|Migraine Induced Stroke - a case history of a 'headache'||February 2003|
|A case history so far. The subject of Migraine Induced Stroke was a complete unknown to me twelve months ago, and having never suffered from migraine in my previous 49 years on the planet, would not have captured my attention anyway. Today, I am less sure... but still not convinced.|
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The reason behind this page is simple. This has been a bizarre experience for me, with intense levels of confusion and pain. Twelve months on, I seem to have lost sight of what had previously been normally tolerable levels of pain, having long since redefined them simply as 'discomfort'. That discomfort is with me constantly still, with headache peaks which sometimes defy description. If you've found this page as a result of a general search for some of the many keywords used to index it, then it's possible that you may find something of interest. Contact from anybody with similar experience would be warmly welcomed, via e-mail, to firstname.lastname@example.org.
On February 22nd 2002, I experienced the first of a short series of medical events which have since been diagnosed as a 'migraine induced stroke', concrete evidence of which appeared as four separate cerebral infarctions - areas of brain cell destruction - on an MRI scan which was taken three weeks later. These infarctions were apparently the result of interruptions of blood supply to those areas of the brain as a result of blood clots preventing flow in small blood vessels, three supplying the left cerebellum and the fourth supplying the thalamus. Since subsequent medical examination showed no obvious cardiac or circulatory cause for the creation of these clots, it is assumed that these clots formed in situ at the points of constriction of blood vessels going into spasm during a severe migraine attack.
With no prior history of migraine, this came as something of a shock to me - and should act as a warning to others never to underestimate the significance of a 'severe headache'. Over the past twelve months, I have had cause to learn much about stroke, and more recently about the function of the thalamus - effectively a junction box through which virtually all sensory input passes en route to the cortex.
In the first three weeks, before MR scan evidence was available, I had difficulty convincing either family or doctors that this was anything other than a case of 'stress related illness' - a pigeonhole in which I found myself placed by a surprising number of people. As an active IT consultant, frequently working long hours and commuting long distances, I enjoyed my occupation, and certainly did not consider it a source of significant stress. To be honest, the sometimes long periods on the road were periods of peace and solitude, away from the more telling stress involved in managing the emotional and financial needs of a growing family. So to me, "stress" was never a significant contributory factor to my sudden state of "unwellness". I use that term deliberately, since by no normal sense of the the word could I associate the experience I was having with "illness". My body seemed fine, but something had clearly 'failed' in my head, and was causing intense internal confusion and disturbance.
In the twelve months which followed, I have witnessed a remarkable process of 're-learning', as fresh brain cells appeared to take on the role of those knocked out by the stroke. This process was quite rapid for the first three to six months, during which time I recovered all general functions and skills, including regaining experience and confidence for driving. I was fortunate in having no lingering mobility issues, the issues being persistent, chronic headaches and varying levels of spatial disorientation. These two problem areas still remain twelve months on and, if anything, are becoming more entrenched. While the headaches respond in varying degrees to medication, the disorientation has become a fact of life which I suspect I will have to live with.
Setting the scene....
The week before this event had been mostly pleasurable days. The previous Thursday I had flown out from the UK to Los Angeles as the guest of a documentary filmmaker, with whom I had been collaborating on a personal project. A most enjoyable weekend in the company of some of the greatest mountaineering legends of the twentieth century, three of whom - as eminent US doctors - provided great e-mail & telephone support and encouragement to me during the first few weeks of this little adventure. In fact, support received from close friends via the internet have carried me through some rough times this year, and I owe them all a dept of gratitude. Much of what is written on this page is lifted verbatim from e-mails written over the past year.
After this long weekend of relaxation, I flew home to the UK on Tuesday, and after attempts to make peace with my wife - whose disapproval of the trip had been absolute - threw myself back into work early on the Wednesday morning. With my business diary changing daily, and the need to attempt to make peace at home paramount, I returned home each evening for the last three days of the week, absorbing the 100 mile each way commute, quietly relieved that I'd managed to ward off jet lag so well.
Wednesday and Thursday passed without incident, I felt physically tired but emotionally and mentally still pretty relaxed. From Friday February 22nd onwards, however, life threw in a curved ball which is still in flight...
So... private medical insurance came into play and I met the neurologist at the local BUPA hospital. I prepared for the appointment thoroughly, writing down every relevant detail about the previous few days, including daily observations of stress levels - determined to lay that ghost - and made my own way to the hospital on my own. Having been silent witness to the previous meeting with a GP, the last thing I wanted was to have anybody with me who could distract discussion from the primary topic of stroke. In my own mind I was completely clear on this, and while there was no physical reason to suspect it, by that point I had no doubts about what the eventual diagnosis would be. Fortunately, while a comprehensive physical exam found nothing untoward, the consultant neurologist agreed that my reported symptoms warranted further analysis.
A few days later, laying on my back, with the strange headgear required by the MRI scanner, I couldn't help but feel that a diagnosis of "Stress related illness" might be the more attractive option. The weird buzzing, pulsating and banging noises from the scanner all but obliterating the music they so cheerily asked me to choose beforehand!
It was another couple of days before I received the results, at a subsequent visit to the NS. Four small lacunar infarctions - clear as day to the experienced eye - three in the left cerebellum, one in the left thalamus. In some ways, I felt vindicated - I'd kicked the 'stress related illness' into touch, but in other ways it started to dawn on me that I now needed to take this seriously. There were some worrying consequences from that MR scan which left me deeply concerned. Irrelevant though it may be, the fact that there were four separate clots - rather than just one - seemed to reinforce the seriousness of the situation. The unexplained mystery of 'where the hell did these things come from?' started to bother me. I started to think of all the worst case scenarios - weight, high cholesterol, disintegrating arteries, sedentary lifestyle, lack of exercise, stress - yes stress! One clot I could have ignored... two maybe.... but four seemed a little too many to be an odd coincidence.
Over the next few days and weeks, blood tests, an MR angiagram and a trans oesophagal echo pronounced me a fit and healthy specimen. No obvious cardiac or circulatory issues, so the diagnosis of 'migraine induced stroke' was made, and seems to have stuck.
In the meantime - I had a couple of major problems going on inside my head.
Since the initial stroke, I have been dogged by two symptoms. The first is a constant - but mostly tolerable - level of spatial disorientation, particularly in corridors and buildings where I appear to have some difficulty resolving visual perspective.The second is more problematic, and has now been diagnosed as 'chronic migraine'. This appears to be more of a "catch all" diagnosis for an unexplained headache that happens to respond to some of the usual migraine treatments.
The headache symptoms and the dizziness/disorientation both came on within 5 days of the original stroke. The major headache that accompanied what was obviously a stroke on the Friday night gradually lifted and went within 24 hours. The second 'event' 5 days later, when I was suddenly overcome by a feeling of total disorientation was not, itself, accompanied by any obvious head pain at all.. However, it is since that event, that the general constant level of disorientation and permanent headache have made their presence felt.
Neither of these symptoms are easily described, other than by attempted illustration in examples.
The spatial disorientation is a bizarre phenomenon. It's easiest described as it first manifested itself, on my first trip to a supermarket after the stroke. Walking along an aisle with shelves on either side, I was aware of very noticeable dizziness while at the same time finding that my peripheral vision seemed to be enhanced. At the same time as trying to walk along the aisle, I found it impossible not to concentrate on the details of the items on the shelves beside me. Normally, unless one specifically looks to the side, the brain ignores this level of detail but, to me, it did not. Coming to the end of the aisle, and making the 180 degree turn into the next aisle became a major exercise. All lines of perspective - not just of the shelves but of the inside of the building itself, had to be re-drawn at the brain continually as I turned the corner. To use a computer analogy, it was as if I was running an old generation PC, low on memory, trying to render an image via a graphics card which needed more power and memory than was available! Turning the corner was a slow process as my brain came to terms with the changing perspective in the room.
Experimenting with various buildings showed that most large, modern buildings tried cause this effect. Some older buildings, with less pronounced geometric shapes and walls where the perspective was broken up by pictures, posters and plants, were less of a problem. One particular office location which I used regularly in London, having been recently refurbished without any decoration to walls was almost unbearable to be in.
In addition to my being more aware of the detail in my peripheral vision, I found that high levels of granularity in the patterns on walls and floors, also brought about a type of dizziness. Walking along a footpath close to my home which has recently been given a new gravelled surface treatment, I still find it difficult to ignore the path surface - which seems to float above ground level.
One of the most curious effects I've witnessed occurs when travelling up or down an escalator. This has become the ultimate weird "perspective" ride being the combination of both horizontal and vertical movement, which is confusing enough in itself these days- but with the added confusion factor that I'm moving but not walking. Another fascinating effect - and I have to keep trying this - is that try as I may, I cannot focus on those little parallel lines that run across the stair treads from front to back. The escalators in the local shopping mall are guaranteed to confuse the hell out of me, and I use the existence of this effect as one of my personal benchmark tests to see whether or not I'm making any improvement.
Over the first 3-6 months, some of the simpler effects partially wore off. I learned to store away 'templates' of buildings I became familiar with, and stopped wasting undue amounts of processing power analysing, and disregarding, detail in my peripheral vision that I was not particularly interested in. The problems of moving within a changing perspective became slightly less, for example driving along narrow English country lanes with high, clipped, hedgerows became possible - something which had profoundly confused me two months from the stroke. The effect of changing perspective on any form of movement - including driving or being driven - became restricted to just walking. It seems now that when I'm sitting relative to, and within, the enclosed fixed space of a vehicle which itself is moving through the environment, normally there is no problem.
Most recently (23/2/2003) I had an unexpectedly severe reaction to a particular building - the Station Hall of the York National Railway Museum. On this occasion I was aware of a raised level of 'confusion' and a heightened intensity of the 'heat and pressure' effect between the ears. It seemed to be made worse by being surrounded by crowds of people all moving in random directions, rather than in any orchestrated direction. The following day, walking round the Cambridge college buildings and libraries (deliberately!) managed to provoke the second level of headache.
Without medication, there is a constant headache symptom which I can only describe as an intense feeling of heat and pressure on an axis directly between the ears. I imagine this to be how it would feel to have one's head inside a microwave - being a feeling of heat as 'energy' rather than as 'temperature'. This sensation seems always to be present - 24 hours a day, 7 days a week. In the middle of the night, when I'm woken by it, it is often accompanied by a form of tinnitus, which curiously always appears as a kind of pure sine wave - and always of the same apparant frequency - a high 'E'.
This background level of "headache" is supplemented by pain 'peaks' which are intense stabbing vertical pains downward from the crown of the head. At its most intense, this stabbing pain becomes intolerable. These peaks start to appear once a dose of propranolol (see below) runs out of steam, and the onset of these peaks seems to be accompanied by what I can only describe as an intense feeling of 'pins & needles' inside my head. The timing of these events varies. Over the period of the last year, there have been good periods - usually of 3-4 days when I have been relatively pain free, and bad days when I've been in more or less constant pain. Mostly, the day is broken into periods when medication appears to be keeping the headache under control, and the remainder, when I'm hanging around in pain waiting for the next scheduled dose of something. As the next section of these notes discusses, since the medication regime has been under constant review, as effectiveness wanes, then I'm not really able to say that I've achieved any level of stability. What I can say with certainty, is that on almost all days, I am at some point in considerable pain.
This headache is partially relieved by propranolol hydrochloride (in seemingly ever increasing doses), responds to amitryptyline (to enable sleep), but does not respond to rizatriptan or imigrain. It is not sensitive to external inputs such as loud noise or light, but is sensitive to head movement.
The cause of the stroke is assumed by the medics to have been 'a severe migraine'. The constant headache since has been diagnosed as 'chronic migraine', but in the previous 49 years on the planet, migraine was absent. My own recollection of the first event (Day 1, above) is that what was noticeable to me at first was the loss of cont]rol of my right side. I was, after all, running at the time. The severe headache appeared to lag behind - to be apparent momentarily later... While I understand the mechanism of the migraine induced stroke, I can't really relate it on what happened on that occasion. The second key event (Day 6, above) was accompanied by absolutely no headache whatsoever... In fact, all felt peaceful and 'quiet'.
At no time have I ever encountered any of the 'classic' symptoms of migraine. The headache has been 'without aura', and in the absence of medication, is constantly present.
My uneducated thought on the headaches is that they're a result of a massive amount of CPU processing which is needed in the background to make sense of the visual disorientation - the difficulty in rendering the graphics from the signals the eye passes to the brain. If we follow the computer analogy further (and I'm sorry, but it's the only one which seems to fit!!) then somewhere inside my head there's the equivalent of a hard disk thrashing away while these confused signals are sorted out.
That, to me, sounds a plausible explanation for why I get both headaches and spatial disorientation.
What is starting to become clear in my mind is that the damage to the thalamus - clearly shown in the MRI scans - is the root of the problem here. Whereas other activities, skills and experiences I managed to 're-learn within 3-4 months of the stroke last year, this final problem is liable to run and run - it doesn't seem to be fixing itself.
Medication started initially with pizotifen - which semed to have little or no effect. Next to be prescribed was propranolol hydrochloride - firstly in 3 daily doses of 10mg, increasing with a few weeks to 3 x 20mg. Within a couple of months of this regime starting, the headache peaks started breaking through late afternoon, and the evenings became miserable. A young GP in my local practice then suggested that a slow release, long acting beta blocker might be the answer, prescribing atenolol in that form. This was entirely ineffective, and after 3 or 4 days of increasing pain, I saw the practice leader who switched the drug for Half Inderalthen 80mg LA - the slow release form of propranolol hydrochloride. Relief followed, for a few weeks. After a few months, that was topped up with individual hits of 10-20mg later in the day. General pattern has been that propranolol helps to keep the headache at bay, but after 4-5 weeks at a particular dose level it becomes ineffective - and needs to be increased. After 6 months, good sleep was becoming a serious problem. A low dose of temazepam was prescribed, but it was useless!! Killed my muscles, but my mind and headache still whirred away!. Then onto Amitryptyline which, after a week or so kicked in and at least enabled me to have nights of sleep.
Problem is, I need it for the painkilling effect, not the overall sedative effect, but it's the latter that really knocks me out. (If I'm honest, there's another issue in that I'm unhappy with the perceived (by me!) stigma of being on an 'antidepressant. This may seem stupid, but I am NOT depressed - just bloody frustrated with this!!). After 4-5 weeks again, the 'pain' started breaking through at night, and instead of doubling the dose, I discussed with the GP and we agreed to drop it, but double up the propranolol instead. Four weeks later, having got used to that regime, guess what started breaking through again?!
When the pain peaks - and hits seriously intolerable level, I seek additional pain relief. Interestingly, neither rizatriptan nor imigrain have any effect whatsoever - so I guess it's 'not that sort of migraine'(!) After the first six months, I was getting through 1200-1600 mg OTC ibuprofen on an average day - alternating it with prescription (UK) strength co-codamol (500/30mg) to try and lower the risk of the analgesics causing their own problems. Since October, in order to prove that 'codeine headache' isn't a factor, I cranked up the threshold and dropped all use of proprietary analgesics, leaving it all to the combination of propranolol (morning) and amitryptyline (night), with the ineffective migrain pain relief noted above.
Bottom line is - the doses keep slowly rising, the 'discomfort' is more or less constant, and is not under control, and the peak 'pains' have no relief at all. I just have to lay down and weather the storm. Fortunately, these serious peaks are still maybe only once a week - I need to start logging them again. But until they reduce - and the medication levels start dropping, rather than rising, I can't consider this 'under control' which makes properly getting back to meaningful work to support the family very, very difficult. I'm amazingly lucky in that my employer is giving me the time and space that I need to handle this.
The definition of pain
The difficulty I have here is defining Pain vs Discomfort. To me, a dentist accidentally drilling into a live tooth and striking a nerve without anaesthetic is clearly pain. A serious hangover used to cause a degree of pain which was tolerable (it was, after all, my fault). and hitting my finger with a hammer while doing some repair at home hurt like hell for a few moments. Key thing is that I can understand how each of these things happen and what I have to do to prevent recurrence. They're also transient events - they last a finite time.
For the past year since my stroke, two things have caused me intense discomfort - and at times severe pain. Firstly "a headache" and secondly a feeling of disorientation and dizziness when walking. Both of these are constant, with peaks. the headache, when it peaks, is almost absolutely unbearable pain - it takes a lot to reduce me to tears, but this does. I guess I rate that as '9', since there has to be something worse! The 'normal' background level of 'discomfort' which the headache causes is tolerable, by nature of being constant. If you're living with something, day in day out, you raise your pain threshold to accommodate the increased background level.
The disorientation is extremely tiring, very confusing and causes me a lot of distress - but I cannot describe it as pain. I cannot understand why it happens, and certainly can do nothing to relieve it. It's all the more frustrating because, since it doesn't cause me to fall over - I appear to others to be mostly OK. I'm slowly coming to the realisation - to use a computer analogy - that my graphics card has failed and now has serious problems in rendering at the brain, the moving image that the retina picks up. Now this isn't pain in the traditional sense, but it's a bloody 'painful' experience to live with.
Is this pain? It's not the sharp stabbing pains that my "headache" produces when it peaks, but a slow, inexorable, dull ache that's forced its way to the front of my mind, waking me from four hours of useful sleep. My consultant neurologist remarked in a letter to my GP a month ago that 'this man is still very introspective about his headaches' - Helpful comment that - it's damned hard not to be introspective about something that wakes you up, or prevents you from sleeping,.so regularly! Doesn't help my attempts to get back to a proper working regime either!
In February 2003, in the twelth month following the initial episode, I changed to another respected GP in the local medical practise, and sought a second neurological opinion. The new Neurologist is significantly more interested in headache symptoms, and refreshingly lacking in the somewhat dismissive arrogance of the previous one. In fact, this new guy clearly rises to the challenge of a migraine diagnosis, and went about the initial consultation with great interest (and an equally high level of expense to my insurance company, I might add). There are many questions generated by this meeting which only really occurred to me after the event, but which I shall enjoy posing next time. For a start, his interpretation of the original MR scans suggested evidence of a large area of bruisingm certainly not picked up by anybody before. It seems that the interpretation of these scans requires a skilled and interested eye. The first consultant had admitted that he was not an expert in reading such images, and deferred to his local consultant radiologist for detailed interpretation. With hindsight, there is a lesson here. If you're going to the expense of an MR scan - which in then UK runs at around £600 a session, then you'd be well advised to seek a series of interpretations. It seems bizarre that a significant area of bruising should have been missed in the original readings, but this appears to have happened. While the new neurologist is referring to the events of last February as a major and serious trauma, he appears to have reservations about the previous stroke diagnosis.
The outcome of this first consultation was a change in medication - away from beta-blockers and into anti-convulsives. Given that in the past six years I have developed a tendency to asthma, his views on the wisdom of taking beta blockers were sufficiently strong as to warrant the comment that he wouldn't take me on unless I changed the medication! Interesting - because I have been querying this risk for many months, particularly in the light of the constantly increasing dose, but have never before received such a clear direction.
With regard to the disorientation, he referred me on to a clinical neuropsychologist in Surrey - a lady well skilled in her trade, though less versed in punctuality. This session was interesting, reassuring, informative and I believe will be extremely useful. Over a ninety minute session, she subjected me to a number of tests - many of them timed - to assess verbal and mental reasoning skill levels - a comprehensive set of exercises designed to pinpoint possible areas of disfunctionality in the brain, including ability to multi-task, numerical, verbal and visual memory skills and so on.
The net result was a reassuringly high overall IQ scoring, with some apparantly average or below average function in the areas of visual menory. The manner in which these tests are calibrated gives the neuropsychologist the ability to map function against normal acceptable patterns, and derive some measure of the extent of the impairment to visual memory.
In between these two appointments, I tapered off the beta blockers (rather rapidly!) and phased myself onto the next suggestion - Epilin (sodium valproate). Starting at 400mg/day and moving up rapidly to 1000mg/day. It goes without saying that for 24 hours somewhere in the middle of this I was virtually bedridden with severe head pain. Having come out on the other side, the Epilin seemes to be performing the role previously occupied by Propranolol Hydrochloride. The headache is starting to 'stabilise' again, and all looked good until.....
At the risk of appearing to be a hypochondriac, this relates to an old injury - at age 19 - which resulted in what was termed an 'unstable disk'. Bottom line is that from time to time - these days probably once every couple of years - I 'put my back out', appear to get a nerve trapped, and am in significant pain unless I very carefully watch both posture and gait. This was never ever fixed or understood by conventional medicine, but on the last two serious incidents - over the past 20 years - have been dealt with swiftly by a local osteopath.
A few days ago, I twisted awkwardly, caught this damned nerve, and since then the pain has been intense. In fact, it has all but obliterated the headache, which remains mostly subdued in the background. The last couple of days have been miserable indeed, if slightly puzzling that the headache has been pushed so obviously into second place. The pain from my back is as bad now as it was during the early days of 1972. It is hard to move from one position to another without the fear of this pain getting in the way. My initial feeling yesterday was that this was, for some reason, a much worse incident than 'normal'.
This morning, the probable answer seems to be that this is another manifestation from my impaired thalamus. Last year, after the stroke, I experienced various interesting symptoms while functions of the brain were restored to normal - or near normal - levels. What I suspect I am now experiencing, is the brain's 're-learning' of its way of approaching pain. In short, it may be that I'm going to have to relive episodes of pain in order to reset the brain's ability to 'ignore' them. I don't think this counts as hyperalgesia, rather it represents a need to re-learn' my mental control of pain... Hmmmm... I'm not relishing the next outbreak of toothache!
Putting a positive spin on this, while the back hurts like hell at the moment, I'm assuming that this is simply the result of the thalamus mischievously 'amplifying' the actual pain, so have resolved to grin and bear it! Easier said than done but....
Any thoughts on this amateur theory welcomed... Any views on the likelihood of the thalamus recovering its normal function would be particularly welcomed!
post a further update in due course..