Migraine Awareness: Me and my Migraine

Hi, I’m Amy and I suffer from migraine.

I hate my brain. I know I can’t very well do without it but it often seems like the enemy.

Migraine is the most common neurological condition (or brain disorder if you like) and it can affect  anyone.

The seriousness of migraine is often not realized for several reasons. Firstly it’s in the brain so essentially invisible. Sometimes there’s also the misconception that because it’s ‘in the mind’ it’s imagined and isn’t really real. For people who think that may I remind you that the brain is a physical organ and a very important one – it controls everything and if it is screwed up the body cannot work properly, like if you are in the car and the steering wheel doesn’t work. A similar disorder to migraine is epilepsy.

Secondly migraine is often equated with a headache. MIGRAINE IS NOT A HEADACHE. A migraine often has a headache as one of its symptoms but (a) migraine headache is vastly more painful than an ordinary headache and (b) a migraine consists of a whole list of symptoms, which I will go over shortly, only one of which is headache. Unfortunately this misunderstanding leads to some people saying they have a migraine when they only have a headache. (Don’t mistake my use of ‘only’ as suggesting a headache cannot be very painful; I use the word merely to indicate the headache is in isolation of other symptoms and therefore not a migraine). The more headaches get called migraines the more actual migraines get ignored or dismissed as less serious than they are.

Thirdly there are people who will fake migraines to get time off work. This goes back to migraine being an ‘invisible’ illness and therefore difficult to prove or disprove. Sadly this means that genuine migraine sufferers are often believed to be fakers. A migraine on its own is unbelievably horrible, but it is even more horrible to be suffering in agonizing pain only to have nobody believe you. People give you filthy looks because they think you’ve just had an impromptu holiday when in fact you have been lying in a dark room for days in the most unbearable pain.

Depression often goes hand-in-hand with migraine in part, I think, because it is easy to feel guilty about letting people down even though it is not your fault! This is particularly true when you know they think it is your fault, blame you and are even openly hostile. It can also damage relationships because friends might think you blew them off when you rung up to cancel plans at the last minute, believing that you just dreamed up a convenient excuse!

Ha! Convenient. Migraine can show up at the most inconvenient times and really mess your life up. Having the added stress of people blaming you does not help because stress if often a trigger for a migraine attack, so it can actually cause more migraines and become a viscous circle. Basically what I’m saying is if you must fake and illness to bunk off work please do not choose migraine because you are inadvertently making life harder for people who have a dreadful illness which already makes life difficult enough.

Want to know just how difficult? Keep reading.

Migraine Symptoms

The Headache: If you have not experienced a migraine headache it is hard to imagine just how painful it is. On one occasion I wondered whether I was having a brain hemorrhage – it was that painful, even on pain meds. Migraine headache is a pulsing pain usually on one side of the head. My experience is that it is often concentrated around one eye, and during an attack I frequently press the heel of my hand into the eye socket. Pain can also be felt in the skull, temple, cheekbone, down into the jaw and even neck. Often the skin will hurt as well so it is sensitive to touch. I find people are often compelled to rub my head when I have a migraine, to comfort me, which is a kind gesture but unfortunately uncomfortable. It often feels as if there are physical objects actually penetrating into the skull, like needles. Think Pinhead from Hellraiser! It is agonising. Physical and mental activity makes it worse. Complete inactivity is often the only option, particularly as the headache goes had-in-hand with other symptoms such as…

Aura / Visual Disturbance: This can be the earliest symptom and sometimes acts as a warning. Usually described as flashing lights or stars I think I’d rather describe it as a sort of shifting, psychedelic rainbow pattern that gradually spreads across you vision, blinding you. (Apparently it’s common to see it in black and white but personally I always see colours). It can be rather pretty however being rendered partially or mostly blind is very frightening particularly if you are out and on your own.

The rainbow pasterns mask whatever it is you are trying to look at. I’ve also noticed blank spots where there’s just …nothing. Overall it’s very distorted and weird. Perception of things like distance and scale can be off as well (called ‘Alice in Wonderland Syndrome’). It can strike unexpectedly, usually as a small patch that grows, disabling your vision and making you extremely vulnerable.

Remember there is nothing physically wrong with the eye, but rather it is the brain ‘corrupting’ the visual information.

Recently I have started having ‘sensory aura’ instead, which is where you get tingling in the limbs and/or loss or sensation a bit like pins and needles which is… interesting.

Light Sensitivity: Bright lights can trigger a migraine attack and cause additional pain during one. This is why the usual method of recovery is to lie in a dark room. During an attack it is as if light is converted into a laser beam as it travels into the eye, causing a searing pain. Never mind the blindness from Visual Disturbances – I will be walking around with my eyes half-closed anyway, wincing at every flash or glare of light (until I can find a dark room)!

Light is a difficult trigger to avoid and Christmas can be a bad time for migraineurs; the Christmas lights that you think are oh so pretty are like a minefield. Generally going out or visiting friends is a risky business. You don’t have a lampshade? Thanks a bunch I’m going to have a migraine now. Oh this restaurant has put candles on the table, how romantic, but I’m going to get a migraine now. This stupid electronics manufacturer has stuck f***ing little LEDs on everything for no reason and I’m going to get a migraine now!

I wore sunglasses to see the Hitch-Hikers Guide to the Galaxy on stage, because they had strobe lighting. I joked that they were my ‘peril sensitive sunglasses.’ Sadly it is not practical to wear sunglasses all the time and they are not effective enough protection; you can still catch a reflection in your peripheral vision et voilà! Migraine.

Disorientation & loss of motor control: At its mildest it is difficult to concentrate during a migraine. You just can’t think properly. You feel confused and I often reach for words only to find they are not there. It can look like you are drunk because you start to slur your words and sway unsteadily, having poor balance. Walking can be challenging and I’ve even fallen over on occasion. There is a sense of dizziness and confusion. Movements are clumsy and you are likely to be dropping things and knocking things over. When I was bad I didn’t like leaving the house because if I got an attack I didn’t feel like I would be able to get home safely.

Fatigue: Ugh. So tired… Another health disorder associated with migraine is Chronic Fatigue Syndrome. It’s persistent exhaustion that interferes with daily life and does not go away with rest. Fatigue can be part of the pro-drome and post-drome (pre and post migraine attack symptoms). So the attack itself can last up to 3 days and the fatigue potentially can last for days on either side of that. So a migraine can seriously slow you down for a while, and frequent migraines can be seriously disabling.

Nausea/Vomiting: In addition to the light sensitivity other senses are also heightened. Smells and tastes seem stronger, usually too strong to deal with. It’s hard to deal with nausea when even very mild scents seem overpowering and you can detect food smells from a long way away. Of course there is the actual sickness. It’s become dreadfully mundane for me, because I have chronic migraine, this retching over a toilet. At least my timing is good so I always make it.

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So that’s it then. Well not quite it, there are a few other weird minor symptoms, but that’s the major ones. I am currently very happy with my daily preventative and ‘on the spot’ medications that do a lot to reduce the number of attacks I get but do not eliminate them altogether. There are side effects but those are preferable to going through the experience I just described above on a more regular basis. It was not terrifically easy to get taken seriously and get the medication I needed, so if you are suffering like this with regular migraines and your doctor is still recommending over-the-counter medication go see another doctor.

I thought I would share my experience because it’s migraine awareness week. Maybe some folk with migraine will relate, maybe people who don’t have them (I wouldn’t wish them on you for the world!) will more understanding of those who do.