. There is a little valve that should not let this happen but your seems to be defunct. Mine is too. Air bubbles come out of both of my tear ducts if I am underwater in the deep end of the pool.

    Reply

  70. Blowing nose out through eyeball area, sounds like somebody was partying with Stevie Nicks, but that is just a sick joke.

    First trip to Florida my college friend’s mother warned us that the strength of the tides would screw up our menstrual cycles. They lived in Fort Walton Beach area. Okeedokee. Guess we didn’t stay long enough to test that theory.

    Reply

  73. I’ve had this weird problem with my head for about 10 years. The doctors ask, are you dizzy or light-headed? Right after they ask if that rainbow is black or white. I don’t know; I only know my head doesn’t feel right. All the time. And, yes, I do have a problem with motion that makes me dizzy and agravates the head thing, although the head thing bothers me without motion. A friend of mine used to work in a place that studied the vestibular system, and he says that sounds like my problem. Don’t know. Haven’t had it checked out. I have Kaiser and live 3,000 miles away from Johns Hopkins. But maybe Bossy could have her vestibular system checked out. There’s my 10 words.

    Reply

  81. I had migraines as a teenager – horribly debilitating ones. Then in my junior year in college, I had one incredibly bad one, with nausea and everything. And then they completely went away.

    Some twenty years later while I worked at a stressful job, I experienced a kind of weird tunnel-vision thing that someone told me was like a migraine, but it only happened the one time.

    Haven’t had a migraine since.

    These days, my health issues are digestive in nature. I had a colectomy in late May, after a surprise diagnosis in April. It was scarey at the time, but so far everything has been OK since surgery. But I can tell that my future health issues are going to be all about POOP!

    Reply

  83. Ear rocks equal Benign Paroxsymal Positional Vertigo. Isn’t it fun? Once I knew it wasn’t a stroke It is just a pain.

    Reply

  85. I agree with #59 look into Meneires disease. I for years had probelms with being dizzy and ringing and ears (tinnitus) and saw any doctors who kept treating it as a middle ear infection and giving me antibiotics. became allergic to penicillan 🙂 Finally changed insurance and went to a different ENT and he immediately fiagnosed me with menieres. I had three of four symptoms: tinnitus, vertigo, slight hearing loss. It was so bad at that point I was missing work because I literally couldn’t stand up and walk without looking like a drunk! Can’t remember but know I was prescribed diuretic pill and something else to reduce the inner ear fluid. Haven’t had a recurrence since and it has been almost twenty years. Meneries has no cure and can be treated as symptoms occur. Good luck!

    Reply

  89. Dizzy, crazy spinning spells. Truly debilitating. Stop taking vitamin B – went away. Started taking vitamin B again. Crazy dizziness again. Stopped taking vitamin B went away again. Something about vitamin b I think.

    Reply

  92. I spent years trying to figure out what I had – may specialist inlcuding a neurologist who wanted me to take seisure meds, a cardiologist that thought my blood didn’t make it back to my heart in time etc… guess what it was, MDDS, Mal de Debarquement Syndrome. I cried when I found the diagnosis because finally it was something that really fit. If it helps, it was on the show Mystery Diagnosis – because it’s really hard to define. The one thing i can tell you – if you feel better when you travel in a car and things like Xanax or Valium “slow things down or stop the dizzy” enough then sister you’re part of the club! Good luck to you and k.i.t. if this is what you have – we need support out there. kelstc@aol.com

    Reply

  93. Ocular migraine, no pain just “why is half of that object missing”. Goes away in 20 mins, but first time it happened, thought I was having a stroke – yikes.

    Reply

  94. Um, yeah… I was diagnosed with a couple of “possible reasons” for my migraines. Later, hubby left his company. We declined COBRA thinking we’d get privatized health insurance. The whole family was declined insurance because of my “issues”. I now hate going to the doctor.

    Reply

  95. #53 Janell: This happens to me too, off and on. Started happening when I was in fifth grade when I rode a bike in the sun: arms full of itchy hives. In my 20s, hiking to Cape Point in South Africa: arms full of itchy hives. All through 20s and 30s, about 2x a summer, I get hives after being outside. In my early 30s, in Disney World with family: arms and back of legs full of itchy hives. Sunscreen doesn’t help. Happens early in the season, then it just gets kind of tan and hard and no more problems. Anybody have any experience with this?

    Reply

  97. occasional spells since teens. got bad around 45 so dizzy i could not function. dx as neurocardigenic syncope, finally took 2 years and lots of tests to get that. was so much worse at that time due to peri-menopause. last year or 2 back to occasional. 50 now. best thing i found that works? mucinex? makes no sense but it works.for me and others.

    Reply

  103. Ocular migraines. Scary the first time, but the dr. said no problem except for the nuisance of it—fun reading a menu when the migraine hits. Goes away in 20 minutes or so after travelling from one eye to the other. Weird.

    Reply

  104. #99 on August 14th, 2011 at 5:51 pm
    Kristiane said:
    Mind numbing itching on legs with walking or running outside.

    I know this is two years later but just in case you are still experiencing this try taking a Benadryl before you walk or run. It is some kind of allergic reaction. My sister gets it too.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *