From Chronic to Episodic: An Illustrated Journey

A doctor once told me that migraines are like a river. She said my health is a bridge, and if the migraine river is overflowing I won’t be able to cross. Basically, when it rains it pours. Three years ago I was drowning. My migraines became daily, severe, and uncontrolled.

I want to talk about how I became chronic, and then how I became episodic again. As Kerrie mentioned, we often don’t hear these stories because the people who start to feel better no longer participate in the migraine community discussions. So in case it can give someone hope, I will share my story.

The main factor I believe led my migraines to progress to chronic was the lack of diagnosis. Studies show that inadequate treatment of migraine can cause greater risk of developing chronic migraine.1 Despite complaints of very typical migraine symptoms such as throbbing head pain, fatigue, sensitivity to light and sound, and a stiff neck, I was repeatedly undiagnosed and untreated. Why did this matter? Because in my experience, migraines can build on each other, and each attack caused me to be more susceptible to the next attack as the patterns are reinforced in the brain. This phenomenon is called central sensitization. When it rains it pours.

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This lack of awareness and understanding led to an unmanaged condition. Everyone gets headaches, right? I would think. Or, It’s just a headache. Because I didn’t have anything to prevent or treat attacks, they were repeatedly reinforcing their pattern on my brain and getting worse over time. I finally got a diagnosis three weeks before what I like to call “my migraine brain explosion into chronic craziness.”

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I faced some roadblocks and it seemed hopeless. I had inadequate health insurance. I didn’t know how to manage migraine. I had a small amount of imitrex tablets, but that felt like fighting a tide with a chain link fence.

So what did I do to tackle this problem? I took a series of steps to slowly and surely start to lower the water levels of the river. I had to reverse the process of central sensitization in my brain.

I knew I needed to learn more about migraine in order to fight the rising tides. I learned about migraines on the web, in books, and podcasts. I quickly learned basic concepts about migraine management and found a headache specialist who started me on a treatment plan.

One part of my treatment that I feel was key for me was the use of triptans to aggressively treat every attack. This treatment is still controversial for chronic migraine patients because of the frequency of our attacks putting us at risk for medication overuse headache. However my doctor and I knew that my migraines were not a result of medication overuse as I had not been treating them with any medication prior to my recent diagnosis. The triptans helped keep some migraines at bay, and so I believe my attacks had less of a chance to snowball.

I wasn’t yet emptying water from the river, but I was learning to stay afloat during the waiting game of trying different preventive medications.

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With my life preserver in place I tried as much as I could. Different things work for different people, so much of migraine treatment is trial and error. It would take another article to list everything I’ve tried, but here are some key things that helped:

  1. Preventive medications: Gabapentin and Botox injections.
  2. Abortive, acute, and rescue medications: Imitrex injections, maxalt melts, zofran, and cambia.
  3. Rescue medications to avoid ER visits: Tramadol.
  4. Triggers: To help identify triggers: an elimination diet and migraine diary. To help avoid triggers: TheraSpecs glasses, ear plugs, lifestyle changes such as a regulated sleep schedule, work with a gynecologist on hormonal triggers, and much more.
  5. Diagnostic tests to rule out other conditions: A brain MRI, blood tests, and sleep study.
  6. Alternative medicine: Naturopathic doctor, Ayurvedic doctor, 2 Chiropractors, 2 Physical Therapists, and mindfulness meditation.
  7. At home self-care: Ice packs, pain creams and patches, stretching/yoga, rest, hot showers.

Not all the therapies worked and some therapies made me feel sicker. Every day was a challenge. All I could do was keep persisting; email the doctor with new questions, ask about a new therapy or certain tests, and keep getting up again after I had been laid flat over and over. Sometimes it felt something was helping and then I would have a setback. But slowly the treatments that did help started to prevent or stop an attack. With less attacks, my brain had a chance to desensitize. I progressively needed stronger triggers to get an attack, and was less sensitive to even my major triggers that would have guaranteed an attack before. The water levels were finally lowering.

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It took a good year or so to see meaningful improvement, and now 3 years later my attacks are no longer chronic. As I am writing this, I recently had two migraine attacks. I can tell you the triggers for those attacks and also that I treated both successfully before they interfered with my life. I know from having been chronic what a dream this new reality is. I also know I face a lifelong challenge to constantly stay in balance. The possibility of the resurgence of my illness always lurks in the back of my head. But for now I am grateful for how far I’ve come and hope that sharing my story may help others.

Don’t mind me while I take a nap on my bridge. I need a bit of a rest!

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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.
View References
  1. Lipton RB, Fanning KM, Serrano D, Reed ML, Cady R, Buse DC. Ineffective acute treatment of episodic migraine is associated with new-onset chronic migraine. Neurology. 2015;84(7):688-95.

Comments

View Comments (26)
  • Mardie Crucchiola
    4 years ago

    I too listened to Drs about taking IMITREX every day. They were all that relieved my headaches in 30 minutes. I soon got off of them because Drs told me rebound headaches. My headaches returned after 6 weeks with nothing. I then started taking tylenol extra strength everyday. Then when that didn’t work I started taking excederin with caffiene. That stuff is lethal. In December i went off everything chronic pain everyday. It was so horrible about ready to kill myself. Tried all the home remedies. Finally in April got to headache/migraine specialist. Learning how to calm brain down with a drug called bacoflen. It’s been better but at least it’s not everyday. I can take 9 Imitrex a month now if bad. She doesn’t think I had rebound headaches. It was just like you said the brain changed patterns. Too excitable.

  • Susan L
    4 years ago

    My neurologist cautions me not to take any analgesic more than 3 times a week – including Tylenol – or risk getting rebound headaches. Also, the triptans are very dangerous if you take more than a certain mg. Dose daily, and more than 3 times weekly. Opioids are infamous for causing rebound headaches. Treatment for pain is very problematic not only for your migraine, but if you are a migraineur with other pain. But sounds like you need a careful evaluation of what to take, how much of it, and when. I’m guessing some of these meds will work if properly administered.

  • Lisa Robin Benson moderator author
    4 years ago

    Hi Mardie,
    Thanks for sharing your story. Detoxing from medication is never fun and I’m sorry you had to go through all that. Some patients cannot tolerate daily triptans, and they do cause rebound in some patients. I’m glad you now have a preventive that helps and are able to effectively treat attacks–that’s great!
    Be well,
    Lisa

  • bluu
    4 years ago

    Lisa thank you for sharing your story. I know the subject is being chronic and going back to episodic. Have you heard of someone going from transformed to chronic or episodic?

    I had been chronic for years but after the sudden death of my husband 5 yrs ago, they changed to transformed somewhere along the way.

    I do what I’m suppose to do; eat right, rest, avoid stress, try to keep a good attitude, take my meds, etc. But I haven’t seen an improvement. Is it possible?

  • Lisa Robin Benson moderator author
    4 years ago

    Hi Bluu,

    Sorry for the delayed response–life has been such that I haven’t been able to make it to the computer!

    First of all, my condolences for the loss of your husband. I imagine that must have been a difficult and stressful time for you, and I’m sorry it led to worsening of your condition.

    I know some people who certainly fit the criteria for transformed migraine (though officially I don’t know if this is their diagnosis), who have shown varying levels of improvement. One has lowered pain levels due to a medication she was put on for another chronic pain condition, one is doing better from getting regular IV infusions of DHE and magnesium, another had done all you do (eat right, take meds etc), and finally showed remarkable improvement when she found a supplement that helped her (CoQ10).

    That is to say that, I’ve known people who thought they’d tried it all. Two of these people even tried a neurostimulator with minimal or no help at all.

    One thing I would ask you is, are you seeing a headache specialist (rather than a regular neurologist or some other type of doctor)? If not, I would find one. Here is a link with some resources to start looking: http://migraine.com/blog/looking-for-a-migraine-specialist/

    If you are seeing a headache specialist, are they helping you try new things, and always ready to help find something new? If not, I would consider switching to someone more helpful. And read, read, read all you can about migraine and chronic pain. Sometimes it’s just about finding the right things that can help.

    Wishing you all the best.
    -Lisa

  • Cathy
    4 years ago

    Thank you for your article Lisa. It does give me hope. My migraines, that were once occasional events, have increased in frequency to the point where I had to stop work over a year ago. The migraines have changed my whole life. None of the preventative medicine works; or I’m not willing to tolerate the side effects of them. But I’m trying lots of other things- such as mindfulness meditation, pain management, physiotherapy, massage, trying to lead a balanced and quiet life. I hope that like for you Lisa, eventually all of this will have a good effect, and the good messages will get through to my brain!
    Interesting what you say about triptans. I suspect you are right on that.
    Anyway thank you very much for giving me some hope that things CAN get better.

  • Lisa Robin Benson moderator author
    4 years ago

    Hi Cathy,

    A lot of the alternative treatments that you mention are so helpful for migraine. Right now Tammy Rome is doing a really helpful series on complimentary alternative medicine (CAM). You can search this site for “CAM” and here is the introductory article: http://migraine.com/blog/migraineurs-guide-cam-introduction/

    Good luck in your journey, Cathy.

    Lisa

  • Sunrider
    4 years ago

    My migraines started as episodic in high school. When I got to grad school, I saw a specialist and eventually started depakote. My miracle drug and saver of my sanity. But depakote and baking a baby don’t mix, so off it I came. I ended up on a several year break, as my doctors disagreed about nursing while on it. When my migraines became chronic – 17-20 in a month, a 5 day long one that ended with a trip to the ER, I put my foot down. Back on depakote a went – half the dose I was on before since my system has been purged of it. Three years later and I average only 1 migraine a month. It’s bliss. With the help of a lovely phone app, I track them, know my triggers better and how to avoid them. Thank you for sharing your story.

  • Lisa Robin Benson moderator author
    4 years ago

    Hi Sunrider,

    You bring up a very good point that women often have to go off treatment that helps them in order to have a safe pregnancy/nursing. I may face that some day as well. I am so glad you have been able to go back on the medication that was helping you and are doing so well.

    Lisa

  • anaenlima
    4 years ago

    Thank you for this article. I was prescribed triptans a few months ago after thirty years of headaches that had become nearly chronic and unbearable. I was afraid to take them every time a migraine started but now I will. I am on the same path you are and your article has been inspiring. I will ask my husband to read it as it may shed some light on how I feel and show him chronic migraines are a fact of life for other people, not just me.

  • Lisa Robin Benson moderator author
    4 years ago

    Hi Anaenlima,

    I hope this article helps your husband too–I know I felt like I was an oddball or that no one else had chronic migraines until I found people on the internet. Then I realized how common it is!

    On the triptans, definitely keep in communication with your doctor about when you take them and if they help or not. I definitely could not have taken them that frequently safely without the guidance of my doctor to make sure I was avoiding medication overuse headache.

    Wishing you well and hope you find something that helps.

    Lisa

  • Sarah
    4 years ago

    Thank you for this. I’ve had episodic migraine attacks for the last 16 years almost. I was 15 when they started. They did not begin to affect my daily life until my first full-time job out of college, and even then it was quite rare. They are still episodic, but have been getting worse and more frequent. I have been fortunate to discover a doctor who is working with me where I currently live (having moved cross-country, away from my primary care of some 20 years). She got me started on imitrex back in February. Sometimes it works well and sometimes it does not. We’re slowly working through finding triggers and a treatment plan that works well for me. Sometimes it is definitely the stress of knowing it’s been a while since my last attack that triggers the next one (last week) and sometimes they come on with absolutely no warning at all (this week) and no apparent triggers. Hoping to find my answers so that I can resume a more normal life again. I’m tired of being stranded at home and unable to work because I can’t quite function…and the stress and concern of becoming chronic instead of episodic just makes things worse, when I stop and think about it, so I’m super thankful to know that while it may get worse before it gets better, I’m at least on the right track to finding my answers to hopefully make it last less time.

  • Lisa Robin Benson moderator author
    4 years ago

    Thanks for sharing Sarah. Being on top of the treatment and learning about migraine I think is a very good guard against being chronic for many people. I also worry about getting worse (again), and I don’t know that I can ever eliminate that fear fully. You sound though like you have the ingredients for getting better! Keep it up and hoping you feel better soon!-Lisa

  • Filek
    4 years ago

    Thank you for your uplifting story. I have had chronic migraines for a few years and they have been slowly getting worse. I recently embarked on a plan similar to what you did and it gives me great hope that you were successful in transforming back to episodic migraines.

    Thank you again for taking the time to put down in detail what helped you!

  • Lisa Robin Benson moderator author
    4 years ago

    You’re welcome Filek, and good luck with your treatment plan. Remember to find your life preserver, whatever that may be, to help stay afloat.

  • labwhisperer
    4 years ago

    Almost 3 years ago, I was clotheslined off a bike (yes, someone put a rope across a road) landing on my back and back of head. Without a helmet, I would be dead. Six months later, my episodic migraines grew into frequent migraines, then chronic.
    My list of trials and tribulations is very similar- drug and non drug.
    I started Botox 2 months ago, got some relief but just had a string of migraines for the past 4 days.
    I also find it difficult to take a triptan with every attack. I just hope it won’t get too bad or I just get defiant and “tough” it out. After reading your article and other people’s responses, I need to do what my neurologist recommends and take them every time.

    Thanks for sharing.

  • Lisa Robin Benson moderator author
    4 years ago

    Hi Lab whisperer,

    So sorry to hear about your accident! I’m glad you have shown some improvement with the Botox. Just so you know, it can take a few rounds to show significant improvement, so definitely don’t lose hope. Also, I also want to tough it out, and over and over when I do I find that doesn’t work for me! Maybe one day they’ll come up with a medicine that you don’t have to take right away to be effective. I feel like I have to catch my attack the moment it starts, and that can be difficult.
    Be well,
    Lisa

  • Sarah
    4 years ago

    Your reasons for not taking the medications sound like me. I, too, hope it won’t get too bad or attempt to tough it out. My other favorite reason is that if it hits me at work, my medications do absolutely nothing for me. They work best if I can take them at home and then go straight to bed, so sometimes I refuse to take them just because I know they won’t do as much good as they could possibly do if it had hit me at home or somewhere I can just hide for several hours.

  • Sara
    4 years ago

    Thank you for sharing! From the perspective of someone who is currently drowning, it means so so much. I hope to get to that point again too. My migraine has been chronic for a little over a year now and i am hoping to get back to episodic someday.

  • Lisa Robin Benson moderator author
    4 years ago

    Wishing you all the best Sara.

  • Violet
    4 years ago

    Great article – for many reasons. It shows us that there are different strategies to fight the beast migraine.

    The longer I have migraines and the more I do my own research, the more I am convinced that sensitization is a central factor that is being underestimated and not enough communicated. I have heard it from many people: I should have fought it harder twenty years ago, now I am chronic.

    I myself hate pills (because it’s not healthy, ha!) and it took me a while to realize that my strategy (avoiding to take a Triptan as long as possible and to hope that the attack is mild and bearable) was plain wrong. With hard work I am down to about six mostly mild attacks each month, attacks I would have tried to survive without any medication many years ago. And guess what I do now? I pop a Triptan every time, no matter how mild it is. And I am still getting better. That doesn’t mean that popping Triptans is the solution. I wouldn’t have come that far without preventatives.

    Your article teaches that the path of desensitization can be a very good strategy. It also shows, how important a very good headache specialist is, despite the restricted treatment options we have.

  • Lisa Robin Benson moderator author
    4 years ago

    Thank you so much for the feedback Violet–I hear you on the not wanting to take pills. I see it as a necessary evil for the moment, maybe some day there will be a better solution! I’m glad you are doing better, and hope for continued improvement for you!

  • Katie M. Golden moderator
    4 years ago

    Lisa!
    Your drawings are amazing. And your story gives hope!
    Nicely done!
    -Katie

  • Lisa Robin Benson moderator author
    4 years ago

    Thanks Katie!
    -Lisa

  • RobertCan
    4 years ago

    While every journey is unique, I find it incredibly helpful and empowering to read about EVERY successful component of someone’s treatment.

    I transitioned from episodic to chronic following a minor car accident in 2010 when I was rear-ended by a truck. I’m currently on a treatment path designed to return me to an episodic migraineur. It’s too much to hope for 100% relief as that rarely happens, but it’s realistic to strive to reduce the number of attacks to a manageable level. Chronic (almost daily) migraines are evidence that migraine is out of control. I’ve lost control of my life but the one thing I can control is my response to it .

    Wishing you all a pain-free day – robert

  • Lisa Robin Benson moderator author
    4 years ago

    Hi Robert,
    I’m glad you find this sort of article helpful! Sorry to hear about your accident and I hope your treatment plan shows you some improvement soon. You’re right that it’s unrealistic to expect complete remission but there definitely is room for improvement from daily migraines!
    Wishing you the best!
    Lisa

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