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.

Post Covid-19 freedoms

Terms such as freedom and liberty are often thought of as being clear cut in what they mean – everyone agrees on what those words mean. Or do they?

I think most Americans and Kiwis would agree everyone has a right to be able to drive on public roads. However we understand that driving can have serious repercussions if one doesn’t have the necessary skills to to do so safely. In order to limit the amount of harm, drivers need to provide evidence that they have the necessary skills to control a moving vehicle – a driver’s licence. Once you have shown you can competently control a motor vehicle, you retain that right until you prove that you no longer hold the necessary skills – a serious driving offence or a failed eyesight test for example.

While the US constitution guarantees some form of firearms ownership for the purposes of a “well organised militia”, and NZ doesn’t even have a codified constitution, both nations to have a long standing tradition of gun ownership, which might be reasonably be viewed as being a “right”. In Aotearoa New Zealand, the consensus is that the right to gun ownership is similar to the right to drive. It’s necessary to prove your competence to own and use a weapon safely, and this is done by a testing regime no less strenuous than that which applies to driving a vehicle.

My impression of the US is that the right to own, and perhaps more importantly carry firearms is more divided. While I think the largest block hold views not too dissimilar of the predominant view here, there are significant blocks that hold different views. At the one end there’s the card waving NRA membership that demand nothing less than a completely unregulated, uncontrolled “right” to own and carry weapons, even opposing background checks for goodness sake! Anything else is an attack on their constitutional “rights”. At the other end of the spectrum there’s a small group who call for the repeal of the 2nd Amendment or at least a reinterpretation of what it really means.

So when it comes to firearms, opinions in the US are more divided on what rights and freedoms mean and what limits, if any, should be imposed when balancing the rights of the individual against the rights of others, including the community as a whole. I believe most people understand that as well as rights, we have responsibilities, and that those responsibilities, if they are to be fairly shared, may need to be regulated in some way. I think the same is true when it comes to covid-19.

In his post “Covid 19 Delta outbreak: Peter Davis – Vaccine passport and smoke-free law” Peter Davis draws on the NZ experience of how the attitude towards smoking has changed over the decades – from one where smokers were exercising their “rights” to smoke and non-smokers had little or no recourse, to one where the dangers of second-hand smoke are understood and now prohibited in workplaces and most public venues – and how this precedent might be applicable to covid-19. It’s worth the read, and it might help some of those still sitting on the fence to understand why the unvaccinated may find they have fewer “freedoms” than the vaccinated.

Given that the evidence overwhelmingly confirms that one in three people who contract covid-19 have at least one symptom of long-covid, even 18 months after first being infected, the impact of long term health and social costs are, as yet, unknown. How can anyone on their right mind claim their “right” to unrestricted movement surpasses my “right” not to suffer long term health issues caused by their recklessness?

In many ways, we have been playing pandemic “Russian roulette” for decades – especially as the cost of international air travel has declined significantly. By way of example, when I first travelled to Japan in 1971, the return air fare cost the equivalent of 75% of my annual salary. International travel was not something one did without some long term planning and saving. It certainly couldn’t be undertaken on a whim. If I was still in the same job in January 2020, the same return journey would have cost as little as 1.5% of my annual salary. Pre covid, a trip from Aotearoa to Australia could cost about the same as a night out at an upmarket restaurant.

We must acknowledge that with so many people moving around the globe we have indeed become a global village. In the past the relative isolation of villages, towns and nations meant that pandemics were relatively rare, and when they did occur, they spread at a slow pace. That is no longer true.

We are far more mobile these days (well, pre-pandemic), than we have ever been in the history of our species, and this presents a greater risk of new infectious diseases spreading at uncontrollable rates across the planet. In many ways I think we have been lucky that this pandemic has been relatively mild, especially when it comes to fatalities. We may not be so lucky next time. And as sure as night follows day, there will be a next time.

It’s wishful thinking to assume we will ever return to pre-covid days. It’s not going to happen. The public (well most of us) now understand the harm a pandemic can bring – something epidemiologists have been warning us for years while we and the politicians we elect have turned a deaf ear and a blind eye to their message.

As I see it we have two options: freedom from documentation and a restriction on movement, or freedom of movement accompanied by documentation, vaccination passports being one of them. I know which I would prefer. How about you?

Direct-to-consumer advertising of prescription medicines

New Zealand is almost alone in the world in allowing direct-to-consumer advertising of prescription medicines (DTCA). The United States of America is perhaps the only other nation that allows this form of advertising, although it is more heavily regulated in the USA than it is in NZ.

This state of affairs is rather unusual in that the health industry in America is predominantly in private ownership, whereas here in Aotearoa it predominantly in the public sector. Two health systems at opposite ends of the public/private spectrum, yet sharing similar attitudes to the advertising of prescription medicines.

So, how did this situation arise? In the case of the USA, regulations were relaxed during the 1980s and 1990s, whereas in NZ there appears that DTCA was overlooked altogether when the New Zealand Medicines Act was enacted in 1981.

The question is: Should NZ to continue allowing DTCA or should we adopt regulations similar to every other country, apart from the USA have established? I tend to agree with the conclusion reached in this article in the New Zealand Medical Journal:

Pharmaceutical companies have touted DTCA as a pro-consumer activity, encouraging dialogue, empowerment and choice. Whilst available evidence is incomplete, it generally refutes this view. DTCA is a biased source of health information and is associated with unnecessary prescribing, iatrogenic harm and unnecessary costs to the taxpayer.

What’s your view?

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…

MAGA

I had thought that MAGA stood for Make America Great Again, but it’s clear that what Trump actually wants is Make The 1% Richer. So what does MAGA really stand for? Perhaps Make Asbestos Great Again?

Disabled? I Am Legend!

I have never considered being an Aspie and having chronic migraine disabling any more than the need to wear corrective lenses. While I would love to loose the migraines, 55 years of wearing spectacles is no more an inconvenience than wearing clothes. On the other hand, my differences due to Asperger’s Syndrome are intrinsically part of who I am.

I am not disabled, but society often disables me. Unstrange Mind explains it so well:

I Am Autism

Although I don’t display many of the “common” characteristics of autism, I know precisely what the author of the following piece experiences.

My Autistic Dance

You don’t know me.

You see me sit, rocking.
You hear me talk to myself,
Repeating phrases from the TV.
You watch my hands as they flap
And touch. Seemingly random,
My patterns escape your notice.

You don’t know me.

You see me on the edges,
Quiet, listening but not speaking.
You hear my outbursts:
Violent eruptions of sound and motion.
You note my non-compliance
With black marks in your ledgers.

You don’t know me.

You try to change me,
Remake me in your own image.
You teach me that I am broken.
You punish me for being myself.
You make me fearful and anxious,
Afraid to break your rules.
You drive me deep inside myself.

You don’t know me.

You don’t empathize with me.
You don’t learn about me.
You don’t try to understand me.
You fear me, hurt me, hate me.
You don’t love me: if you did,

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Farming butterflies is a dangerous business – it’s official

Currently a bill is making its way through the New Zealand parliament, updating health and safety in the workplace. Michael Woodhouse (Minister of Health and Safety) has signed of on a list of high risk industries. These industries must appoint a health and safety officer if the workers want one. Fair enough, you might say, and I would have thought so too – until the list of high risk industries was published.

As you might expect, mining is on the list, but strangely, laying explosives for building demolition isn’t. Neither is dairy, cattle and sheep farming, which account for a third of all work place injuries and more than 100 deaths over the last five years. On the other hand, worm farming, butterfly farming, lavender growing and managing a mini-golf course have been classified as high risk industries.Why?

Worms and butterflies have a tendency to attack en mass any unsuspecting worker, smothering and devouring their hapless victims. Lavender plants send out tendrils to trip farmers before sucking the life blood out of them. Mini-golfers who play a poor round take their frustration out by wrapping their club around the head of the nearest course attendant. Yeah, right.

So why is butterfly farming considered more dangerous than laying explosives? Statistics. And we all know statistics don’t lie, don’t we? They may not lie, but they don’t always tell the truth in a meaningful way. And this is what appears to have happened in this case. How?

First some background for those not familiar with the situation in Aotearoa New Zealand. Medical treatment is either heavily subsidised or free depending on where the treatment occurs. Hospitals are free, GPs, medical centres, physiotherapists, etc are subsidised. Funding for the treatment of illness and disease is sourced from general taxation and administered by the Health Department.

On the other hand, medical treatment for injuries are paid by the Accident Compensation Corporation (ACC). ACC funding comes from three sources. Work place injuries are funded from a fee paid by employers, based on the number of employees and the type of work undertaken. Injuries from motor vehicle accidents are funded from a surcharge on motor vehicle registration fees, and varies depending on the type of vehicle. All other injuries are covered by a fixed rate tax on personal income, which is deducted by the employer and paid to ACC via the Inland Revenue Department.

ACC keeps detailed statistics based on industry and types of work in order to levy appropriate fees from employers. This information was too detailed for the purposes of the legislation, so to simplify the system, data was collected by industry only and the number of categories was reduced. Worm farming, butterfly farming and Lavender growing are grouped under farming – other.  That by itself is bound to cause problems as they are grouped with other types of farming that are far more dangerous, such as crocodile farming. We’ll get to crocodiles shortly.

In compiling the figures someone decided that a population of 4.5 million wasn’t of sufficient size to gather reliable data from, so they decided that as Australia has more than 5 times as many people as New Zealand, they would include data from there as well.

Unfortunately Australia is very different from New Zealand. While NZ has very hilly and mountainous terrain, Australia is flat – very flat. Farms are large and farm transport is likely to be a Land Rover, a pick-up truck or similar vehicle with an enclosed cab. NZ farmers are more likely to get around on a quad bike, even on terrain where quad bikes shouldn’t go. Quad bikes aren’t required to have a roll cage and as a consequence are one of the most common causes of farm related accidents in NZ. By including data for dairy, sheep and cattle farming in Australia, with the NZ data, these industries appear safer than using NZ data alone.

Now we come to the crocodiles. The only place you’ll see a crocodile in NZ is in a museum, stuffed. But in Australia they are farmed, and you guessed it, they are classified as farming – other, as is emu farming. As a result, farming – other becomes a dangerous place to work.

Okay, I’ve explained why those seemingly innocuous farming activities have been classified as high risk, but what about mini-golf? That gentle sport is in the category recreation – other, the same as white water rafting. Need I say more?

Last meal

I’ve just had my last meal – well until Tuesday evening anyway.

On that day I am due for a colonoscopy, so from this evening I can not consume any food apart from some liquids until after the procedure is completed. I’ve been on a restricted diet for a few days which has limited my diet to rice, products made with white flour, egg, potatoes, fish and chicken. Absolutely no red meat, fruit, vegetables or nuts. Kind of takes the fun out of eating.

Hospitals are stress producing. I seem to end up there once or twice every year. I dislike hospitals due the noise, bright lights, constant activity and the lack a fresh cool breeze. Not the best place for someone hypersensitive to external stimuli. If I don’t have a migraine when I enter hospital, you can guarantee I’ll have have one by the time I leave.

The colonoscopy is causing some emotional stress. Not because of what the results might be, but the thought of what happens during the procedure itself has brought back a very unpleasant memory from way back last century – 1963 to be precise.

As a thirteen year old going on fourteen, I was somewhat of a loner. I had only one school friend, who also did not mix socially with our peers. I didn’t much like contact sports and couldn’t throw a ball as well as the girls, let alone any of the boys. Up until I was eleven, I often spent time talking with the girls at school, but once puberty kicked in, I found it even more difficult socialising with the girls than I did with the boys.

Somewhere about that time, rumours started to spread about my sexuality. I was mostly unaware of this, but it seems there was some controversy amongst my peers as to whether I was a “queer” or a “queen”. I suppose my social awkwardness was the catalyst behind the rumours. At that time Aspergers Syndrome wasn’t recognised and people like me were simply considered antisocial, unsocial, or just odd.

On a somewhat cold autumn day, I was invited to join a game of bullrush. Being invited to join in games was a rare event for me, so even though it is quite physical, I was happy to take part. I had no idea who the boy was, but I guess he was at least two years older than I was.

The game was to take place on a rugby field on the far side of the school grounds, so I followed a group of some twenty or thirty boys to our destination. It never occurred to me that most of the boys were considerably older than I was. The game started, and as was usual. I was never called to make the solo run. What was odd in hindsight that I was never caught during the bullrushes, and eventually I was the only player not “in”.

An unwritten rule of the game was that the more people who were “in” the higher the requirement for being caught. Early in the game, being tagged was all that was necessary, but as the game neared the end, it was necessary to have the runner pinned to the ground.

So, my name was called and I started to make my run, knowing full well that there was no way I could make the 25 yard dash through a group of boys large enough to form two rugby teams. But I was determined not to make it easy for them. Instead of being tackled as I expected, the others were gabbing at my clothes, at first I didn’t realise their intent, but after my jersey was pulled off and they started pulling on my school shorts, I began to realise they might have other plans for me.

I won’t go into full details as to what happened next, suffice to say that I was eventually stripped naked, my lips and cheeks smeared with lipstick. The same lipstick was then used to write sexually derogatory slogans on my chest, and then on my back while I was anally penetrated by several objects.

I don’t know how long the assault lasted, but eventually the school bell rang indicating classes were about to recommence, and I found myself alone and naked. I don’t recall where or how I found my clothes, but I remember creeping into the adjacent reserve of native bush and attempting to remove the lipstick from my face using grass and my underwear. I stayed hidden in the reserve until after school ended and finally when it was almost empty, I found the courage to make my way to the bicycle racks to collect my bike and make my way home.

I never told anyone about the incident. I was too embarrassed and wouldn’t have been able to face the scrutiny that would have occurred if I reported it. I wouldn’t have been able to identify any of my assailants as my facial recognition skills were almost non-existent. It wasn’t until a few years ago that I was finally able to talk to a counsellor about the assault, and even then I left out the most humiliating parts.

It’s an event that I have mostly been able to suppress the memory of, but the forthcoming colonoscopy has brought it flooding back. Quite irrational I know. A few medical staff in a hospital facility is so very different from a pack of savage youths at the back of a school field. But as the same same piece of anatomy is involved in both, the two are becoming interwoven in my mind as the day of the examination approaches.

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For those who don’t know the game of bullrush:

How to play:

One person is “in” and stands in the middle of the field and calls out a name.
The person named has to try to run to the other side of the field without getting tackled.
If they get tackled they are in and another person’s name is called.
If they get to the other side they yell “Bullrush”, and everyone runs.
The game continues until everyone is in.
The last person “in” is the winner.