Jody Connell

Diagnosis: Benign Paroxysmal Positional Vertigo (BPPV)

My story. Not sure how to sum up the last 3 ½ years. I remember in one support group a speaker asking “How many here remember the date of their first attack?” For me it was May 16th, 2010. Before I can really tell my story, I have to begin with my mom. I lost her in December, 2008. She went through months of not knowing what was wrong to passing away six months later due to an autoimmune disease, Scleroderma. In those six months I learned more about health care, among other things, than most do in a lifetime. I was able to take that with me during my journey and it helped me immensely.

I woke up early Sunday morning feeling extremely nauseous. I realized that I didn’t have a simple virus because I couldn’t sit up or even raise my head without the room spinning 1000 miles per hour. This lasted all day, but started to get better as the day wore on. I was able to sleep that night and woke up the next day as if it had never happened. I went to my ENT – who I had been seeing for mild symptoms since September, 2009 – who told me that this was an isolated incident, and that it shouldn’t happen again.

Needless to say, it did – in various forms. I returned to my ENT, who ordered an MRI and an ENG. The MRI showed white matter, so my ENT referred me to a neurologist to figure out if I had MS.

My meeting with the neurologist was one of the worst experiences of my life. As I left his office in tears, I remembered a similar experience I had when caring for mom. If I did not like a doctor, I found another, usually through a friend. So I decided to make an appointment with a new doctor. Mind you, as patients know, appointments do not happen the next day. You muddle through weeks of not knowing what is wrong, when an attack will happen, or WHY.

My new neurologist recommended a spinal tap to rule out MS. While I had a history of migraines, which could be the cause of the white matter seen in the MRI, it was better to be safe. The spinal tap is still only about 95% of the process to rule out MS.

Once the results (they were negative!) were back and more tests were given I was now into August of 2010. I still had no answers but most definitely was happy that it was NOT MS. The doctor wanted me to go the Emory Clinic to see a vestibular specialist. While I was happy to have a direction, Emory was simply too far away to drive in my condition.

Finally I found the Atlanta Ear Clinic, which is closer to my house. I can vividly remember the day when Dr. Steenerson said I needed occupational therapy. There happened to be a cancellation for the current time – did I want it? He didn’t even ask me – just simply said yes she does, she has been suffering for too long. I started to tear up, as I did again in the therapy room when Dr. Cronin said she could help me.

Of course, I had to be a special case. Things did not go so well over the months after I moved into Dr Cronin’s care. I have issues in both ears – only 20% of patients have this. In addition, I have BPPV, Hypo-vestibular issues, and the debated silent migraine. I have been a horrible patient as I do not consistently do the exercises assigned at home and don’t like taking 8 pills a day. I have recently even tried Botox injections, which was not fun, but NOTHING compared to the spinal tap and the pain that followed after. I am still pending the results of the Botox treatment.

I should be making more appointments with Dr Cronin, but I remember when I really needed help and a doctors’ attention and I would hate it if I consumed her time when I know I go home and do not follow instructions. For me, it is the combination of the meds and exercises that makes a difference, plus keeping stress under control.

I know every patient has a unique story. In my case, my illness does not have an underlying cause – I did not hit my head, fall, get sick or have any family history that is known.

I cannot speak highly enough of my care at the Atlanta Ear Clinic. Their patience and understanding are amazing. I hope that other patients do not have to wait as long as I did for an answer. Listen to your body; find doctors that others have had good experiences with. Even if you don’t have the same results I had, it is a starting point.

I surprised myself for going beyond what I thought was possible and leading the first Atlanta Balance Awareness Day. I know there are so many patients in worse situations, and I smile when I can simply go to my favorite Starbucks and come home to my fiancé and my cat. The Vestibular Disorders Association’s Facebook page has two quotes that really stuck with me: “Being happy doesn’t mean that everything is perfect. It means that you’ve decided to look beyond the imperfections.” Unknown. And my favorite is: “We must be willing to let go of the life we planned so as to have the life that is waiting for us.” Joseph Campbell

Life has been on hold for me the past few years. The support that I have is amazing, personally and professionally. That is a blessing I know many do not have. Friends get used to me not promising to make plans. It is hard when you want to be a good friend. I do not have family in Atlanta and as my mom always said, friends are the family you choose and the last few years have proven that in so many ways.

During the time I was going through my struggle to find a diagnosis, time my dad was diagnosed with Multiple Myeloma. At 73 (when he was first diagnosed) and now 75, I have watched my daddy go through miracle after miracle. Both my parents have shown me examples of strength that I simply do not have words for.

It has not been a boring five years to say the least, but every day I can get up with no spins and come home having just bounced off a couple of walls, then it was an awesome day.