The truth about chronic migraines

People think that the worst part about migraines is the pain, and they’re right. It is, mostly.

Here’s something I haven’t shared with my friends or family. I don’t want to worry them or bother them. It’s just, a fact of life for me suffering from chronic migraines.

The worst part of the migraine is the pain as well as other symptoms, yes, but it’s not the daily struggle of migraines. Eventually (sadly) you just get used to the pain every day an not knowing what to do about it. The actual worst part is the damage that the chronic pain wreaks across your emotional state.

I’ve always had a foul mouth, there’s no issue with that, but since the chronic pain it’s gotten worse. I’m just in a bad mood all the time. How can you not be? At some point it feels like your own body is betraying you. People try to throw miracle cures at you. It’s entirely frustrating enogh to just be in pain, but everyone either tries to “fix” you, as if you haven’t already tried everything out there, or they try to undermine what you go through, “It’s just a headache.”


Along with the constant bad mood on your “good” days (ie you can function even with the pain). The bad days are WORSE. Because you know why? It’s the worst pain you’ve ever felt. You can’t handle it. You can’t hold down food. You can barely get up. Even a completely dark room is too bright. You want nothing more to go out and be “normal” but you’re in too much pain. Your friends and family think that you hate them because you never hang with them anymore. This lasts for HOURS or DAYS or sometimes WEEKS. You feel so helpless, and what happens? It wears at you like sandpaper until you can’t handle it. Yes, that’s right. You experience depression. You don’t want to live in this state anymore. It destroys your emotional psyche.

What’s worse is when the bad migraine goes away. You may have a good day for a bit with no pain at all. It’ll be wonderful! Well, you’d think, but after having those “bad days” enough times it ruins the chances of a good day. Even without the pain, you’re just counting down the days until it happens again. Living in constant fear of it happening again. After a few days, you may even get your hopes up. Think maybe it’s gone. You’re cured! You don’t know how, but who cares? Right? And then the pain hits again. You’ve never experienced you mood go from so high to so low in one swoop. It almost breaks you. You hate yourself for getting your hopes up like that. You wonder what you did to deserve this. You wonder if this is your fault. And each time that happens, you just learn a little more to stay in that down state of mine. That depressed state of mind. Because it’s only going to happen again, why get your hopes up?

The problem with chronic migraines isn’t the pain or other symptoms. It’s the mood swings and depression. Having that chronic pain damages you, and no physical pain can ever compare to a worst pain ever migraine. Part of the pain is not even knowing what’s wrong or how to fix it, you learn to really hate your life. That’s the truth about migraines. That’s what I, personally, wish I could tell people when they tell me it’s just “another headache”, “Not that bad”, or “not a real illness.

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 (27)
  • Macbeck
    1 year ago

    I wrote the following after a former classmate took his life, but it applies to living with migraine as well, not just depression by itself:

    When you hear of a suicide, someone invariably says “but he/she looked so happy.” Well, please allow me to give you some insight from the point of view of dealing with depression most of my life. When you are depressed – SEVERELY depressed – you are incapable of considering anyone else, and for a Christian we can’t even look to our Lord. Remember, we are talking about severe depression here! YOU are all you can see or think about. Looking happy? That’s because it’s expected of us. So as we open the door to go out or to let someone in, we lift a mask of happiness into place because… well, because everyone expects us to be happy, so we “are”. Let me tell you, folks, that mask gets awfully heavy, and the deeper the depression the heavier that mask gets. There is no feeling like closing the door on the world and being able to take that mask off because you are able to breathe again.

    So when you see a friend, it’s okay if the conversation goes like this:
    “hey friend, how are you doing?”
    “I’m okay” or “I’m fine, how are you.”
    “OK, so tell me how you’re REALLY doing?”
    Maybe it will be enough to help us open up, maybe it won’t. But at least you will know you tried.

    Please don’t worry about me; I’ve learned to leave the mask off 95-99% of the time. These days if I’m wearing a mask it’s because of a migraine, not depression, and close friends & family can see the mask & know it for what it is. I’ve learned to reach out when depressed or even just down, but it’s not easy to get to the place where you can. Love us, be persistent with us, because sometimes knowing someone cares is all we need to start seeing hope again.

  • Crystal
    2 years ago

    This is exactly how I feel. Sorry to say that I’m glad I’m not alone. Sorry we are in the same boat. The depression is overwhelming. Sometimes it’s hard to tell which is worse the actual pain or the depression. I miss me. I miss my life. And I keep telling myself there are people worse off than I, but I can’t help how I feel. Misery absolute misery.

  • Joanna Bodner moderator
    2 years ago

    Crystal,
    Do not feel bad saying that you are happy that you are not alone! Knowing you are not living in this battle and struggle solo certainly provides comfort and that is absolutely understandable. I thought I’d share this article which discusses Depression, Migraine’s Unpleasant Cousin.Please know we are always here for support & feel free to reach out anytime. Warmly, Joanna (Migraine.com Team)

  • GardensatNight
    2 years ago

    You put into words exactly what I have been struggling with for months to verbalize, thank you. I have been getting sadder and sadder, more and more overwhelmed. My first two rounds of botox went well and I had some really good days mixed in with the bad, enough to make them tolerable. The third round… don’t know why I’ve hit a bad patch, but I keep having migraine after migraine and I can’t explain why. I’ve had chronic photophobia for 2.5 years now… mine is so bad that any man-made source of light triggers a migraine. I haven’t been able to drive for over a year, haven’t been to a store in 1.5 years. The only place besides work (I work alone in a natural light room) that I go is when my husband takes me to doctor’s appointments blindfolded. We can’t turn on any lights in our house. No tv, movies. I’ve eliminated every known migraine triggering food and then some since I got sick. I can’t go outside if it’s sunny. My family doesn’t understand why I’m afraid of their house because they’re just so forgetful no matter how many times I remind them they have to warn me before opening the refrigerator or the front door. I end up having horrible anxiety any time we’re supposed to see them. Every time I get used to this disease and think I can handle it, it gets a little worse, and it’s just plain scary. We’ve gone to multiple neurologists, to a headache specialist, and to multiple neuro-opthamologists. I wish someone could fix me :(. Anyway, thank you for putting into words why this disease is so awful. I can handle the pain. I’ve gotten used to the pain. It’s the hopelessness that’s so debilitating.

  • faeriefate author
    2 years ago

    Oh, yours sounds so much worse than mine! I’ve missed fun events with friends and family from migraines. When my sister had a graduation party I had to go upstairs and hide because I had a migraine. Every little noise hurts. Every little source of light hurts. Showers help, but the light in my bathroom is far too bright even with curtains! It’s horrible.

    Having chronic migraines most of your like (I’ve had them since I was 10) REALLY gives you time to think about why you feel this way. I’ve also went to a psychiatrist for unrelated reasons for a logn time, so I’m very much used to the whole “figure out why you’re depressed rather than wallow in your depression” thing. It’s made it a LOT easier to pinpoint where most of my issues stem.

    Like you, I’m afraid to go out. My mom’s and dad’s houses are safe scent wise. I was in the car with a different sister and her perfume almost triggered a migraine. I went down the hall yesterday, and a perfume sprayed in there would have triggered a migraine had I not been having a good day (which are few and far between). It’s especially bad if it happens after my medicine kicks in. Because then it just triggers another level 10 migraine and I can’t take my medicine for another 6 hours.

    The migraine sucks, yes, but it’s not the migraine that gets you. It’s the constant state of fear. It’s the fact that I have to buy frozen dinners to keep in my fridge for something light to hold down when I have a migraine.IT’s the fact that I’m judged for wearing my sunglasses inside a store because I have a migraine. It’s the fact that people assume it’s just a a pain and don’t work with you. IT’s the fact that your friends think that you’re lazy and therefore don’t want to be around you anymore. It’s the fact that people think you no longer care because having migraines so aften makes you rarely attend events, and when you do you may have to leave early.

    As I’ve said, I’ve had chronic pains before. Hell, I’ve even had insomnia for a few months. Nothing really compares because most things are easy. You either have it or you don’t. With migraines you also have to worry about triggers and lost time.

  • DonnaFA moderator
    2 years ago

    Hi UsedtoGarden, thanks for being part of the community and sharing your thoughts. I’m sorry that you are struggling. I just wanted to let you that you are not alone. We’re always here, and on our Facebook page to lend a friendly ear when you need support. -Warmly, Donna (Migraine.com team)

  • Pam
    2 years ago

    Hi faeriefate, I’m going to a head pain specialist that people come from all over America and Canada. They have been had life changing effect on me. My last neurologist told be she didn’t know how to help me anymore. My internist said they might figure it out in 5 years but medical science just hasn’t figured it out. When I went to MHNI they offered me a sliver of hope. They do a lot of migraine research. She told me that she wouldn’t stop trying until she found an answer. I didn’t have any hope since last December. I found out that I have two different kinds of head pain. One was Cervicogenic headaches (CH) and migraines. CH can cause migraines but the cause of CH is from the neck. She changed my anti-seizure medication because I was on the other one for 13 years. She put me on an anti-inflammatory medication. I was doing PT for 3 months. She recommended an elimination diet. I had several I knew of before I went. I found out that keeping gluten out of my body helps a lot. Also, sweet potatoes gave me migraines and grapes made my whole body hurt. She has me eating organic to keep chemicals out of my diet. Plus I don’t eat any food without knowing each ingredient. Organic processed foods have less strange ingredients. It was a lot of work in the beginning, but having chronic migraines steals more of your life. In the first week, my vertigo went away (9 months of constant dizziness). And my head pain started to decrease. It’s been 3 months and small increases in medication. I went 10 days without any head pain. I am having slight head pain (2 out of 5) for the last three days. But I saved my abortive medication for New’s Years Eve. She noticed that I tend to get migraines when I’m ovulating. They had me talk to a pain psychologist. It was great talking about the stress involved with chronic pain. He also helped me deal with a stressful extended family issue. Every time I go I learn something about why my body does things. I have Fibromyalgia too and all this has made that condition better. Some days I have no pain with any of the conditions. I know it’s a long wait but just know that you could have less head pain by April. Good luck!

  • nrsrcht
    2 years ago

    I’m glad you are having such good results there, I wasn’t so lucky as the doc I was assigned to was not helpful, very condescending towards me. I did see another doc there where I received a couple of nerve blocks and a rhizotomy. Nothing helped.

  • Kristy
    2 years ago

    It’s so nice to hear that I am not alone. The holidays have been very trying. I have a 16 year old son, who doesn’t quite understand that I may only have or had one day to shop because my body finally allowed me to do so, although because he wasn’t up to it we only made it to one store. Total failure. So Christmas Eve and day, no presents…well I felt horrible but I couldn’t get out there and shop, Migraine wouldn’t let me. And I always push myself to much and make things worse, but crowds and driving are a different story and don’t mix while migraining. I often feel worthless, a failure, stuck in a dark room in bed with my ice pack. Pondering what to take, what not to take, anxious, rebound headache fears, nausea, numbness and blurred vision from the side effects of my preventatives that I don’t think are working but I am patient enough to give them another try. I have no life, even watching TV hurts.

  • faeriefate author
    2 years ago

    The link for Migraine doctors in the area that Donna shared is friggen amazing. Since I’m still on my mom’s insurance, I just sent her a list of doctors in my area. Most if not all were on her insurance. One of them is like super impressive where people come from all over the world for appointments. Though the appointments take months before you can come in (been on the waiting list for 2 months now). If I don’t get an earlier appointment via waiting list, My appointment is March. Sucks, but meh.

    And I know the feeling. I walked into a store because my sister wanted something from there. I was in charge of remembering the thing, and I wanted something from there. First walk in, strong scents. I’m like, “Shit.” After five minutes, I’m like, “I can’t do this.” Yes, my migraines prevent me from going into certain stores that people want things in because of the smells. I can’t get my mom body spray like I used to because the smells in the stores I went to are triggering. I had to get my mom to get something for my sister on her list because I couldn’t walk into that store. There are 2 stores with similar names, one with triggering smells, and one without. Every time they go to one and ask, I have to confirm it’s the one without the triggering smells like five times before I leave. Plus, as if stores aren’t bad enough, some stores have more or stronger scents due to over-spraying of test perfumes or hell if I know what. So I walk into a store I normally shop at for myself, and I’m almost unsure if I can stay in there because of the scent. It’s bad. Luckily I had someone there in case I had to stay outside.

  • DonnaFA moderator
    2 years ago

    Hi Kashley72, I’m sorry that Christmas was so rough. You’re absolutely not alone. I am a huge online shopper, both because the noise, flashing, smells (cinnamon gets me in a heartbeat), heat get me with migraines; and because I have anxiety disorder and the crowds put me on edge.

    I wonder if you have a doctor that helps you feel heard? If not you may want to read Is It Time For a New Migraine Doctor? which can help you connect with a headache specialist in your area. We’re always here to share support. Sometimes it helps to have someone in your area. You may find Top Places to Find Support with Living with Migraine helpful in connecting in your local area.

    We’re glad you’re here. -Warmly, Donna (Migraine.com team)

  • faeriefate author
    2 years ago

    Thank you for everyone that my story helped. It feels so surreal that people feel the same way I do. It makes me feel less like a bad person for having a bad day or being so short with people that aren’t supportive in my struggle.

    Also thanks to whoever put all of those links in my article. That help too! It’s so weird. From an objective standpoint, on the outside looking in, you think it’s just pain. I hurt all the time. I have a bad knee. I go to regular chiropractor appointments for my back that hurts so bad I can’t lay down, sit down, or even walk. Yes, I’ve had my share of chronic pains, but nothing really is quite like a migraine pain. It really feels like a pain that kicks you while you’re down.

    I hope you all are well! I hope my story helps you more than makes you cry (my stories of my struggles always make me cry). I’m glad that the word got out and people reading this may understand that migraines aren’t just about pain. It’s about a daily struggle, even on the good days.

  • nrsrcht
    2 years ago

    The response about scents really hit home, I worked (at a hospital!) where it was posted no perfumes and ended up having to fight co-workers who said they weren’t wearing perfume, only lotion! Another annoying thing is the perfume and cologne samples that seem to accompany every ad that I receive in the mail and I don’t want to even start on the stores that have their cosmetics right at the entrance.

  • mrst53
    2 years ago

    I think it’s the not knowing of when a migraine is going to hit, that is depressing for me. I can’t plan anything. Then there is the lost hours and lost days because after the migraine, there are the lost hours when you have trouble thinking and feeling exhausted. I am then behind in my housework and feel like I can never catch up and always feel behind. My husband has severe depression and PTSD from Vietnam, so I deal with that too.

  • aks868
    2 years ago

    OMG! I thought I was the only one! Also, the good days come so few that you are so tired, it’s hard to make the most of them and then when you do, everyone tells you not to overdo it and that the next migraine is because you did too much. There is just no winning. And then, there are so many things you are supposed to do to keep the migraines at bay that the list is just exhausting and you feel like, why bother?–which of course just makes you feel guilty if you get a migraine, because if only you had done those things then you would be living your life. It’s a vicious cycle–but sometimes I do break out of it and then the light shines — without hurting my eyes! I think in the middle of all the anxiety, depression, worry, and guilt, remembering those moments and trying to build on them are what keeps me positive and hopeful.

  • CynRosie
    2 years ago

    Thank you so much for writing exactly how I feel almost every day. I love this site, it to know that I am not alone in my suffering but also heartbreaking to know that there are so many of us still suffering with no end in sight. I have been cursed with chronic migraine since I was 10 years old and they have only gotten worse over time.
    And to John1381 who posted on Dec.26, I’m with you…if it weren’t for my cats, I wouldn’t be here today either! Bless all of you for this site!

  • John1381
    2 years ago

    Thanks CynRosie, animals really help keep me going. When I feel I can’t go on I look into Hectors big eyes and I know I need to stay to care for him. Bet your cats have the best life!

    Thanks to all for this site, its really helping me through a rough time.

  • Joanna Bodner moderator
    2 years ago

    Hi John1381,

    It is certainly members like yourself who also help many other members through their difficult times as well! Thank you for being here and taking the time to share such kind supportive words! It truly is amazing the support our furry companions can bring and I am so happy to hear that you have one by your side too.

    Thanks again & wishing you a gentle night.
    Joanna (Migraine.com Team)

  • Sylvia T
    2 years ago

    Thank you for your honesty! It helps me a lot to know that I am not the only one struggling! Take care xx ❤

  • John1381
    2 years ago

    Thank you for your blog, I completely agree and this blog and the others on this site have been so important in helping me understand and validate the terrible, confused thinking that is part of this hidious disease. So sorry for all who are struggling.

    Also Tamara, I don’t think I would still be here if it wasn’t for my beautiful rescue dog.

    Take care all.

    John.

  • DonnaFA moderator
    2 years ago

    Hi John1381! We’re glad you enjoy the site and we’re so glad that you’re here. We’d love to see a picture of your pup, and to have you join the conversation on our Facebook page. -All Best, Donna (Migraine.com team)

  • Jojiieme
    2 years ago

    Just want to say YES to everything written above, and below – and this is from ‘Pollyanna girl’ with the B-positive blood group. Sometimes you just can’t find the oomph to be positive for another day…
    (Thank goodness it’s raining now!!!)
    Wishing everyone a migraine-free festive season – at least one day!

  • daisymay2
    2 years ago

    I cant agree more!its the most miserable disease,never knowing when it can strike and living in fear all the time, it makes me so depressed and throughly miserable i just want to be normal

  • Brooke H moderator
    2 years ago

    Hi Daisymay2,

    Thank you for taking the time to share your experience with migraine. I’m so sorry you’re feeling weighed down by the emotional struggle that can accompany migraine. It is not uncommon for depression to go along with migraine. I thought this article may be of interest to you: https://migraine.com/blog/breaking-through-the-darkness/. Please feel free to come here anytime for support as well as to reach out in real time for the help you deserve, through support groups, a good friend or counseling. We’re so glad you’re part of the community.

    Best,
    Brooke (Migraine.com team)

  • Not-Again
    2 years ago

    Hello Faeriefate – I completely get your story as I am living it. I appreciate your honesty and the truth and rawness you use in sharing your story. I hope you tell your story, unedited, every chance you get because people need to hear it. Our emotions are so battered by the physical pain. It’s a cruel cycle of being beaten down by the physical pain that my emotions can go very dark, very quickly. As bad as you feel all the way around, I am better for having read your story. It validates mine in a great way and I thank you for that. I don’t want people to suffer like I do, but I am glad I am not alone. It makes this broken road a little easier to walk down.

  • Tamara
    2 years ago

    Omg I could have wrote every since word of this article. I have found a couple things that have helped a touch but it is a constant struggle. Definitely need a psychologist and regular appointments, and depression meds first (which took a while to trial and figure out what would work while and not interact with the migraine meds). Church and community is a big help as well.

    Vitamin D has been my saviour, it has been the number one thing that is helping keep my mood stable. 10 000 IU a day and we are checking my levels in a few months. EFAs (salmon oil, flax seed oil, chia seeds, fish) are also important but my stomach won’t tolerate them.

    I also have to have things that keep my life meaningful every since day, this is my animals. I have created a zoo in my house – 2 cats and 2 cages of rodents that I love. I also started fostering dogs because it really helps the heart to be the reason a terrified skinny dog with no house skills turns into a wonderful house pet and is happy. Animals live in the moment so it’s a reminder every time I look at them.

    Im with you in spirit and those darn chronic migraines!

  • Joanna Bodner moderator
    2 years ago

    Dear Tamara,
    What a wonderful reply! So supportive…thank you!! You are contending with so much and it sounds like you are taking some great positive steps to maintain a healthy emotional state. I just LOVE hearing what a big heart you have so sweetly foster dogs! That is amazing! I am sure it is an enormous amount of time and effort, but what a nice distraction. Thanks again! -Joanna (Migraine.com Team)

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