The intense migraine I suffer

The intense migraine I suffer

I thought I would use this corner of the internet to share my only (known) health problem. I have suffered from migraines since I was a child, generally they came about when I was exhausted or if I had travel sickness, and I knew they could be solved by finding a cool, dark room and sleeping. As I got older, they became rarer, but then I wouldn't exhaust myself and travel sickness became less of an issue. But since about 2011 (aged 17), I have gone through phases where I receive several crippling migraines in a row, normally for about five consecutive days in a year, and then they clear.

The reason I share this is that doctors can't work out what is triggering them. The phase has happened in May and it has happened in December. By the time we find medication, they generally clear naturally. But unless I am under the strain of one, I find it impossible to put into words just how bad the pain is, so I wanted to document it.

My most memorable migraines have been when I was on a train or a plane. However, I wouldn't major on this: those ones have been memorable mainly because I am in a situation where I can't escape, which makes the symptoms much more scary. My known solution of closing the curtains and going to bed doesn't work there.

However, I have also been woken up at 5am by these headaches. This is scary when it happens because it feels like my known safe place - I've always known that if I go to bed and close my eyes the pain will start to subside - is under attack. Generally I will be awake for a few minutes, feeling in my head that I'm "a little tired", and that will suddenly turn into great pain. The pain is my head, but connected to my eyes. If I open my eyes, the pain from the light becomes so strong I immediately want to be sick. Obviously I don't want to be sick while lying in my own bed, so worrying about that makes me hot. Opening the windows cools me down, but gives me goosebumps because it's cold outside. This all makes me very restless, and I am rolling around, sometimes screaming in agony, all the while trying not to open my eyes. This will last for about 10 minutes, after which if I was tired I will go back to sleep, otherwise I will get up and begin my day - but feeling exhausted because of the unpleasant start.

Sometimes, I will have already begun the day. Perhaps after a shower I will sit down on the bed (probably because I've come over a bit tired, but I don't think it through that much, I just sit on the bed because that's what my body wants me to do), and it will repeat itself.

The worst is when I'm out in public (or driving a car). The office is a nightmare because computer screens will turn a small headache into a major migraine. Generally the process starting with "I've got a bit of a headache starting here" and turning into "I can't cope, I'm going to be sick" takes only about five minutes - often far faster than I can reach for medication. I will make a cocktail of drinks - tea, water, cola - not all of those suitable but I'm after anything I will drink, I have no appetite to drink, and if I do I will then worry I will throw it up.

Sometimes, I will have one attack, and once it has cleared I will continue the day as normal. Sometimes I will have one major attack and two similar ones later in the day. Sometimes, I will throw up quite quickly (this is probably related to triggers - I threw up once when I had a migraine attack while in a restaurant with strong smells) - sometimes I will be under attack for 30 minutes and won't be sick, but will dry-heave constantly. This is particularly unpleasant as I will then have to find something to lean on as I cannot stand straight.

I wouldn't say that I cannot talk, or walk, when I have a migraine. However, the pain is so intense and is consuming so much of my mind that I cannot dedicate enough of my brainpower into articulating a sentence, or walking in a straight line. For this reason, I have turned down jobs which involve a lot of driving, because I don't want to be in a position where this sneaks up on me and I'm in the middle of something important.

Even though I get about five minutes warning that a small headache is about to become a big one, that doesn't really help, because throughout the year I will get small headaches because I'm tired or thirsty and they amount to nothing. (They're not good to have, no, but it's 2016 and they happen.)

So far the only reliable solution has been a change of circumstances. After being on a plane for nine hours (two of which were spent convinced I was going to be sick every time I breathed), feeling the door open and the fresh air enter the aircraft was a feeling so good the headache cleared. Opening my own bedroom window wasn't a success. I recall one time, after a 10 minute attack, I found enough energy to walk to the sofa in the middle of a noisy living room. By this point my heart was pumping and body was shaking, mainly because I had just spent 10 minutes almost being sick. I grabbed some kind of headcooling gel - a new thing I have only recently discovered. On the sofa I found an old jumper and I buried my head under it. I remember the first time I must have left a slight gap because I, without thinking, picked up the jumper and wrapped it around me again until everything was completely dark. It was like my body knew something wasn't right and fixed it. And I mean this entirely sincerely - it was the best feeling I have ever had. To feel the agonising pain and fear I had been under literally disappear, and to suddenly feel safe that I had found the position which was going to make me feel better. I didn't sleep, but I lay there with my head under the jumper and gel on my forehead completely dead to the world, despite the noise around me, for about 10 minutes. After this I rose like nothing had happened. I just wish I could have more of that sensation, and less of the fear and pain which comes before it.

My Campaign Idea

These days the owners of large public buildings are forever being told they need to incorporate suggestions for people with sight issues, hidden disabilities, learning disabilities, and many more. And to be fair to them, most public buildings are much more inclusive and accessible than they used to be, even if there are many outstanding and overlooked issues.

Places like airport departure lounges and ferries are particularly terrifying places to experience an attack because you can't escape from the bright lights and noise. I wish they had dark, quiet room with air conditioning that I could ask for if I needed 'time out'.

I'm sure there are many people with medical reasons for needing to take some time away from the lights and noise, and I seriously think these large buildings should make these small spaces available whenever they are next refurbished.

Update - summer 2019. The first summer heatwave of 2019 was extremely difficult. I was out of action for eight weeks, the worst it has ever been.

Basically I would wake up feeling dehydrated, and this would quickly become a migraine. The pain was inside my eye, and would quickly cause me to throw up.

Medicine didn't seem to be helping, but then mostly I couldn't keep it down.

Eventually I think I got control of the situation by sitting in a cold place, closing my eyes, and resting my head on a table. I would then attempt to count to 300, but before I got there I would become distracted. During that daydream I would then realise the pain is gone, and remains gone for several hours.

I don't know if that solution was somewhat psychological - it only seemed to work in certain places. Maybe it was about finding a distraction or something to do with blood pressure? I really don't know.

The only times that solution didn't work would be when I could feel myself feeling sick. Maybe this was an especially bad migraine, or maybe I had left it to late. In these cases I would need to be sick several times before the sitting-down solution would work.

The only pattern I observed is that the migraines seemed to be to do with overheating. I don't know if that was the cause or the symptom, but I noticed when I was hot I would get a sharp pain in my eye. This would couple up with my apartment at the time, which had a very hot bedroom with poor ventilation. As a result lying in bed all day - tempting though it was when I was feeling so ill - may have been making it worse.

I should also add that in 2019 I had a second diabetes blood test, and again this came back clear. I remain very wary about that.

Legally bland

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© 2020 Johnathan Randall.