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Living with Migraine

Migraines effect every aspect of my life… How do I find a balance

  • By nikkimallory

    Hello! I have visited this website countless times looking for any answers, advice, or to just read how others handle it.

    I am 30 year old woman. I have had migraines since I was 9 years old, they were classified as chronic migraines when I was 19 years old. As I’ve gotten older they’ve become more frequent and harder to get rid of. I had to quit my job about a year and a half ago to move back to my home state and move in with my parents. The migraines got to be too much to handle especially working full time job and being a part time student, I simply couldn’t do it on my own. I’ve tried pretty much every treatment that I know of;so many preventive meds that it would take too long to list, chiropractor (on more than 1 occasion), acupuncturer, a complete change I diet, iv infusions that were done over a 3-5 day period (this has also been done on more than one occasion), and the newest to the list is botox.

    So far the best treatment for me has been the botox. However it hasn’t helped enough for me to be a full functioning person. I’m still a part-time student (online there is no way I could make it to class consistently) and I was lucky enough to find an employer that let’s me come and go as I please depending on the Migraines (I live in very small, close-knit town). I haven’t been to work since the 5th of January. I’m stuck in a vicious cycle that consists of; migraines that stress me out and then stress intensifies the migraine. I find myself getting more and more frustrated as this cycle goes on. I’m trying to accept that they will likely remain a factor in my life but I’m having hard time with it.

    I’m getting ready to graduate with a bachelor’s degree this year, and I can’t help but wonder if I’ll ever be able to use it. I’ve lost so many things over the years because of this! I got divorced (not entirely the migraines fault but a big factor nonetheless), I’ve lost friendships, missed out on promotions, missed out on vacations, stopped trying to find a significant other, and I’ve come to be known as unreliable. I do have an awesome family that tries to understand and help anyway possible and the friends I have now are very special to me, they don’t make me feel bad when I have to cancel plans, instead they say, “just feel better, and don’t worry about it”. I realize how great my support system is but it doesn’t change the fact that I feel guilty when I get a migraine.

    I know there are so many people on here that can relate to this. My hope is that someone might read this and give me some suggestions on how they deal with it… Especially the guitar part. It’s definitely overwhelming at times… I’m too critical of myself sometimes, I feel like I should have this under control because I’ve been dealing with for over 20 years.

    Any thoughts, ideas, and/or suggestions are greatly appreciated!

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  • By Nancy Harris Bonk Moderator

    Hi nikkimallory,

    One of the first things we wonder about when someone has chronic migraines is whether they’ve been to see a “true” migraine/headache disorder specialist, not just a neurologist. Neurologists may be fine doctors but have a difficult time being experts in one area because they treat so many different conditions like multiple sclerosis, stroke, epilepsy and others. Migraine/headache disorder specialists are experts who are board certified in headache medicine and treat patients like us with migraine/headache disorders only, all day, every day. Let me give you some information on how migraine specialists are different; https://migraine.com/blog/how-are-migraine-specialists-different/. To help you find a migraine specialist, take a look at this link; https://migraine.com/blog/looking-for-a-migraine-specialist/.

    Do you happen to know what any of your migraine triggers are? Migraine trigger identification and management is a vital part of our migraine plan. To make this more complicated, once we think we have our migraine triggers figured out, they can change over time. So if you haven’t kept a detailed migraine diary in a while you may want to do so. Here is information on a how to keep a migraine diary: https://migraine.com/blog/keeping-migraine-diary-basics/.

    Do you by any chance take something every day to relieve your migraine/headache pain? One problem many of us can run into is called medication overuse headache, moh which was formerly called rebound. Moh can occur if we take migraine abortive medications and/or pain relievers, whether they are over-the-counter or prescription, more then two to three days a week. If we have moh our migraines will be more difficult to treat and we can end up in a daily cycle of endless pain equally hard to break. Here is information on moh; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    Let me know what you think,
    Nancy

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  • By melindas

    I also have lived with migraines since age five….but LIVING WITH MIGRAINES has to become your outlook or you will always be a sufferer. I have spent lots of days in bed, but I totally make up for those days when my headaches aren’t that bad. You have to learn to be satisfied with what you can do and let go of the things you can’t. It really is just that simple. One piece of advice I would give is to find a migraine specialist(I know that seems difficult, but one does exist) and keep a migraine diary. I found a great migraine diary on amazon.com….it really helps me track my symptoms, triggers, the weather, my meds, my food and how I am feeling. While having such a migraine life sometimes it is really hard to keep track of those things because I feel like my memory is failing me. Try your best to become a person who LIVES with migraines…it takes some work and major changing of your own mind. Don’t forget though that only another migraineur will understand you, so don’t stress about those people who don’t.

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  • By kischrjo

    Nikkimallory:

    Like so many others who frequent these forums, i too read often looking for ways to improve my quality of life. I have been a migraineur for 43 yrs. i know my triggers and they include many medicines, weather barometric pressure changes, foods that contain sulfites and preservatives, processed meats, aged cheese, alcohol, especially any alcohol beverages you can buy at a grocery store, stress, extreme weather or temperature changes and a ruptured cervical spine with additional bulging discs. A lot of these are things I cannot fix or change like weather. I also suffer from auto-immune disorder, osteomyelitis and extreme gastrointestinal diseases. The minute I am able to get one disorder under control I have a flare up of other diseases. It is a daily battle emotionally to deal with the sickness and the chronic pain.

    I pray many times a day to get through it. I am allergic to so many of the meds prescribed for migraine including pain meds. I too lost my job over a year ago and that was devastating and added the stress of financial hardship. I do have a migraine specialist and if I wouldnt have found him I might not still be here to tell my story. I have been hospitalized 3 times this year for a week each time and on one occasion I was septic and my organs were shutting down. BUT I lived! And now I do whatever it takes to make it each day. I love my family and friends so very much and feel guilty for the stress I put on them, but I had to get to a place in my heart that I know I dont do this to myself and I cant do anything more than I am doing. My family is terribly hurt when they watch me suffer. Like others, they can tell by my voice and my eyes that I am hurting, even when I think I am doing a great job of covering or lying and saying im fine they call me out on it often.

    My advice for myself is to plan as much as possible ahead. I know it is coming by the way I feel. The strange visual changes- like black or white spots in my vision. Dizziness, nausea, and memory issues, verbal difficulty, trouble concentrating, irritibility and then the pain. So I do the important things and everything else (laundry, dishes, cleaning or driving) are put on hold. I have to take care of Me. Ice packs, light meal, (to coat my stomach so pills dont flare my other conditions) heat pad, water, a comfortable dark place as quiet as possible. My medication within reach, I have eye mask and ear plugs too. (My family is very noisy!). If able I take a hot soak before heading to bed and although many scents irritate, i have found 2 that sooth me. I use it while in the bath and I practice biofeedbak and imagery. I would be happy to share these methods if you are interested. A university professor taught me these techniques when I was 17. This is complicating because it is so individual but I have had over 40 yrs to practice. I dont ask for help often so when I do, the people in my life that love me know it is serious and will do all they can to help me.

    Lastly,

    I suggest you find several responses or stories that are most similar to your circumstances on this website and have your family/friends read them. They may learn how to help you, even if it is just the small things. I try regularly to use the great information you find here to help myself and others to understand what it is like to deal with migraines. Good Luck

    Kischrjo

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  • By mheadacherelief

    I am also facing same problems with migraine. From my personal experience I must say migraine its only a bad health condition nothing more than that. If you always thinks that whatever bad things happens on you its because of migraine then nobody can change your thinking . So, first change your thinking. And in this big world no man is perfectly living as you thought. Every people having problems either the problems like you or other but it does not mean that they are not happy with their life. So, why are you thinking like that? Whatever bad things happens on you I know its very bad experience of life but for that reason you cannot destroy your life and also not blaming your migraine . So, do your best. Join work again and side by side also doing your course .

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  • By Kerrie Smyres Moderator

    The book How to Be Sick is an incredible guide for coping with the emotions of chronic illness. Many of the “lessons” are rooted in Buddhism, but the techniques require no religious affiliation.

    Mindfulness-based stress reduction (MBSR) is another option in a similar vein. It is based on Buddhist teachings of mindfulness but is completely secular. I took a course at a local hospital, but I believe there are some online courses as well.

    Here’s a round up of the resources I’ve found most helpful. Many of them approach Buddhist teachings as philosophy or psychology, rather than a religion: https://migraine.com/blog/migraine-and-mindfulness-bruce-almighty/

    Kerrie

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  • By silly lily

    I read many people here who have been suffering since quite a long time.i have been having it since last two years.and it has made my life a total mess.I have lost my friends due to it,who do not understand the consequences of having a bad migraine.I have lost some very precious time when i was supposed to take some very important decisions about my future.The worst thing is that its not visible.people many a times dont believe it.It has become a herculean task to manage life and to fulfill people’s expectations along with having migraines.Personal happiness is at stake too.No clue what should be done about it. ):

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  • By Ellen Schnakenberg

    lily singh

    I truly wish you weren’t having to go through this. I hope you do take some comfort in knowing that this is a problem most Migriane patients go through at one point or another.

    We do have a section on living with Migraine that may be helpful: https://migraine.com/living-with-migraine/

    We can only do what we can do, when we can do it. Others wouldn’t ask more of an MS or cancer patient, yet we are often more debilitated than people with those highly identifiable diseases. In fact, I made a video a year ago, and in it I include a quote by a cancer patient who said that breast cancer was a breeze compared to living with chronic Migraine. We included a number of statistics that most people aren’t aware of, including the loss of life that can occur. Here is the link if you’d like to share it with those in your life to help them understand what you’re living through: http://facesofmigraine.org/

    I would suggest that you do what I’m doing right now… trying to find a therapist that specializes in chronic pain issues. I have been dealing with this a long enough time that there’s not much to be found in books that I haven’t already tried, but I know that we all could use new ideas of ways to deal with living while sick and in pain. Why wouldn’t I want to avail myself of help?

    As to making your life revolve around others, I know how easy that is to fall into that trap. I was chronic and raising small children with a Hubs that didn’t have a clue what I was going through. The fact is, you are sometimes sick, and when that happens, you need to put yourself on the list. The friends that will listen to you tell them what you can and can’t do, they’re the keepers. Those that don’t care, probably aren’t the kind of friends you really need in your life to stay mentally, emotionally and physically healthy anyway. Sometimes a little mental hygiene is in order. It’s hard, but it’s also sometimes the best thing you can do for yourself.

    Hang in there. You’re not alone…

    ~Ellen

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  • By ATUL

    Hi,
    Can we look Mr. migraine from positive way. If he is not willing to leave us, why we should? We can made up our mind to make him a friend . One good quality in Mr migraine is that when he comes, will inform us well in advance. So we can prepare our self so strong to receive him. Now I can tolerate him very well without affecting my routine work. Now I accepted him from my heart that he never leaves me alone in a journey life. When he is not available, I compensate my work in advance. When he comes, I welcome him and give a time. Mostly avoid extra works and sit silently and cornered. Now life becomes simple. I enjoyed his presence. I stopped thinking and speaking and try to relax my self. I never give up my internal happiness and joy. I smile and forgive every buddy. Mr Migraine made me so stronger to phase any adverse situation. My pain threshold also increased almost doubled. I spending less time participating in small talk and more time in deep, meaningful conversations.
    I hope this positive attitude will make you stronger…!!!
    With lots of love and Power
    Good Luck.
    Atul

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