Series: Migraine’s Vicious Circle – article 3 – Living with it

In the first two parts of this series, I discussed the treatment challenges for living with migraines. What do you do when treatment after treatment fails? You go on to a stronger more potent treatment. Unfortunately, there is only so far you can go until medicine catches up with the condition. For most, migraines decrease with age, but in my case, they keep getting worse.

Currently, I am on a Botox regimen along with Imitrex, Excedrin, ibuprofen and a dopamine agonist. I’ve also recently had two temporary cervical nerve blocks and a permanent one. Even these sometimes extreme measures have started to lose their effectiveness, so I move on. I am now in the process of circling back around to try other things. Botox and radiofrequency ablation are some of the most extreme measures one can take. Now that those have stopped working, it’s time to go back and try to eliminate more triggers and re-examine other conditions.

Determine triggers

I learned my triggers a LOOONG time ago:

  • Computer monitors + fluorescent lighting – If you are on a computer all day, please contact me. Even if you’re not a migraine sufferer, I am sure I can give you some tips/tricks to avoid some headaches
  • Bright sunlight – For me, this is not consistent. If I start my day outside at 8am and work all day, the sunlight doesn’t affect me. However, if I come home from work at 5 and start, I’m almost certain to have a migraine. It’s all about my body adapting slowly to the daylight
  • Heat changes – See above. The same goes for temperature changes–mainly from cool/cold (a/c) to warm/hot outside air.
  • Lack of sleep – trying to change this one, but nowhere close yet. 🙂
  • Improper sleeping position – (neck)
  • Aspartame – EVERYONE should stay away from this crap!
  • White Potatoes – Yeah, I don’t understand it either!
  • Artificial sweeteners besides Aspartame

For the most part, I have learned to avoid or eliminate most of these triggers, but the migraines remain–and get worse. I am currently looking at any and all other causes. There are many things that I’ve left off this list of course and 20 years into this journey, I pretty much know them all.

Experiment with treatment

My journey is no longer so much about finding a “cure” but finding something that will allow me to live a somewhat normal life. My migraines are so intense and frequent, that it’s now more about getting rid of the pain so that I can start to get back to living. I never wanted to be the “headache guy”, but that’s who I’ve become. Many people will advocate finding a long-term cure, but for me, I just want the pain to stop just for awhile so I can clear my head. Thankfully, my most recent CT and MRI scans of my brain have shown no lesions yet, but I know they are adversely affecting my brain.

My memory is fuzzy, concentration is sometimes very difficult and maybe more importantly–my personality has changed. I’m no longer as goofy, witty or even happy-go-lucky as I once was. I am often frustrated because I can’t remember something or because I can’t hold concentration. Some of these things can be attributed to aging, but most for me are directly related to the migraines.

Coping

My release has become manual labor of sorts. I find a lot of enjoyment in woodworking, mowing, landscaping etc. When I’m out doing those things, I don’t have to concentrate too intently and physical work takes my mind off of…well…my mind. Now that I’ve decided to go back and revisit certain aspects of this journey, I am open to any and all suggestions. I know there are things that other people have tried that can/could work for me that maybe I’ve not tried or forgotten about.

This week I started the process to get a Cefaly device to help me deal with the pain while we examine causes and other treatment.

A friend recently compared migraine to “smoke alarms” – “… the migraine is a signal that something even more serious is going on. . . and the fire inspector needs to find out what is causing the fires, not just unplug the electricity from the smoke alarm.”

Not thinking about it in those terms, his comment made me think. There clearly has to be SOMETHING causing these migraines. Your brain doesn’t just hurt to hurt. The doctors may not be able to find it, but there is something there and left unchecked for too long can cause long-term problems. So, for now I’ve decided to “unplug the electricity from the smoke alarm” so I work more clearly with the fire inspector.

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