There’s a little switch inside my head…

Head pain is often not a part of my migraines, at least not a prominent part. As far back as I can remember, I had periods of weirdness where I felt out of my body, like a stranger looking in. I felt alien, out of time. Sort of like the guy in the book Flowers for Algernon. I can remember that happening since I was a teen, maybe even before. But those periods of weirdness were brief moments of a day, even if they happened for days on end they didn’t interrupt my life.

When I was 27 though, something changed. I started having those moments of feeling weird again. The moments got progressively longer, until a day when I felt weird for eight hours straight. That day, I felt like a switch was turned on in my head. Then the weirdness never stopped for about nine months. And I started getting more symptoms. My hands, arms and legs would go numb. I got very anxious and depressed. I would get very confused, cranky, out of sorts, exhausted. Sometimes tall things, like trees and buildings, looked like they were leaning in towards me. I would lose my bearings. I was finally diagnosed with anxiety and panic disorder, had to take a short-term leave from work and got better with therapy, anxiety medication and rest.


I kept living my life and a pattern started to emerge. About every two years, the pattern would repeat itself. Start to feel weird sometimes, then the switch was turned on and I would have to go back to therapy, anxiety meds, short-term leave from work, rest, recovery.

In 2011 the pattern started again. But this time I had a really bad vertigo spell that lasted months. Splitting head pain sometimes, Fullness in my ears that made me feel like my head would explode. Constant nausea. Extreme light, sound and motion sensitivity. Blurry vision and things sometimes looked distorted. Trouble swallowing sometimes. Days of being so confused I really didn’t know why I was in the kitchen and knowing I knew what that thing in my hand was but not able to find the name for it or how to properly use it. This spell lasted much longer. I struggled for about nine months, trying to work and be a mother of two and a wife and a friend, until a day when driving back home from work. I was so totally gone I almost crashed. Had no idea what was around me.

Next day, same thing happened. I took a leave of absence that lasted nearly a year. Went back to work because if not I would lose my job (I was still not fully functional but I am the main breadwinner, so I had no choice). Thankfully I had already been working with a wonderful neuro and we kept looking, and found, a preventive med combo that made me feel nearly normal again. I started having periods free of pain and was able to resume life.

Is life what it used to be? Not quite. The switch doesn’t seem to have turned off this time, but the meds act as a dimmer on the switch. I have lots of good days, other days when I feel symptoms but at a lower intensity so I can still function, and yes still days where I need to lie down and forget the world and hope the world forgets me so I can bounce back.

I am still learning how to deal with this. I’ve made peace with the fact that for the time being, and maybe for forever, life and I will not be what we used to be. What I have is still really good. I have an awesome husband and family that are very supportive. I couldn’t ask for a more understanding boss or coworker. I have good friends and although sometimes they haven’t been super supportive, I have forgiven them because honestly, if I hadn’t been through this I don’t know if I would be able to understand how pain and misery can last for so long. Other friends I just let go because they really weren’t friends, and that’s ok too.

I still have dark moments, especially when bad days turn into a week of feeling crappy. Like right now. I know there is a voice in my head that panics because it never wants to go back to feeling the way it did during that year. But I try to take it a day at a time, count my blessings and enjoy life as much as I can.

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

View Comments (6)
  • Jennie
    5 years ago

    The hands legs and arms going numb sounds like Hemiplegic Migraine which I suffer from. At the start of an attack I feel like my arm is not my own. My head knows it is my arm but it almost looks as if it has become detached as is far away from my body, as if it doesn’t quite belong.
    HM also makes you feel a kind of primordial fear at the outset of an attack and increased sensitivity and irritability with things around you, I can’t bear people being in my space at the onset.
    Has your neuro discussed HM with you at all?

  • kmripple author
    5 years ago

    Hi Jennie!
    My neuro thinks my symptoms more closely resemble basilar migraine. HM was ruled out because I don’t have motor weakness. After many years of thinking I had anxiety and panic disorder, I have been able to recognize that the anxiety is indeed part of the migraine symptoms and not the main condition. Oh, the wonderful world of migraines!

  • Katie M. Golden moderator
    5 years ago

    Kmripple,
    It must be really difficult to worry if or when the next bad cycle is going to occur. That alone would give me anxiety! It sounds like your employer has been good about allowing you to take the time you need to recover, which is a blessing. And it’s great that you have a good support system.

    The symptoms you described when you feel like you are floating or the area around you is out of order are very interesting. Like your doctor said, it could be related to anxiety. But I wanted to share that there is something called Alice in Wonderland Syndrome that some Migraineurs experience. It’s a rare form of Migraine aura in which the distinctive symptom is a type of metamorphosia, a distortion of body image and perspective, which Migraineurs know, while it’s occurring is not real. Just thought I’d share.

    I know you’re not feeling great right now, but I hope you know you’re not alone and you can reach out for support anytime. You’re tough, you’ve been through this before and it will get better.

    I wish you the best!
    -Katie

  • Lauren
    5 years ago

    Katie, Alice in Wonderland Syndrome exactly describes what happens to me sometimes. It feels like my hands are far away (even when they’re right in front of me on the steering wheel, for example) or very heavy in my lap. Does that sound familiar?

    kmripple, thank you for sharing your story. I understand how it feels to look back on the bad periods and wonder how you functioned at all. Be well.

  • Katie M. Golden moderator
    5 years ago

    Lauren- yes what you describe sounds familiar. I’m not really sure that there is a medication or treatment for it, but it might be nice to know that it has a name and that other people experience it too!
    -Katie

  • kmripple author
    5 years ago

    Hi Katie! Thanks so much for your kind words. The cycle broke, thankfully. Those were two awful, intense, crappy weeks!

    I have a twin who also suffers from migraines. Hers are the more classical kind (or used to be, she seems to be getting more of the other neurological symptoms now) and no doctor seemed to put two and two together when trying to figure out what was wrong with me during all those years. One of her recurring symptoms is Alice in Wonderland syndrome so I am aware of it. Thanks for sharing though. It means a lot.

    I am so glad I found this web site. I wouldn’t wish migraines on my worst enemy, but it is awesome to know there are people out there who understand the weird world of migraines we inhabit!

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