Constant surveillance
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“How do I feel today?” That’s the question that our lives often revolve around if we have chronic migraine. Sometimes even more precise: “How do I feel right now?” However it is phrased, the question follows us throughout the day. It can prove an exhausting aspect of chronic migraine, one that’s often overlooked.

Early detection is key

Our doctors tell us that early detection and corresponding treatment can be key in migraine management. A migraine attack is like a herd of cats- once let loose, it is almost impossible to recapture. So, we learn the importance of vigilance. If we can nip the migraine in the bud we have a much greater chance of recapturing the remainder of our day – and ultimately, a better quality of life.

Scanning for viruses

So we listen. We scan our bodies. And we live in fear. Of any sign. The window to catch and treat a migraine in its early stages is not a big one and with migraine there are multiple symptoms. Perhaps our eyes begin to ache slightly; or we feel a bit queasy. Should we proceed with treatment now? Wait a bit? We are constantly monitoring, questioning, and always paying attention.

Can it be unhealthy to be so self-consumed and hyper-vigilant when it comes to one’s health? The unfortunate truth is that if we are living with chronic migraine, we are frequently starting one, having one, or recovering from one. The reality is that no matter where we are in the process of migraine, analyzation of our current status is required to determine the appropriate course of action. Once a migraine fully sets in, many more questions arise as to the proper course of treatment. When do we take which medication or, what approach to we use and how often do we use it?  Some medications are to be taken every 4 hours, others every 6, or 8, etc. Migraine pain can make clear thinking a challenge, so it also becomes key to keep a record of what has been taken. From the outside it might look obsessive, but during a migraine attack it is necessary. How else will I know when to wait out the pain or turn to my bag of voodoo tricks to again try to knock it down?

Panic mode

Ultimately, regardless of the situation, it is truly unfortunate that our well-time (however limited) is spent in surveillance mode. Constantly monitoring, taking stock, scanning all systems for the next attack. Almost like some sort of weird security system for the body. Never in off-mode. Never relaxed. I’ve often described myself as a scared rabbit, sort of feeling panicked. It’s as if I’m waiting for the next shoe to drop– exhausted and still healing from the last attack, while bracing for the next.

Do you have the sense that you are frequently monitoring your body for migraines and related symptoms? If so, does it take away from your ability to relax and enjoy the times that you are pain-free?

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21 comments on “Constant surveillance

  1. hwlc says:

    I am required by my medical provider to use a migraine diary. Because I have multiple daily symptoms, I sometimes feel that entering each of them and detailing what I did about it calls attention to it all and makes me focus on those symptoms vs looking at a positive, such as “no dizziness today”. I have decided to try to use the diary 20/30 days each month for awhile if I want. Maybe that’s my way of having some control over things.

  2. Holly Baddour moderator author says:

    hwlc- you are not alone in this challenge of how to keep a positive perspective while keeping a migraine diary. How to look at the glass as half full when you have a document staring back at you showing you precisely the ways that it is empty? There are many articles on our site about actively seeking ways to be grateful and to practice gratitude in the midst of life with migraine. Perhaps these might be of interest to you: https://migraine.com/blog/daily-gratitude/ and https://migraine.com/video/snapshot-of-wellness-challenge/ So glad you’re a part of our community. Warmly, Holly B. (migraine.com team).

  3. Ellifane says:

    For a while, when I had a migraine free day I was waiting for that foot to fall. I feel like I have so many triggers that I’m living my life around them. There came a point where I said to myself that I would try to do something fun and memorable on my migraine free days and take it as it comes. The whole planning everything out from do I take an excedrine or just stick with ibuprophen? Can I stay or will I need to leave before I’m no longer able to drive? I am never without medicine and I do occasionally get to go to a concert (have yet been able to stay the whole time), go to a movie, and a BBQ. I think I stress more about having to leave an event with a friend than the migraine itself. I think I have learned to enjoy my pain free days a little more because I always have a dedicated plan in place. As for relaxing, I don’t know if I can.

  4. Holly Baddour moderator author says:

    Ellifane – I really like the way you spell out these contingency plans. The need for them, and the way they work in your life is something I believe we all can relate to. It’s a life living on pins and needles. And when not in pain ourselves, we stress and worry over how a potential migraine attack might impact or alter the lives of our friends if we dare to make plans. Hard to relax, indeed. So glad you shared- it helps us all to remember we are not alone. Warmly, Holly B. (migraine.com team)

  5. wappaw says:

    This is my life. No day goes by, hardly any awaking hour, without the constant fear of a twitch of paing indicating the onset of a migraine. I truely feel they have severly impacted my life for the last 40 years. Finding doctors who know how to treat migraines, or even care, has been a challenge. Deciding when and which meds to take is a big issue.
    Chronic migraines of 20 or more a month, with warnings not to take too many meds for fear of rebound headaches, or possibly worse yet, heart issues just adds to the frustration of living with migraines. It is truely a constant battle.

  6. Holly Baddour moderator author says:

    Hi wappaw- I’m so glad you shared your experience because you are not alone and it helps others to read your words and see that they, too, are not alone. It sounds like migraine has indeed deeply impacted your life. You mentioned the challenge of finding a good migraine specialist. I thought I’d at least pass along this resource in case you are still looking: https://migraine.com/blog/looking-for-a-migraine-specialist/ So glad you are a part of our community. Warmly, Holly B. (migraine.com team).

  7. ccf23 says:

    I can SO relate. I had an anxiety disorder prior to chronic migraines and it has just gone into overdrive with the constant stress of juggling meds and working within the physician guidelines so as not to get medication overuse headache. Never mind not being able to work, etc. I have come to the conclusion that I alone live inside my body and I will make decisions on when and how to treat my migraines as I am the one who lives with the pain. That helps alleviate some pressure and give me a sense of control. And then I just do my best with what I have. Sometimes I think I should create a decision tree graph to try and take some of the analysis out of every day! Do want to say that a crucial part of my strategy is being honest with the doctor about cutting pills in half, etc. I am not trying to undermine my treatment in any way. Just trying to get by on my own one day at a time with the best quality of life possible.

  8. Holly Baddour moderator author says:

    ccf23- thanks so much for sharing. You are so right- living with chronic migraine brings with it an existence of regiment and confinement. So many rules to live by in order to try to avoid an attack, and yet still they come. I like your attitude to remind yourself that you are in the driver’s seat, ultimately. I think many of us can get stuck in wanting to please our physicians and do exactly as told, but migraine often has other plans for us, and wreaks havoc on our bodies. We are left desperate for relief and do what we must to get through it. Like you said, the key is communicate with your physician at each visit to stay current, honest, and on the same team. Warmly, Holly B. (migraine.com team).

  9. Monitering how I feel, constantly avoiding triggers, and planning and watching that I pace and limit the days activities is a constant process. Some of it has become routine, some I purposely watch out for constantly, and still some I greatly struggle with. I grieve what I’ve lost for 40 years, but need to focus on the positive parts of my life and search for things that will make me happy. But it is a 24/7 job to do this! Managing meds,appointments, and what I do and don’t do.
    I did just realize that if I didn’t have my husband., I’d need to hire a great deal of help. Holding on to a part time job prevents me from getting disability, but I need it for my morale.
    Thank you all for sharing. Have a well day.

  10. Holly Baddour moderator author says:

    Leslie Coutsouridis – You are so right- it does feel like a 24/7 job to manage all the aspects of migraine. You mention needing to focus on the positive parts of your life and it sounds like you actively do so between being grateful for your husband, and holding onto a part time job because of what it gives you. You might find these pieces of interest on the topic of seeking gratitude: https://migraine.com/living-migraine/looking-for-the-bright-side-of/ and: https://migraine.com/blog/daily-gratitude/ So glad you are a part of our community. Warmly, Holly B. (migraine.com team).

  11. 12t3a7j says:

    Everything you wrote is exactly the way my life is with Chronic Migraine. I have to add the fact that I can only get 9 triptans per month. 30 pain pills help get me through the month but I usually cut both in half unless it is a sudden, severe attack, for which I have 4 injectable triptans available. Hardly seems fair but thank goodness my meds usually work, and sometimes I can get away with aspirin and acetaminophen with coffee, even though it may only put off the migraine for half a day.

  12. Holly Baddour moderator author says:

    12t3a7j- Having to carefully manage a limited number of medications can force us to be even more focused on migraine. Such a tough reality that so many of us struggle with– you are definitely not alone in this. It sounds like you’ve made the best of it and it is wonderful that you’ve found medications that work for you. Thanks for sharing! Holly B. (migraine.com team).

  13. PamR says:

    I only get 9 triptans per month as well, and thankfully a half tablet will work most of the time. My mother can get 12 at a time (same medication, different insurance), and she gets fewer migraines than I do, so she always gives me some of hers when I run out. It’s so frustrating to be at the mercy of your medication, too. You have to decide… should I take one? Is this going to be a serious migraine? Can I make it through the day at work or am I going to wind up puking all the way home because I waited too long to take it? Always having to decide between relief and making it through the rest of the month before you can refill that script…. more worry.

  14. Holly Baddour moderator author says:

    PamR- you do a great job of articulating the cycle of migraine attacks, addressing those attacks in the timely manner (as we all should) but being up against the wall in terms of having only a small number of those golden medications that actually work. All of the stress that comes with the worry over managing the pain and ensuring that we have enough meds to last us the month is enough to cause another attack. It’s an awful dynamic but it certainly helps to remember that we are not alone! Your comment served as that perfect reminder. Thank you. Warmly, Holly B. (migraine.com team).

  15. Tamara says:

    Treat early so it doesn’t become unmanageable …… BUT don’t use meds more than 10-15 days a month ….

    I literally CANNOT follow both of these! Almost 2 weeks I was already sitting at pain meds 7 days in the month (aka WAAAY too much for still being in the beginning of the month). Ok I can do this, this migraines doesn’t feel too bad – I can use all my other tricks (essential oils, tiger balm, ice, heat, rest) and get through it, then I’ll be back on track with the med levIels.

    Well ….. a horrible 10 day migraine that needed 3 extra doc appointments, pain meds every day plus the 2 days after (worse postdrome ever) and a day spent in urgent care for IVs.

    I give up. I have to risk the medication overuse headache and treat EVERY migraine that comes. So tired of the constant watching, and waiting and fighting. I react to weather EVERY single change (even with no other triggers it still gets me). Going to drop on Tuesday? I’ll have a migraine Monday 100% of the time. Some days it’s nice because I kndon’t w not to schedule anything that day but it’s really hard when there is 2-3 changes a week and it starts to roll into one migraine after another. Those are the hard days to hear about another weather change because I know there is no break – which means I can’t work properly (hello major financial stress), house gets messier and messier (and I’m selling it right now so it needs to be ready for showings) and mood tanks.

    Sometimes I wish I didn’t know when they were coming …. then if I have a good day I could actually enjoy it instead of knowing the next will probably have me in bed whithering in pain….

    Sorry if it rambles too long or doesn’t make sense …. one of those days

  16. Holly Baddour moderator author says:

    Hi Tamara- the cycle you describe is one that is familiar to many of us, unfortunately. Weather is a common trigger about which we have many articles, in case you’d like to dig into the topic and learn from others:https://migraine.com/?s=weather&submit=Go

    I’m also grateful that you mentioned the additional challenge of constant surveillance as it applies to our medications each month: how much to use, when to use which medication, and on. This is an enormous part of the life of the migraineur. It’s also exhausting and not anything any of us wishes to spend our time upon.

    Thanks for joining the conversation! Warmly, Holly B. (migraine.com team)

  17. I’m so sorry to read how you suffer because I was there for decades. Well here is what I do:
    1. Avoid every trigger possible ( not always possible!)
    2.Have orchestrated a life style as calm and limited as I can and still feel it’s worth living.Go to bed when tired.
    3. Give love and receive love from special people.
    4.Find joy….think positive.
    5. Know which abortive measures to start
    with, then when I need to, hit the damn thing hard with meds and ice and SLEEP.

    I have found improvement doing this.

  18. Nicole says:

    There was recently a fair amount of turnover at the headache center I go to. The new head of the center has asked that I be more diligent on tracking since I had essentially stopped. After 3 days I told my partner that I remembered why I had stopped– it was a defense mechanism. I have learned to ignore a fair bit of low end of the scale pain. If I pay attention to the near constant pain I am in, I get depressed. It is exhausting.

    I guess on the plus side, he is being more aggressive with my treatment with the info I have given him. I have been experiencing nearly daily scalp allodynia for about 2 years. My previous doctor was starting to investigate if I was maybe experiencing cervicogenic headache in addition to chronic migraine. PT was a bust– every visit triggered a migraine. I had a 4 injection occipital nerve block yesterday. I can’t feel the allodynia anymore, but 24 hours later the back of my head is still numb and the sensation of having the back of my head on anything is so strange feeling I woke myself up over a dozen times last night rolling over. We’ll see how it goes.

  19. Holly Baddour moderator author says:

    Hi Nicole- thanks so much for chiming in. I relate to you on so many levels. I agree it can be disheartening to keep track of migraine attacks when they are constant. Record-keeping can make it hard to put a positive spin on things. I’m a glass-half-full kind of gal, so I tend to grab onto whatever well-moment I last had and focus on that, rather than the hours of pain that surrounded it. Having to document those hours of pain would make it hard to do so.

    I’m also an allodynia gal. Don’t let anyone tell you that cutting your hair off will make it better, by the way. I cut my long hair off because someone said it would help, and my short hair hurt just as much. I’ve had the nerve blocks of which you speak many times. It is an odd feeling when you can’t feel the skin on your scalp. Sometimes it can break the cycle for a bit. I hope it works for you.

    Good luck with the new migraine specialist and thanks again for being a part of our community. Warmly, Holly B. (migraine.com team).

  20. tward says:

    This was an aha moment for me. I didn’t realize the stress of constant monitoring was keeping me so stressed! I am luckily on a good treatment plan currently, but as always, it won’t last. So the surveillance never stops.

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