Migraine Limbo Land

Much attention is given to the severe pain and debilitation that accompanies most migraineurs’ attacks. It’s true that, for most of us, the headache, nausea, and increased sensual sensitivities that are usually part and parcel of migraine episodes are what usually gets the attention from us and from those observing us. At its most painful, it’s somewhat hard to describe migraine as a wholly invisible disease, at least as far as my looks are concerned: during really severe attacks, my eyes are dilated and glassy, I can’t tolerate any loud noises or light, and I look as if the color and shine have been wrung right out of me. It’s pretty easy for friends and family to tell that something’s off and that I’m not feeling well at all.

But there’s a weird hazy mode that many of us have to deal with, and it’s hard to describe to others, let alone to ourselves. For my part, I consider what I’m about to describe as a sort of migraine limbo, the time when you are trying to decide if the migraine is going to set in full force or if I’ll be spared this time around.

If you’re on triptans treatment for acute migraine care, you’ve heard the following line before: “Take at first sign of migraine.” Well, for those of us who deal with the migraine limbo, especially if our migraines are chronic, this can be risky. Sometimes the migraine starts to roll in and then recedes again either on its own or after a little rest and relaxation from you. And other times it barrels in with little warning, settling in fully and making it even harder for your triptans to work.

There are indeed many days when I’m affected by actual migraine pain and debilitation, but lately there’ve been just as many days that are affected negatively by migraine limbo. I feel a little off, a little tired, a little dizzy and nauseated. I can still function normally and often don’t end up getting any worse, but my day is still being strongly affected by this disease.

How many of you have lived in Migraine Limbo with me? Has this sort of thing happened to you? How do you cope with days when your migraine is affecting you but is not so severe that you become debilitated?

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 (37)
  • jimhagen
    6 years ago

    Also – I never really wake up completely – I can only simulate complete wakefulness by drinking coffee – 6 to 8 cups a day…

  • jimhagen
    6 years ago

    The Migraine Girl – One of the issues with migraines is that is only seen by some as being a headache – possible with signs and symbols that warn of the headache… What I learned is that it is a disease and the prodrome, aura, and postdrome are also disease symptoms and can be as problematic as the headaches…
    I have severe headaches every day and I have at least four different types: post-traumatic migraine, TMJ, Tension, and Sinus… Most people don’t know about having a headache that causes frequent urination… but the pee that goes with the pee headache can really test one’s sanity…
    And I think you may be seeing your migraine experience expanding… or you may become more sensitive over time to observing… which is another topic unto itself… how much pain am I in really? Because I think the brain adjusts to the pain so we don’t notice it as much… The pain that really gets our attention we call “Breakthrough Pain”. But in the beginning of our migraine journey it was all breakthrough pain…
    Then how do we describe our pain? Numbers… We get trained by medical authorities to use numbers but I try to be specific about the types of pain sensations and rate the intensity by what is relative to me…
    Then if we laugh at a joke the doctor tells… our pain isn’t that bad right? It’s ridiculous the way we get “strapped into” the expectations of “normal” people…

  • body
    6 years ago

    Taking a triptan at the first sign of a migraine is how I got into trouble with rebound headaches and ended up with chronic migraine. Now, I follow a similar pattern as Amy including adequate rest, clean and healthy diet (organic as much as possible), 8-10 glasses of water per day, regular low-intensity exercise (walking and light weights), herbal supplements, omega 3’s, and daily meditation which I also do at first sign of a migraine along with biofeedback. In addition I have acupuncture every six weeks to balance my serotonin levels, relax tense muscles, relieve pain and increase my endorphin levels

  • Nancy Harris Bonk moderator
    6 years ago

    Thanks for sharing your tips with us amy!

  • amycapps
    6 years ago

    Some of the things I do for migraine limbo: Avoid all chemicals, including in foods, drinks and lotions and soaps(go organic) Take a warm bath or shower, get warm. Induce endorphins and detox through a sweaty exercise, which I find a recumbent bike to work best when the migraine is close. Meditate, ESP practice bio feedback breathing. Color Light Therapy helps also. Visit a chiropractor or PT who is well trained in migraine. You may discover its your migraines that throw your neck out in the first place, which can start with a fog and turn into a full blown migraine. Drink tons of water. I drink distilled with 1/8 tsp Himalayan salt per gallon. Eat lots of clean veggies, do a detox, omega 3 and other anti inflammatory supplements…

  • rilniski
    6 years ago

    Hi all. I have had this experience too many times to count. As a matter of fact I stayed home one day last week andwent back to work the next day. One co-worker commented that I looked really pale so yep I was definitely in migraine limbo. I still felt a little bit of a headache and just foggy but could still walk around and function. It was strange.

  • mindzfuleez217
    6 years ago

    Migraine Limbo is something that ocurrs up to 15 times a month for me. Having a “Rare” Vestibular Migraine with Aura diagnosed condition, the triptan Imitrex medication doesn’t necesarily help. Being that the form of migraines I suffer from do not usually cause pain unless induced by severe stress, its difficult to take at “onset” which is not clearly manifested. When sensitivity to light, sound, smells, movements, and cognitive decline is apparent, that means the Migraine is already in action. Maxalt disolvable medication which is extremely expensive ($500 for 9 tablets)is used when absolutely needed, when vision, naustiousness, vertigo and inablity to function is unbearable. Migraine Limbo is horrible.

  • CathyC
    6 years ago

    Thank you for coming up with a name for it. It confuses others too as it’s assumed that a “migraine” is always got you laying flat…you know. True, some days that’s the way it is, because if I do move my head it makes the nausea worse. I’ve wondered if the activity that I did do when I was in Limboland was what brought the bugger on the next day or made it worse ? So confusing. One thing I’ve discovered is when I wake with what feels like one coming on it the morning, once I’ve eaten breakfast that seems to help sometimes. I’m also someone that is impacted with chronic migraines. I’m at a point where my triggers are changing again or adding too (usually). These things are just plain onery ! Yet I refuse to allow them always be in control.

  • Nancy Harris Bonk moderator
    6 years ago

    Good for you Cathy! Migraine isn’t in control, we are!

  • mskatiedid
    6 years ago

    I love this website for the precise reason that finally, finally, I do not feel alone and crazy. Even though my neurologist calls this cognitive fogging, and considers this a by-product of chronic migraine, it is still good to hear someone actually experiencing it, talking about it. I often feel like my migraines are so awful and unbelievable that they are just that, unbelievable. It’s one thing to believe someone is Ill when their head is in toilet, but when I try to explain to someone I kinda sorta have a migraine, and that’s why I’m speaking backwards, occasionally staring into space for no good reason, am irritable, irrational, or forgetful….well, let’s just say I’ve felt just a little like I must be losing it or making it up in my head somehow. I am sharing this article with people in my life to help them understand. And i feel like I can be a little less hard on myself, the next time I need to just sit down for a minute because the fog is descending…even if the full on storm hasn’t hit yet.

  • Nancy Harris Bonk moderator
    6 years ago

    We are glad you are here too! It is a great site and please, don’t be so hard on yourself!

  • Karen
    6 years ago

    FINALLY! A name for those days when my chronic pain has elevated to the point where I actually have a debate inside my head of ‘should I’ or ‘shouldn’t I’ take my triptans! Living with chronic migraine you, unfortunately, become accustomed and very familiar with pain on a daily basis. So when the pain elevates, as it does a couple times a week or more, I am always struggling with the do I take my meds, is this going to go to a full blown migraine, can I get my stuff done quickly, can I take it easy right now…..all these questions. And then there is the big one: How many Imitrex do I have left and when can I get them refilled? I love that you’ve given this area of “is it or isn’t it” a name! “Migraine Limbo”!! I LOVE IT! It’s a perfect name and when you think about it, a perfect feeling for what we go through….

  • Nancy Harris Bonk moderator
    6 years ago

    Yes, I love it too…..it is a great phrase. Lots of us feel it much too often

  • marlenerossman
    6 years ago

    What you have ALL described is what I feel quite often. Some days I am sure a migraine is coming and it does not and other days I have no idea where the migraine came from. I do not have aura (except for once) but many days I feel “off.”

  • Nancy Harris Bonk moderator
    6 years ago

    The varied world of migraine, a joy isn’t it?

  • ninjaqutie
    6 years ago

    I certainly get this “migraine limbo” that you speak of! When this happens, I try to go about my normal activities, but I proceed with caution as if the floor could drop out at any moment. The other day I was feeling like this, but I had plans to play tennis with my husband and my friend. We had been trying to make plans with her for months and it never worked out, so I’ll be danged if I was going to bail!! I ended up taking a couple of excedrin since I had a light headache and was feeling “off”, thinking that if it got worse on the court, this might make prevent the world from ripping apart at the seams until the hubby could get me home. I wore a visor because I was super sensitive to the light, kept SUPER hydrated and kept an eye on myself to see if I noticed any changes while I was on court. In the end, I was okay and glad I went. I didn’t end up getting any worse, but I did get a migraine the NEXT day. Did those activities bring it on? Maybe, but I could have stayed at home and still had a migraine the next day and missed out on a good time. Those of us who have these weird “limbo” days just never know. :O(

  • Nancy Harris Bonk moderator
    6 years ago

    Glad to hear you had a great day with your husband and friends. And you are so correct, we just never know when the next migraine will hit, so when we can have fun, do it!
    🙂

  • danielle85
    6 years ago

    Hi, I’m new to this forum. My physio is happy because I haven’t been getting migraines as often, but I’m still getting a lot of head pain, the head pain just isn’t turning into full blown migraines, which is great, but it is still so limiting because I feel like I have to continue to avoid doing anything that could potentially escalate the pain to a migraine. I used to get them on a daily basis, was taking triptans daily which I realised was just making everything worse. Rebound headaches and increased sensitivity to triggers etc. The physio is helping desensitise my brain stem through this new technique from the Watson Headache Clinic (Australia). Should desensitise me to a variety of migraine triggers, not just the problem originating from my neck vertebrae pushing on ligaments etc. which is mostly under control. Anyway, the email about this forum topic came just at the right time, I often feel alone in my symptoms until I read about someone else going through a similar thing, as most people would. One thing I really hate at the moment is when I’m just sitting somewhere or lying down and I move my head a certain way or put pressure on a different part of my head when lying and suddenly its like I have a full blown migraine for a couple of minutes and then it just goes away of its own accord. It really rattles me… I feel like I’m being taunted by it on a daily basis. Like, ‘you haven’t gotten rid of me yet, I can come on at any moment!’ I know its irrational to think of pain as an entity trying to destroy my life, but after 10 years, that’s what its become. And this migraine limbo… I suppose not getting migraines as often, but still having the near constant threat of them is better than actually getting them. Down to one or two a fortnight. I always avoid trying to take a tablet because of the side effects of those things. Makes me totally unsociable and out of it. Plus, the rebound headaches… I’m really hoping that pregnancy doesn’t make it worse. Any thoughts about that? I’ve heard some people say it gets worse, others say that once they got pregnant it all just stopped. I think the later is too good to be true. I really feel for all migraine sufferers going through the daily battle with pain, even after the actual migraine attacks are better managed. The daily pain struggle often continues and I guess we just have to live with it, for now.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi danielle85,
    As far as migraine and pregnancy goes, it really depends on the woman. Some find relief from their migraine pain during pregnancy, other stay the same and yet others have increased pain.

    I wish you continued good luck with your therapy. Fingers crossed for you.

  • Julie
    6 years ago

    That is true with me to. that is a good name for it. I’ll get dizzy and a little loopy. I get kind of slap happy sometimes, but not all the times. I might run into things cause I can’t see too clearly because my vision is blurry. My brain is fuzzy and can’t think too clearly I will start a sentence and stop mid way and then forget what I was saying, or sometimes the sentence won’t come out at all. I’ll feel way beyond tired and if I’m sitting down I can feel myself start to nod off and I can see my vision changing more and more. And my neck will start to feel stiff and more sore and my ear might pop, but my jaw never does. It’s like a releas of air pressure or something-its hard to explain. Then I will see the beginnig of a shadow out of the corner of my eye. I ignore it but by the time the shadow grows larger then the pain has started to set in behind that eye.. But it doesn’t always happen this way so I can’t count on it. Sometimes I wake up in the morning with full on migraine knock me on the floor migraine pain and nothing will touch it.

  • Ellen Schnakenberg
    6 years ago

    Aaahhhh yes. Here it is called Migraine LaLa Land. I am prodromey and a bit wonky, trying to decide what to do.

    To treat or not to treat… That is the question…

  • lori
    6 years ago

    Thank you for posting about this and giving it a “name”. Migraine Limbo is highly prevelent in my life and I hate it. I think it is sometimes one of the hardest things to deal with, because I’m dealing with the unknown. Should I wait and see if this pill can be saved for another day, or do I just go for it? One thing is for sure, my anti-nausea meds get a workout on those days. When I am in limbo, I try to be productive. Well as productive as I can be. I feel like crud, but I’m cognizant enough to be part of life. Sort of.

  • lauren
    6 years ago

    Ah–to save the pill for another day–you’ve said something that resonates! They are rationed, aren’t they? It’s hard enough to figure out how you feel–and then is it safe to take another med? Will there be enough to last out the month? AARRGH. Anyway, I too end up doing something when I feel like crud, but I deliberately (wicked BWA HA HA) choose something that would probably make me feel cruddy anyway. Why waste a good lousy day? ps Do I love these blogs. People talk about things I had to figure out for myself all alone. It gives me confidence–so I wasn’t nuts after all!

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Lori,

    I tend to do the same thing, and I know waiting it not a good thing.

  • debrakaleda
    6 years ago

    This definitely rings true with me. Most of my migraines happen when I have neck pain. I have 2 ruptured discs in my neck (C5 and C6) from an injury 5 years ago. But, either way, when I have a headache, but not yet a migraine, I alternate tylenol and motrin throughout the day. I have Vicodin if my headache gets to the point of becoming a migraine. I work at a hospital, so I can not let the headache or Migraine Limbo affect my work. If I get nauseated, I actually take over the counter “Nauzene”. They have chewables or liquid and that helps keep the nausea and stomach under control. I also have Phenergan for if and when the headache becomes a migraine and the vomiting starts.

    I had noticed that if I pushed throughout the day without taking anything like tylenol of even excedrin migraine that I was ended up with anxiety attacks. Thats when I started taking the over the counter medicines to help get rid of the haziness and uncomfortable feeling all day long.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi debrakaleda,

    Sorry to hear about your neck problems. I’ve had an anterior cervical disc fusion at C 4/5 and C 5/6 and that was no fun. I did want to mention one thing, if I may. We can run into a problem if we take any pain relievers(over-the-counter or prescription) two or more days a week, called medication overuse headache or moh. We have a good article on this you can find in this link,http://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/

  • Monica
    6 years ago

    This definitely rings true to me, and is something that has always been hard to explain. As someone with chronic migraines, I am almost never without head pain. When I am experiencing mild pain or those migraine limbo symptoms (feeling off, hazy, etc) I feel like I should be getting more things done or enjoying my day more. It’s not enough of a break, though. Just give me a day of clearheadedness, please!

  • Nancy Harris Bonk moderator
    6 years ago

    And when you do get breaks in pain, do you find yourself over doing it and going backwards? I know I have been in that spot a few times.

  • jo17151
    6 years ago

    Excellent article and what a perfect description of my life. I’ve lived with chronic migraines for just over 2 years and have coped by just trying to carry on as best I can with work and life during the periods when the pain and symptoms are not totally debilitating.

    During the last few months I’ve developed panic attacks and anxiety issues which are believed to be caused by pushing through the pain and fatigue – so I wouldn’t recommend it.

  • Nancy Harris Bonk moderator
    6 years ago

    I’m sorry to hear about the panic and anxiety issues, which can be comorbid with Migraine. We have some good information in this link,http://migraine.com/blog/migraine-comorbidities-anxiety/. I tend to “push through” the pain and it really is a very bad idea. You would think I would learn after all these years……

  • mwebb1963
    6 years ago

    I am exactly in migraine limbo today. I try all things not to let it progress, we will see. I keep trying to figure out what my triggers are, but I unable to figure them out on days like this. I understand exactly what you are saying!

  • Nancy Harris Bonk moderator
    6 years ago

    Hi mwebb1963 – triggers are tough to figure out. Have you tried keeping a migraine journal recently to help you out? I did one with my son when he was younger and we found out he was triggered by too much chocolate, dehydration, skipping meals and changes in his sleeping patterns. Who knew? It really helped us. We have a migraine meter if you want to give it a shot, http://migraine.com/migraine-meter/

  • grannyd
    6 years ago

    I like the term migraine limbo and your explaination of what it is. For me migraine limbo is definately a weekly condition and more times than not a daily occurance some times increasing into an hourly ordeal. All of the symptoms minus extreme pain and the sensitivity to light will come on (I almost always take meds with those two symptoms) and I find myself begin to wait and debate. I argue with myself…take medication, don’t take medication, go home from work or wait around and see if it goes away? This migraine limbo brings on feelings of grief, sadness and frustration for me. I find myself saying but you were just fine 5 minutes ago what in the world changed? Some times I can pinpoint it but more times than not it’s just the uncertainty and evil of the migraine disease. I also believe this migraine limbo is at least 50% of my migraine life!

  • Nancy Harris Bonk moderator
    6 years ago

    That’s a great term isn’t it, ‘migraine limbo.’ It feels like I’m doing a different dance every day!

  • TaylormadenWV
    6 years ago

    I think we all have lived and continue to live in “migraine limbo” to some extent. I’m at the point where 50% of my time is “migraine limbo” dealing with moderately severe migraine headaches and the other 50% incapacitated by severe migraine headaches. I usually walk around wearing dark sunglasses on the migraine limbo days and hope that it doesn’t progress to a severe day (I’m always prepared with extra doses of my anti-nausea and migraine pain meds in my purse). I simply do what I can when I can and hope that people and plans can wait while I deal with the severe days.

  • lauren
    6 years ago

    Dark glasses–look up the Moran Eye Center at the University of Utah. I sent a pair of glasses to be tinted especially for people with light sensitivity problems and am I ever glad I did. They’re for all the time wear–I should get a pair of sunglasses–but I’ve squinted at bright skies ever since I was little and this is a real help! I know light is a trigger and bright light is painful when I’m in limbo or in a full fledged attack.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi viviantaylor,
    That sounds like a great plan “do what I can when I can.” I especially like the part about hoping people and plans wait!!

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