I Thought I Was Dying Slowly

So apparently subcategories of migraine actually exist. I had no clue about any of them. My issue, in particular, had zero pain related to my type of migraine which is what basically threw us off the correct diagnosis for so long. Since the symptoms I experienced had no headaches in conjunction with them, no one, including myself, thought to take a closer look at the possibility of my illness being a migraine or related to migraines.

The episodes were lasting up to four days at a time, including nights. I saw no relief for over the seventeen years I suffered with an unknown or not properly diagnosed medical problem. None of the hundreds of doctors could seem to figure out my complaints about my sluggishness that was accompanied by dizziness, vertigo, nausea, and a strange buzzing sensation inside my head.

My symptom cycle

Doctors often just guessed or assumed it to be allergies. However, over time the symptoms I experienced grew worse and worse often lasting for days per episode only getting one or two days of relief then the episode would come right back starting the cycle all over again.

Finally, it got to the point where I began to feel unable to function or even stand up for days at a time. My symptoms were bouts of vertigo sensations, nausea, light sensitivity, plus a weird feeling in my head that I was unable to accurately describe to my doctors but it made me lethargic. On top of a vibration sensation or buzzing that appeared to be behind both my eyes, there was something weird happening inside my ears a light pain that sometimes and even to this day creates a leaking wet sensation.

Finally, a diagnosis

Most doctors just dismissed my issues and gave me a quick reply of allergy without even really doing any actual testing to figure out the root cause of my dilemma. I didn't have any headache pain so they never mentioned migraine nor even suspected it being migraine-related. But it was. Seventeen years of suffering without anyone taking me seriously I might add. The more time that passed and the more visits to the ER I made seemed to take my complaints less seriously over time.
It was like they thought I was lying or something.

I finally found a doctor who was a resident at John Hopkins in the Washington, DC area who also once every two weeks worked at the VA Medical Center in Washington, DC. He actually listened carefully to my complaints and took the time to carefully do the work that led to him figuring out I had a rare type of migraine. It only affects about 1% of the population.

Understanding vestibular migraine

It was finally diagnosed properly as a vestibular migraine. It affects the inner ear and also your balance. I knew he was onto to something when he asked me if I could hear my eyeballs moving inside of my head. I yelled YES!!! THAT'S IT!

It was a symptom I couldn't quite explain that persisted in conjunction with all the other symptoms simultaneously. Which as you could imagine was debilitating for me. It started mild, only a few seconds or moments in the very beginning. Nothing I thought to be alarmed about since it only occurred momentarily at 1st. But the time periods of its onset started increasing gradually over the years of misdiagnosis.

Hope for others

Eventually, I lost my ability to function normally in daily life. I didn't understand what was happening to me and it led to depression because I had always been a very outgoing socially engaged person. I was a fairly young woman in my mid-to-late 30's when I began this walk into the unknown. This illness took so much of myself away from me.

So if anyone is experiencing similar problems as I described here there is a possibility you are experiencing VESTIBULAR MIGRAINE SYMPTOMS as well. Up until my doctor, Dr. Hoa figured it out I had lost all hope of normal existence. I literally felt like I was slowly dying before that.

My treatment plan

He prescribed Nortriptyline as a means to combat the vestibular migraine symptoms. It is normally prescribed as an anti-depression medication but in my case, its properties were just right to combat many of the symptoms I was experiencing nearly every day. It isn't a cure but it does keep it under reasonable control with only occasional episodes reoccurring for less of a duration. Only one to two days now when flare-ups reoccur. I hope this helps someone figure out their next steps. Well wishes to all those suffering now.

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