Living My Life With Complex Migraines

Living with Complex Migraines

Not many people know this, but I have suffered from migraines for most of my adult life. I try not to let it hold me back, but there have been plenty of times that it has.

Years ago (probably twelve years ago) the frequency of my migraines got so bad that I would get them almost every day around 1 or 2 o’clock. By the time I was on my commute home, I couldn’t handle any amount of light or sound, the pain was unbearable. One evening I got home and walked in and my oldest son handed me a towel as I walked in the door. I looked at him confused and he said, “It’s so you can go lay down Daddy, and put it over your eyes.”

My children had become accustomed to me having migraines daily and that was when it really hit me, I badly needed to get help for this.

It was about this time that I began to have problems swallowing. Not constant problems, just intermittent. Food would start going down and it would just stop halfway down my esophagus. It didn’t matter how much I chewed the food, it would still get stuck. Washing down water turned out to be a nightmare as it only blocked up behind the food and spilled into my trachea. I literally had several episodes where I was drowning standing still.

I saw doctor after doctor, neurologist after neurologist, medication after medication. I had MRIs, swallow studies, upper GIs, you name it, I had it. Nothing was helping with the migraines or the swallowing and I was out of options. Finally, at a routine physical with a nurse precautionary, the nurse asks me “Have you ever thought about physical therapy for your migraines?”

I must have had a pretty shocked look on my face because he smiled. “Why would I do physical therapy¬†for migraines?”

“A lot of migraines can be stress and tension induced.”

So, I got a prescription from him to get physical therapy and saw MGH Sports Therapy in Boston for six weeks.

After working with Kyle there, I found that I had extreme tension in my neck. The results of PT were staggering! Not only did I have a lot more movement in my neck, but my migraines all but disappeared. At least for a few years.

Then about six years ago I began getting ocular migraines which presented as a washed-out white blotch in the center of my visual field. I found that if I took two Advil as soon as I started to get them, it never turned into a full migraine and eventually went away in an hour or two. Scary as hell, but I could deal with it.

The swallowing issues continued and about six years ago I began to notice numbness and paralysis in my face. I had problems smiling symmetrically, had to put more effort into lifting the left side of my smile. I also began having problems holding onto things, dropping things, stumbling on stairs, forgetting things (more than normal). I was really, really worried that I was getting some kind of a bizarre disease. I saw more neurologists, had more MRIs, and finally, about two years ago, a friend at work recommended that I see a neurologist by the name of Dr. Yoon Cho at Mass General Brigham & Women’s Hospital.

I walked in with little hope that he would have any idea what was causing my problems. As I had done with the eight neurologists before him, I recounted my entire life story. Every symptom (I could remember), every medication I had taken and at the end, he sat and just looked at me. He said, “I think I know what your problem is. But I want to do more analysis before I commit to it.”

So we did a series of tests and he sat me down and told me, “I think this is all related to your migraines.”

I’ll be honest, I was just about ready to leave right then. I was so tired of people blaming problems that couldn’t be tackled. I wanted a problem I could apply a solution to. He saw the angst in my eyes and the desire to get up and go. He said, “I also think I can help.”

He explained that the nature of migraines are a depression of the nerve cells. That it causes nerve cells to basically not be able to communicate with one another. He recommended we try a very low-dose anti-depressant, so he put me on Topiramate at about a quarter of what is actually used for depression.

A week into it, I didn’t notice anything. Two weeks into it, I came into the kitchen one day and was assaulted by the smell of onions and peppers cooking for an omelet. I asked my wife what she did to make them so pungent. She smelled the cooking vegetables and said “Nothing, they smell normal to me.”

That was when it hit me, I had lost my sense of smell and apparently most of my sense of taste with my complex migraines. Over time, I regained the ability to swallow again, regained feeling in my face, and even found my balance was better. Whenever I come off of the anti-depressant, within two weeks I can feel the problems coming back. I never thought in a million years that migraines of all things could cause a problem like this.

Living with migraines has never been easy and having migraines that affect your whole life is almost unbearable. But if you continue to never give up finding the answers and having a good support structure of friends and relatives, it definitely makes the journey of life easier.

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