Susan Hightower

My headaches were off and on for most of my life. Then at the top in my pediatric nurse practitioner career, I became so dizzy and nauseated I could no longer work. I just had snoring surgery.  I was having recurrent sinus infections. The ENT put me on scopolamine patches 24/7 to keep me upright at work. Finally, the patches, multiple antibiotics, and more sinus surgery made me sicker.

The neurologist said I had a central nervous system problem. The physical therapist he sent me to for my balance problems recognized what I had as migraine. I have had ten years of disability with at least 25 headache days a month. After trying about every medication in the book, and after at least 20 doctors, including headache specialists, I finally found a neurologist who knows about vestibular migraines, and he knew how to treat them.

Phenergan suppositories and a long acting triptan with ibuprofen started to make a difference. In addition, I have had four Botox treatments. The migraines cause pain all over my body. The symptoms I have in the four stages of migraine are all over the map.

During the last three years, now at 61 years of age, I found out I have an alphabet soup of medical conditions. POTS, EDS, and MCAS. All of the symptoms run together. Menopause did not help.

In the beginning, one neurologist said I had 10 years of migraines ahead of me because of peri-menopause. I lost my RN license and nurse practitioner license because I can no longer use a computer without getting vertigo. My iPhone is the only screen I can tolerate. Sometimes even that makes me sick. My vertigo and dizziness waxes and wanes, but the migraines persist.

The stigma I’ve encountered is disheartening. I can’t count the number of judgmental statements I’ve heard from family, friends, doctors, nurses, strangers, etc. The last comment was from a man who said, “I bet you were out of shape and eating junk when you got sick. Just push through it. Get in better shape.”I told him I was in the best shape of my life, and I was eating a very healthy diet when I became ill.” The number of diets I’ve tried and the food I’ve avoided set up an eating disorder I’m working through. I have gastroparesis now and almost died twice from choking. It seems as if food sits in my stomach forever.

Most folks tell me if I only thought positively, I wouldn’t be sick. Try this. Do that. Arrrgh! My mother has the same things. She is 84 and dizzy most of the time. My daughter has the same. It’s truly tragic sometimes. But the spiritual lessons I’ve learned are invaluable. My dogs have saved me from suicide. And my daughter. I could never do that to her. But the down moods caused by migraine can be extreme.

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