A Journey Through Time. Migraine, Bipolar, Asperger Journals
I have been receiving a lot of emails from Migraine.com with whom I have just registered. In many ways it is depressing reading about the prostration, pain and sickness bestowed, for some genetic reason, upon so many women. I haven’t come across any contributions written by men yet, probably because they are much less likely to be migraineurs.
I have, of course, entitled these journals Bipolar/Asperger Journals, with no reference in the title to migraine, which has coloured my daily life far more noticeably than my bipolar. Bipolar 2 and migraine are co-morbid conditions although not all sufferers have both. Certainly depression is a symptom of a migraine attack, not caused by the suffering, more to do with the chemical, biological changes as a precursor to the attack. Likewise mild mania and over-activity as precursors to the attack could be part of both illnesses.
I am 70 this year and only now do I realise how I make little reference to others, friends and family, how debilitating migraine attacks are, how they have coloured my daily life now for so long I tend to accept the prostration they bring without much reference to what I am experiencing. And although Sumatriptan and Paramax are much more effective than resorting to 150 painkillers a month, which I had to resort to for many years, the side effects are more difficult to encompass as I age.
I realised a long time ago, just as my immediate and extended family had no sympathy, understanding or support to give to me whilst I endured attack after attack, so friends had no understanding of what such frequent attacks represented to me. I learned, very early on, to have no expectations from such people and so learned to make little, often no, reference as to how ill I was feeling at any given time. Pretence, I learned, was the order of most days, which led, slowly to a gradual acceptance and realisation that such an illness would encompass all my adult life. I have lived, in effect, a life of deceit, of putting on a brave face, smiling when I felt like howling, standing and talking to others when I wanted to be lying in a darkened room, alone with my pain, pretending all was well when often I would wish myself dead, flushing the toilet to drown out the sounds of my vomiting. This is migraine.
Friendship, in its way, became a burden as I tried to act out being “well”, not in pain, not sensitised to sound, smell and light, not finding myself questioning where the nearest spot was where I could vomit without being seen or heard. The life of a migraineurs, however many attacks bestowed upon them, is so different an experience from that of people without the disease. For others a bad head cold or a few days battling ‘flue is worthy of complaint, days off work, and expected support from others. For someone who experiences migraine, especially frequently, little is said and certainly, from my experience, the hours I have spent lying in bed, in a darkened room, a container by the bedside in case I couldn’t make it to the bathroom when I needed to bring up … is anyone interested in such detail? Can anyone encompass such an illness if they haven’t experienced it first-hand?
This is, for those outside the experience, a silent, debilitating, all-encompassing experience which only time will, hopefully, eventually, resolve, leaving the sufferer exhausted, physically and mentally deplete and depressed. Strangely it is an illness where sufferers want to be left alone in silence, darkness and solitude. We don’t look to others to soothe our fevered brows, the greatest expectation being for a glass of iced water every hour or so.
Personally I found the pains of childbirth, without analgesics, so much easier to bear and experience than the frequent migraine attacks, weekly, daily, year in and year out. Unfortunately, for me, the relief I had from migraine during the second and third trimesters of pregnancies was short lived after the births. For migraine returned more frequently, with much more vehemence, much more prostration than ever before. Having three children did not serve me well in regard to the severity and frequency of migraine.
Family life and migraine attacks are not compatible with an easy life. We are denied so much of which others take for granted in terms of good health. We are stopped dead in our tracks, unexpectedly, attacks resulting from pleasurable excitement at life, along with the complexity of so many triggers resulting in our prostration. This level of daily uncertainty has to be born silently as we desperately realise another attack is going to ensure a changing of plans, of hopes, of desires. No one understands the strength we have to manufacture in order to accept the incapacity this illness brings to us.
To counteract the dilation of all the blood vessels in the body, a triptan works by contracting the vessels, which is most noticeable, initially, to the performance of the heart which, realising what is happening to it, pounds in my chest, telling me it is struggling to push blood through my system when all the blood vessels to it have contracted. Contracted blood vessels in the brain ease the pain, if only for a little while, the length of an attack determined to follow its course. For me, attacks last three days although prodrome, attack and postdrome usually last five days. During this time I wait, for that’s all one can do. I “manage” symptoms, for that’s all one can do. If some kind person asks if I am OK I silently point a gun to my head and pretend to shoot. No words need be spoken, the message is clear.
I find myself questioning whether, in time, I will have to abandon taking Imigran. The drug has only been tested in people up to the age of 65 so I am well out of the age range to take them, although having low blood pressure has enabled me to continue up until now. If I had high blood pressure then triptans would have become impossible to take. Whatever else it is too late for any “cure” to be within my lifetime. Maybe for my now adult daughter … I hope so.
Perhaps I should be grateful for small mercies? Certainly reading about, and listening to, other sufferers of migraine make me realise how stoical I have been over my adult lifetime, making little reference to them other than mention I feel “ill” and “I have to lie down for a while”. My learning to flush the toilet as I vomit protected the children from the knowledge of how vile the whole procedure was for me. After vomiting three times, tears on my face, I would have a vague understanding that, after a deep sleep, resolution was in progress.
“Mam’s got a headache” was the only reference to my disability. Mostly I swigged more and more pills, if only to keep me on my feet and continue my duties on the school run, ensure that someone was available for the children in a world where their Asperger father was not available to them. There was, I found early on, no meeting place between migraine, both the physical and mental illness, and Asperger Man who cannot encompass his own emotions and feelings, let alone those of others. Migraine is a lonesome occupation.
When I eventually arose from a sickening attack, weak and wearied by all that had gone before, I found little had been done in the house. The dishwasher had been run, but not emptied, the workbenches covered with food, untidiness and dirt apparently being invisible to my husband and the children. This I found very difficult to accommodate, wracking my tired and weakened brain with the question, “Do they care about the home I have created for them?” And, “Is there any point in my servicing their needs?”
Ironically the child who tried to take over my housewifely and motherly duties, attending to the needs of her two younger siblings, has her own battles with migraine. She bravely tells me, “They aren’t as bad as yours!” as if that is some kind of compensation for her lot. Isn’t that we, each and every one of us, pretends? It really doesn’t matter if there isn’t some kind of graph, some kind of scale, some kind of graduation to measure our suffering.
Migraine and its aftermath is a battle we have no hope of winning.
Have you shared your migraine story with us yet?