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Does This Ever End?

Well, here we go.

I am sufficiently anonymous now, so I’ll start venting.

I’m 41 years old, have a wonderful family with three young kids and a saint of a wife. I have a good, well paying job that is challenging (engineering). I’m intelligent, very funny, and love to drink beer and socialize (when I feel up to it).

HOWEVER:

When I was in 5th grade, I was having the time of my life. Best teacher ever, good friendships, everything going on was good. I remember sitting down and thinking, “It’s funny that you can feel so good, yet your head still hurts.”


Starting back in high school, I would get flashing lights in my vision followed by severe pain, and sometimes episodes where I was a bit confused (couldn’t think of numbers, seemed like I was floating, etc). I was taken to a doctor where they performed some tests, and determined that I was having migraines, and was depressed.

In high school and even college I was able to get on with my life with occasional bad headache days, but not too big of a deal. I had some medicine to take to abort them, so I was good.

Then I graduated from college. After a few months of working, I realized that my headaches were getting in the way. Why now? In school, you are limited in what you do by the assignments that are given to you. In real life, the sky is the limit: if you want to work harder, learn more, challenge yourself, you can (assuming the right career path). Well, my engineering job happens mainly in my brain, and I realized that I was being held back by pain.

The first doctor I saw said, “There’s nothing we can do for your migraines.”

I hunted around until I found who is supposed to be one of the best in this region. She has helped me try a lot of different medications, but to no resolution.

She sent me to MHNI for three weeks. I got too impatient. I felt a little better so asked to be discharged. Ugh. I should have stayed longer.

I tried everything you can think of, including occiptal nerve stims (totally regret due to the scars).

I have quite the gut going on and the jitters thanks to Depakote. Love that stuff. Well, love the benefits, hate side effects.

Then I found my current doctor who realized that my temporalis muscles are VERY large – the largest he’s seen. (People have postulated that it is because I talk to much, but it’s not; it’s because the words I say carry such great weight. I’m so deep!) He tried nerve blocks, and I had the best experience I’ve ever had. While injecting me, he found that the muscles are almost two inches thick!!! In comes Botox (actually Xeomin, but I’ll keep calling Botox to keep things simple) with the goal of getting the muscles to atrophy. He gives me more Botox in the temples than he has ever even attempted. He says he’s surprised that I can still eat. (My muscles are huge! Be impressed, women!) Yes, I do have a mouthguard that is meant to keep me from clenching.

Unfortunately nothing has been able to get rid of the constant pain I feel. The confused episodes are almost gone, but I still have multiple days in a row where things go to hell. Depending on the year, aura is gone, or aura happens daily. (Right now it’s daily.)

The latest Botox didn’t take for some reason. He said it looked like I didn’t have as much atrophy, and I did notice that crunchy foods weren’t making my jaw tired. I have had many bad days, and I’m so tired of it. Motivation at work is severely lacking. Ugh.

I ordered a Cefaly (I call it the Siphilis or Wonder Woman’s tiara) from Canada. Let’s see if that does any good.

I believe my headaches are not nearly as bad as those that others get. If I rate my pain on a real scale, I would say that a cold headache (ice cream) is much higher than even my worst migraines. But it’s not just the pain, there are multiple factors that make me decide how my migraine is:
1. Pain
2. Mood or current ability to cope with pain
3. Cognitive: how smart am I?
4. Fatigue

So, I don’t think my migraines are as painful as many of you out there, but if you put all those factors together for as many days straight as I have had, it’s pretty darn awful.

Regards,

Migraine Bob

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Chere
    5 years ago

    Has anyone read & tried the book “Heal Your Headache: the 1-2-3 Program” by David Buchholz MD?

    I have had migraines for 30years. At first they were infrequent. Gradually increasing in pain and frequency over time. I’d realize a new food trigger and take it out of my life. Red wine, then all wine, then all liquor. Chocolate. MSG. Aged cheeses. Weather. Strong smells (cigarette, perfume, chemical cleaners, etc.) Soy – including soybean oil used in so many US restaurants. (I call ahead to see what vegetable oil a restaurant uses: olive, canola or soy. I keep searching for restaurants where the oil isn’t an issue.)

    Even with this vigilance, I’m getting 10-12 headaches a month. Yes, they stop with Imitrex taken asap, but I worry what I’m doing to my kidneys. And there has to be a better solution than pills, right?

    So now I”m going to try Buchholz’s 4month diet elimination program via the book. At this point I’ll try anything.

  • sarals
    5 years ago

    Have you gotten the Cefaly yet? Or has anyone else on here tried it? I had my second nerve blocks last summer and i’m still recovering from the pain of them. Then my DR ditched me as i missed an appointment because i had to take my son toe the E.R. Boy was I MAD. So, I’m trying to find a new Dr. anyway, I really am curious about the Cefaly thing and if it works. This is the bad time of year for me with thunderstorms and barometric pressure changes. So, i really want to find something to help instead of injecting myself in the leg which i can only do so many times anyway and don’t help always.

  • Katie M. Golden moderator
    5 years ago

    Sarals,
    I have not tried Cefaly yet, but our writer Kerrie Smyres has. She’s written two posts about it. You can check them out here:

    http://migraine.com/blog/cefaly-migraineurs-review/

    http://migraine.com/blog/cefaly-questions-answered/

  • Kathy
    5 years ago

    I have tried everything meds wise and it dont work. I did botox didnt work hopefully the next round will work…. Did cardio exercise that makes it worse. I end up in the ER about three times a month. About a month ago I thought I had stroke it was do to my migraine not a stroke talk about scared. Don’t know what to do or what to say anymore. My husband is so great and supportive because I cant work the way I am now. I have had this migraine everyday since the start of November. Want it to go away…..please…..

  • Katie M. Golden moderator
    5 years ago

    Kathy, you mentioned that exercise makes it worse. It took me a year working with a trainer to figure out HOW to exercise smart. Too much cardio got my blood pumping and my head would start throbbing. I had to take it slower and then I gradually got stronger.

    And Botox can take up to two or three rounds before you see results- so definitely try it again if you can afford to. It also doesn’t work immediately. It may take a week or two before the next round will start working.

    And if you are interested in natural remedies, you can start looking at some options here:
    http://migraine.com/migraine-treatment/natural-remedies/

    I hope you get relief soon!
    -Katie

  • art lover
    5 years ago

    So interesting that a man’s story is in many ways so different from a woman’s story. And more difficult to get a handle on in some ways (can’t believe I’m saying that!) because with our hormones often making ours super tricky to treat but yours is too. Have you tried the food /trigger connection? I’m trying the food and exercise route as in trying to identify food triggers, something I am coming to reluctantly partly because I think it will be a pain and partly because I didn’t think it was true but now I’m curious, and I do believe exercise can help anything. Don’t give up!

  • Syeager
    5 years ago

    It is always a comfort to hear another story similar to your own. Both Migraine Bob’s and Marsha’s, are similar to mine. I too have migraines, but I know that pain is not as bad as many other suffer. It is the cognitive, mental, fatigue and aura symptoms that get the best of me. Like Marsha, I have found some relief in vigorous cardio activity and super hydrating. My neurologist who has migraines does the same for his migraines. I know that not everything works for everyone, but maybe it will help others. A good run also helps to clear my head, and keeps me from focusing (aka obsessing) on migraines.

    Here is to hoping we have more high functioning cognitive days!

  • Katie M. Golden moderator
    5 years ago

    Migraine Bob,
    Don’t ever feel like your pain isn’t as important as other sufferers! There are varying degrees of Migraines and symptoms. And even on my best days, I wouldn’t wish that pain on anyone. Mouthgaurds, confusion, and exhaustion all make me irritable too!!!

    It’s interesting that you mention your recent Botox cycle didn’t work. I feel the same way. After almost 3 years, I’m finding that it’s just not as effective as it used to be.

    Thanks for your light-hearted story.
    -Katie

  • Marsha
    5 years ago

    Migraine Bob, Thanks for your witty post. Made me laugh. As you (I think), I can manage the pain okay (as Zomig works very well for me on the pain front), but I experience the other symptoms you mention — my mood and motivation dip sharply, I feel fatigued; worse,I can’t muster the energy or spark to think very sharply, which is a huge bummer because my job is basically all about thinking. Also, I run my own firm and need to constantly be a self-starter: hard to do when I’m flagging. I’ve made some headway in reducing migraine frequency this year by super-hydrating, and by introducing vigorous cardio exercise several times a week. Don’t know why they are such a help, but they appear to be.

    The best of luck to you.

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