Monday, 22 April 2013

How My Migraines Feel

So what is it like to have a migraine?  This is something which those who have never experienced a migraine imagine with very varied results, the classic thoughts being "it's a just a headache" though others who have known someone who suffers from them are more empathetic.  The ironic thing for me is that I've always suffered from headaches throughout my life and as such I always greatly pitied those who got migraines though in those days I thought they only lasted a few hours.

There are many different elements to migraines which some suffer from and some don't.  I don't, for example, have aura with my migraine (that's the weird vision stuff that can happen before a migraine) though I have experienced aura without migraine a few times  I don't suffer from the extreme dizziness that some other sufferers get and in many respects a lot of my symptoms are very mild in comparison to other sufferers which actually makes me feel lucky despite being a chronic sufferer.

I can't tell you how migraine feels to anyone else, but let me explain how migraine feels to me if it is untreated or if the treatment fails (which happens 10-20% of the time for me).  It will usually last for 3 days in this case, so let me tell you about those three days.  No description can really do it justice but this is my best attempt.

The Beginning

My attacks used to almost always start during the night whilst I slept but recently they've almost always started during the day.  It will start as a headache which quickly grows to a bad headache.  I'm going to use this excellent Comparative Pain Scale to try and give you an idea on how this feels.  A bad headache for me is about a number 4 on this pain scale, which is described as 'Distressing' and elaborated as "Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the simulated pain is initially piercing but becomes dull after that."

I regularly have headaches, in fact it's an unusual day if I don't have a headache of some sort and these vary from a 1 to a 4 on this pain scale.  The start of a migraine headache feels different though.   It's always on only one side of my head and it also have a slightly numbing quality to it.  This is my warning sign, the only way I know that Migraine Is Coming .

I have to identify the window during this time, when the headache has progressed past the point of no return into migraine territory but before it goes too far to take my attack meds in - too early and they won't do anything, too late and, you guessed it, they won't do anything.  Sometimes they won't do anything anyway.

The Peak

This headache will continue to grow and grow, increasing in pain, intensity and depth over about 4-6 hours until the pain is all-consuming.
To me, this feels like my brain is trying to burst out of my skull on one side of my head, usually my right side, and the only thing which seems to offer any relief is pressing hard against my eye so that I feel like if I just dug in and scooped out my eye that might let the pain out somehow.  I don't recommend trying this though!
I would rate this as an 8 on the Comparative Pain Scale I referenced above, which is described as 'Utterly Horrible' and elaborated as "Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache."

I don't know if the inability to think clearly is a migraine effect or a by-product of the pain, but simple things take me a while to process which is frustrating and makes me feel like I'm not me anymore which is one of the scariest things in my opinion.  My speech becomes slurred, or so I'm told, I should probably ask my husband to record me so I can hear what I sound like at this stage.  My balance is so poor that I'm liable to fall over, or more often fall into walls when I try and move about.

It really does seem like the only thing in the world is pain and that it will never end, I'm not sure how to describe that to someone who hasn't experienced it.  My head is swimming so I can't think about anything other than the pain, I can't communicate very well as I can't think enough to work out the right words, simple words, I have to be told to do things which seem obvious like sitting down.

When the migraine has come on overnight, I wake from my sleep slowly, usually at some time in the middle of the night, with the pain rousing me from my sleep until I'm suddenly conscious but in utterly agonising pain and it takes me a while to think through the pain to realise I need to take my meds.  I keep my meds and a bottle of water right next to the bed at all time because if they're not there when this happens, my brain won't function well enough for me to stumble/crawl off to wherever they are to take them.

About 10% of the time I experience nausea at this point in the migraine as well.  Sometimes this is just a feeling on constant nausea, sometimes in involves very sudden vomiting, which also makes taking medication problematic so I'm very thankful I don't have this with every migraine but there are plenty of people who do.

The Main Body of the Migraine

After 4-6 hours this level of intensity of the pain finally abates and it lowers to a 7 on the Comparative Pain Scale which is described as 'Very Intense' and elaborated as "Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache."  The pain will stay at this level for the next 2 days, day and night, unrelentingly.

In addition to this, there are other things to make the whole experience worse. Like most migraine sufferers, I get photosensitivity.  Mine isn't as extreme as many people's but daylight is torture and a bright room is an absolute nightmare.  I need to be in a dim room and screens are usually ok as long as the brightness is turned right down.  Loud noises send a zap of pain through my head like a bolt of lightning.  I think a less well known one but a bad one is the pain of movement, especially moving the head up and down - nodding and shaking the head causes a huge surge of pain, as does simply standing up.  It feels like someone just stuck a knife in your head, as though the migraine pain wasn't enough already.

I find it very difficult to eat throughout the whole 3 days of the migraine, and it's impossible to cook.  My husband has to pretty much force me to eat as he knows it will only be worse if my blood sugars drop and drop.
The fatigue is not to be underestimated either.  This isn't just a lack of wanting to move because any movement is a knife in my head, it's absolute exhaustion through all of my body, where it feels like I've climbed a mountain if I've climbed the stairs to the toilet.

By the third day, the pain is finally a little less debilitating.  I would classify this as a 6 on the Comparative Pain Scale which is described as 'Intense' and elaborated as "Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migraine headache combined with several bee stings, or a bad back pain."  By the evening of the third day, if that is indeed the last day of the migraine then the pain usually lessens further to approximately a 4 and I start to have a little energy again and a little of my appetite back.

After the Migraine

The fourth day is then the migraine hangover which feels just like it sounds, like a bad hangover.  I have the same grogginess I feel when I'm hungover, I have the same dry mouth and unquenchable thirst and the same pounding headache and sometimes I also have the same nausea.  I am, however, usually pretty happy on a migraine hangover day, as it is joyous in comparison to the migraine and because I know the migraine is over.

On a typical migraine, even if I take my meds at the right time and they work, the pain will still reach the level described above (level 8) before they take effect.  When they do take effect then I'm not back to 'normal'. Instead I am quite spacy until I've managed a deep sleep (just one cycle is enough) and I can feel the migraine lurking there.  This is particularly difficult to try to describe but I can feel its presence in my head on the same side the migraine pain was on, for the same length of time the migraine would have lasted if it had been allowed to run its course (usually 3 days).  During this time, any extra exertion such as seeing friends, doing a Tesco trip, even doing a couple of big tea rounds in the office, can re-trigger the migraine.  If it re-triggers at any time during these 3 days, the migraine starts from the beginning of the 3 day cycle and the meds will not abort it.

I don't expect anyone who doesn't experience migraines to understand how this feels.  Before my migraines started I pitied migraine sufferers but I have no understanding of what pain on that level for 3 days straight is like.  I also had no idea what that was like on a repeated cycle, happening over and over and over again with very short intervals in between, and I wouldn't wish it on anyone.  I hope perhaps, that those who know me will be able to better understand what I'm going through when I say I'm down with a migraine after reading this.  And yes, I did cry writing this because it's been so very, very hard to live through.


  1. I always say to G "I want to take my eye out" because somehow that feels like it will help!

    The sunny brighter days have really affected me recently, especially when cycling.

    When I read your blog posts I feel like you're in my head! Such similar experiences.

  2. We could be twins. My experience is similar, but I've never thought of Sean Bean in relation to migraine. It does cheer one up :)

    {{Hugs}} from Canada. I know how hard it is to talk about this stuff.

  3. Very well written Daisy and hopefully people who don't suffer from migraines would be a bit more understanding if they could all read this! I do get the awful sickness and have been known to lose half a stone overnight (although regained it quickly!). GP has tried me on Maxalon I think it was called which didn't work either. Very good description too of knowing exactly when to take the meds - mine rarely work and I've realised that I just somehow have to get through the pain - without banging my head against the wall. I get the severe pain just under my eyebrow - did tell a friend I thought I might have been stabbed through the eye in a previous life as the pain is that bad!
    Take care and here's to a migraine free week for everyone!