It took decades for me to receive a diagnosis of chronic migraine, hemiplegic phenotype, with severe aura. My symptoms include tinnitus, upset tummy, severe pins and needles, spreading numbness, hyperacusis, photophobia, reduced cognition, nausea,partial and total paralysis, and muscle weakness.They can be triggered by harsh lighting, strong smells (especially perfume), touch, sudden movements, loud noises, or chaotic environments.
Myfirst partial paralysis was in 1991. A few years later I started to experience daily periods of paralysis that left me unable to get out of bed, and had a host of complex symptoms including severe all-over body and head pain. I also experience frequent, daily stroke-like episodes, affecting half to three quarters of my body.
Understanding the origin
For years no one could give me an explanation for my symptoms, particularly paralysis. Finding out that whole body paralysis and back-of-head pain can be part of hemiplegic migraine, and that the pain can extend into the body was transformative in my understanding.
Recognising the symptom patterns and effects helped me understand how different parts of my mind and body worked at different times in a repeat pattern. I learnt there would be no possibility of changing the outcome when symptoms started. I also began to understand that there was a crucial relationship between paralysis and headache.
Lack of information
Most of the information on my condition focuses on treating the migraine headache, but for me the most challenging part of the condition is the aura symptoms, which are often not targeted. I would like to see research and treatments focusing on the biology of paralysis and see new, appropriate aids created that make a difference.
I need appointments to be by Zoom or phone and home visits to be available, as the normal clinical environment assaults my senses. A perfume-free and quiet, low light setting is best for essential examination.
The environment and physical contact cause me massive difficulty, and clinicians need to understand this to safely treat me. Keeping information clear and short can help with cognitive issues. Accepting and respecting my physical difficulties in accessing healthcare are essential for the relationship to work. Feeling heard is key to feeling supported.
What you need to know
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Severe hemiplegic chronic migraine is so much more than the migraine headache, and symptoms can be complex, debilitating, and relentless
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It can be helpful to explain to patients the origins of their symptoms so they can begin to understand their whole experience
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Sharing any new, relevant information with patients is important as there is little guidance on how to help and alleviate severe symptoms; so keep up to date and be willing to think outside the box
Education in practice
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How could you ensure that you provide compassion to anyone experiencing a rare condition like hemiplegic migraine?
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What could you do in your interactions with patients to avoid triggering a migraine attack?
