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The Muddled Mind

This little article began as a note taking session while I was reading a book by famed neurologist Dr. Oliver Sacks, and has evolved into a study of my own migraine experience. I agree with Dr. Sacks that the brain is “most incredible thing in the universe”, alongside love and maybe coffee. It is incredible to think (irony) that the three pound lump of fat and neurons rattling around inside our heads is the reason why our reality is, well, reality.

The majority of people with migraine are born with a compromised nervous system. Something, somewhere, is not firing on all cylinders at all times. Researchers have now identified more than 20 irregular chromosome segments associated with migraine, so it’s fair to say that most of us inherited our bumbling chemical interactions from a parent.

During most, if not all migraines, the trigeminal nerve that extends its wiry little arms and legs throughout the face and jaw becomes inflamed. And because migraines affect not only nerve cells, but also the adjacent blood vessels and the immune system, chemicals are released from nerve endings that cause the blood vessels to spasm – alternately swelling, constricting and becoming leaky. This vascular hissy fit activates the immune system, causing general inflammation and swelling of the cortex.

If you think reading all of that is exhausting, try living it for a day or three.

Migraine is not specifically a female problem, and it is not always menstrual. However, from the onset of puberty, there are three times as many women as men who experience chronic migraines. It’s not the hormones per se that throw us off, but rapid fluctuations in hormone levels can be a trigger for many migraineurs. I am now far closer to 50 than I would like to admit in public, but research and my own experience has shown that the hormonal fluctuations that precede menopause shifts the balance of symptoms from mind-numbing, throbbing headaches to feelings of facial and ear pressure, imbalance, body aches, cognitive dysfunction, sleep disorder and fatigue.

It hurts, and you’re crazy. #goodtimes

Dr. Sacks began his research decades before the mighty Triptan family rose to power, and describes in detail, the observations of migraine experience from Hippocrates to those wonderful Dutch doctors who developed sumatriptan. Yet however effective triptans are at controlling the duration and pain of a migraine, they do not always treat the cognitive dysfunction that is a significant part of the experience. Here’s where Dr. Sacks anecdotal stories of pre-triptan migraine treatment shed some light on the strange things the brain is capable of doing when neurons are on holiday and have forgotten to leave a forwarding number for the office. Some might assume a migraineur is “just seeking attention” or “needs to toughen up”, when pain is only a minimal part of the problem. The greater challenge is trying to explain to those around you how your brain is interpreting all the sights, sounds and experiences in the world differently from their own.

It has only been within the last 20 years or so that science has even begun to consider studying the “other” elements of migraine. I would hazard to guess that this is in part due to most resources being devoted in the past 70 years to pain management, and the assumption that being a bit dotty is just due to the exertion of dealing with the headache itself. Yet current researchers have admitted that there is less known about the cognitive effects of the total migraine experience than is good for our long term health. Dr. Keith Edwards, the Director of Empire Neurology in Latham, NY admitted during a conference of his peers that, “Cognitive dysfunction with migraine may be an under-recognized disability associated with migraine, especially when considered independently from the headache intensity”.

So I might be perfectly capable of typing on my computer or driving to the store while Amerge has a chokehold on my spasmodic blood vessels, but that doesn’t guarantee the grey matter below won’t react like I’m at a rave in the middle of downtown New Orleans at the height of Mardi Gras. During those moments, with minimal or no actual pain, the world around me is just too much. Sounds are too loud, colors too bright, people are too close and the very air vibrates with a highly annoying buzz.

Be patient, my dear family and friends. Your local migraineurs are not (always) annoyed with you. We are annoyed by the reality our brains are perceiving.

The few horrific months in which I took Toprimate were filled with a bevy of dissociative experiences, including memory gaps and lapses in time. The feeling of being perpetually adrift in a room full of people subsided several weeks after I stopped taking the anticonvulsant, but periodic bouts of unannounced time travel have continued and are becoming more common these days, particularly during my postdrome.

Call it 10 second dissociative amnesia or 3 second transient global amnesia, it’s really spooky to be driving along and suddenly realize that you’ve lost about 100 yards of asphalt. And how did that stop sign pop up so quickly? It was a mile away just…a second ago.

Here is where Dr. Google’s research becomes spotty. These brief episodes of lost time, frightening as they are, do not occur consistently enough for long term study. I now try to keep a good distance between myself and the car in front – just in case.

Or maybe I’m just a Time Lord driving a Camaro-shaped TARDIS.

Those of you who experience migraine or are close to someone who does, please feel free to weigh in with your thoughts and opinions. We only discover better cures when we better understand a disease.

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

  • Derek
    5 months ago

    Excellent article, and I really liked your definition of what is happening with the trigeminal nerve. I’ve copied that section of text and the next time someone who matters asks me to explain what migraine actually does, I’ll use it.

    And you’re right in that more women experience migraine than men, as supported in lots of the research. But as a man who has experienced migraine for most of his own trip close to the half century mark, I appreciate that this is a mostly gender neutral post.

    I took Topamax myself for the better part of a year, and have experienced very similar cognitive and dissociative effects. I’ve been years off of that medication now, and I’m in the group of migraineurs for which tryptans have no effect. So for me during an attack, its pain and symptom management only.

    But I completely get the time lapse stuff, so you aren’t on your own there. I don’t know for sure if I’m legitimately losing time (as in I’m out of it for however long the state lasts) or if I’m forgetting it after the fact. Either way, I believe that its a side effect of my illness itself, as opposed to one stemming from taking that particular medication. Maybe its a case of belief due to hope. Because I don’t want to be getting more side effects from that one so long after stopping taking it.

    One last thing: Kudos for wheezing in a Time Lord and Tardis reference. My other ride is a Tardis. I had my chameleon circuit and now I can’t find the damned thing. 🙂

  • UncomfortablyNumb author
    5 months ago

    Derek,

    I agree that male migraineurs don’t get nearly the amount of respect that they deserve, either in the forums or in the real world.

    I do hope that science will evolve far enough in the next few years to find a more permanent solution for your migraines.

    Until then, may you have more pain free days than not, and take full advantage of the good ones. If we’re on this Time Trip, we might as well find a way to make it interesting. 😉

  • Luna
    5 months ago

    I really appreciate these insights. Other peoples perspectives are stated in ways I wouldn’t think of but can so relate. I have shared this article with others.

    I would like to know where this particular scientific information is found in current literature.
    “that cause the blood vessels to spasm – alternately swelling, constricting and becoming leaky.”

  • UncomfortablyNumb author
    5 months ago

    Luna,

    The whole, “It’s neural, not vascular” argument that’s been circulating for awhile now is, to me, a throwing-the-baby-out-with-the-bathwater approach to what I experience. The original NCBI report I read is not as current as I would use in a research report (2010), but it covers the idea that both vascular and neural activity are two sides of the same coin in that they both affect each other. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5500293/

  • Luna
    5 months ago
  • Luna
    5 months ago

    I’m with you about the neural and vascular affect each other. I’m of the opinion that the neural, chemical, electric and vascular are all involved. Thank you for the links. Am always interested in more information. I really like the information in this article from 2011. Hopefully they know more now.

  • UncomfortablyNumb author
    5 months ago

    And this 2019 posting from Johns Hopkins, while following the more popular change in serotonin levels as a trigger, also asserts that there is a link between the chemical trigger and the vascular spasm. In their words “contractions in blood vessels may be set off”.

    https://www.hopkinsmedicine.org/health/conditions-and-diseases/headache/how-a-migraine-happens

  • Allyson.Ellis moderator
    5 months ago

    Thank you for sharing your reflections, UncomfortablyNumb! Migraine is indeed such a complex disease that needs much more research to fully understand. I hear how much you endure with migraine symptoms and how disconcerting many of them feel, particularly the loss of time. You are not alone experiencing those amnesia and aphasia -type symptoms. I hope others will also join in and share their thoughts and experiences. As you said, migraine understanding advances when we share thoughts and ideas together and can be reminded that, while migraine feels so isolating, there are others who live this reality and do truly understand. I appreciate you being part of the community. Wishing you a gentle day. ~Allyson (Migraine.com team)

  • UncomfortablyNumb author
    5 months ago

    Thank you for your kind words, Allyson.

    As the summer has allowed for more reading time, I’ve also read Dr. Sacks “The Man who Mistook His Wife for a Hat”. While not specifically targeted towards migraineurs, it’s an interesting insight into how perfectly sane people live with cognitive disorder. There are some things, like migraine, that we cannot completely cure, and knowing it is so, it’s good to hear stories of how other people have adapted. Acknowledging that my own cognitive whoohoos are not a sign of weakness, but are simply facts like my shoe size, is actually liberating.

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