Migraines in spring – October 2022

Blogging has almost become a way of life. While I don’t spend all that much time creating posts of my own, I do spend considerably more time reading and commenting on other blogs. Over the past month or so I have spent much less blogging time than has become the norm. The most significant factor for this is a semi-persistent low level migraine.

But if you prefer I not go into details. stop reading any further and simply enjoy a few of the flowers on display in our front garden at the end of September and beginning of October. This year the spring equinox weather has been more varied and extreme compared to the typically variable and fickle weather and strong winds usually experienced at this time of the year, ranging from the extremes of winter to typical summer weather with the space of a few days and then back again! Our garden has suffered as a consequence, but still there is much to enjoy:

Spring flowers in our front garden

Migraines are funny things. One can look up textbook definitions of the various types of migraines, but in reality few migraineurs fit tidily into such definitions. In this regard, I’m no different. My migraines have been described at various times as migraine with aura, hemiplegic migraine, chronic migraine, acute migraine, vestibular migraine, complex migraine, migraine with brainstem aura, acephalgic migraine, and atypical migraine. But from personal perspective, it’s what I experience rather than what others observe that really matters, and in this regard, they are are all much the same, varying only in the intensity of various aspects of the disease.

The one thing I am grateful for is that as I have aged, the extremely painful throbbing headache that is often associated with migraine has become infrequent as have bouts of nausea. I appreciate that many people assume a migraine is just a painful throbbing headache with some nausea thrown in for good measure, and for some people that is what a migraine is, but for a significant minority of migraineurs these are the least significant aspects of their many symptoms. It is for me.

So what have I been experiencing over recent weeks that have kept me out of the blogosphere?

Brain fog

While not a particularly “scientific” term, brain fog does describe what I experience with most migraines. It affects cognition. It’s hard to describe precisely as it affects the very skills one needs to be able to accurately recall one’s experience. Perhaps it can be described as feeling distracted continuously, being unusually forgetful, and finding it difficult to complete even simple tasks. I may find it difficult to recall what a word means or being unable to locate the correct word to use. Sometimes I might be able to understand individual words but not be able to comprehend a sentence made up of those words, and at times I may not be able to string a sentence together that is understandable to others.

Brain fog often results in short term memory loss. I can start reading or writing a paragraph, but by the time I reach the end of it, I have forgotten how it started, and have to read it again. In a worse case scenario, I simply give up as I’m unable to get the gist of a single paragraph, let alone several in sequence.

Not being entirely in the here and now means that some tasks such as driving are particularly dangerous. Being unable to concentrate may mean I do not detect potentially dangerous circumstances until too late., and even then, may not be able to choose the most appropriate (or indeed any) action to take. At least these days I am aware that I have brain fog – something that didn’t always register only two decades ago. Mindfulness training has helped in this regard. So I do know when I shouldn’t drive, much to the Wife’s frustration as she prefers being a front seat passenger even though she can drive.

Visual disturbances

Every migraine I experience affects some aspects of my vision. One of the most frustrating aspects is the inability to see clearly. It’s rather difficult to describe, and while sometimes what I see can be blurry, as in being out of focus, sometimes it’s not a focusing issue, but the inability to process what I see. One way for you to grasp what I mean is to fix your gaze on one word in this paragraph and while doing so try to read the words above, below, to the left and right of it. Difficult, right? And words even further away get progressively more difficult to read, and outside a very small window become impossible to read even though you know they are there. Well, for me during a migraine the best I can see is that word one or two away away from the one you have fixed your gaze onto.

Other common visual disturbances I experience can be seen in this next video clip where, through a virtual reality headset, others experience realistic simulations of what a migraine with aura looks like to the sufferer:

What Does a Migraine Feel Like?

Other visual disturbances include blind spots. By this I don’t mean small areas that are blank, but a functioning area of the brain “fills in the details” for another area that isn’t functioning as it should. For example I may check the time by looking at a wall clock, but the clock appears to have vanished. All I see is the wall and there doesn’t appear to be any blanks spot at all. However if I move my eyes away from there I expect the clock to be, it suddenly appears, as if by magic. What has actually happened is that I do in fact have a temporary blind spot, but another part of the brain recognises the pattern on the wall and reconstructs it to fill in the blind spot. We all have a small blind spot where the optic nerve leaves the eye, and we all have the neurology where a part of the brain fills in the missing details by “filling in the gap”, but usually we’re unaware of it occurring at all.

Motor disturbances

These are many and varied. They go from the simple such as finding it difficult to write legibly or tie shoelaces (hence most of my shoes having velcro fasteners) through difficulty with speech and balance (giving the appearance of being drunk) to hemiplegia where the right side of my body, especially the face and arm, but to a lesser extent my leg, lose strength and fail to respond unless I make a conscious and determined mental effort to control them, and then only clumsily.

Over the past month none of the aforementioned symptoms have been at their worst. In fact each symptom has by itself has been barely noticeable to others, but when so many conspire to be present at once, even in “mild” forms, the net result is a person who is unproductive, however that term is understood, and unmotivated, and when pushed to do something, performs it badly. Such is life.

Safe landing

When I was about ten or eleven years old, I joined into the tail end of a conversation about what humans can and cannot do. One of the older boys in the group claimed that it is impossible for humans to land on two feet and not bend the knees. He said that even if you try to keep your legs straight, you can’t as bending the knees is instinctive and you cannot override it.

A few of the kids decided to test this theory by jumping off a chair. Not one of them managed to land and keep the legs completely straight. Their knees bent to some degree, and the group decided that indeed it was impossible to land without bending the knees. I wasn’t convinced, as I observed that none of the children locked their legs straight during the descent. So I decided to demonstrate that it was possible to land without bending the knees.

There was a reason I had been dubbed the little professor. A well as being a mine of (mostly irrelevant) knowledge, I liked to experiment. I clambered onto the chair, launched myself into the air and locked my knees absolutely straight, and held that pose during the descent. And I proved it is possible to land without bending the knees.

What I didn’t prove is that you can do it safely.

I saw stars and flashing lights. I heard a roaring sound like a freight train rushing past. I felt and heard a grinding sensation in my neck. Then there was blackness. I don’t know if I actually passed out, but moments latter when the roaring, lights and darkness abated, I found myself standing upright with flashes of pain going off along my neck and spine. The boy who had made the claim, shrugged his shoulders, said “Oops I was wrong”, then turned his back on me and walked off.

It never occurred to me at the time that I might have been set up. That possibility didn’t occur to me until a decade later, by which time I had lost all contact with the group. If it was a set up, I’m grateful that they chose a chair to jump from and not the garage roof.

The first migraine attack that I remember having was  when I was around ten or eleven, although they didn’t become a regular feature of my life until I was twelve of thirteen. I wonder if there’s a connection…

It sooths me

At times when I sense a migraine is on its way, I often find comfort in music. I’m not sure if it has any effect on the course of an attack, but it keeps me in the presence. By this I mean that my awareness of self does not disappear.

While migraine pain can be debilitating, other effects of an attack can create a surreal sensation where I feel I am no longer within my body, have no conscious control over it, and can only observe a shell which may or may not be able act human-like. It’s being aware of no feelings or emotions. No pain, although I am aware that the shell trembles with pain. No happiness nor sadness nor fear nor joy. Nothing. I’m not even aware of of sensations of light, sound or touch, although the shell reacts in fear or pain to them. The shell even responds to words spoken to it by others. But I, the observer, do not hear the words, only know that the shell is being spoken to, and it slowly, reluctantly tries to make an effort to respond. I’m aware that the shell is confused and disorientated. I feel no pity or compassion, no empathy at all towards the shell. I’m merely a detached and numb observer compelled by some force to hover nearby and observe, while mists of darkness come and go.

In all my 68 years I have never experienced a bad or frightening dream nor a nightmare. Apparently everyone gets them occasionally, or so I’m told. But then, I have no memory of any dreams since my mid teens, certainly not since I finished secondary school. I mentioned this fact when I was undergoing counselling for pain management, and after I had attempted to describe how I sometimes experience the “out of body” described above. The counsellor made the comment that those experiences must be more terrifying than any nightmare.

That puzzled me then as it still does today, as I’m not aware of any emotion at all during these episodes, and at lucid moments like now, I am, at best, ambivalent. I have no feeling or emotion about what happens to me during an attack. I feel no more about the attacks than I do about the fact that some ponds are deeper than others. I’m certainly not conscious of any fear or trepidation about an inevitable attack. Migraines come and go, just as night-times come and go.

While I don’t have dreams I have momentary glimpses that are very dreamlike (from what I remember of dreams), but they have turned out to be actual moments during a severe migraine attack, where the darkness momentarily lifts. For example I remember one dream-like set of scenes where there’s a moment of watching a person walking down a street knowing it’s important for them to be somewhere but not knowing where that is. There’s a flash where a person is sitting on a flower bed with people milling around, and another very short scene where bright lights come and go and a person is wanting to escape. There’s also a picture of a smart phone login screen, and a visually blank scene where somebody or somebodies are asking a person for a name (possibly that person’s name) but the questioning is relentless, not giving the person an opportunity to formulate an answer, let alone give it. There’s a recollection of a breeze and of bells ringing. There’s an awareness of something pressing all around an arm and another where wires are being attached to a torso. These were all actual events during one attack where apparently I was picked up by the police in a somewhat disorientated and confused state and taken to the hospital in a nearby city.

I’m not sure if music really keeps me in the present and out of the fugue-like state, but I can say that as long as I can hear the music, I am aware of the emotions that music can evoke. No, that’s not quite right. I feel the emotions. And I want to hold onto them. Here’s two very different pieces of music that are typical of what keeps the surrealism at bay during the early stages of a migraine attack. They might surprise you.

I find gentle soothing music, tends to draw me into that surreal state, but if I get past the window where that state might take hold, and a more typical migraine evolves, then such music played very softly does help provide some relief from the incessantly throbbing headache.

A week of it

It’s been one of those weeks where it has made itself very present in my life. In fact it has been intruding somewhat more frequently than normal over the last month or so.

At the beginning of the week (or was it the weekend? Timelines are rather vague things when it is around), I went out for a short evening stroll of ten to fifteen minutes only to return home five hours later, shortly after midnight.  Obviously it had plans I’m not aware of. I have no idea where it lead me, but judging by the wear on my sandals and the pain in my leg muscles the next day, I walked nonstop for the entire time.

Then mid-week, I took the car to our garage for its six-monthly WoF (Warrant of Fitness). As I was handing over the keys, I felt that odd out of body sensation that I sometimes get before it makes an appearance. Fortunately there’s a supermarket next door to the garage, so I decided to head there and buy an isotonic drink in case it was being triggered by dehydration.

I remember walking through the supermarket carpark (parking lot), but have no recollection of entering the store. As best I can work out, a friend saw me staggering about in the town square over an hour later.

Apparently others had seen me but assumed I was intoxicated and did nothing to assist me. However she knew enough about it to get me safely home.

By Friday my wife was concerned that it had been around almost continuously for a week and showing no signs of leaving. She managed to get an appointment at short notice at the medical centre. Apparently the doctor took one look at me and promptly ordered an ambulance.

I have no recollection of visiting the medical centre or of the trip to hospital. I do have a vague recollection of having a fascination with a stream of lights, which were probably passing ceiling lights as I was wheeled down corridors.

The first clear recollection I have is being told that I would be going for a CT scan shortly. I had the scan at about 2:00 am on Saturday morning.

It seemed to have abandoned me by midday Saturday, and I was informed that I would be discharged later in the day provided I could show I could walk steadily. Finally I was given my discharge form mid afternoon, and an hour later I was home.

Has it left me for the time being? It doesn’t seem so. It had taken up residence again by the time I woke up this morning (Sunday). It is just being a minor nuisance at the moment – a mild pulsating headache and a misjudgment of clearances between objects on my right and and various parts of my anatomy (and I have the bruises to prove it). I am hoping it will soon get bored and leave me alone for a while. Time will tell.

I notice that it has been given a new name. On previous discharge forms it was either not given a first name, or was given a first name of “atypical”. This time it had been given a new first name of “hemiplegic”. It‘s last name hasn’t changed. That’s still “migraine”.

Hello hemiplegic migraine. I can’t say I’m pleased to know you.

A week in the life of … (part 1)

As he passed through the bedroom doorway, his right shoulder collided painfully with the door-frame, followed immediately by the little toe on his right foot doing the same. While he is accustomed to abusing his shoulder in this manner, the same can’t be said for the toe. If he was into swearing, this would have been an opportune time to do some. The toe is positively yelling at him to say something – anything – loud and inappropriate. As usual, he can’t think of a single expletive in the heat of the moment, but he manages to expel air between clenched teeth, making a satisfying groaning sound, quite appropriate for the situation he thought.

The throbbing toe, while painful, distracts him from the the little man in his head bashing the inside of his left temple with a sledgehammer. As he descends the stairs, the throbbing in his toe subsides, and the thumping pain in his head returns with vengeance. He wishes that the toe would complain for a little longer – “a change is as good as a rest” he recalls. He feels sorry for the little man with the sledgehammer. The man has been swinging it non-stop for two days, so he’s probably quite tired by now.

At the foot of the stairs, he turns and goes into the kitchen carefully keeping as far to the left as possible. No sense in colliding with another door-frame. His wife isn’t there as he expected. He goes to the window and looks down to the carport below. No car. She must have left early. Did she say good-bye to him this morning? He can’t recall. He turns to look at the clock on the wall. No clock. He looks away and then back to where the clock should be. Slowly it fades into view. First the sliver grey frame, then the white face followed soon after by the numbers. Finally the hands appear. Eight o’clock.

Coffee time. He goes to the cup rack his daughter made at school many years ago. A beautiful wood-stained object with three crossarms capable of holding six large coffee mugs. He waits for a cup to fade into view. His first attempt at grabbing a cup fails as his hand passes straight through it. He closes one eye and has another attempt. Success. He picks up the stainless steel coffee plunger. By its weight there is at least two cups of coffee remaining. He pours out a cup, then wipes up the copious amount of liquid spilt onto the bench-top.

He searches for the sugar bowl. He knows it should be on the island counter-top and starts scanning for it. On the third scan he locates it, almost directly in front of him. He tips two teaspoonfuls of sugar into the coffee cup, not noticing that he spilt most of the second onto the counter. He makes his way to the microwave, and places the cup inside. He goes back to to gather a dishcloth to wipe the spilt coffee from the turntable. Closing the door, he presses “Warm+” and then the “Start” button.

He waits while the microwave’s infra-red sensor monitors the rising temperature of his drink. He becomes aware of a dampness in his right sock. Had he spilt something and stepped in it? He looked down at the floor. Red streaks. Where did they come from? Plum jam? Beetroot? He doesn’t recall seeing either today? It looks like … blood!

To be continued.

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Contrary to popular opinion, migraines are not just a bad headache. They can affect a sufferer in many different ways. This story is an attempt to describe a week in the life of a chronic migraineur. The migraineur in the story is not exceptional. His symptoms, while not common, are not as extreme as experienced by many others. He has auras and other visual disturbances, loses fine motor control, and experiences cognitive and executive failure during attacks.

Between attacks he has been described as of above average intelligence, open minded and having a dry sense of humour. During attacks he has been seen by others as being drunk or under the influence of drugs, having a stroke, or suffering from dementia.

The story is being told because too many people have little or no tolerance of those who are “different”. The aim is not to gain sympathy. It’s not wanted or needed. The aim is to give a little insight into the life of just one person who is just a little different from the norm. If it paves the way for a few to become more accepting of others, then it will have served its purpose.

The person portrayed in the story is real and and the events described will be those that happened to him over a single week. I will endeavour to be as accurate as I can, but as some events cannot be recalled fully, some “filling of the gaps” may be required. For this, I hope I am forgiven.

In case you are wondering how I am able to tell this story in detail, it’s because it comes from personal experience. The week is just one out of the fifty two I lived this last year.

“If I was you, I would kill myself”

Believe it or not, those words (slightly paraphrased) were said to me by a counsellor I was seeing. That was five years ago. The reason I was seeing the counsellor is irrelevant to this story suffice to say that it was related to a matter that seriously affected my relationship to those nearest and dearest to me.

I had just completed describing my everyday life to her when she uttered those words. It wasn’t something she blurted out, but was a slow and careful statement made after a moment of silence. I wasn’t shocked by her statement, but I remember thinking that it was was an inappropriate comment for a counsellor to say to a client. I didn’t understand then, and still don’t understand now, why anyone in my situation would want to contemplate suicide, but I when I have discussed the inappropriateness of her comment with others, many have tended to agree with her.

So what is it about my life that others think should make it unbearable?

For as long as I can remember I have had headaches. I’ve also had periods when I become totally disoriented and confused. There would be occasions when, for example coming home from school, I would discover I was somewhere I didn’t recognise and didn’t have a clue how I got there. There would be times when I couldn’t comprehend what people were saying even though I understood each of the words they used. Sometimes I would forget the meaning of specific words. Sometimes a word I wanted to utter was replaced by something totally different. Sometime my sensitivity to light and sound became unbearable. Often these cognitive problems coincided with the headaches, but not always. Not knowing any different, I thought this was normal.

As I entered puberty, the headaches become more frequent and often were accompanied by bouts of nausea and vomiting. These were diagnosed as migraines. These migraine attacks would  occur somewhere between  once every few days to once or twice a month. I was still plagued by the cognitive problems but less frequently than the headaches, and not realising that they were not normal, I never mentioned them to anyone. I was assured that I would “grow out” of the migraines, and by the time I was twenty, the migraine attacks were down to about one every two or three weeks.

This state of affairs remained until I was in my thirties when the migraines slowly increased in frequency. It was also beginning to dawn on me that there were significant events that I had no memory of, and couldn’t be explained away as forgetfulness. There were times were I felt a distinct disconnect between my mind and my body – almost like I was simply an observer of another being. I also noticed that sometimes I would forget how to do simple things such as tying my shoelaces, or, if I did remember how, I couldn’t get my fingers to cooperate. I became sufficiently concerned about these issues that I finally mentioned it to my doctor when I turned forty.

A series of tests revealed nothing untoward, and I suspect the medical profession thought I was making it all up. I almost convinced myself that it was “all in my mind” and perhaps I should seek the help of a psychiatrist. I didn’t. The migraines continued to increase in frequency and intensity through my forties, as did the cognitive problems. I found I often missed door openings and collided painfully with the door frame or find that the fifteen minute drive from work to home would take an hour and a half.

I had just turned fifty when it was decided I could no longer work full time, and I had my first EEG and brain MRI. The EEG was “inconclusive”. The MRI revealed an unusual occurrence of white matter, but was “considered not to be relevant” to my symptoms. Shortly after this I was picked up by the police as I was apparently staggering around town as if I was intoxicated. It seems they thought I might be having a stroke and when I came to I found myself in the unpleasant noisy and brightly lit environment of the Emergency department of a nearby hospital.

This was the first of many occurrences where I have ended up in hospital with stroke-like symptoms. Despite multiple MRIs, EEGs, CT scans, x-rays, blood tests, spinal taps and psychiatric examinations, no definitive explanation has been found. The closest they have come to a diagnosis is “it’s possibly atypical migraine”.

At sixty I was diagnosed as being on the autism spectrum. This possibly gives an explanation as to why I don’t feel as distressed about my condition as others think I should be. And while I can intellectualise why perhaps others might find my life is distressing, I just can’t feel it.

Now I’m in my mid-sixties, and my headaches, cognitive skills and motor skills fluctuate on a daily basis. Some days I’m almost in a vegetative state, on other days I feel like I’m a kid again. Some days I worry about the stress I undoubtedly impose on my family.

But on the whole, I am happy. I can still admire the beauty of a sunrise, experience the thrill of a thunderstorm, delight in the squeals of joy from small children. When I’m able, I can still enjoy taking part in a deep philosophical discussion, or feeling the breeze on my face on a long walk.

Yes, life is good.