Things I realized this morning

I woke up this morning and cracked my eyes to the usual mind numbing pain that always greets me in the am. I have gotten used to the feeling that welcomes me to the day and have learned to wait for a 30 count before it hits. Sometimes I almost feel a little squeal of glee if it takes a full sixty seconds or gasp ninety before I get hit with my familiar friend.

Approximately 10 months ago I was diagnosed with chronic migraines. That day I was hopeful for the first day in a long time. After a yearlong cycle of a migraine day in and day out, visiting my doctor every month, trying every single medication under the sun, MRIs, and CAT scans. I finally had a neurologist look at me and give me an answer. Halleluiah! Now, I had been no stranger to migraines, often getting them for months on end but never one straight for a year and never one without any end in sight. So when I got the diagnosis and the decision for Botox I was certain. This is it. This will fix me. I am going to get these shots and all will be well.


My first round went fine giving me a slight respite, but my friend came back soon after and has subsequently been able to stand tough against the last two rounds of Botox. So I am now rounding out 2 years of the same migraine.

That’s what brings me to this morning; I looked in the mirror and finally registered what my doctor had said. He said Chronic Migraine. And that is what it is. It is a chronic disease that has to be battled every day. People will often say, oh yeah I have had a migraine I know how that feels. But imagine having that migraine, that you may have had for 4 or 6 hrs, maybe even a day, I have had it for seven hundred and thirty days give or take a few…..

One of the hardest parts of having a chronic migraine is that I don’t look sick. In fact chronic migraineurs try very hard for people not to know that they are having a bad day or a vomiting in your head day, as I like to call it. But as Christine Miserandino tells in her, Spoon Theory, it often will take all our energy to do the smallest outing that we pay for the next few days. You can often tell us apart by the fact that we wear our sunglasses on cloudy days, can easily be distracted by watching the floaties and auras floating around you as you talk. Our words and thoughts often get lost or scrambled. And our intentions are good but our follow through is lousy. I always have grand plans of what I can do for the day, week, and month but often find that after I have made it through my first few tasks dealing with the roaring in my head makes it impossible. When I am out of my bed I dream about crawling back in it and covering my head to block out life. When I am in bed I day dream about what my life was like before. Before I realized the word chronic…..

It is very hard for chronic migraineurs that don’t look sick because they can be told, at least it isn’t fatal, or at least it’s not cancer. But chronic migraineurs have an extremely high incidence of anxiety and depression. There are many days that I sit and dream about the quietness that death could bring just for the release of the constant pain that is going on in my head. No I am not “suicidal” I just have a chronic migraine. I think that that is a thought very common in people with chronic conditions. Looking into the abyss of chronic, at times can feel like a long stretch in front of you. I am very blessed that my husband and children understand that mommy needs to spend a lot of time in a dark room and that sometimes that they all need to be very quiet but it is very hard to tie them to this quiet life as well. One night the four of us were driving in the car and after admonishing them for being so very loud I asked my husband if they were as loud as they seemed to me. While he supported me to the girls, he quietly told me, no they weren’t that loud at all, and suggested maybe I should get ear plugs. I looked at him horrified. Didn’t he realize that’s where the pain releases? If I use ear plugs it will get trapped in there! Completely irrational but, that was my first thought!

I woke up today and had to admit to myself every day is my fight. There is no cure. There is no magic combination of pills and herbs and yoga positions that will suddenly take this away from me. Does this mean that I am going to stop doing and trying everything. Hell to the NO! But I can no longer sit down and pretend that the next treatment it going to make my life a completely different thing. I will always be either in this place or waiting to be in this place. So, if I can’t keep the plans I made, I apologize, and if I can’t chat on the phone please understand that if feels like you are shouting in my ear, if I haven’t texted you back I probably forgot it was there, if you really want to find me, you know where I will be huddled in my bed that is dark and quiet. Believe me I wish I were with you.

For a chronic migraine, there are no triggers, life is my trigger. For chronic migraineurs there are no cures, there are only patches that will get you through to the next bout. Have we tried, acupuncture, herbal remedies, diets, standing upside down on our heads? Yes. The answer is if we have gotten diagnosed as chronic migraines then we have tried anything, and if by chance we have been able to get up and put our mask on that day please let us wear it, under our sunglasses and large hats. It took a lot to get there, and ain’t nobody got spoons for that.

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 (20)
  • rpigg
    4 years ago

    Thank you for your post. Would you mind if I printed this out and shared it with my family? I also am a chronic migraineur (sp?), and trying to explain is impossible. At least my husband understands this for which I am grateful. I bail on everything, including myself, and I ask myself why should a lump of useless flesh even still be alive. Every day there are impossible times of pain, then some that is ok. I understand the waking up and then it hits me. And then there are the pain dreams! Man those are violent things. It makes me wonder how I can dream such things. So many challenges, too many to mention. How nice to find a place where there are those who understand, and it is comforting to know that I am not extreme, and for some this is the normal everyday existence.

  • Emily A author
    4 years ago

    Feel free… When I wrote this it was a free form way to get the feelings out of my head for my family and friends to understand my life. So please share sends you good thoughts. Dark spaces and quiet days when you need them! Good luck!!!!

  • SapphireDream
    5 years ago

    Thank you so much for sharing. I haven’t been able to express what I’m going through to many of the people in my life. Sharing this helped many of them understand why I bail on plans or can’t do many of the things I could do before my 395 day migraine started.

  • MigraineSal
    5 years ago

    Great post that could have been my migraine experience . . . I have learnt to accept that I have to do very little, if I want to function without triggering a migraine, thanks to my neck condition . . . forgot the boundaries a bit yesterday though !

    I have been wanting to clean my gorgeous car for more months than I care to remember but have just not been up to it ( cannot take it to a car wash because of magic parking sensors ) . . . anyway finally felt just short of well enough to take on the task yesterday and took my time / tried to do it with good neck care and still ended up with a migraine as the C4 and C6 trapped nerves are now playing up and I feel like a couple of Turks were stomping on my neck and shoulders through the night. I have found great relief from meditating and putting an iced wheaty bags on my neck and eyes and have been able to ” zone ” out of the pain but not last night . . . such a shame that I couldn’t do a simple task like cleaning my car nice and slowly, especially as I thought I was having a relatively ” good ” day and I consciously undertook no other chores, even though they needed doing !

    I am not going to let it get me down as tomorrow is another day and hopefully laying on ice and meditating again shortly will help me get over this as life has to go on . . . I doubled my migraine preventative meds begrudgingly so I could ” get on with life ” but having a dodgy neck seems to bypass the meds, which had got the migraines under good control, providing I didn’t over do it . . . HARARUMP !

    Still glad I washed my car, even though I am not able to drive today because of my head and neck playing up but I know that next time I get in it it will all be worth it . . . think I will find a special car wash that washes by hand next time she needs washing now I know how much it takes out of me . . . hadn’t appreciated how much my neck had deteriorated and how it triggers migraines . . . lesson learnt !

  • lynnj55
    5 years ago

    Thank you so much for your eloquently-written story about your chronic migraine. If added up, a day here and a day there, I’ve probably had about 8 weeks total in the past 11 years that were low or pain free. I’ve tried everything out there -both conventional and unconventional methods and off-label meds, and numerous doctors, neurologists, natural physicians, Botox, acupuncture, massage, etc. Accepting that I have a chronic disease has been the hardest thing for me.

    Timing the side effects of my medications in relation to what I have to do each day has pretty much taken over my life. Instead of constantly searching for the elusive “cure” for my migraines and cluster headaches, I am focusing on living one day at a time and pacing myself. I try not to feel guilty for giving in to the pain and taking a pain pill anymore. It is what it is.

    Thank you again for a thoughtful article.
    Take care.

  • Ga Dive Girl
    5 years ago

    This has been my life for 10 years. I too feel your pain. Tried everything. Meds, naturopathic, massage, accupuncture, PT.
    On my 5 th round Botox. First 2 wete horrible. 3rd went great and headaches were bearable. 4th was bad. 5th was monday and I am slowing coming around. I am still using PT, OT, massage and Accupuncture, all under the order of my amazing Neurologist.
    I have learned to take it slow when I must. My kids are old enough to understand if mom needs a nap.

    I hope you find relief soon!

  • KmS
    5 years ago

    g’morning, as im reading this, and im so sorry your in pain again!! i know the feeling all to well!!
    but im wondering, have you ever looked into acupuncture ? it worked for me, i have the words chronic written in my dr’s file.. and indeed i was.. untill i went to my acupuncturist. you need to do some investagative work on this, as i did, and i found one who specializes on heads.. she took my history, gave me a list of what she called HOT foods, and said never eat these.. and i havent for the most part:)! any way, in the beginning i went once or twice a week, (some ins. cover acupuncture.) then it went to every other week. i have for the most prt been headache free, and if its weather related, i take 1 excederine!! im still so amazed by this , anyway its been exactly 1 year since i foudn her!!! i went in for a “check up ” recently” she gave me a bottle of liquid herbs, when i tld her i was waking with heeadaches, she told me for 1 month put a dropper full under my tounge … again im mistifed, it worked. i have not had my moring head banging headaches, and NO MIGRAINES at all!!!! ive taken up alot of space here, but i had to let you know.. this is the real deal!! and im sorry for any misspelled words:) take care, feel better, and i hope you look into this

  • Don.witmer
    5 years ago

    I started getting migraines when I turned 20. My mother tolded me the headaches would go away when I turned 55. She was right. 35 years of migraines. Lots of doctors visits. When someone ask me if I would like to be young again the answer is no. I am 71 now. I retired at 62. Has been a pain free vacation for me. Nice to get up in the morning and not be afraid of having a migraine. Lost a lot of good days lying in bed hoping I would die and next afraid I would from the pain.

  • kyange
    5 years ago

    Emily
    I am in the midst of one of my worst cluster migraines on TOP of chronic migraines…no sleep, instense pain, my only “comfort” is ice, the dark and my dogs. I logged on hoping for words from a kindred spirit. “Thank you” isn’t enough.

  • Emily A author
    5 years ago

    And why is the pillow trying to stab you in the head! I’m so sorry to hear I hate those days….I wrote this as a therapeutic exercise to try to get the swirling thoughts out of my head. It has helped even more hearing that I’m not alone good luck today I will be thinking of you! Sending good thoughts!

  • stacysillen
    5 years ago

    I tried everything I could so she gave me botox. no relief the first two times. Slight relief the third time, so I really reached the point of despair. You can only get the shots every 3 months so that is a lot of waiting. I got the fourth shots without any hope. But they worked that time, very well. I am still in a chronic state 2-3 years later, migraine is always there simmering underneath but I get plenty of relief. We added a nerve block a few weeks before the next shot. She says we are almost there; almost back to episodic migraine. Did you try botox for as long as I did?

  • Emily A author
    5 years ago

    Not yet scheduled for my fourth round in June you are right the 3 months in between seems to take forever!

  • bluesguy
    5 years ago

    I too can relate to so much of this story. I have been experiencing chronic migraine for over 6 years now. I have lost my career, many of my life long hobbies, and lost contact with many friends due to the isolation that chronic migraine causes. It is so difficult to deal with the fatigue, the hangover, not to speak of the pain. I will say that I have been fortunate enough to have some Botox treatment that has reduced the severity of the migraines at times. I would recommend it to those who can try it.

  • Ron
    5 years ago

    I’m in the same situation, it’s very frustrating but it seems there are no other choices at this time. For over 4 years I have been suffered from chronic migraine associated vertigo (vestibular migraine), I’ve tried most every remedy. It has taken me years to learn to live with this disease and try to be thankful anyway. It’s not an easy task for those of us who suffer from chronic migraines or the people around us.

  • unstablegirl
    5 years ago

    Emily,
    I have also been diagnosed with Chronic Migraine and have had the same migraine for almost 3 years straight. Your story has so many parallels to my own! Thank you for letting me know that I’m not the only one struggling through every single day with this condition.

    I only found Migraine.com a few weeks ago, and I would like to thank everyone involved. It has become an invaluable source of information and hope in my journey.

  • margaret
    5 years ago

    Hi Emily, I’m so sorry to here of your chronic migraines. I would say that I had chronic migraines but not on a daily basis as yourself with no relief. I can’t even imagine going through what you go through each and everyday. I am happy to say that I no longer suffer from chronic migraines thanks to the “Ontario Migraine Clinic”. You can read my story on “The article that changed my life”. I just want to give you some hope that there are things that can be done and to not give up hope. I pray that you will find your cure (whatever that may be). God bless and good luck to you!

  • slhart
    5 years ago

    It hurts me to say I can relate. I too have been chronic for years. Thanks for sharing and validating that this is real although I wish it were all a bad dream.

  • Tonya McDaniel
    5 years ago

    Wow..there are other people in this world that have migraines like me.. mine turned Chronic about 3_4yrs.. ago and the older I get the worse the pain gets.. there are days I wish someone would hit me in the hit to relief some of the pain.. lucky my family knows all about migraines I take after my dad he has chronic and cluster migraines . We have done all the meds and nerve blocks Botox .etc. nothing has stopped them or helps with the pain but ER shots or super pain. Meds and muscle relaxers and sleeping pills. So they have ruined my life.I live day to day. I wish all people would understand what I go through. But now I know I am not alone. thanks for sharing and writing so elegantly .

  • Katie M. Golden moderator
    5 years ago

    Emily,
    Your story was so eloquently written! I, too, love the spoon theory and have shared it with family and friends so they understand when I tell them I don’t have any spoons left. No apology needed.

    It sounds like you’ve gotten to the Acceptance phase of your Chronic Migraine journey. I wrote about the stages of grief and how they apply to Migraineurs- http://migraine.com/blog/you-have-a-friend-request/
    It’s not any easier once you’ve accepted the disease. Your attitude of not giving up is what is going to make you a survivor- don’t ever change that!

    Thanks for sharing your story.
    -Katie

  • Sarah S
    5 years ago

    I was diagnosed with chronic migraine almost 2 years ago. I remember that the pain started right after I finished my exams before graduating. I first thought it was the stress that caused the pain, but it took 3 months of pain before I was diagnosed with this illness. I recognize your story. I’m 20 years old and I’m a student at a university. However university-life isn’t something I can enjoy that much. Most of the time I’m so happy to be back in my safe room were I can feel the pain & don’t need to hide it. I often turn down invitations from my friends to go out, because I know that my headaches will start because of loud music or even one glass of alcohol. But I want to give you some hope because I found the right medication that made sure my headaches are getting better. I’m from Belgium, so I don’t know how the medication is called in your country but in Belgium it’s called ‘bisoprolol’. It lowers my blood pressure and actually made sure my headaches aren’t that frequently anymore. I suffer more from the aura’s instead. Nausea is experience almost every day together with seeing flashes of light or feeling lightheaded. But I can handle the symptoms better than I did the headaches. Now I’m more brave to actually go somewhere with my friends. I think it’s really about convincing yourself to be stronger, to not let the pain get you down. My friends think I’m a really happy person and even if I experience a lot of pain and I really feel sick, I keep smiling. I don’t want this to define me, because I’m much more than my illness. And so are you. I hope one day you find a cure that will make you want to do more than just hide in bed all day. I know at least one cure that is suitable for us all: finding your strength inside. Sometimes you just need to say: now I’m going to do that, I’m not going to hide. Once you’re out of your bed it feels really good (even when you’re still suffering) just to feel that you’ve at least tried to do more instead of hiding.

    (Ps.: I’m sorry if my English isn’t that good, I speak dutch so forgive me my spellingerrors 😀 )

    xx Sarah

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