Minding The Gap

My migraine disease is cyclical. It’s been awhile since I’ve had a run this good, pain wise, and I always hesitate to talk about it, because of the whole jinxing thing. I bet a lot of you know what I mean; as soon as you breathe a word of “Wow, I’ve been doing really well lately,” you wake up with a killer migraine the next morning. I’ve had migraines, but they are easily treated. Some days, I have no pain at all or just very mild pain… and a few times, I’ve been treated to this reprieve several days in a row. The cumulative trigger stacking that was going on at the beginning of the month seems to have dissolved, allowing me to be less vigilant about my food and sleep patterns. In fact, right now it’s 1:15 am and I’m re-watching season five of LOST with John and eating Toffifay chocolate and hazelnut candy.

Not holding my breath

This easing of my symptoms has been going on for about two weeks. I do know whether I talk about it or not, in time, either tomorrow or next week, my typical near daily migraine attacks will return with a vengeance, and having gotten used to a real life again, I will have a particularly hard time accepting the impact of their return. But there’s something else. Every time this happens, when I have what I think of as a migraine gap, my brain seems to compensate by emptying of serotonin, or something, so that I end up getting horribly depressed. I’m not in pain, so you’d think I would be up and doing fun stuff, and organizing and cleaning my house, and catching up on time with John and the girls. But no. I’m in bed ANYWAY, because I’m depressed.

Recalling the first migraine gap

The first time I can remember this phenomenon occurring was around 2002, after my first Botox treatment, when it was still being studied for migraine and not yet FDA approved for it. I was thirty years old and the only way I could get the treatment was for my parents to pay for it, out of pocket. And it worked. At the time, I was on the verge of being chronic; very heavy episodic is what I would call it. I was still working full time at the coffee shop, but missing a lot of shifts. Married before kids, with migraine attacks hitting constantly two to three days per week. Every six to nine months I was hospitalized to clear my system and reset myself; several other times per year I needed IV fluids and meds in the ER.

The short-lived reprieve

After the Botox, it was like I could finally breathe. Like I had been living underground, and could finally walk in the sunlight. I laughed at the frozen nature of my forehead, at how my eyebrows couldn’t raise anymore. I spent more time with friends, rediscovered my husband as a partner rather than a caregiver. I was free. And then, soon, darkness descended again, because some sort of dirty trick of my migraine brain had to cause suffering. I became very, very anxious and sad. I was unmotivated and lost, and became as paralyzed by the depression as I had been by the pain.

We had theories. I thought maybe after living for 20 years with a constant companion of migraine symptoms, in their absence I didn’t know what to do with myself. Time that had been spent in bed, in multiple dark rooms, sedated and sleeping or wracked with pain and crying, vomiting or meditating, was suddenly wide open and empty. I didn’t know how to live that kind of life, a real life, but yet to me, “real” was migraine disease. In its absence I was confused. I went back to bed, the comfortable refuge where I’d spent half my life. And on top of the confusion and depression I felt guilt, because my head and eyes felt clear. Why couldn’t I enjoy the reprieve?

Trained to wait for the other shoe to drop

Another theory was the fact that I knew it would only be a reprieve, temporary, and didn’t want to learn to enjoy it. Maybe I could get Botox every three months for the rest of my life, and be essentially “cured,” but every previous treatment that had given me this much relief had stopped working. Two come to mind, both of them medications now removed from the market. The first, when I was in high school, was the odd combination medication called Bellergal-S, which contained, of all things, the poisonous in large doses belladonna (which has become so controversial recently in Hyland’s teething tablets), ergotamine, and a barbiturate. My neurologist at the time had me take that for three weeks, preventatively, and Anaprox, a prescription NSAID, for three weeks and keep rotating that way. It worked for six months and then didn’t anymore. The other was Sansert, or methysergide, which was extremely controversial in that it was an ergot similar to the formula of LSD and also could cause heart problems severe enough that I had to take a break from it every few months and have tests done. In fact I had to find a new neurologist who would consent to allow me to continue on it long term. But Sansert stopped working too. I thought of this as the migraine finding a way. The migraine was smarter than the medicine. It would find a new route. And I knew it was very likely to find a way around the Botox too.

Or, maybe it’s all chemical

The last theory I had was that migraine disease (not that we called it that at the time) never goes away. If the pain mechanism, the nerves or proteins which prompted attacks, was stopped, then the illness would manifest itself in another way, attack my brain not with physical pain but emotional pain. The activity in my brain which had been so oversensitive and reactive for twenty years suddenly lay dormant, and it wasn’t happy being quiet and still. Whether it is serotonin, or dopamine, or just electrical impulses, they wanted to be doing something. And so they did, and the result was depression.

After several weeks, back in 2002, the depression faded and I enjoyed some relatively pain and depression free time. My next Botox treatment worked less well, though I tried to remain optimistic. The third one left me with bruises in my forehead and no relief at all. Ten years later, with insurance covering it this time, I still would not get any relief. I tried three Botox treatments, three months apart, and nothing. The third time, I had side effects and ended up needing physical therapy for my neck to return to normal.

Enjoying the small victories

And now, involved in my second CGRP trial, I am enjoying my third week of the absence of attacks. And though there are circumstances going on which would cause depression in the anyone even slightly prone to it, this feels like “migraine gap” depression. And, in fact, the day after writing most of this article and fighting the pull of the bed to stay up late to watch TV with John, I did get a severe migraine. I lost two days to the dark room and used all of my new 3 mg sumatriptan injections, but did not have to go to the ER even though it’s been a month and it felt like the same type of migraine that proved so hard to break last time. A small victory, but let this serve as an impetus for me, in the future, to mind the gap. And when that depression eases up, a migraine may be imminent. And I guess I need to continue to mind the jinx as well. And sugar and sleep patterns.

Have any of you noticed this phenomenon when your migraines lessen? Feel free to let us know in the comments.

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 (14)
  • Goodmaus
    2 years ago

    I have had this same problem. I have a long pre and postdromal period tacked on to each end as well, where my cognitive impairment is significant. I have hypothesized that the depression comes from exhausting certain neurotransmitters, which are also involved in migraine. I find doctors to be insensitive to the problems associated with this condition. They make me feel like a guinea pig. I am 67 years old, and have suffered from migraine since I was 11 years old.

    I tend to get side effects easily, not the least of which are more migraines. There is a long list of failed treatments, including those that worked for only a short time. I recently was put on the last anticonvulsant drug, with minimal impact. I am still on Lamotragine, which was also minimally helpful for a year. No one mentioned how hard it is to get OFF Lamotragine. Makes one anxious and irritable. They could have mentioned that! I recently learned it can take up to a year to titrate off.

    But still he wants to experiment, saying maybe some of the failed drugs will work this time! After more than 50 years I am just going to live the best I can, and go in for prednisone when I go into status migrainosis. Depression is just another symptom to learn to accept. On the good days I try to do something useful and something fun. I try to be patient with myself. I persevere.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Goodmaus,

    I’m so sorry I took so long to reply to this comment. I really understand how you feel. I like this: “Depression is just another symptom to learn to accept. On the good days I try to do something useful and something fun. I try to be patient with myself. I persevere.”

    Good for you!
    elizabeth

  • Maureen
    2 years ago

    Elizabeth, At the Jefferson Headache Center having a psychological profile done as part of your initial evaluation is necessary, and having a psychologist or psychiatrist assigned to your team is part of the standard care. I would suggest that this is the time to talk to a professional. Depression isn’t a feeling, it’s an illness. And it is often comorbid with migraine. I’m guessing the chemical connection, but some good talk could go a long way sometimes. My personal two cents is that we live in a perpetual state of fight or flight and when your body feels “better” it kind of shuts down for lack of any idea of what to do. It is like it needs to go into hypersleep to recover or something. It needs the reset button pushed, maybe. A call to your doctor would not be out of order, maybe.
    Be well, Elizabeth. You are not alone.
    Maureen

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Maureen, I appreciate your concern. I have been treated for depression since I was a teenager, always on an antidepressant and frequently getting talk therapy. I currently see a psychologist who specializes in pain and biofeedback. My depression is actually more under control now than it has ever been, and my baseline mood tends to be one of contentment more often than not. The depression flares more when I have less or more pain than usual, which I know to expect.

    University of Toledo Medical Center, where I was a patient for twenty years, also requires psychological care for chronic migraine. I know Jefferson is a top of the line facility and I’m glad migraine patients’ states of mind are not being ignored. Even if someone does not have diagnosed depression, living with so much pain is depressing in itself.

    I am seeing a new GP next week who has a very good reputation among those with chronic illness. I plan to let him know that I am noticing depression and anxiety a bit more just in the last few months along with the improvement from the study. Thanks again Maureen. <3

  • Alison
    2 years ago

    I’m so glad you wrote this article, but sorry it gave you a migraine. This has been my life for 20 years, exactly the same pattern. I had botox a month ago and had three weeks migraine free. Like you I didn’t know what to do with myself and got very down. Depression is not something you can push through for me, it is a very real illness. Being well reminds me that I have no social life, friends, hobbies etc to fill my time and end up doing housework and nothing else. Now they’re back with a vengeance, knocking me off my feet, and as always I’m amazed that I had forgotten how painful and debilitating they were. I only have botox once or twice a year if I know I need that week or two break, this time for an operation, but it helped me through the worst.
    I hope the new treatment helps you and many of us in the future but won’t get too excited.
    Where the depression is concerned I’ve just found an anti- depressant that doesn’t make my migraines worse, having tried many that do. I am feeling stronger already and better able to cope with this chronic illness.
    Thank you again for this article, I don’t feel so alone with this now and it’s good to know I’m not the only one experiencing this pattern of migraine and deoression.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Alison ~ I’m so glad you’ve found an anti-depressant that is better for your migraines! As of last year I have finally gone back to my old standby, Zoloft. It does work very well and doesn’t exacerbate any of my other conditions the way so many meds have. It’s so hard to go through all the trial and error, isn’t it? I am very nervous about the end of my clinical trial, and nervous about the FDA acceptance of the CGRP meds and how expensive they will be. I feel so lucky to have come through the depression still able to enjoy some more low-pain time, and since I am not having pain every day it’s more obvious to me that depression and anxiety are also part of my prodrome. Thank you for your comment and I’m so glad you’re feeling stronger!

  • Tamara
    2 years ago

    I find the depression harder to fight than the pain. Today I woke up – awesome mild pain (mine has been sitting at 6-8/10 for 3 months now). YES I can get stuff done ….. then came up stairs, morning routine and in the middle I swear I got hit in the chest and literally made me bend forward and started bawling and having a panic attack. I sat on the couch for a couple and then drove to work and tried working but I starting crying because I couldn’t find a product …. and went home lol. I finally was able to work through it and feel a touch better now.

    I definitely get depression as a prodome, it comes like clockwork and I feel super drained afterward. I get very fustraeted now after and get depressed I lost all that time, my house is a diaster, I, behind in this and that. So lots of time is spent in bad head places either because of the actual pain or recovery ….daily. migraines sure are fun, I never know if one is ending or another one is started – they just melt together now.

    I wish there was a med that would instantly help, like pain medication (when they actually work). I never know how to treat the attacks when they happen. I’m citalopram that is suppose to help (maybe it does, maybe it doesn’t) and amptriplyne 30mg; cymbalta, Wellbutrin doesn’t do anything.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Tamara, I’m glad you are feeling a little better after your panic attack. I can definitely relate. Are you taking all four of those meds now, or are Cymbalta and Wellbutrin ones you’ve tried and stopped taking? It would be nice if you could get an anti-anxiety med to take as needed, some of them seem pretty effective at stopping panic attacks in their tracks. Now that my migraines have spaced out a bit from each other, I can tell that depression comes with my prodrome too. I hope that you come through this soon! Take care. <3

  • Wvagirl1968
    2 years ago

    I thought I was the only one this happened to! Honestly thought there was something wrong with me. I have had this problem many times, and wasn’t sure it was a normal part of the cycle. I have migraine brain fog quite often now( have had migraines going on 14 years, and now in my late 40’s) and even the way my migraines present are beginning to change. I now also have silent migraines usually as prodrome symptoms, but never connected the depression and fatigue with having a few days of migraine free time. At least now I realise this does happen to other people too. Thank you for sharing this with others. Take care, Lisa.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    I’m glad to have helped you Lisa! It is so nice to not feel so alone. And you are definitely not ❤

  • Luna
    2 years ago

    I do relate to what you are saying. I’m too old and don’t have enough energy take the chance. I’ve learned to live my type of healthy lifestyle and not give in to self indulgence. It isn’t worth it. When I start having the thought “wow, I’m doing pretty good” then in a short while I say “Just the calm before the storm, enjoy it, it won’t last long.” I also don’t allow anything to keep me in bed if at all able to be up. I get up and do my routine and some days there is no motivation or brain power to really accomplish much but that’s ok. Laying down makes me feel worse, physically and mentally. That is not an option. Sometimes I have to recline on the sofa for a while usually with a heating pad but that is better than being in bed.
    When depression hits I may start to wallow in it but can’t stand the emotional trip. So within a little while I remember my depression fighting routine. Put on music that helps lift my spirits and find a distraction or three. Anyway, that is my current plan and I’m sticking to it until something better comes along.

  • Luna
    2 years ago

    Sorry, I wasn’t referring to depression in the self indulgence sentence. I was referring to lifestyle such as eating/drinking what I shouldn’t and messing up my schedule.

    About depression I am sorry you and others have a depression that takes over so completely. That is a very difficult emotion/physical space to deal with. I am more fortunate in that I can ride mine out with my routine because with my chemical sensitivity I CAN NOT take drugs. Many herbs cause a scary reaction in my body also.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hi Luna,

    I don’t feel as though the depression is giving in to self-indulgence. I literally can not fight it sometimes, any more than I can fight head pain. The best I can do is ponder it, and write about it, when it passes. The guilt from the depression is worse than it is from migraine.

    I’m really glad that you are so able to tough it out. Maybe I’ll get there.

  • Luna
    2 years ago

    Guess I better get out and get the firewood chopped and brought in before dark. 🙂 🙂

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