What just happened?

Hi everyone. Another male migraine sufferer.

My story. For several years, not sure how many, never really paid too much attention to it, I have gotten the ocular type aura. Lightning flashes, fireflies, swirls, etc, in my eyes, lasting a couple mins and then they’d go away. I got an occasional one where the center of my vision would be gone as it went across both my eyes, either moving left or right. Scary, but never lasting long and far and few between. I also had that occasional “bad” headache, last one I could remember that knocked me down, somewhere in my 20s.

About 4-5 months ago, I started getting the aura where I was losing the center of my vision lasting anywhere from 5-10 mins as it crossed from one eye to the other and the occasional pounding in my temple lasting a few minutes. This was maybe once to twice a week. Then it was two to three times a week and the headaches were getting stronger and lasting longer.
Just over three months ago I got the whole shebang, my tinnitus went off the charts, bad aura, vision got bad, lost the centers, sparkles, fireflies, numbness in my left side and the most horrific headache I have ever had. Then I remembered the headache I had in my 20s. Funny how pain brings memories back. Everything started to return to normal, except the headache. I then felt like I had went 10 rounds in a boxing match. My body hurt all over, my head was pounding, I was nauseous and dizzy.

What in the heck just happened?

The headache has not gone away in a little over three months now. I have a constant pain with terrible days, steady pain days, never a day off so far. Days where the smells, light, sounds set the headaches off again. I have been to neurolgists, ENTs, primary care doctors, and finally and Opthamolgist that specializes in migraines. The neurlogist put me on topimax, 100mg a day. I am a zombie, but it makes me able to barely tolerate the migraines and work. I’m a contractor, no sick days, so grin and bare it. The topimax gives me it’s own set of problems, lost 20+ pounds in the last three weeks, no appetite, all my joints are killing me, no sleep, issues with control of my left shoulder. The opthamologist is getting me weaned off the topimax and trying to help. Part of the testing with the opthamologist was dilating my eyes. That set in motion one of the worst migraine episodes I have had. All I could do was curl up with a blanket in the closet.

Some background, 60 years old, and up until this started, avid runner and hiker, play volleyball in a competitive league twice a week, softball all spring and summer, RV’er, avid reader and IT/system engineer. Have run close to 30 marathons, couple of 50 milers, numerous shorter distance races. Planned on hiking the Appalachian Trail before I turned 65. My day usually started at 5am, cup of coffee, lifting weights, 3 miles on the treadmill, shower, commute to work, walk at lunch, and back home. Hike on the weekend or camp. Was healthy, no health issues, no medications. Watched what I ate, kept my weight in check, non-smoker and very light drinker, enjoyed a good craft beer or two a week or a good sip of Tennessee whiskey.

I have always felt so bad for my co-workers and friends with migraines, knew what a good headache could do to you, but I have a whole new appreciation for what they were going through now.

Thank you for sharing your stories, your remedies, what works, doesn’t work and all. If I get any relief, help or remedies, I will absolutely share. And thank you for reading.

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Comments

View Comments (3)
  • sysad author
    2 years ago

    Thank you azurelle. I have had an MRI, chest x-ray, extensive blood work, ENT work ups and everything so far has come back clean. I am going back the middle of next month for another MRI, this time with contrast, not looking forward to it. I don’t take to MRI’s well. Didn’t know I was claustrophobic until an MRI about 7-8 years ago. I have not been around anything alcoholic for months now, along with almost all food. Can’t tolerate a lot of anything in my system. Almost count out food allergies, alcohol, etc. Friend suggested himalayan salt, lemon and water, what they heck, stopping tonite for the salt, give it a try, nothing to lose. Doctor is cutting me down to 20mg a day of topamax and adding 20mg of palermo (nortriptyline) a day. Not sure I want any more medication in my system. Thanks for the comments and worries.

  • azurelle
    2 years ago

    I’m wondering about the sudden change. Not to be a scary alarmist but have you have a MRI since this change happened? That might be something to discuss with your doctor. I’ve always been advised that when there is a sudden, drastic, or prolonged change in your basic migraine situation you should consider a MRI just to rule out the possibility of a new issue having cropped up.

    Check out the causes and triggers section. As you’ve gotten older your general tolerance may have changed. Common triggers are coffee, beer, and whiskey. It might be that you can’t tolerate them any longer. I’ve had migraines for 30 years, the first 10 years I could still enjoy a beer now and again but that gradually changed and I had to give it up completely. Very sad but very worth it in the end!

  • DonnaFA moderator
    2 years ago

    Hi sysad, it’s awesome to hear from one of our male community members! Thanks for sharing your thoughts and we look forward to hearing more from you! -All Best, Donna (Migraine.com team)

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