When HOD is the diagnosis, strange symptoms are always involved. “My head spins and my knees turn to jelly.” That is what I told my doctor about 11 ½ years ago. This was probably pretty vague, and I don’t know if anything was done at this time.

I can’t remember all the details of my HOD journey.  It’s been long, but I’m sure not as difficult as most others of you have experienced. At first, I saw a neurologist locally. He said that I should see an ENT, which I did. Everything seemed normal. I had a horrible test in a city hospital which made me feel extremely dizzy and nauseated. It was NOT fun. Apparently I had a ‘normal’ reaction to the test. I eventually saw a neurologist who diagnosed me with HOD, but she was quite cranky and I did NOT want to see her again. In my life, I need optimistic, encouraging people. I had three MRI’s throughout those first years. I went to many places to be cured of HOD!

Desperately seeking a cure

My husband was very patient as we made my rounds, and in doing so, spent much money. I went to naturopath doctors, a much respected pharmacist/naturopath, and a lovely massage therapist who seemed to know about HOD. She noticed my nystagmus with a special computer. I went to her for a few years and tried to do the plasticity exercises that she gave me. It would be difficult to forget all of the times that I opened my mouth very widely and having my family do so, that I could compare my twitching palate with their still ones. I desperately wanted the twitching thing to be normal.

But alas!  Acupuncture and even some cupping was tried. I saw a CBD doctor, and took CBD for a while (with the THC removed), I tried Chinese medicine and took many herbs and vitamins. I even went to (what I would classify as) a quack. Also, an ex-doctor friend of mine gave me some kind of electrical impulse therapy. During these years I had a few voice therapy sessions to help my weakening and changing voice. This was very embarrassing after having sung solos. I finally was given another neurologist, who had to look up HOD on his computer. He tried several medications on me, to no avail.

Accepting the strange symptoms and forging ahead

I now have no doctor overlooking my HOD. My head always feels dizzy or wonky upon turning it. It is a symptom that I have to comfortably co-exist with. It sometimes seems that I have a level in my head. I ask the person that I am with, “Is this ground (or floor) really off kilter, or is it just me?” A chiropractor recently told me that I have a bit of a tremor in my neck. My balance is not good, but I try to be extremely careful that I don’t fall.

Sometimes my balance is nonexistent when I am crouching, thus sending me falling into a very awkward position with legs in the air. I mostly feel wonky and sometimes slightly nauseated. My voice has lowered, sometimes people have trouble hearing what I am saying. I think that I can sing a wee bit better now. I react very strongly to shocks i.e. when someone walks un-expectantly into a room. Walking in the dark is very difficult. Oh yes…headaches!

Maintaining a balance between reality and desperation

I exercise at a gym twice a week. When I go, I do weight training to improve my core and leg strength, and to improve my balance. I figure, keeping my body strong is one way to keep from falling, and dealing with my poor balance issues. The decision has been made by me to live to my potential, and not die before I am dead. I know that someday, I will not have HOD, and I will be able to live freely in Heaven!

Your Turn!

Does Marlene’s journey resonate with you? Tell us how in the comments. Or even better, share your story with us for publication! Send it to ContactUs@HODAssoc.org If you like what you are reading, please be sure to give us a ‘like’…it helps other people to find us.