I live with daily chronic migraines.
It’s hard to explain this to people because there are a lot of misconceptions and a lot of weird little quirks involved. If someone has never experienced this kind of thing – trying to find the easiest and most accurate way of describing it is tricky. After all, this pain literally is ‘all in my head’ and makes it difficult for people to understand.
What I have learned from a neurologist is that migraines themselves are very individual. They vary greatly from person to person, so I can only really explain to you what my situation is.
The simplest way of explaining it is: Every day I have some sort of pain in my head.
Normally it is at a manageable level and tends to hang out more on the right side of my head then the left, although it does switch sides.
I usually refer to it as ‘rolling over’ because for some reason it feels more like a large round boulder from Indiana Jones rolling down to the other side of my head rather then someone just clicking on a switch. It rolls it’s way over to crunch against the other side of my head for a while.
The pain itself however I have to describe differently.
Imagine a round metal rod. A hot metal rod. Now imagine someone takes this metal rod and inserts it vertically in the top of your head, down behind your eye. You would feel this pain as a dull burning ache that is still somehow up and down in a line, occasionally accented with sharp shocks of pain that feels quick and stabbing.
Now that it’s there just imagine it stays there. Occasionally rolling over to the other side, but always a vertical line of ‘ow’.
This is the closest way I can describe what I feel most days. This would be about my normal pain levels. Right now it’s sitting in it’s usual position on my right side of the head.
I know, it sounds really unpleasant but to be honest this is managable. You get used to anything if you live with it for long enough. (I hear that’s the secret to a happy marriage? I know, bad joke..)
It throbs and aches, but you can generally force yourself to ignore it. I wear dark shades when I can outside as the lights really seem to aggravate it sometimes. (Oh, and florescent lights? Forget that! They are horrible…)
Voices and other loud noises are piercing as all get out sometimes – even having the effect of echoing like I’m in a loud booming room when I’m not. Strangely though, low music and focusing on lyrics can sometimes keep my mind off of the intensity of my pain and it helps for a while.
Now that’s at a normal level. Sometimes it’s a low burn, and sometimes it’s louder but I can live with it.
Then there are days where the pain is much more intense. It’s no longer just a dull burning ache – it’s a full on stabbing in my skull. There are times where there are strange and disturbing physical sensations with the pain as well.
Like there will be a sensation that part of my head is caved in, whatever side the migraine is hitting on (again, normally the right).
It will also feel like my ear cannals are bleeding – even though I have checked them and have never seen any blood. I will feel very sick to my stomach (but trust me, throwing up is the -last- thing you want to do in this state…) and sometimes my speaking is effected. Words will embassingly not come out quite right and I yawn repeatedly even without being tired.
See that is a bit of an annoying feature of some migraines. They can have symptoms similar to a stroke. Terrifying really, since having migraines also put you at a higher risk of one. That is not a roulette game I enjoy playing…
When things get this bad I have to retreat into a dark room and try to sleep it off if I can, or else take a long hot bath in the dark and hope it relaxes me enough to sleep it off when I stumble out. It’s miserable.
I’ve also found carefully pounding on that side of my head with the fleshy part of my palm helps a little as well, again don’t ask me why – but it does. Looks stupid, but at the time I really don’t care.
Then there is the wonky things that happen that get worrisome.
When I bend down to get something, or look at something on a low shelf – then rise again, I nearly pass out. This happens a lot. Sure, some of you are thinking “Well that’s just low blood pressure!” and you are half right.
There are two major veins at the back of your head that transfers blood to and from the brain. That is where they figure the problem lies. Something about the migraine constricting the vessels and therefore causing the near blackouts when there is a sudden change from kneeling to standing.
This is scary at the time though! My vision goes black on the edges and my head swims and it takes a moment of breathing carefully and holding onto whatever shelf or wall I can for a second before I’m okay.
I do not ant to be that weirdo who passes out in the middle of a store and takes out a shelf of product. No thank you. I can see that being a trending embarrassing video on the next ‘people of walmart’ edition…
So, you are also probably thinking “Well I’m sure you could just pop a few Tylenol like the rest of us who gets a headache.”
My first answer to that likely wouldn’t be fit for this write-up, and I don’t like swearing so that says a lot right there.
I would love it if these were just simple headaches, trust me. I completely get the fact that people want there to be easy fixes out there. -I- want there to be easy fixes out there! And for some people there are medications that work wonders with their biochemistry and they find a happy medium.
Look – I have spent many, many years on various medications trying to control and subdue these migraines. I’ve seen specialists. I’ve had MRI’s and CT scans, etc. etc.
Heck, I was even told I have a right cortical fissure cyst in my brain (though the neurologist couldn’t prove if it had anything to do with the migraines or not.)
I’ve been on painkillers, anti-inflammatories, even anti-convulsants! Nothing works to get rid of them. If there is any sort relief, my body quickly counters the drugs effect and I lose any progress made with the medication.
As for narcotics? It isn’t a boat I want to sail on.
I got to the point of taking over the recommended doses of Tylenol 3 with Codeine. Since it wasn’t having any effect at the regular dosage I would take twice as much as I was supposed to. (this sucks to admit, but I feel it’s important to address.) When even that did nothing to stop the pain of the migraines I decided that was it. I was done.
It simply wasn’t worth it. It literally did nothing and could have potentially caused far more serious problems if I kept trying to find ‘the right dose’ that would stop the pain without overdosing.
The last options I had left by my neurologist was botox shots in the back of my head to try and see if the muscle release on the veins at the back of my skull would help…
I said no. I still stick by that.
They were expensive shots, I’d have to return and get them re-done often, and the side effects were far more risky and dangerous then living with the pain. And considering we weren’t even sure if they would work or not… well I’m not a gambling woman.
What little I have found works occasionally is sucking on good quality chocolate will ease the pain for a little while and oddly enough second-hand pot smoke has made the pain ease for a little while. Other then that it’s a matter of managing it and living with it.
If things get much worse I have considered investigating cannabis more seriously, but really the last thing I want is to have to rely on a medication that numbs my mind just to control the pain. It’s why I was so against narcotics as medication options.
I admit – it scares me. The last thing I want to do is get high. I’d just like to be pain free for a while. One day the scales of wanting to be pain free are going to outweigh my fear of cannabis’s side effects though. A person can only be so stubborn.
I suppose I wanted to write all of this down (even the parts I hate to admit) because we all have things the world can’t see that we deal with every day.
I see it often in the news that people are killing themselves every day because somewhere deep inside they are hurting and the world just can’t see it. How many youth are we losing on an hourly basis because their pain is hidden from the rest of the world? Emotional/physical/mental… it’s still pain.
If someone has a busted arm you can see the damage and relate with the pain.
Someone saying something hurts that no one can see for themselves is easy for people to just assume it’s only a cry for attention or a sympathy ploy. I get it, I honestly do. I’ve heard it all before.
But just think how hard it is for people like me to try and explain. At least I have solid medical evidence that Migraines are real and my symptoms are documented. What about those who are dealing with similar things but have no professional diagnosis, or no one to believe them to begin with?
What about mental illness, which is notoriously difficult to properly address and treat – and has a huge negative stigma attached? I should know. I’ve dealt with that inner
demon. It’s never easy – for anyone.
People out there every day are dealing with their own stuff, and still managing to struggle onward as best they can. They could be dealing with any number of illness or condition that they can physically hide from the world – but it doesn’t mean they aren’t hurting.
Just be kind to one another. Know that everyone you meet has other sides that you can’t begin to simply comprehend on first glance. No one’s story is as cut and dry as the world may have you believe.
Understand that being human isn’t about being perfect. You aren’t flawed or broken if you are dealing with these kinds of conditions. You aren’t weak. Everyone who walks this earth has their own obstacles they are struggling with beyond your sight.
I guess that’s all I really mean to say.