The Migraine Burden

By darkangel5696

3 min read

What do you do when you feel pain everyday?
What do you do when it's mild pain, moderate pain or even severe pain?
What do you do when you have been feeling this pain for 11 years?

Most normal people would say go to the doctor and figure out what's wrong. Just as simple as that.

Well, what do you do when you have already done that a thousand times? What do you do when the doctors can't help you or when they can't figure out what's wrong with you? What do you do when you can get a diagnosis, but then realize that it's just genetic?

I could be talking about many things here, but I'm talking about migraines.

What do you do with constant neck and head pain? What do you do with constant fatigue? What do you do when you can't work? What do you do when you can't go to school regularly because you are stuck in bed dealing with pain and your only other option is looking like you are having a mental and emotional breakdown in class, when really your head feels like it is going to explode? What do you do when you can't take care of yourself? What do you do when almost everything that you do has the potential of causing you more pain and fatigue? What do you do with the time that you are given when you are unable to function like a normal human being? How do you live?

I wish that I could ask random people these questions without them knowing my condition at first and hear their true answer. I wish that the world would understand how hard it is to live with chronic migraines. I wish that I had the power to put this pain on someone else for just a minute and then take it away so that they would understand how it feels.

What do you do when you just have to accept that your life will always be this; will always be pain and struggling besides what life already puts you through?

I want....No, I need someone to tell me what to do. Tell me how I'm supposed to live like this. Tell me how I'm supposed to be happy with this burden. I am only 18. I may be an adult in some people's eyes, but I am still a child. A child without guidance from someone like me. I know how I'm supposed to live, according to the world, but how am I supposed to live according to myself and my individual life when I don't even know how and when I only know a way that is wrong for me.

I've tried telling myself so many things. "You are used to it," was something I always said to myself and others, but just because I'm used to it doesn't mean that it doesn't cause me pain. It doesn't mean that it doesn't bother me or tear me apart inside and out every now and then. It doesn't mean that I'm different from others, I just can't have the same lifestyle and I don't know how to have my own.

I feel like this a lot and I'm sure that I'm not alone, so I thank those who understand this. Today, honestly, is a hard day for me. I'm dealing with the before affects of a migraine right now and I'm just waiting for it to kick in. Because of this I started crying about it today becuase of how tired I am of having this pain. I do my best to be strong, but sometimes I just can't. Sometimes you just need help and support, which I rarely ever get when it comes to this part of my life.

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jennl Member
Hi DarkAngel6, Thank you so much for sharing this profound post with the <a href='https://migraine.com' target='_blank'>Migraine.com</a> community. You sound like a brave, strong, wise-beyond-your-years individual. As you mentioned, I am certain you are not alone in having the deep and important questions you ask in this piece. We commend you for sharing your thoughts and questions, and we hope you'll get some helpful feedback from the community. I thought you might enjoy some ideas from this article - <a href='https://migraine.com/blog/10-secrets-of-successful-chronic' target='_blank'>http://migraine.com/blog/10-secrets-of-successful-chronic/</a> - it sounds like you are already doing a ton of the successful practices used by other successful chronic migraineurs, and I hope you are very proud of yourself for that. Specifically, I thought you might like the idea mentioned at the end, of finding a mentor. You may have already tried that, but figured I'd mention it just in case. It is so wonderful and admirable that you reach out for support via this website, and we do hope that you can also find some in-person support as well. I know you've very likely tried these already, but perhaps there are local support groups, counselors, or medical professionals in your area that can also provide the support you so deserve. Warm Regards, Jenn Lebowitz (Community Manager, <a href='https://migraine.com' target='_blank'>Migraine.com</a>)
1. darkangel5696 Member
 I have no idea why, but I was just replying on this and the comment loaded as either a comment to Deb or a comment on the story in general. I have no idea why this happened because I was replying on your comment exactly. Site mess up maybe? Either way. What I was trying to say to you is at the bottom. I'm so confused haha.
2. darkangel5696 Member
 Or not. Sorry, dealing with migraine symptoms right now and got confused. Anyway....
emurphy520 Member
Hey, I just wanted to reassure you that you are not alone. I know it is very hard to be so young having to go through chronic migraines and pain most days then none. It strips your childhood away. I have had migraines since I was 5 but started getting them every day about age 16. I am now almost 23 and it's still a constant battle. Pain really does make you stronger. It molds you into a better person. You are much more compassionate towards others since you are going through something yourself and you can touch other people's lives and make a difference by simply just being there for someone else. Also it makes you grow up quicker and for years I thought it wasn't fair. Now I'm finally able to live on my own and in college almost done with my bachelors, and I am able to not give in to the usual mistakes of being a college student and I know what's important in life. You have to live fully on the good days and push through the bad. The best advice I can give you is to go to a migraine specialist even if you have to travel to get there (that's what I do) and find the best treatment plan. After many many years, I found that Botox and other meds helped me the most and I'm down to about only 15 days out of the month that I have the debilitating migraines. Make sure you can feel comfortable with your neurologist and that you get to know them. That will really help you be able to explain everything to them and they can find the best option for you. I also go to a chiropractor to help with the back and neck pain. He also specializes in migraines. I'm sorry this is so long but I just hate seeing people in the mind set that i was stuck in for so many years. My last advice to you is to find a support group if it's in person, on facebook, or looking up hashtags and finding other people with your condition(s) on Instagram to follow and make friends that will help you push through those days where seeing the light at the end of the tunnel seems impossible. This is what helped me the most coping with my chronic pain illnesses. Again, sorry for this being so long and probably doesn't make too much sense, I have a terrible migraine at the moment, but keep your head up and know you are not alone. -Erin
1. darkangel5696 Member
 Thank you for commenting! It does strip your childhood away and it doesn't help when other circumstances push that process further. I was 16 when my boyfriend told me that I act like I'm 30 and he is acting like a teen like he should be. I was forced to grow up too fast. I have, surprisingly, taken into account the things that migraines have given me that are good, but the bad outweighs sometimes. It is a constant battle. I am actually going to a neurology doctor for the second time. When I tried before I was there for a few years and then I just stopped going because nothing worked. Now I'm trying again. They have recommended botox, but I know what it does and why it helps and I don't feel that the treatment is safe in the long run. As of now I'm trying to open up more to my mom and my boyfriend, being the two main people in my life, I feel it's time for me to stop acting like im used to it and showing them how bad it really is. If they don't understand that, then they won't understand how hard it is for me to actually try to function normally like I do. I need to stop being silent and say what I'm really feeling everyday because of this illness. Thank you for the support and don't worry about the comments being too long. Just say what you want or need to say and I will appreciate it no matter how long it is 😀
jennl Member
Hello again DarkAngel6, Just posting here again to say that, in addition to the comments on your story here on the page, you might also want to check out the comments you're getting on the Facebook page, where your story was also posted. Here is the link: <a href='https://www.facebook.com/MigraineDotCom/posts/995305240498018' target='_blank' rel='noopener noreferrer ugc'>https://www.facebook.com/MigraineDotCom/posts/995305240498018</a>. Hope this provides comfort, relief, and the knowledge that you are certainly not alone. Thinking of you! Best, Jenn (Community Manager, <a href='https://migraine.com' target='_blank'>Migraine.com</a>)
1. darkangel5696 Member
 I really appreciate that! You have no idea. I was extremely surprised to submit this story Tuesday night and then woke up on Wednesday morning to see that my story was on Facebook for everyone and anyone to see. It really did make my day 😀 and the comments that I have seen so far are great. I was also wondering how I was ever going to keep up with it, but now I know. Thank you so much! 😀
oddrianna Member
Hey there, I've been exactly where you are and some days I still find myself in that dark place. Having this illness is truly unbearable, but don't underestimate your ability to cope. I'm 23 now and when I was 18 I experienced everything you're describing. You will find ways to deal with this, you will find ways to lessen the pain and you will find ways to be happy even on your most painful days. The hardest part is accepting that your life will never be "normal," because it never will be. Personally, what has lessened my pain the most is stopping all medications and living a slow, organic, quiet, healthy lifestyle. For the most part I am vegan, with occasional red meat, and I never touch processed foods or caffeine. It takes time(years) to figure out what works for you but you will figure it out. I still get migraines everyday, but this lifestyle has allowed me to actually function. Really try to erase the word "normal" from your mind. You can't compare your life to those around you because they will never face the challenges that you do. Instead of listening to people's advice on how to get better or what treatments to try, ask them to just accommodate the body you have now instead of trying to fix you, because you are not broken, you just have to live differently. Also, take into consideration that medications can affect your mood, that was definitely a big issue for me.
1. darkangel5696 Member
 You are completely right! And it sucks because I know these things in my head, but sometimes it is hard to see it. I know that the kind of life that you live is the kind that I've always wanted to live. Just quiet, slow and healthy, but I am going to have to wait till I get older to be able to do that. I guess I just have to keep my head up as much as possible until I am able to do things for myself that I am unable to do now. Thank you for the support!
nic01e Member
I experience the same thoughts, feelings, and pain everyday too. I crave knowing there are others in my position. I too wish my family and friends just for a moment could feel my pain so they would truly know of my suffering. It's so hard to tell them, when they are trying to talk to you normally, about their day, and you are in excruciating pain. All I want is for the pain to go away so I can listen and talk and have the energy to participate in relationships the way I used to 3 years ago before I ever knew from this chronic life. I cry too and live in fear of another migraine. I fear the Imitrex will one day stop working and without it I don't know what I would do. I have so much anxiety once the pain comes because I know in a few hours I won't be able to walk or commute home from work. I sometimes take a xanex (lorazepam) with the imitrex just so I am more accepting of the pain and don't get frustrated by it or try to fight it. I take Epsom salt baths which are somewhat helpful but don't take away the pain and I lay with an ice pack on my head and just wait until the imitrex and cold pack numb out my head. I have found extra strength Tylenol works to ward off the headache when it's just prodromal. I found Botox was effective in reducing severity and makes the Meds work better. I am working on trying to relax myself when I feel the pain coming on each day. I hope to be able to stop the pain from escalating. Sometimes you just need to listen to your body and ask it what it needs? Does it need to step away from the computer or the stress? Does it need some food or water? Anyway. Thanks for sharing. Feels good to know you all are out there struggling with me. I wish it wasn't so.
1. darkangel5696 Member
 I understand completely! I hope things continue to go well for you with your migraines. I've tried imitrex and many other things and nothing has helped so far. Tylenol and ibruprofen are the least helpful medicines for me. And I have had people suggest botox for me, but I just can't bring myself to be comfortable with the idea of that yet. Until then I will keep trying medicines until I get tired of it again. I wish none of us had to deal with it as well.
winifred53 Member
I certainly do feel for you. I, too, am a chronic migraineur and a very "Young" 61. I would like to give you some tips for dealing with the daily confusion/pain of migraines. 1. Put yourself first. I know it sounds selfish but you have to do it. Don't feel guilty, either. You are the only person who knows exactly how you feel. Every migraineur is different and even though we can say we know how you feel, we really don't. Only you know how you feel. If someone asks what it feels like I've found the best answer is "imagine someone constantly driving a railroad spike into your head." that usually gets their attention. 2. Keep a journal and find your triggers. This is a life saver for me. Alcohol and Weather changes are my only two triggers. One I can control; the other I can't. 3. Surround yourself with friends who understand. Not ones who pity you. You'll find they are much better friends in the long run. 4. Put yourself on a fixed schedule. Constant sleep schedule is important. Set meal times are important too. If I'm craving something, I eat/drink it. My body usually tells me what I need at that moment. 5. Accept the fact that you are what I like to call "unique". I get my greatest ideas and am most creative during migraines. Try to discover the "pros" of your migraines. Sometimes it's like trying to see the forest in spite of the trees but they are out there. 6. Never give up looking for what I call the "brass ring". I've been on medications that have given me really bad side effects (I have a lot of drug reactions/allergies) but I keep going, trying to find the elusive elixir that will bring my migraines under control. I know I will never be rid of them but one can always hope. Good luck with your journey. Get to know migraines inside and out. <a href='https://migraine.com' target='_blank'>Migraine.com</a> and research on the internet has been a life saver for me.
1. darkangel5696 Member
 Thanks for all the tips and support! I'm sure quite a bit of them could help.
kacimo Member
I know I'm a little late to the conversation, but your story really resonated with me. I'm 27 and have had daily migraines since I was 16. The past 11 years have been like a roller coaster of ups and downs and the last two months I've really taken a turn for the worse and have been feeling all those things you've been feeling. So, first of all, know that you are not alone, friend. This "burden", as you call it, can be so isolating, but I've found that being open about my frustrations with the people who love me sort of eases that burden a little. Sometimes it helps to just have someone cry with you. It's really hard to see on the bad days, but when I'm not in a fog, I can see how much this experience has changed me--my priorities, my perspective, my ability to love others--and as strange as it may sound, it's allowed me to be thankful for it. I do hope you find relief soon, but I encourage you to try to find the good. It makes the bad a little easier to swallow. Also, as someone else mentioned, I really encourage you to try to find a headache specialist, not just a neurologist. I've seen several neuros and am seeing a headache specialist now. Neuros will just throw anything at you and eventually write you off because they don't know much about migraines. My headache specialist takes every symptom and every concern seriously and always says there's something else to try. He's much more determined to get my migraines under control. It's validating, and I've improved much more under his care.
1. darkangel5696 Member
 I understand completely! To be honest, I have tried to be open about my migraines to my few family members, but they don't seem to understand. Even my mother, who had migraines at a young age, says that I'm making excuses every time I try to explain. So, again, I've learned to just keep my mouth shut about it
2. darkangel5696 Member
 The only two people who understand are my boyfriend and my new friend who I found on this site only a few months ago. I'm glad I do have them to understand though because if I didnt, then I don't know how I could handle this the way that I do. I also took your advice to see a headache specialist. I talked to my mother, who is a nurse for Duke, to see if she could set up an appointment for me to see one soon. I'm hoping it works out well. Thanks for the support and the advice 😀
95x46d Member
I ask myself the same questions all the time. I do not know how I have lasted this long. Yes I do...my daughter. If I didn't have her I would not be here. She is the only person that keeps me here. I have been living with daily headaches for over 30 years. It is getting harder and harder to stay. My headaches have been getting worse and there are days I wish I could just go to sleep and never wake. But, here I am. I don't know why after all this time but I guess there is still a glimmer of hope left in me. A hope that one day I will have at least one day with no pain. Just one, is that too much to ask? I totally understand where you are coming from. Keep hoping. Keep going.
1. darkangel5696 Member
 My mother has cancer and she says that my sister and I are the only things keeping her here sometimes. So, I understand your daughter being such a precious thing in your life. I have days where I wish I could just go sleep and not wake up as well. The thought can sometimes seem more pleasant than waking up to another day of pain, but I believe that I do have that glimmer of hope in me as well. Even though it seems hopeless a lot of the time I just can't give up. I wasn't raised to give up. So, I wont. Thanks for commenting. The support is greatly appreciated 😀