Looking back over my life, I realize I must have always been having HM attacks; as a small child I had frequent migraines, with auras & scintillating scotoma, although only now do I understand what was probably happening. At the time I could not make my experience understood by my parents or the doctors. Indeed, most of my early memories involve throwing up, holding my head in agony, & being afraid of odd things I could see, such as moving ceilings & dolls that shimmered.
I moved to Cape Town, South Africa, about 14 years ago, & took to walking for miles along the beaches. I was lying down with a headache after one such walk when I had my first major attack, with total paralysis along the entire right side of my body. I was rushed off to hospital, & diagnosed with a minor stroke, or vascular assault, as they put it. There was no sign on the CAT scan of any brain damage, so I was released, armed with cortisone tablets & Beta Blockers to control high blood pressure. I felt out of touch with reality; all my will-power seemed to have drained away, although I regained the use of the right side of my body after a few weeks.
But the paralysis attacks continued & became more frequent. My GP thought the hospital had missed a small tumour in the brain, so I was sent back for more tests, including an MRI scan, which also showed nothing unusual. I underwent a battery of tests, which only proved that the blood vessels were perfectly clear, & that I should have been in excellent shape.
Eventually – some years later – a young Indian Neurologist, who spent over an hour with me, hit on the correct diagnosis. The first medications he prescribed caused a serious allergic reaction; my lower lip swelled up like a golf ball & my face sagged – right now I don’t recall what the drug was, but I truly thought I was going to die.
Currently I am taking Amitriptylene. I was prescribed 150mg a day, but have managed to cut it down to less than 25mg, which I have to take along with a Beta Blocker. I find I need to take the tablets at exactly the same time each day, or face a reversal.
I live about 35kms from where I work, & as I am concerned about having an attack while driving, I keep very strange hours, starting at 5am before the traffic becomes dense, & leaving at 2pm, before the “rush hour” starts. I would hate to cause an accident & possibly injure or kill someone else, but have no choice about having to work for my living.
To the boring details – in my case, it seems sticking to a rigid routine definitely helps. I eat twice a day, neither too much nor too little, as I feel the familiar creeping paralysis start up if I overeat, but also when I am hungry.
It also means early nights, always. I meditate from 7pm to 7,30pm & am asleep by 8 then it’s up for work at 3,45am. My diet is very repetitive, I suppose. I have always been vegetarian, & have lately become totally vegan – not for health reasons, but because I do not want to contribute to the suffering that animals have to endure at the hands of mankind.
My 2 daily meals consist of brown rice (crunchy, not cooked until the grain opens & goes soft) with a topping of some vegetable, usually with half an avocado & a scattering of nuts, a dash of soy sauce, & a drizzle of an interesting oil, such as olive oil made from young, green olives (tastes the way freshly-mown grass smells!), or else roasted sesame oil. I drink green jasmine tea, & 2 exactly cups of strong, black coffee each day – strangely, less coffee seems to have a really bad effect the attacks. And I find I can eat half a bar of good quality dark chocolate each day, which is always something to look forward to – but no alcohol at all.
Mornings are my best time, as the brain is clear & my vision relatively stable. I have very poor eyesight, with myopia & astigmatism, so I have 2 pairs of contact lenses with different prescriptions, as my vision changes frequently. At times I can see clearly with the right eye, but at others the world looks dark, fuzzy & unstable. When my left eye takes over as the affected one, I can’t risk driving as my right eye is the weaker one. Depth perception is also affected; I have often swerved to avoid lines or marks on the road which I have seen as three-dimensional objects, so I drive slowly & carefully, ready to pull over at the slightest twinge.
Despite everything, the whole HM process can be quite fascinating; the “visions” are often quite beautiful, with scintillating scotomas in gold & red, like some sort of weird script; there are often patterns & differing “textures” in the sky & in foliage. I am quite sure I must embarrass my companions when I stop to admire a wall that is swaying gently, or plants that are shooting off silver sparks that only I can see.
Generally, I work on the assumption that the ground is stable & flat, despite any apparent hollows, waves or vortices. I try to keep a sense of humour going, with references to my psychedelic brain, although I am not sure that this particularly inspires confidence. . . . .
Apart from the paralysis, I dread the aphasia, as I’m sure all other sufferers do. I forget common, everyday words like “scissors”, (although I can often accurately describe their function) & sometimes there is what I call a “conceptual ball” in my head regarding some idea or plan, yet not one word can I find to express it. I also find that some words come to me in one language only – usually NOT the one I am speaking at the time, so I end up speaking a gibberish of English, Spanish, German, Thai & who-knows what else, making my translation ability non-existent nowadays.
The paralysis can never be accurately predicted. Often my vision dims, without the paralysis setting in; but at other times I simply drop to the floor without warning – the cause of many bruises & bumps. I have woken in bed at night thinking that one of the dogs is under the covers with me, only to find that the lumpy object in my bed is my own “dead” right leg.
Sometimes the paralysis moves over my body like a wave, passing upwards from the right foot & causing me to slowly & hopefully gracefully collapse if I am sitting; sometimes it happens only to the right arm or leg, & I have occasionally experienced a sort of repetitive spasm in the right hand. There is a constant mild tremor in the fingers, & the entire right side of the body is definitely weaker than the left. I can really feel it when I sit & work at the computer. It does help to adjust the refresh rate of the screen to as fast as the product can be set, but even as I type now I can feel a sponginess in the right hand & leg.
I have done yoga all my life, but now I can only do very simple postures, nothing that involves bending forwards or inverting the body, as that is a sure way to bring on an attack.
I have been doing “energy work” for a few years, now. It is similar to Ki Qong & involves more visualization & tactile imaging than actual movement. It definitely helps the weaker side of the body. Also, grounding myself at the very onset of an attack sometimes works for me – standing barefoot in direct contact with the earth, & sending energy downwards through the soles of the feet like sending out imaginary roots. Perhaps other sufferers may benefit from trying it, but it seems each person has their own personal set of symptoms & what works for one may not work for another . I am still experimenting with hemi-synch sounds, to see whether this improves or worsens the condition, as it is supposed to equalize the functions of the 2 hemispheres of the brain.
I have often wondered whether having migraines is related to the “Esoteric”. Sensitives & psychics have a way of experiencing consensus reality very differently from what most us do, which leads me to question whose version the “real” one is – if either! And, while I don’t know of any studies on it, could Kundalini events be somehow involved? There have been occasions just before an attack, when I have felt a strong pressure moving like a snake up my spine, pushing upwards & through my nostrils quite painfully, just before the face begins to droop.
So many questions & so few answers from the medical world! It seems so wrong that HM sufferers should be prescribed drugs like Amitriptylene, which is an anti-depressant. I have never been depressed (without reason) & taking a drug off-label can actually cause the very symptoms it was designed to treat.
It seems like a hundred years ago that I used to work in broadcasting; I was trained as a classical musician, but of-course I am not able to pursue that now, quite apart from the fact that I’m getting too old. Listening to Beethoven or Busoni on earphones brings on that spaced-out feeling that I am careful to avoid, so I ration my listening carefully. Even writing has become a chore, now that the intervals of utter blankness no longer support that pleasurable sense of words flowing through me. Besides, I can sometimes look at a word in puzzled fascination, & not have any idea what it says. And traveling, my other great obsession, is out of the realm of the possible, too.
Still, I am grateful that it is not all as bad as it could be – I do not need a wheelchair like some poor sufferers do. I can still take long walks on Saturday mornings, as long as I’m home by about 3pm & spend the Sunday relaxing & recovering.
So let me end off here & wish all fellow sufferers well – be strong, there must be a way we can beat this, or at least manage it so that we can still live productive, fulfilled lives!
And thank you for the opportunity of joining this community, I feel less alone already!