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Chronic Migraine Oblivion

Chronic Migraine Oblivion

Migrane Awareness Month

Today’s 2013 Migraine & Headache Awareness Month Blog Challenge prompt is: Oblivion.

As part of the team who helped come up with the prompts for this year’s MHAM Blog Challenge, I knew from the start exactly what I wanted to say with respect to today’s one word prompt, Oblivion.

I’ve lived with Chronic Migraine for 10 years now. But chunks of that time have varied from fairly manageable (comparatively speaking) to all consuming. When I experience an especially long, especially intense period of Chronic Migraine as I most recently did the entire month of January, I feel as though I slip away into an alternate Migraine universe.

That universe is all about sleeping, darkness, ice packs, medicine, coping techniques and escape. No unnecessary effort, no focus on anything other than “Am I still breathing?” Bill paying doesn’t happen. Errands and grocery shopping don’t happen. My pets, especially my active dog, spend all day, every day waiting for me to spend real time with them. I rarely even get my twice daily medications taken.

I missed Hurricane Katrina and the entire aftermath in one of these periods of Chronic Migraine oblivion. Until you’ve lived like this, you have no idea how strange it is to ordinarily be a connected, plugged in person, but come to only to realize you’ve slept through one of the biggest news events in modern history. I know I certainly didn’t. It still feels surreal that I have no memories of experiencing this event because I didn’t experience it through live news coverage the way most people did.

How many of you can relate to this state of Migraine oblivion? Have you missed any monumental events during an especially bad episode? Did it seem weird to you?

Learn more about the MHAM Blog Challenge and other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.

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

  • Luna
    5 years ago

    That universe is all about sleeping, darkness,… coping techniques and escape. No unnecessary effort,
    And when I reemerge into the real world it seems that the time away has been much much longer than the calendar says.

  • Katie M. Golden moderator
    5 years ago

    Luna,
    I have the opposite problem. When I’m in the black hole time stands still. One day I’ll realize that the seasons have changed or that a whole month went by and I didn’t notice.
    -Katie

  • CrystalB
    5 years ago

    It’s comforting to see there are others out there going through what I am. I have been diagnosed with intractable migraine and status migraniuos. It’s sad that I likely will go through this longer than the 8 months that I have been going through this but I have found a doctor who understands me and a neurologist who is an ass but knows what he is doing. At this point I am trying to find a preventative that works. I take Fioricet and Imitrax but really try to control the pain with Excedrin migraine. I hate taking meds. But then pain gets to be too much. Fioricet helps a lot.
    I cried reading some of these post. I too have missed so much life in the last 8 months. I don’t drive, lost my job, my kids worry (my oldest is 8 and just wants the migraines to stop so I can drive him to school).
    I missed seasons too. I swimmed during the summer to help with the pain but hid away after the summer was over (also I find I can never leave the house without my sunglasses…ever).
    I have anxiety and panic attacks…never did before. Why is this all happening? I have tried diet changes to help (wheat-free) and nothing.
    Topiramate doesn’t seem to be working but will try a higher dose first (only on 100mg) up to 200mg then onto a beta blocker.

  • Melissa Ferrell
    6 years ago

    Thank you so much for the new-to-me terminology of “oblivion chronic migraine.” This is exactly what I go through at least 2, and sometimes, 7 days a week. The only thing that “helps” is sleep – and not that that actually helps, it’s just a way to not be aware of the pain.

    I feel so bad that my kids are the ones that suffer from this disease, almost or maybe even more, than I do. My heart sank when my youngest daughter, who is just 9, said to me a couple of weeks ago, “You were asleep every single day that I came home from school last year.”

    I am to the point where if I am not in pain when I wake up, I suffer from panic/anxiety attacks, worrying about not taking my pain meds at that time – being afraid that I will get an attack and it will be too late for the pain meds to actually work. I have had that happen before and know the excruciating and debilitating pain that is associated with it. But, on the other hand, I don’t want to become addicted to the pills and take them if I don’t actually need them at the time. If I’m not in pain, I’m worried about being in pain. So for me, as I am sure with many others, this disease also affects my mental health. It is a never-ending cycle.

  • Diana-Lee author
    6 years ago

    Yes, I can definitely relate to the mental health issues in addition to Migraine. I’d like to encourage you to seek out treatment with a qualified psychotherapist to learn new ways to deal with those feelings of anxiety (and depression, perhaps). It’s made a world of difference for me.

  • LisaMauria
    6 years ago

    It is so difficult to explain to some people that it’s not just a headache, it impacts every single aspect of your life. I have Chronic migraine with intractable migraine with status migrainosus and chronic intractable cluster headache syndrome…besides a barrage of other health problems for which I will be going to the Mayo Clinic in a week to participate in a clinical trial. I am only 46 years old and I spend almost all of my time in bed, in this last year it has gotten so bad that my three children had to go live with their father because I was unable to even care for myself let alone care for them. That is the hardest part of it all…watching how it affects my children. I miss so much of their life and it just breaks my heart. It’s just as difficult emotionally as it is physically…maybe even more so. My heart feels for all of you.

  • CM
    6 years ago

    I have had chronic daily migraine for a little over 10 years. Most of the time it has been fairly well-managed with medication, though “well-managed” is a term I’d use loosely. When you’re in pain all the time, pain seems to be the norm. It is scary to me when my pain becomes background noise because I don’t ever want to accept that this amount of pain every single day is an acceptable, normal thing. To stop living my life has never felt like an option. I think if I crawled into bed in a dark room every time my head started hurting, I’d never leave. On the flip side, though, that’s what makes the plethora of doctors I’ve seen over the years struggle to believe my pain is real. I’m not a crier. When I’m in a lot of pain, I shut down. My affect is flat, I don’t make facial expressions, I don’t respond…I just shut down. In my most recent horrific, never-ending episode of pain, I slept through the majority of the last year. From May 2012 through February of 2013, I had intractable pain that didn’t respond to medication. I thought I was going to need to be admitted to the psych ward just so I could get snowed enough to sleep. I was a zombie who rarely left her room except to eat and go to classes I could barely pay attention to. 10 months I barely remember.

    More than anything, I feel like I live in fear. I carry every single medication I’ve ever been prescribed. I keep as much of a medication as I can get my hands on and just stash it because I’m terrified of being caught somewhere in that much pain and no way to get relief. I keep large purses because I feel like I have to carry all 7 medications I’m currently taking with me at all times for that “just in case.” It’s insane. I’m terrified of pain, and simultaneously terrified of becoming an addict so I’m always reluctant to use my rescue meds. I know myself when I’m in pain…It’s not that I’m ever drug seeking. I’m relief seeking.

  • AmyBabee
    6 years ago

    Man, this disease is messed up. God Lord Jesus, please HELP US ALL. AMEN!

  • Dawn Lloyd
    6 years ago

    This story illustrates migraine is not “just a headache.” Unless you’ve experienced pain and suffering like this, you cannot understand it.

    This forum allows migraine sufferers a place to share their stories with other suffers who do understand. Thank you migraine.com.

  • Rene'
    6 years ago

    I am not a crier. Takes a lot to make me shed a tear but today, after I read Diana’s post and comments, I shed a tear for all of us. Now, I can only take a deep breath and say to all of us…..
    we are here, because here is where we are supposed to be…..
    Every soul is charged with something, in this journey my human body is sick. It is up to me to find a way through it, to grow and prosper and be happy, to live this human life the best that I can. I am so very grateful that I found this group of people who are in the same circumstances, misery does love company. Oblivion, pain, exhaustion, fogginess, anger, sadness, confusion……use these to get to acceptance. Accepting your circumstances does not mean that you give up on trying to find better ways to live. I accept that I have this dis-ease and I also accept that it is up to me to take control of my care. I will research, read and talk to people in my situation to see what is working for others and not. I will educate myself on my options for improving my life. And I will begin and end each day with a prayer.
    God grant me the serenity
    to accept the things I cannot change;
    courage to change the things I can;
    and wisdom to know the difference.

    Living one day at a time;
    Enjoying one moment at a time;
    Accepting hardships as the pathway to peace;
    Taking, as He did, this sinful world
    as it is, not as I would have it;
    Trusting that He will make all things right
    if I surrender to His Will;
    That I may be reasonably happy in this life
    and supremely happy with Him
    Forever in the next.
    Amen.

    –Reinhold Niebuhr

  • IrishMiMi
    6 years ago

    I’m blessed to have 7 grandchildren. In May, our daughter brought 2 of our grandsons up from FL for vacation. They planned a family picnic & even stopped by for several hours on their way home. I missed the whole thing & a baseball game. It was so bad that I didn’t even see them. My chronic migraines can be accompanied with episodes of passing out & memory loss. I no longer work, drive, or do many things that I previously did. I can completely relate to everything you have mentioned. I was wondering tho, what do others use for relief when they go on for weeks & weeks? Insurance allows 9 of 2 different meds. And as u know, 18 doses just doesn’t cover it. These bad episodes r coming more frequent & last longer, & the intensity is beyond. I pray for everyone who has migraines, it’s not something you wish on anyone.

  • Jill M.
    6 years ago

    IrishMiMi,
    You don’t mention anything about taking a daily preventative for your migraines. Have you talked with your doctor about that? From what you describe, it sounds as if you could greatly benefit from pursuing that avenue. I’ve tried several – Inderal, verapamil (both blood pressure meds), Topamax (worked well, couldn’t tolerate side effects, and Zonegran. I am currently taking Zonegran, and it has been wonderful. (Topamaz and Zonegran are anticonvulsants.) Last fall I was regularly having 15-20 migraines per month; after my neurologist found the right dosage of Zonegran, they decreased to 3-4 per month. I had also gotten into a vicious cycle of medication overuse headaches (rebound headaches). If you are taking meds more than 3 times per week, you could be in that cycle as well. I sincerely hope that you find some relief. I do understand what you are going through.

  • DebbyJ56
    6 years ago

    I’ve had chronic daily migraines for seven years. I take enough meds to keep me out of bed and out of the hospital. But most of the time my pain level is a #8. My memory is very poor because I also have fibromyalgia. I remember nothing. My husband and I kid that every day is a new day for me, because I remember nothing from yesterday. There’s no such thing as a rerun for me. I sit in my dark little cornor of the family room in my comfy chair and ottoman and life goes on around me.

  • monicaburek
    6 years ago

    This year has been my OBLIVION. Of the last 308 days that we have experienced I have had a migraine 302 of them.

    I have been OBLIVIOUS to the growth of my children because of the daily pain that I am trying to deal with. I feel like the evil old lady across the street that constantly tells the kids playing and having a great time to keep it down out there while I am trapped in my dark room.

    I am OBLIVIOUS to the needs of my husband. I have always put our relationship first and made it a priority for hard work. The poor man doesn’t remember what happened to the woman he married…but he has taken in sickness and health and for better or worse to a level I never knew was possible! I no longer have the strength to make that number one!

    I am OBLIVIOUS to me. I am know known as a sick person…I don’t know how to be that. I want to go to a party and be the person I was laughing joking being me…not the Chronic Migraine sufferer who now has to try to explain why they haven’t made them go away and how come they haven’t found what’s causing them.

    I am not sure how much more Chronic Migraine Oblivion I can go through.

  • Leigh Ann
    6 years ago

    I hear ya, Monica! My husband calls my memory, or lack of, my ” Swiss cheese memory”, because it’s full if holes. I have had two serious hospitalizations where the migraines mimicked a stroke. I was blessed with good doctors both times who prescribed a combination of meds that help me function, somewhat and reasonably. I still have days that knock me flat on my back where I cannot remember much, but I have the love and help of my husband and three teenagers, as well as my church family. My faith helps me when I am at my lowest and the pain is at #8-#10. I found a good neurologist who understands Complex Migraines. Imitrex, Fiorocet, and Baclofen are a few meds that my doctor prescribed for me and I highly recommend you find a doctor who knows about this ailment and can really help you. Be proactive! Best wishes for you and a clear day every once in a while! 🙂 ‘-‘

  • kateymac
    6 years ago

    Years ago, when my migraines were still episodic instead of daily, I missed an Autumn. Migraine started with green trees all around me, and didn’t stop until the trees were completely bare.

    No fiery red, orange, yellow and sometimes even PINK displays of New England fall gorgeousness? WHAT??? It’s OVER??? I just MISSED THE WHOLE THING??? ARE YOU KIDDING ME???

    It felt physically odd, which surprised me. I would get an strange sense of something missing, like I lost my keys or all my clothes were on backwards. Or maybe next time I went outside, the moon would be gone, just like that. Hmmm… what was it?… Then I would remember: I missed Fall.

  • CC
    6 years ago

    Most recently, I missed winter and spring. I haven’t been able to care for myself in years, so I’m fortunate to have loving family and a boyfriend who shuffle me between their homes or come to stay at mine. I was at my parents home when it was snowing in December and got a picture of the snow at my boyfriends home (it was deeper than his mini-schnauzer is tall). When he swapped to care for me it was January and there was snow everywhere. The next time I left his house (not buried in ice, sunglasses, black-out sleep masks, and blankets in the back of his car–all done in the darkness of a closed garage), the grass was green and trees thick with leaves. I was astonished. I’d missed winter and spring.

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