The Emotional Roller Coaster Ride from Chronic to Episodic and Back Again

The Emotional Roller Coaster Ride From Chronic To Episodic and Back Again

If given the option to have pain every day or just a few times a week, most people would probably choose the latter, right? Of course. When it comes to the complex neurological condition that is migraine, the issue is not so simple and we don’t get that choice. Some of us have chronic migraine and others of us have episodic migraine. Still others transition from one to another and then back again or have some combination of the two. Of course there is no way to say one type of migraine is better or worse than another. Pain is pain and migraine pain, no matter how it presents itself, is particularly severe and sometimes terrifying in nature.

A reprieve

Having lived with chronic migraine for years, with spikes of specific migraine attacks atop a constant baseline pain, I recently noticed some odd benefits that come with this pain pattern. I would probably have never observed such a thing except I recently experienced a brief reprieve from the constant pain. It was phenomenal. To experience a moment free of pain felt like drinking the freshest, cleanest water in the world. I was able to breathe deeper than I had in years. Knots in my musculature that had tied themselves five times over began to loosen. I couldn’t believe that this respite was real, so I wasted the first couple of days in fear of triggering an attack. But after a while, I began to enjoy the world in a different way. I made plans with friends and actually kept those plans. I spent time doing yardwork without triggering an attack. It was glorious.

It’s baaaaaaaaaack

Of course, before too long, a migraine attack arose and I ended up back in bed. The attack itself was not particularly intense in terms of severity or length, but it threw me for a terrible loop emotionally. That I was hit so hard on an emotional level was surprising and caused me to reflect in order to find some answers as to why.

When migraine causes us to be in pain every day for a long period of time we eventually adjust to the reality. Initially, when the condition transforms from episodic to chronic, there is a huge amount of emotional turmoil and work that goes into accepting the fact that we will likely be in pain more days than not. I have spent years doing that work and eventually made peace with my reality. Experiencing a reprieve from that daily pain and reverting (albeit temporarily) to episodic migraine was an emotional roller coaster I didn’t expect.

It is, of course, a welcome gift to have any moment free of pain. We feel the largeness of life on a level we have otherwise been missing for perhaps years (even if we have reconciled ourselves to such a reality). Feeling that wonder is both amazing and melancholy because it is a reminder of all we’ve been missing.

SURPRISE

On the other hand, shifting from chronic to episodic means adjusting to the reality of being surprised by severe pain when it hits us out of nowhere. This is one of the few benefits of having chronic daily pain. It is something we can count on. We know we will be in pain every day- and we can plan our lives around the reality. Episodic migraines knock us completely off stride as we live life. It’s a shocking and defeating experience. It is also one I had completely forgotten about. It’s been years since I had a freestanding migraine. It was baffling and disheartening to get knocked down when I had been standing up straight. It is a completely different experience from chronic migraine, which keeps me doubled over in a constant state of pain.

The truth is, it is hard to find any real benefit in either reality. Having episodic or chronic migraine are debilitating and complex life experiences. They surely are quite different, and I’m certain if any of us were given the choice, we would choose neither. Still, interesting to consider the differences and moreover to appreciate the challenges we all face as migraineurs.

Are you an episodic or chronic migraineur? Do you see any benefit in one or the other?

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 (9)
  • Elle
    1 year ago

    Hi Holly I read you post and your experience rang a few bells with me. I have had chronic migraine forthe past 5 yrs but was only officially diagnosed in January, so it’s really a new concept for me. I had dealt with episodic migraines all my life but only once or twice a month, so I just put up with them really. Then I started getting a mild headache about 5 yr ago that wouldnt go away. I had seen a couple of neurolgists who just seemed indifferent and dismissive. The pain was mild enough that I could carry on as normal mostly, though I still got my familiar migraines on top . I never made the connection between my daily headache and my migraines, I assumed they were two different animals altogether. I feel at least it should of occurred to the neurologist. The daily headache eventually started getting more intense and disabling. (its very insdious and seems to creep up on you.) So I eventually found a headache specialist who at last gave me the diagnosis. I was really just relieved to be able to put a name to it. With the episodic migraines I was never really able to pinpoint any consistent triggers I just carried on as normal until the next attack, but with this daily headache there seems to be so many. I have become increasingly isolated I rarely go out, even to the shop. Often even holding a conversation with somone is difficult, housework is a challenge as even a little physical effort is enough to exacerbate the pain. Noise is a problem. I tend to watch telly with the sound down with the subtitles….boringly the list goes on. In short, I am only in my late 40s yet I feel about 90 and now living in a twilight world.
    My point is, though I haven’t gone from chronic back to episodic yet, I have totally forgotten what it is to wake up without pain and would do anything to go back to just having episodic migraines and at least being able to live a normal life between attacks. I can totally understand how devastating it would be to be given that reprive an then have it taken away, but honestly on balance I’d take it in a heartbeat even for a short while (enough even just to take a short holiday, enjoy some loud music again and clean my house properly ha ha). Thank you for this oppurtunity to share. It was my latest doctor suggested I would benefit from trying this site and he was right. It woudn’t have occured to me otherwise. It’s so good to know you’re not suffering alone. Friends and family can only understand so much.

  • Holly Baddour moderator author
    1 year ago

    Hi @elfie! I’m SO glad you followed your doctors orders and gave migraine.com a try! Even better that you shared some of your story with us! We are all the stronger for hearing about each others’ journeys as they serve to connect and remind us that we are not alone – especially when it comes to such an isolating disease. I’m so glad this article resonated with you particularly much. And yes, you are right, just tasting some pain-free days can give you strength and serve to refill your reserves such that you might be a bit stronger to handle the onslaught of chronic/daily pain if/when it returns. You mentioned feeling as if you’ve aged due to the migraines, and I thought you might find this article of interest:https://migraine.com/living-migraine/when-migraines-age-us/ . So glad you are a part of our community! Please stay in touch. Warmly, Holly

  • lcor8706
    1 year ago

    Holly, thank you for sharing! I started to write to you back in February but was afraid to say it had been 2 months (longest time ever) since my last migraine. I was becoming cautiously optimistic about a new hormone therapy I started in December. I was hesitant to share my news with anyone other than my husband because I suspected at some point it would rear its ugly head once more. And it did with a vengeance! The disappointment was devastating but then I began to realize without the bad days, the good ones would not taste so sweet. And sweet they were. To wake up without pain was amazing and I am not sure it would have felt so amazing had there not been so many pain filled mornings(which is typically how mine start, like a freight train running through my head at 3:30 a.am.) I also realized just how strong we migraineurs really are to continue doing life or at least trying despite the pain. I have waffled between chronic and episodic migraines but have rarely gone more than a few days, week at the most without a migraine. I am so appreciative of those like you, who are wiling to share the journey. My community of “migraine friends” are yet another big blessing to come from my migraine journey. I have adjusted my hormone therapy yet again and am hopeful fewer migraines will be the result. Of course at this point, I am not sure why I had the reprieve from my migraines and so the detective work continues!

  • Holly Baddour moderator author
    1 year ago

    Hi @lcor8706– I believe you and I would be fast friends were we to meet in person. I absolutely love the way you do your best to put a positive spin on having a very hard hand dealt to you. You are clearly a glass half full type of gal in the way you have sought gratitude from life’s hardest challenges. You are so right that without the difficulties, we could not appreciate when things go our way (relatively). I do believe that Migraine has a way of helping us feel gratitude, feel compassion, stretch our understanding of patience, and learn to live in the moment. You might find this article on the topic of interest: https://migraine.com/living-migraine/looking-for-the-bright-side-of/. Also, you mentioned being a detective to try to figure out why things changed. Sometimes there is no rhyme or reason to be found- but we do our best to look:https://migraine.com/living-migraine/detective-triggers/ . Hormones can be a huge driver when it comes to Migraine- and just when you have things figured out, the levels (whether the ones your body makes or the ones you take) can shift again. This article might be of use, but if not, we certainly have others on the topic if you simply search for hormones in our search bar:https://migraine.com/blog/the-womans-guide-to-managing-migraine/. Lastly, you mentioned having a community of migraineurs- that is so key. For many, that community is right here. Wonderful if you have a few people in real life who share your experience. If not, migraine.com is teeming with thousands of people who are trying to navigate similar challenges – eager to share support, what hasn’t worked and what has- so that we can all learn from one another and grow together. I’m so glad you’re a part of our community and hope you’ll stay in touch and continue to share your story with us. Warmly, Holly

  • 1 year ago

    I have migraine that is primarily Aura and it’s chronic. I didn’t even know I had it for most of my life until I had an acute episode and was diagnosed. I spent 40 years feeling crappy most of the time and blaming it on any number of things. Some days I wake up and I am clear of most symptoms and as you say, it’s glorious and I try to figure out what I did and didn’t do to get there. And it never lasts for more than a day or a few days. I get very anxious, demoralized, depressed. When I am having an episode, I am nauseated, the world rocks back and forth, I lose motor skills and slur my words. My brain is fogged, vision blurred, my arm and leg go numb. I’ve had people in meetings ask me to repeat things, I once had a friend tell me she thought I was over medicated because I left her a VM and my speech was slurred. The other night I had to attend an important work dinner and I spent the entire night focusing all my energy on enunciating as not to sound drunk (even though I’d barely had a sip of alcohol, alcohol was served so how would they know I wasn’t drinking). It’s a nightmare and I’m limited in what I can do. So maybe I’m not on a roller coaster, I’m just on a ride all the time that I can never get off.

  • Holly Baddour moderator author
    1 year ago

    Hey @snoopy10– Thank you so much for sharing. It sounds, from your description, that you might be experiencing aphasia- which is a fairly common migraine symptom. We have a number of articles on the topic you might want to check out: https://migraine.com/?s=aphasia&submit=Go . This one in particular might be of interest: https://migraine.com/stories/reading-writing-associated-aphasia/ . I bring this up mainly because you might want to discuss it with your doctor (although I don’t know of any targeted treatment for it- though the author of the last article mentions speech therapy). It was helpful for me to get the diagnosis because I am able to tell people that I have aphasia (when I can remember THAT word…) so that others understand that I’m not drunk/overmedicated but rather experiencing yet another symptom of migraine. For me it has become yet another powerful demonstrable example of the fact that migraine is a complex and far-reaching neurological disease. Thanks again for sharing. Please stay in touch! Warmly, Holly B. (migraine.com team).

  • staubscr
    1 year ago

    Holly,
    I am a physician. What she’s describing is slightly different than aphasia, it’s slurred speech which is called dysarthria. It is due to a problem in the motor cortex of the brain that controls the muscles of the lips, tongue, throat, or lungs that physically help form words. Whereas, aphasia is a problem in the speech centers (receptive and expressive) which causes a problem with understanding and/or mentally forming words.

    I get some mild expressive aphasia and dyslexia with some of my more severe migraines.

    This was a very insightful article, Holly. I have definitely experienced the emotional whiplash you describe when a migraine strikes after being symptom free longer than usual.

    Best regards,
    Charles

    PS This site should be mandatory reading for headache specialists, because what they don’t know from a patients point of view about migraine could fill a textbook.

  • pigeongirl
    1 year ago

    i’ve had periods of both, and even periods of only 2 attacks per month, each lasting 2-4 days. i do prefer not having SO MANY days affected. it gives me a chance to catch up, since i’m pretty useless during attacks (FHM with alice-in-wonderland and so many symptoms it’s ridiculous). i’ve tried and tried to mimic my life perfectly to copy the times i’ve been sporadic or episodic… copied diet, activity levels, bedtime and waking time- you name it! i cannot find the missing link- yet! weather is a huge issue for me, certainly a factor when i’m episodic, i feel every pressure rise and fall, sustained highs and lows, and winds too (without being outside at all). i live in the area of the Chinook winds, and before/during them i am tortured. i’ve discussed that with my child’s specialist and some other medical people- and even some psychologists are aware of effects of weather (including the school’s psychologist here) and it’s great that many do know since it’s such a dramatic impairment. a lot of my attack hours are painless- just nausea, vertigo, confusion, aphasia, clumsiness, some hemi-paralysis, and more to=just as disabling as the pain times.

    it sure would be nice if we could sort out the ‘why’ when we have a reduction in attack days!!!

  • Holly Baddour moderator author
    1 year ago

    @pigeongirl– you are SO right! It can be maddening to try to retrace our steps to find that perfect combination of things that seemed to add up to the migraine free day. We try to replicate it to no avail. We turn into detectives looking for clues: https://migraine.com/living-migraine/detective-triggers/. And yes, the weather is an enormous trigger for many- very hard to avoid! Thanks for sharing. Warmly, Holly B. (migraine.com team).

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