Jay L.
Exmouth, Devon, United Kingdom
- Most Predictable Trigger: Weather
- Weirdest Migraine Symptom: Loss of speech
- Best Migraine Friend: My partner
- Most Amusing Pain Distraction:My partner telling me stories about anything, and continuing whilst I am crying, yelling, fighting for words, throwing up or fading out.
How and when did you first get diagnosed with Migraine? Any specific type?
I had my first migraine experience after the birth of my first child. I thought I had a brain tumour or a bleed on the brain, something really serious. I had never had this kind of pain before.
A doctor called at the house and prescribed pethedine and laughed. "Your not dying woman, its only a headache!"
I have since been diagnosed with Hemiplegic Migraine. Symptoms similar to stroke but from which you recover.
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What lifestyle changes have you made to help prevent Migraine attacks?
I try not to as the migraine tends to make them for me, anyway. But I avoid environments that trigger attacks where I can.
At work I was allowed to use an unused office to lie in the dark, and people used to drive me home or book me into a hotel if that was not possible.
What was the turning point in your Migraine Journey?
I was prescribed triptans which worked well to start with, until I took Imigran and had an episode similar to a heart attack and was taken to hospital. I was put on an adrenaline impeller and kept in. It was frightening because I couldn't speak or move.
I was then prescribed various over the counter medicines with limited success. Acupuncture worked for a while in combination with another triptan. Later it was found I had a small PFO (patent foramen ovale), a little hole in the heart. At the time studies suggested that closure of the hole could help prevent migraine, but trials appeared inconclusive and my doctor did not pursue.
Who has been the biggest help to you on your Migraine Journey, and how?
My partner. Just by being calm and really listening to me, noting what I need and not panicking. Allowing me time to get myself back together. And, particularly in hospital, fighting in my corner in respect of treatments when I have been unable to do so myself.
What is the most surprising thing you have learned about Migraine during your Journey?
That it is possible to manage and operate in life. Yes, migraine knocks you off your feet and the recovery period can be equally disabling, but I see it as a war. I win some battles, I lose some. But I will prevail overall.
What's your advice to someone else living with Migraine?
Be kind to yourself. This is not a weakness of spirit, or an inability or desire to pull yourself together. It's OK to be vulnerable and admit that a migraine attack is exactly that, an attack on your person.
In some ways it's similar to being mugged. It involves anxiety, fear, violence, pain, loss (speech, sight, lunch!) and it leaves you exhausted and angry. If you are mugged people give you support, sympathy and space, and it is ok to expect, require, and, if necessary, demand those things from others when you have a migraine or know one is coming.
You are your priority. Migraine is a disease. It is not just a headache.
What's the next step on your Migraine Journey?
To keep going and explore all available options. Continue taking Topiramate, avoiding wine and beer, and continuing with avoiding chocolate and citrus fruits. I'd also like to add magnesium to my diet.
I drink tea and coffee, but I'd like to reduce caffeine and intersperse with decaf and herbal versions. Also, I'd like to try B2 vitamin (Riboflavin) which is supposed to help prevent migraine. Believing prevention is better than cure I have started also taking 5 HTP which is supposed to help prevent chronic headaches and migraines.
