Waiting to Live

Waiting to Live

I’ve been doing it for years: canceling get-togethers with friends and family; missing important events; putting off work projects; avoiding going outside. Putting plans on hold and waiting for the pain to stop in order to participate in life. The problem with this approach is that if we chronic migraineurs wait for the pain to clear in order to live, we might be waiting forever.

Migraine can instill such fear in us. The pain related to migraine can be paralyzing and very often terrifying in its severity. From years of experience with the call-and-response dynamic of action followed by pain, or existing pain exacerbated by action, we eventually learn it’s better to stay quiet and limit our activities. So, we proceed with life carefully, tip-toeing along, as if the world is made of eggshells built on a field of land mines.

For chronic migraineurs- it can be a small, small world

The fallout of this dynamic is the risk of shrinking the size of our lives, leaving us emotionally malnourished. Little to no time with family and friends means limited support, leading to a decrease in social or intellectual stimulation. Limited time outdoors can decrease our exposure to simple but important joys like breathing fresh air or appreciating nature. It is easy to lose our perspective on the world.

Pain arises regardless

Ironically, after we’ve done our best to avoid every possible trigger (diet, sounds, smells, lights, stress, etc), we often find that the pain still arises. And regardless of our actions, many of us continue to experience some level of pain every single day.

I took a major step when I awoke to the realization that my pain is fairly constant, with numerous severe and debilitating spikes (sometimes caused by triggers within my control such as lack of sleep, and sometimes not, such as hormones and weather). After all, if I’m already in pain on a consistent basis anyway, why do I continue to live in such fear of triggering pain? Why am I canceling and rescheduling plans? Why am I avoiding going outside? If I’m already in pain, what am I afraid of?

Of course, the obvious answer is that I’m afraid of more pain. That debilitating, terrifying, intense and unmanageable kind of migraine pain.

Migraines are tough, but I’m tougher

The truth is, I have lived with and managed that scary kind of migraine pain for forty years and have learned a lot in the process. The pain hasn’t killed me (although at times I thought it might). I have learned that I am actually quite strong and resilient, and that while migraines are tough, I am tougher.

So, with the knowledge that I have been slammed repeatedly by severe pain and gotten back up again, I have awakened to the fact that I if I keep living in fear, waiting to participate in life until my pain totally clears, I will never fully live.

Getting along with life

So, I am trying to get along with life, looking for ways I can spend time despite the pain (when that pain is manageable). I’m getting outside and doing nonstrenuous yard work, going for walks, and meeting my friends and family for a quiet tea. My husband and I have carved out a two-hour window every week to hang out together. If my pain is bearable, we might do some yard work together, or go see a movie. But if the pain is unmanageable, he will sit next to me in bed and read a book. The point is, we will have our time together regardless of my pain level.

I’m tired of waiting for the pain to pass in order to live. Despite having chronic migraine, I am going to seek ways to experience as much of the world as possible in order to get all I can out of life.

Do you find that you are living in fear of triggering more pain? Have you found ways to experience the world despite the pain?

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 (52)
  • bluesguy
    2 months ago

    This was another great article. I have very similar feelings and experiences. Thank you for giving of yourself so that others can learn and grow. I am sorry you have lived with this terrible disease for so long. I am happy that you and your husband have found a way to be together in the face of the pain. I am lucky to have a fiance’ who is so supportive, and does a lot of what you describe. Having someone to be with us, in spite of our pain, means so much. I have the near daily limitations of chronic migraines. I find your words to be uplifting and supportive. Thank you for helping us via your own painful experiences.

  • Holly Baddour moderator author
    2 months ago

    Hi again, bluesguy- your comments are always so full of warmth and kindness. I’m grateful that you take the time to write and reflect, although I’m sorry we share so much in common when it comes to chronic migraine.

    Glad to hear you have a loving and compassionate fiance to accompany you through this journey. That, in itself, is a wonder and something to prioritize and cultivate. https://migraine.com/living-migraine/marriage-striving-make-it-work/

    Thanks again for your chiming in- and please stay in touch!

  • TonguePetals
    2 months ago

    Reading this made me want to cry. Im convinced I’m going to die alone because no one wants to be with someone who has chronic migraines. I’ve stopped leaving the house except for the days I can work; and those are far between.

  • Holly Baddour moderator author
    2 months ago

    I’m so glad you took the time to write in an honest way. There is a lot about migraines that is difficult and causes emotional heaviness and sadness. You are not alone in feeling this way. I’m sorry this article made you want to cry- however, it’s okay to cry- this stuff is hard! Your comment that you fear being alone because no one wants to be with someone with chronic migraines made me think about the fact that no one wants to HAVE chronic migraine, either. It’s not a choice we get to make. Hopefully, when it comes to our relationships, our loved ones see us as whole people, not just as a chronic migraine vessel. It is an effort to make our lives more than chronic migraine because it is so consuming- and there are days and weeks in which it can feel impossible to do anything but live, breathe and fight migraine. But, when we come up for air, and we re-emerge and remember who we are, and that we are more than this disease, we hopefully not only reconnect with our spirit, but we may come to see how migraine has made us stronger, more resilient and more compassionate.

    Please know you fit right in here with our community. Again, you are not alone. I hope you will connect with all of us on our facebook page where you will find a lively discussion in the comments section. And be sure to seek out ways to shore up your in-person support network too. Migraine can be so isolating in its nature. Is there someone you can connect with in your life who you can set up a weekly/bi-weekly/monthly quiet tea or meal with? If not that, a phone call or even just a check-in texting relationship? Do you have a relationship with a counselor? I’m of the mind that if you have chronic migraine, it’s not a bad idea to have an established relationship with a counselor to call on when things get hard.

    Please stay in touch and let us know how things are going. We are here anytime to provide support, information and guidance. So glad you are here.

  • cari49
    3 months ago

    My experience with Topamax is from years ago, when it first came out. My doctor back then didn’t appear to have any suggestions on the side effects. I understood that these were, while not common side effects, frequent enough that they were known by the medical community. Unfortunately, in well over 60 years, and a number of different triggers over the years, there has been practically nothing that helped me. After going through so many medications (“miracle” drugs that were sure to help) and having basically no help over so many years, I decided that I wasn’t going to find any help with them (other than the infrequent times I’d go to the doctor and get a shot). I basically stopped seeking help after the Topamax left me with those long lasting side effects. I’m not sure there’s anything medically out there for me. It can be very tiring to keep trying to find anything that might help and never having success. Thank you for your reply. I’m so glad you’ve been able to find ways to work through your issues with migraines!! You have given me several ideas of how to handle the issues in the future!

  • Holly Baddour moderator author
    3 months ago

    Do you have chronic migraine? Wondering if you are aware of the new class of migraine preventative called CGRP? Might be worth exploring with your migraine specialist if you do have chronic migraine: https://migraine.com/news/aimovig-approved-fda-first-cgrp-blocker/. That, or, I’m assuming you’ve explored Botox for chronic migraine: https://migraine.com/migraine-treatment/botox/. Lastly there’s another new treatment approach, also FDA approved for chronic migraine, Gammacore: https://migraine.com/video/gammacore-approved/. It is an exciting time in relation to the release of treatment for migraine. Definitely worth discussing these options with your doctor if you haven’t already. Stay in touch!

  • Holly Baddour moderator author
    3 months ago

    Of course, @cari49– We are here anytime to provide information, guidance and support. Please stay in touch and let us know what you find when you talk with your migraine specialist. If you need anything else in the meantime, don’t hesitate to reach out. Thinking of you!

  • cari49
    3 months ago

    Holly thank you for your encouraging words. Yes I do have chronic migraines. Until now I had not found much encouragement to actually search further. So glad I came across your website. It would be so nice to actually find something that would help with my migraines. I am going to take your advice and ask about the treatments you suggested. Again thank you!!!

  • SandiO
    4 months ago

    Holly,
    Your post resonated with me today, though quite some time since you wrote it. I have suffered from chronic migraine for over 60 years, and now Multiple Headache Syndrome for the past four years.
    I am tired of the testing, the different medications, the changes in foods, the biofeedback, etc, etc. that work to some degree for a while but never receiving total pain relief. This week my doctor wanted to try another medication and I went home and decided not to use it.
    I will try your approach to accepting the pain with life and do the best I can.
    Thank you for the encouragement just by ‘having been there.’
    SandiO

  • Holly Baddour moderator author
    4 months ago

    Hi @sandio– There’s definitely no “one-size-fits-all” solution when it comes to managing migraine. It is such tough stuff. We all go through treatment-fatigue. It can be an exhausting cycle to try new things – get our hopes up- experience troublesome side effects while we wait to see if they work- just to be let down, yet again- when we discover that they don’t. It’s important to listen to yourself and respect your energy when you don’t feel up to trying something new. You’ll likely feel ready at some point in the future.

    If and when you are ready, there are some newly FDA-approved treatments for migraine that have the migraine community buzzing. When you have the energy, you might read up on CGRP: https://migraine.com/living-migraine/aimovig-cost/and Gammacore: https://migraine.com/video/gammacore-approved/ And then ask yourself if you might want to give one or both of those a try. But as you said, in the meantime, it may be time to breathe a bit. And remember, we are always here to provide information and support. So very glad you’re a part of our community! Stay in touch.

  • MrsMiMoo
    5 months ago

    Hi – chronic migraine for 25 years. recently was having 18 days out of every month with migraine. Got to see specialist who has put me on Candesartin and Topamax low dose 75mg twice a day. This seems to have had an effect and the migraines are now down to 4 to 5 days a month, manageable. I hate topamax though – the side effects are quite alarming. it makes you stupid and I have lost about 1/3 of my hair. But, i’m not crippled by migraine. I’m in the UK so healthcare is not governed by money so much. Migraine has ruled my adult life and limited my social life – no holidays and i have had to function just for work. It is so tough.

  • cari49
    3 months ago

    Please do pay attention to the Topamax side effects. When Topamax first came out, I was prescribed it and took it for six months. During that time, I started having trouble with smelling bad smells all the time. At the same time, I was having bad tastes in my mouth. After six months, I stopped taking it due to the severity of the side effects. I realized after I stopped that the smell and taste problems did not go away. To this day, I especially have trouble smelling things. And my taste has never come back either. That’s a pretty serious rest of my life side effect. And the worst part was the Topamax didn’t help with the migraines either.

  • Holly Baddour moderator author
    3 months ago

    Hi @cari49,

    Thanks so much for chiming in.

    Those side effects certainly ARE troubling especially given that they seem to be lasting. That is something that I’ve not heard of. I hope you’ve had a chance to discuss this issue with your migraine specialist. I know that it can take some time for Topamax to take effect and similarly it can take time for the side effects to fade when one is on the medication. Perhaps there is some hope that the side effects you are experiencing will still have some chance of fading now that you are off of it? Again, certainly worth discussing with your doctor.

    Thanks so much for sharing and very glad you’re a part of our community.

  • sunnynights68
    4 months ago

    I don’t like the topomax either, I don’t think it works either. I also agree that the Botox For migraines works great but You have to give it two – three times before you see any results. I was about to give up after the first visit and not make a second appointment. I was thankful I made a second appointment but it wasn’t until two weeks out after my second appointment I noticed a huge difference. My third appointment is coming up in a week I’m really praying for a major difference. I have a family trip coming up in January to Jamaica and I really don’t want to spend it in my room

  • Holly Baddour moderator author
    4 months ago

    Thank you for sharing your experience with Botox and how it has worked for you in a cumulative kind of way. That is interesting to hear and likely will be encouraging for others. In my experience, it takes 4 days to take true effect, but as to the way it takes time to build in the system, it’s been so long since I initially started on it (over 15 years) I can barely remember the time it took to set in at the beginning. Regardless, it’s wonderful to hear that it’s working for you. Please let us know how your trip to Jamaica goes in January. We’ll be thinking of you!

  • Holly Baddour moderator author
    5 months ago

    Hi there, @mrsmimoo– So great to hear of the dramatic decrease in your migraine frequency though sorry to hear about the troubling side effects of Topamax. You are NOT alone on this front. Muddy cognition, challenges with finding the right words, and loss of hair are all commonly reported side effects of that drug. Others report weight loss- and food tasting metallic among other things. Unfortunately there are few treatment options out there for migraine so we sometimes have to decide between severe pain and awful side effects of treatment. Some do report that with time, the side effects of Topamax begin to fade.

    There are a couple of new treatments that have just been FDA-approved- perhaps worth discussing with your doctor: CGRP and Gammacore- hopefully with fewer side effects than those that come with Topamax. However, many of us end up taking many of these treatments concurrently in hopes of finding just the right cocktail to stamp out migraine from our lives altogether or simply to seek a better quality of life.

    I’m so sorry to hear about the way you are using your limited energy for work and then finding you don’t have any left for a social life. This, too, is a common challenge for those of us living with chronic migraine. Again, you are not alone and we are so glad you are a part of our community. We are here for support anytime. Please stay in touch and know we are thinking of you.

  • Holly Baddour moderator author
    5 months ago

    Hey again, @mrsmimoo– Just wanted to provide you with a bit of info on both of those treatments so you can be armed with some background when you see your doctor in August. Here’s an article on CGRP (though if you search our site for CGRP you’ll find multiple articles): https://migraine.com/living-migraine/aimovig-cost/.
    And here’s an overview on Gammacore: https://migraine.com/video/gammacore-approved/.
    I’m assuming (as a chronic migraineur) that you’ve already looked into Botox? If not, please take a look at the articles we have on that topic as well.

    The aphasia you mention (struggling for words) is not only a side effect of Topamax, but can be it’s own symptom of Migraine: https://migraine.com/blog/recognizing-my-own-aphasia/. Did you ever experience it before starting that drug?

    Let us know how things go with your Doctor. Thinking of you.

  • MrsMiMoo
    5 months ago

    not heard of those treatments, seeing my doc in August so will raise with her. thank you. Muddy thinking with Topamax is awful, for me it’s word retrieval which in my job as a project manager is a problem. I look stupid in meetings as I struggle for words.

  • IntricatePurple
    6 months ago

    This is my truth. Its so sad…

  • Holly Baddour moderator author
    6 months ago

    That’s a great lesson! So important to hold onto hope. Thanks for sharing that with us.

  • Holly Baddour moderator author
    6 months ago

    It really can be such a hard reality. Are there any lessons you’ve learned from living with migraine that you can pass along to the rest of us? Does it help to remember that you’re not alone in navigating the challenges related to migraine disease? Thinking of you.

  • IntricatePurple
    6 months ago

    One lesson I’ve learned is to stay hopeful.

  • H-minus
    11 months ago

    “Waiting to live”… I’ve been dealing with migraines since 2003 (from an injury I sustained while deployed in Iraq) and what you just said is exactly what life is now like for me. I used to be so unpredictable, outgoing, and adventurous. I was always outdoors, I was a paratrooper, and my life was full of wonderful uncertainty. I could come and go as I please; now, I’m calculated, cautious, and worried. I’m worried that too much sun will bring pain, so no fishing today. Too much excitement and exposure will provoke another migraine, so I sit here and avoid so much of life. Everything I do, from what I eat to where I go is planned and deliberate. My life revolves around pain management and avoidance and it’s lonely. I don’t go to gatherings like I used to. There’s no point in buying tickets to anything, because there’s a good chance I won’t make the show and that money will be wasted. I can’t even get drunk with a buddy because I’m so worried about a headache the day after. I love helping people – but I’m just not reliable – it’s hard to be there for them, I feel like I dissapointed them when I can’t make it over to help them. I love to learn and read, and even too much of that will cause swelling. I’m thankful for what I have – others have it so much worse than I do, but it’s still difficult at times to accept this stagnant way of life. I keep telling myself, year after year, that the migraines will eventually fade, and I’ll get back on my mountain bike – but they don’t. Ive bought that bike years ago, and it doesn’t look a day old. Well over 1000 attacks and I am still adjusting to all of it, as if apart of me refuses to accept this new reality. I have to find a better way to live instead of just waiting around for my pain to go away. I no longer trust the VA, so I look for alternative solutions (cefaly migraine band, axon migraine glasses, oils, anti inflammation foods, heat therapy, meditation, etc..) but nothing works as good as just trying to prevent stressors like the sun, reading, starting at screens too long, and even stress. I desperately need to find some balance. Again, I’m really am grateful for what I do have – I have joy in my heart – but I want to find ways to still give back and get out of this rut. Thank you for giving me the sense that I’m not alone in this – it made a difference.

  • cally826
    2 months ago

    h-minus, thanks for writing this. I realized your word “calculated” is how I live my life too. Avoid any triggers and even then can still have a migraine. Don’t buy tickets, probably can’t use them etc. You’ve probably said it all for most of us!

  • Holly Baddour moderator author
    11 months ago

    @h-minus– I’m so glad you wrote. I honestly could’ve penned most of what you wrote. All that you mention avoiding out of fear -not buying tix, not even reading– all of it- are exactly the ways I’ve lived for years. It is so helpful and important for us (even though we’d never wish this on anyone) to remember we’re not alone in this. And I need to emphasize that even though I wrote this article, it is for me such a process. The habit of living in fear is deeply embedded and one that I have to consciously push against to right.

    You are right that waiting around for pain is no way to live. Interestingly, the fear begins to rule us even more than Migraine. I am betting there’s a dose of PTSD in there somewhere for all of us who have been burned repeatedly by trying- by doing- and by getting badly burned by the severe pain of migraine. It’s terrifying pain, after all, so I wouldn’t be surprised if we’ve all been terrorized by it on some level. Migraine as terrorist? That’s an interesting thought. In the same way, migraine attacks change our behavior and cause us to live in fear.

    At any rate, I’m with you in this, as I’m sure countless others are. Each day we must consciously make a choice to try. Take stock of how we are in that moment, set attainable goals so we feel the day was not awash. Hopefully with time, our confidence will grow a bit and we can find that balance of which you speak. The fact that you still have that joy in your heart- and I join you in that too, is a huge asset.

    Let’s see what tomorrow brings! Very warmly, Holly B. (migraine.com team).

  • Autumn Sparrow
    11 months ago

    Thank you so much for writing this. I’ve been home bound for nearly 18 months and finally came to the point that I realized I needed to do the things I love. Since I haven’t had a migraine free day in 6 months, I now make myself do something if it’s a day I allow myself to medicate. It doesn’t make the isolation or pain go away but it reminds me what it’s like to be alive. Although it’s also made some family members question my disability when they see me water the lawn or picking roses or taking photos (SSDI knows I do these things and they’re the final judge- but it still stings)…. it’s hard but we owe it to ourselves to live and experience joy in the ways we can.

  • Holly Baddour moderator author
    11 months ago

    @sparrow – Thank you so much for sharing. A few people have now mentioned waiting to medicate until they absolutely have/need to. Either because they don’t have enough meds to get through the month, they are worried about building tolerance, or they simply don’t like to take medications. Whatever the reason, this means many of you are going many days out of the month with no treatment. Even tho said treatment doesn’t provide effective relief, it sounds like it can at least take the edge off so that you can function some. An interesting dynamic and hard choice that seems to be common.

    Regardless of that, I wanted to be sure to acknowledge your concern about family/friends or SSDI questioning your wellness/illness when they see you out in the world functioning. I had the same concerns when I was applying for SSDI and in the first months after receiving it. The truth is that, as far as SSDI is concerned, they want you to do what your doctor is telling you. And most migraine specialists will tell you to be as active as you possibly can be as doing so is likely to decrease the frequency and/or the severity of attacks.

    As for your family members and friends, that process comes down to educating them about the importance of striving for emotional and mental health balance while your scales are being heavily tipped by migraine (a complex and comprehensive neurological condition). Sending those folks lots of links to migraine.com articles can be a easy way to help increase their awareness in a way that takes the onus off of you (this is how I handled things initially as well and it really did help).

    So glad you are here and hope you keep in touch! Warmly, Holly B. (migraine.com team).

  • litoria76
    12 months ago

    My chronic daily migraine has been ruling my life for over 3 years and before that i had them every day or every other day for 6-8 weeks at a time starting when I was 16. I can even remember my first migraine at 8 or 9 years old. After exhausting all of my neurologists treatments, I’m left with Percocet which i get 30/month but with the tolerance i have built up over the years i have to take 2 for a few hours of relief before I get a rebound headache. Basically I have to wait for a day that I HAVE to be functional to use it. As a result I’ve lost most of my friends, hardly leave the house, am unable to work, and rely on my mom for support and housing. I long for independence and self-reliance but don’t see it happening unless I finally get SSDI and section 8 housing…

  • Holly Baddour moderator author
    11 months ago

    @litoria76 – Thank you so much for sharing your story with us. Please know you are not alone. There are many of us who are waking up and navigating the same challenges you describe, right along with you. Please keep that in mind as you move through your day. There are sadly few effective treatments, and the ones that work have many side effects, or, if they work, they aren’t effective for long. Your mention of waiting to properly treat your pain until a day that you absolutely have to be on your game is very common. What an impossible choice. That said, there are some new treatments coming round the corner on which many of us are pinning our hopes. The process for SSDI can be a long one, but is possible. We have a number of resources on that topic- here’s one you might find helpful:https://migraine.com/living-migraine/6-things-know-about-applying-social-security-disability/

    I hear you that you wish you had more autonomy than you can manage currently. In the meantime, it is wonderful that you have a mother that can provide you with shelter and support. Keep in touch with us and so glad you are a part of our community. Warmly, Holly B. (migraine.com team).

  • chica22
    12 months ago

    PAIN…I have never taken a painkiller in the last 40 years I’ve had migraines….the first 10 years yes, but I realized it was not the solution. I have been prescribed 50 different abortives and preventatives and the only one that worked was Topomax and propanolol. My migraines are all physical aura such as spiked BP, visual aura, stomach pain, sense of cold, tingling and after it is over the pain in the base of my head and neck is unbearable. I use heat and ice and massage and wait it out. All this lasts for days sometimes. Now I have dystonia in addition to the migraines…..more muscle pain

    Every ER and every doctor I have seen in the last 15 years treats me like a drug addict seeking painkillers. The painkiller use for migraines doesn’t stop them and only momentarily helps…… there are many other things like progressive relaxation CDs, ice packs and heat and massage that are easy to do and do not create addiction. I avoid doctors mainly because I don’t want to be treated like a drug addict…it is demeaning.

  • cari49
    3 months ago

    Your treatment as a drug addict looking for a fix is EXACTLY how I’ve been treated also. Even though I’ve never had a doctor give me anything LIKE an actual pain reliever other than what you can basically get over the counter. I’ve NEVER taken any narcotic pain reliever for my migraines, have not been prescribed actualy pain relievers. In the past 30 or so years, all any doctor will give me is one of the “take the med before the migraine starts or just as it starts”. That might work except 99% of my migraines come on during the night and I wake up with a fully formed headache. It’s too late for the meds I’ve been given. I think I need to find a doctor who has also lived with migraines. I do like that at least online we can hear about things that others have tried that might help.

  • cally826
    2 months ago

    cari 49- I’ve had migraines all my life, some of my allergies trigger them too. Years ago I would have a migraine every morning. Long story short I had 4 hanging plants in my bedroom, I’m allergic to mold and the dirt for plants naturally had mold in them. I had 1 feather pillow I slept on because it gave my head more support with a headache. Allergic to feather pillows! I did much better after I got rid of that. It could be something in your bedroom that you’re allergic to!

  • Autumn Sparrow
    11 months ago

    Chica, I also ended up developing dystonia. I finally was referred to a movement disorder specialist after 3 Neurologist’s finally agreeing on what was going on. When I saw him last month he said it had only affected my hands and eyes, but not my legs and feet (the twists & spasms in these parts leave me unable to walk at times). He suspected that in theory my chronic migraines were causing the dystonia symptoms, and possibly tears to my spine & knees. He ruled out meds, etc.. I asked what he thought I should do and he told me he was baffled and suggested Stanford (they don’t take my insurance and I’m on SSDI). I still am waiting to see what my neurologist has to say about it.

    I think having to deal with both disorders is beyond frustrating as were often treated as insane, drug seekers, or some freak show that they don’t know what to do with.

  • Holly Baddour moderator author
    11 months ago

    @sparrow and @chica – I also have dystonia (cervical) – and you’re right, it is a troubling comorbid disorder to face along with Migraine. For me, botox is a huge help in addressing this part of my pain pattern. I wonder if either of you have tried that before? As to being treated as a drug-seeker, I think if you did a survey of all migraineurs, especially those of us who have had to go the the Emergency Room for treatment, you would find that 100% of us have been made to feel that we are faking it. A terrible experience. You are definitely not alone and I’m so glad you both are a part of our community! Warmly, Holly B. (migraine.com team).

  • Ygt
    12 months ago

    I can get how difficult it is that for you as probably every migraine patient can. One day my doctor asked to leave all variables around me constant if i ever experince these migraine pains in the event of living a very peaceful life and away from stress. My answer was yes. My struggle in fact seperates into two categories in terms of migraine. First unconcious pase and second concious pase. Fistly i didnt know that i had it and owing to that i missed many things and secondly one day since i drained all my endurance, i went to a neurolojist and he said me i had it. Since that day i have been addicted to the painkiller he precribed me. Not important anymore, i am used to living with it. As a migraine sufferer, i know i have to get used to live not the same all days in a month. Also i know i am going to keep on avoid making things which finally end up with migraine pain. After all, there is still something i ever cant be used to. The fatigue feeling and its power to prevent you from reading, speaking or even sleeping.

  • Holly Baddour moderator author
    11 months ago

    Greetings Ygt- Thank you so much for sharing your experience. I thought you might be interested in this article about the very real and exhausting postdrome that can follow for many migraineurs:https://migraine.com/living-migraine/chronic-bodys-slow-leak/?r=
    So glad you are a part of our community. Warmly, Holly B. (migraine.com team).

  • lightweaver
    12 months ago

    My migraines ruled my world for years. Finally I was able to get back to me somewhat.
    Then M.S. came along ans after 28 years I am home bound. I am living on my memories. So make memories live to your best and enjoy good moments.

  • Holly Baddour moderator author
    11 months ago

    Dear @lightweaver – what an important dose of perspective you provide for the rest of us. It’s an important reminder to all – regardless of whether or not we are living with migraine, to embrace the present- and live life to its fullest as we never know what’s around the corner.

    Something I might hand back to you is an idea I’m sure is not new to you, but the consideration that we change the definition of a day well-lived. We might not be able to travel to a far-flung wild destination, but we may be able attain the same kind of warmth and fulfillment because we appreciate the simpler things. Migraine (and conditions like it) often cause us to slow down and see things we hadn’t before. Something akin to smelling the roses, I suppose. It’s hard to articulate, but I can say for myself that I have felt my heart swell in the same way when seeing a new country (in my old life) as I have in watching my dog leap through her first snow (after my being in bed for three days with an intractable migraine).

    The kinds of new memories we are making each day are certainly a different texture, but they are still worthy, still for the taking.

    Thinking of you and so glad you are a part of our community. Warmly, Holly B. (migraine.com team).

  • chica22
    12 months ago

    I too try to forge ahead and make plans instead of hunkering down and letting my fear of having another migraine make my world smaller and smaller. I made reservations to Costa Rica a month away….wow that was scary, because if I let myself over think it I’d cancel them. The “What if’s” sometimes control my life. Taking all my medications on vacation is challenging…..however we went to New York in October with all its noise, smells and stress…PLUS the flights and uncertainty….and guess what!? I didn’t have a migraine the entire time nor did I have a “let down” one when I returned. So I just try to convince myself that I’ll be OK no matter what happens. And I have my wonderful husband with me so I have support and encouragement. That’s how I do it.

  • Holly Baddour moderator author
    9 months ago

    Hey @chica22– Great question on dystonia- the best way to mobilize community comments/discussion on the topic is to post it here: https://migraine.com/q-and-a/ and/or on our migraine.com facebook page. Warmly, Holly B. (migraine.com team).

  • Holly Baddour moderator author
    11 months ago

    Hi @chica – Thanks so much for that wonderful affirmation and reminder that it’s important to embrace adventure and release fear so it doesn’t take over and limit us even more than Migraine itself. And it’s key to acknowledge those times, however rare they may be, when we have incredibly successful life adventures- like your trip to NY. And cheers to no let down after! Thanks for helping us see this hopeful and possible outcome. Warmly, Holly B. (migraine.com team).

  • chica22
    9 months ago

    Holly…how do I post this. I’d love to hear what others think.
    I have complex migraines and dystonia….migraines make the dystonia worse. The neurologists…plural because I’ve seen so many…come in the room, ask questions and come up with a plan….all in about 30 minutes. My migraines have a blood pressure component that makes my BP rise to dangerous levels as part of my somatic aura which has many different visual and somatic symptoms. The the dystonia kicks in and my neck, back, arm muscles become like rocks. And now I have dystonic tremors in my neck…..for one year. That’s because a neurologist thought lidocaine injections were a good idea…..it created cervical tremors that I did not have before. No doctor can evaluate this kind of migraine and comorbid dystonia in 30 minutes and claim they know anything about it. It would take some thought and research outside the face to face appointment. They just guess. I’ve been seeing different doctors for 40 years…looking for one who will take the time and thought to really understand my medical issues….even at the Mayo Clinic to no avail.
    Anyone have advice on how to get that?

  • marycr8on
    12 months ago

    I have migraines that have been chronic for more than 20 years. I’m with you about trying to live your life since the pain is coming whether you stay home and wait for it or you live your life. There’s one thing I’d like to add; you have to try not to take it too seriously. Laughter, even just cracking a smile if that’s all you can manage, really helps get you through it.

  • Holly Baddour moderator author
    12 months ago

    Hi @marycr8on– What a terrific reminder! I think I remember reading an article that said it was important to smile everyday- even if you didn’t feel happy. That if you did it enough, the act of smiling would eventually inspire a feeling of happiness to follow. Regardless, I try to seek out real sources of humor on a daily basis as I agree that humor/laughter can be the best medicine. Thanks so much for this great tip. Warmly, Holly B. (migraine.com team).

  • NeillK.
    12 months ago

    I have had chronic migraine 16 years. It can take over your life and run it in the ground. Nothing I have tried except botox works. Botox has severe side effects though so I had to stop. Very depressing situation. The emotional cost , financial cost is overwhelming. I never thought of migraines the way I do now. Totally disabling and very hard to manage. Thanks

  • Holly Baddour moderator author
    12 months ago

    Hi @neillk– Thank you so much for sharing. You are speaking for so many when you touch upon the deeply challenging ways that migraine can affect us- it is comprehensive. I have had them for 40 years and have cycled through times of thinking about them with some semblance of balance and then felt quite hopeless at other times. I’m so glad you are a part of our community and want to remind you that you are not alone. Please stay in touch with us here and if you haven’t already, check out our facebook page – which is a quite lively place for our community to connect. Unfortunately, we rarely know anyone in our real lives who has migraine as severely as we do. It can be key to connect with others who are shouldering the same burden as it can help to lighten our load. Thinking of you. Warmly, Holly B. (migraine.com team)

  • Deb
    12 months ago

    Thank you for this article. This is the way I also have been able to maintain a positive attitude and outlook as well as make the most of each day. I do what I can. I continue to make plans and alter accordingly as needed. Chronic migraine disease will steal my life if I let it. I’ve decided not to let it.

  • Holly Baddour moderator author
    12 months ago

    @gubs – I’m glad this article resonated with you. You have a great attitude despite being dealt the very challenging condition that is Migraine. Thank you for sharing your philosophy with the rest of us. It is inspiring to hear. Warmly, Holly B. (migraine.com team).

  • twobassets
    12 months ago

    I’ve had migraine all of my life. I have chronic migraine at the moment (the moment being the last 3 years) and not for the first time. I have two things I tell myself…”it could always be worse and the debilitating pain always goes away eventually”. It’s easy to remember because it’s a fact based on 50 years of history. But it took me a long time to be willing to step out of my self imposed cocoon and just risk it. For me it’s worth it to take the chance since I know the probable outcomes. Which means I still have a measure of control and get to enjoy more of life.

  • Holly Baddour moderator author
    12 months ago

    @twobassets– thank you so much for your message. What you articulated is so important. When in the midst of severe pain it can be difficult to remember that it will eventually lift. And maintaining perspective- that there are people everywhere who are worse off, is also key and healthy. Your last point- where you articulate the fact that taking a chance to live a little and risk it- actually means you are asserting control in a situation where we all feel very out of control, is so apt. Migraine yanks us around like rag dolls- so when there are moments we can assert ourselves, it is both freeing and strengthens our resolve. So glad you chimed in. Warmly, Holly B. (migraine.com team).

  • Jessie
    12 months ago

    Thank you for this! I’m on day 2 of a bad one and really needed to read this. I’m starting to work toward taking short walks with my dog when it’s cold out. Thankfully, I have a very supportive husband who walks him a couple of times a day, but it’s something I really miss about being ‘normal’. Having migraine disease is a lot like knowing someone is chasing you and will eventually catch you, you just don’t know when. That makes it very hard to leave the house. Thank you for making me feel less alone!

  • Holly Baddour moderator author
    12 months ago

    You are NOT alone, Jessie. In fact, I just got back from taking a short walk in the cold with MY dog! Thanks for sharing. Warmly, Holly B. (migraine.com team).

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