Emerging From the Migraine Black Hole

My Migraines go in cycles. There’s never a day without one, but some weeks are more tolerable than others. Bad weeks can include trips to the ER, changing meds, researching new treatments, depression and unimaginable, bed-ridden pain. When the cycle finally breaks, I want to take on the world. I’m stir-crazy, I have more energy and I think I can conquer it all. I’m ready to bust out of the Migraine black hole I’ve been living in.

I’ve been pretty sick for the past 2 months due to an Unintentional Detox. Now I’m back on preventative meds and just got a round of Botox. Relief is beginning slowly. I’m not sleeping 14-18 hours a day anymore, so I’m trying to catch up on life.

But that’s not as easy as it sounds. I have lists all over the place of things to do when the icepick pain isn’t controlling my every move. Prioritizing these items can get overwhelming. I look at the lists and think, “why in the world didn’t I get any of this done in the last 2 months?” Was I really in such bad shape that I couldn’t water the plants, fax a form back to the doctor’s office, or call my grandmother back? When was the last time the bathroom has been cleaned? Surely I could’ve taken 15 minutes to do that in the past 3 weeks.

Laundry, sweeping, dusting. I remember why none of these things were done! Thirty minutes of house work and I need to rest…and this is when I supposedly feel better! Can’t I just go back to bed and ignore it all?

Then little by little, I get stronger. I start going to the gym. I take less naps. The piles of paperwork disappear. The house is once again spiffy. I stop declining invitations to get together with friends. I can see little accomplishments and it feels good.

Then I turn my attention to all those relationships I’ve ignored. I’ve been a recluse for so long and crave human interaction. I feel like I owe my friends an apology when I finally emerge. “Sorry I never responded to those texts,” or “I can’t believe I missed your birthday.” I try to overcompensate and go out of my way to spend time with them. I’m a lot better than I used to be about over-scheduling and running out of energy. But I want to squeeze it all in before the next bad cycle begins.

I get excited about putting on “real clothes.” I love getting dressed up and a casual lunch date can turn into an hour of primping just to feel human again. Which is really stupid on my part. I may be feeling better than the weeks I just spent in bed, but I’m quickly reminded that I still have daily Migraines. Spending extra time on unnecessary tasks (like straightening my hair) can tire me out, making me less engaged when I finally do get to that lunch date.

Even when I do have the energy to be out, exchanging life updates can be painful. Life has seriously sucked since the last time we spoke. Not wanting to bring the party down, I play it off like it’s been no big deal. But it was a big deal. I couldn’t get of bed. I haven’t driven in weeks. I’ve been shot up with all kinds of meds. It’s been pure hell. But who wants to hang out with the girl who has a chronic illness AND complains all the time?

Instead I focus on the fact that I feel good now, so let’s enjoy it while it lasts. I try my hardest to forget and just live in the moment. Remembering the fun times is what gets me through the next bad cycle.

Then slowly, the Migraines become more intense. I fight it as long as I can. Sometimes pushing myself too hard, acting like I don’t know what’s coming next. Eventually I disappear again into the black hole. A week, two weeks, two months…I’m never quite sure. When I stop answering emails, texts or don’t return phone calls my close friends know what’s happening. I’m so lucky that they still check on me. Never pressuring or making me feel as guilty as I make myself feel.

So goes the cycle.

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 (14)
  • Shelly
    4 years ago

    I understand and relate all too well. My life seems to revolve around my migraines. My attitutde, my energy, my well-being. I am 53 and have had migraines since I got pregnant with my first child 28 years ago. My migraine pain can be unbearable and unrelenting. I have very dark thoughts during migraines, but when I am feeling well I forget the pain but not the reality that another one is lurking. I live in the NY area so I have access to good doctors but still there is no magic potion and sometimes I feel I don’t even know if I am doing enough. Thanks for this online “therapy” group.

  • Laurenda
    4 years ago

    Hi Katie,
    Reading your story sounds like my life the past year.I was diagnosed with migraines in 2008, I had been having headaches at least 3 times a week,in 2008 I was struck with daily bedridden migraines that caused numbness down the left side of my body,first I was told I had Multiple Sclerosis and then they decided that wasn’t it,decided it was “just” a migraine.I was pretty much bedridden for 3 months then it eased up after being put on Topamax and an antidepressant. The migraines came and went about 3 times a month and in 2010 I was hospitalized with Gullian barre syndrome and almost lost my life,strange thing was after spending a month and a half in the hospital and 6 months of physical therapy learning to write and walk again the migraines completely stopped until about February 2012, I started having them off and on. On September 29,2013 it came on with a vengeance, My head was spinning,the numbness came back,couldn’t see straight or focus on anything, I went to the ER twice that week and was loaded with all kinds of pain killers,spent everyday only being able to make it from the bed to the bathroom. I was seen by 2 Neurologist and they tried all kinds of medicine and nothing would break it finally the 2nd one told me there was nothing else he could do sent me to another Neurologist and got put on more medication,seen a Rheumatologist and got more medicine.I was bedridden and in a living hell,in June 2014 it started to ease up and I was able to half way function again.Needless to say I lost my job and live alone with no income. I have one friend who has stuck by me,everyone else just can’t figure out why I’m depressed and let a “headache” destroy my life. I still have migraines daily,some days worse than others and it seems to be that if I’m feeling halfway decent I tend to try to have a normal life and for a couple days I go and go only to be followed by a week of being bedridden. My problem is nobody seems to take this serious,I applied for disability and was denied,it is now in the appeal stage,I first applied in March. I am now broke,have no insurance and getting ready to lose my apartment and I can’t seem to get any help. After a very long story I am just wondering if you or anyone else has any suggestions on what I can do? Feel hopeless and alone:(

  • Kate Koltun
    4 years ago

    Katie, my name is Kalinda,and I am new to this blog. I was so moved by your description of emerging from the black hole that I made myself register. To another migraineur you know why name ,rank, serial nUmber and passwords are a challenge some day. I have been suffering with chronic debilitating migraines for the past 10 years. I have them with a severe case of vertigo that can hit any time anywhere and render me collapsed, vomiting, aphasic,double vision, spinning watching the world move when it is not. Your descriptions of the process of migraines was so similar to mine it makes me feel less alone

  • Alessandra
    4 years ago

    I read these stories, for which I thank you for writing, and I cry because my life with chronic migraines is hell. I am a single mother with a thousand issues I try to face everyday, but I just can’t because of the pain, the auras, the vision loss… It’s comforting to know I am not alone, because I feel so lonely. You cannot understand our condition unless you live it. I can’t even go into a grocery store without getting disoriented, let alone a Target. Forget it! I sat on the floor once because I was so disoriented from the pain. I am trying everything, Botox, meds, different meds… even the doctor’s seem frustrated. I’m not getting any relief and I am giving up hope that there is an end in sight. The time between black holes gets shorter and shorter. I push myself and try … I have no choice, but I can’t take the pain. I am sorry to all my fellow sufferers, but I am glad your out there, at least I know I’m not crazy… God bless.

  • Kate Koltun
    4 years ago

    Alessandra- I don’t know what you do to treat your pain, but it feels to me like pain rules. I can never get anywhere unless I can get on top of the pain. When I am in pain, or having a vertigo attack, after 10 straight years of this I lose hope, like your entry. I even had to leave the town and state I lived in for 30 years to move to California where the air is softer and sea level and the air pressure is pretty stable.Anyways, when you regain control of your pain, you feel better and you feel in control. Besides the acceptance we must have that for whatever reason we have migraines, we must have supports in our lif

  • HollyA
    4 years ago

    I agree with the other replies/feedback. This IS my life and I can not tell you how wonderful it is to hear someone else say this. I often have this same conversation with my self, but always to afraid to say it out loud to my family and friends as it just sounds terrible doesn’t it? If I don’t say it, then it’s not real….right? I will share this article with everyone I know. Ahh, to be someone with a migraine. This article really validates that I am not alone and this condition can be so different for each person, yet the same.
    Thank you again!

  • April H
    4 years ago

    Hi Katie,

    It seems as if I was reading my own story. I’ve Been in bed since last Wednesday after a trip to the ER. I too have a daily migraine. I can mines a functioning migraine. When it intensifies I honestly long for the functional one. Black hole is truly an awesome definition. I am hoping to get up tomorrow and press through the weekend.
    God Bless and prayers for you.
    April H.

  • Emily A
    4 years ago

    This literally has been my life the last 2 years the cycle of trying to dig out of that black hole for a day or two before that daily migraine drags you back down. Thank you for speaking for me!!!

  • Leynal
    4 years ago

    Wow, this really hit home for me. I don’t have the cycle as much as you do- but your description of getting ready to go to a lunch date, straightening your hair to feel normal… And then being exhausted. Not wanting to be a downer (not yr exact words), bc life has been hard with this illness. I hear you.

    I also want to go back to my life that I had where I looked cute all the time, and my migraines were uncommon. Now it feels like migraine dictates all.

  • deon
    4 years ago

    I go thru the same cycle. … to where you don’t know from day to day week to week just how it will be food for you. I just Pray that my daily below 5 (I call it) stays below a 5.

  • Nancy Harris Bonk moderator
    4 years ago

    Hi Katie,

    This is the pattern I deal with too. Hopefully someday I’ll realize that overdoing it sets me back, although feels great to get a few things accomplished.

    Nancy

  • monkeybrew
    4 years ago

    Katie, thank you for this article. The “Black Hole” is a term I have used in conversations with my friends to describe where I go during the bad times, when the migraines are at their worst. It was nice to read of someone with similar experiences. Although I know by now that many of us here share very similar experiences.
    I also know what it is like to slowly climb up and out of the black hole. One’s energy is increasing, perhaps not as quickly as one’s desire to get back to chores and lists and projects. It can take some time to get completely out of the hole. Honestly, sometimes I feel like I am never completely out of the hole. Rather I feel closer to the top, to the edge. I see more light and have more hope.
    The last several months have been more black hole than light. I still have hope and where there is hope there is light to dispel the darkness (some of it anyway).
    MB

  • Lisa Robin Benson moderator
    4 years ago

    Hi Katie,

    I so understand this cycle. Even after slowly emerging from a hole myself, it has taken me a year or so to feel like I now don’t worry about making plans with people and if it’ll be too much. It takes so much work and effort to pull yourself out of the hole. And it can be hard to know what to talk about. Truly hard. I feel for you. I think you have a good start by focusing on the now. I also find that I now have a feel for which friends I can talk to about this sort of thing and which may not be so into listening about it all. I pretty much force myself to open up to those friends who are willing. It can be very fulfilling to them to know that they are someone you trust enough to talk about your health with. It doesn’t have to dominate the conversation, but it doesn’t have to be a white elephant either.

    Wishing you well.
    Lisa

  • Tiffmat33
    4 years ago

    Hi everyone!! I’m sooo thankful for all of you! I’m new to this. I have always had migraines but up until a few months ago they were not really chronic. Or maybe they were and they are just more severe now. I thought I was alone and that something was wrong with just me. It’s soo comforting to know that I’m not alone. Thank you everyone for sharing!!

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