One of the blogs I follow online is called The Daily Headache, likewise, a fellow migraine sufferer who has been through it all for decades. During the month of June (Migraine Awareness month), Kerrie published a list of 30 questions about living with migraine that she has encouraged people to complete and share with family and friends. I thought I’d share mine with you…
-
My diagnosis is: chronic migraine with aura
-
My migraine attack frequency is: 2-4 migraine per week with 1-2 tension type headache per week. This is a great achievement, over the past 6 months they have been reduced from 6-7 migraine per week. My key performance is due to understanding my personal triggers including stress and anxiety and learning techniques on how to manage them.
-
I was diagnosed in: 2014 by a neurologist after many expensive medical tests and medication trials. I was suffering with almost daily migraine across the previous year. My migraines have been chronic now for almost 2 years.
-
My comorbid conditions include: none that I am aware.
-
I take 0 medications/supplements each day for prevention and 0 medications/supplements as an abortive medication. Over the past 28 years I have taken many different type and dosage of medications with no long-lasting effect but many multiple side effects. For the past 6 months, I have been taking time out and seeing if my body can heal without any strong medication. Apparently not.
-
My first migraine attack was: in 1987 as a hormonal migraine. Yes, there are many different types of migraines and migraineurs can be affected by several different types.
-
My most disabling migraine symptoms are: unilateral, very intense stabbing pain behind an eye (usually right) with throbbing pulsating pain on that same side of the head aggravated by any sort of movement accompanied with nausea and/or vomiting. Senses are heightened becoming highly sensitive to light, sound and smell, touch and taste. Light-headed, dizzy, vertigo. Body temperature from neck up increases and shoulders below decreases, I can shiver and be freezing one minute whilst my head is on fire and the next be sweating from overheating. Become very unsettled, cannot get comfortable whilst every single movement shoots immense pain through the head.
-
My strangest migraine symptoms are: Loss of communication abilities. Aphasia, trouble putting sentences together and/or finding words (highly frustrating and embarrassing in social circumstances). Cognitive impairment, living in an almost daily brain fog with decreased intelligence, forgetfulness and confusion with a lack of concentration. Being an air-head when you were once capable of holding down an intelligent conversation. Struggling to type, misspelling words, difficulty of head-hand coordination.
-
My biggest migraine triggers are: all sources of light, loud repetitive sound and strong lingering odours with anxiety and/or stress.
-
I know a migraine attack is coming on when: (usually) right eye becomes blurry with spotty vision, tight pressure in neck and rear of head, more sensitive to light, noise and smells than usual, become irritable with sleeping problems (insomnia, sleep apnea, nightmare paralysis, excessive tiredness), fatigue and exhaustion, repetitive yawning and strong food cravings.
-
The most frustrating part about having a migraine attack is: the loss of living. Spending days in immense pain unable to leave the bed, not knowing how long it will last and feeling extremely guilty about missing the things I should be doing instead of being on my sick-bed.
-
During a migraine attack, I worry most about: how will I ever be able to find employment when this occurs on a weekly basis. Who in their right mind would want to employ a sick person?
-
When I think about migraine between attacks, I think: how can I manage my triggers better? For example, reducing light and noise in the room, stocking up on more ice-packs. Research alternative treatments.
-
When I tell someone I have migraine, the response is usually: I know someone who gets migraines and they cured there’s by doing this and that, maybe you should try that. I appreciate the thoughts but I have heard them all and in this condition, have most likely tried them all too!
-
When someone tells me they have migraine, I think: do they know the distinction between a headache and a migraine, there is so much misrepresentation out there about headache and migraines. An occasional headache can be cured with food, short rest and a couple of over the counter painkillers. Whereas a migraine is a debilitating severe stabbing or throbbing head pain usually unilateral (but can be both sides or move between sides), with many additional side symptoms affecting the whole body such as nausea, vomiting, highly sensitive senses, temporary blindness, dizzy, vertigo, fainting and even stroke-like symptoms such as paralysis. These are just to name a few, for more symptoms please google, migraine phases or symptoms to become more aware.
-
When I see commercials about migraine treatments, I think: I’m glad someone can get relief. I’ll take note, research and discuss with my GP. These treatments are usually aimed at certain types of migraines which unfortunately, aren’t beneficial for every sufferer. Every person is different, therefore, everyone reacts differently to different treatments and medications. What works for one does not necessarily work for the next!
-
My best coping tools are: a dark quiet room, multiple ice packs, lots of water, access to a toilet and an emergency bucket. Most importantly to have my partner nearby for support when needed.
-
I find comfort in: knowing I am not alone there are support groups such as Chronic Migraine Awareness and many blogs such as The Daily Headache where fellow migraineurs discuss treatments and symptoms of this neurological disease.
-
I get angry when people say: have a Panadol, you’ll be fine.
-
I like it when people say: how can I help? Or, I’ll leave you alone so you can rest.
-
Something kind someone can do for me during a migraine attack is: let me rest in peace and quiet, every hour or two volunteer to bring in a fresh ice-pack, wet washer or more water.
-
The best thing(s) a doctor has ever said to me about migraine is: I’m yet to hear anything positive.
-
The hardest thing to accept about having migraine is: a loss of life.
-
Migraine has taught me: how important my support network of family and friends are, I will be forever grateful to them. I may be in pain but there will always be someone else worse off.
-
The quotation, motto, mantra, or scripture that gets me through an attack is: ‘Such is life’ (Ned Kelly).
-
If I could go back to the early days of my diagnosis, I would tell myself: to live life to the fullest because it’s going to get a lot harder…and whilst you’re enjoying that, keep daily journals and spend valuable time with your grandparents.
-
The people who support me most are: my partner, he has seen it all. He knows what to expect when it’s coming, how to help during an attack and how fragile I am days later whilst my body is recovering.
-
The thing I most wish people understood about migraine is: It’s not a headache! Migraine is a hereditary neurological disease with no known cure and which no two migraine sufferers are alike. Different medications and treatments have different side effects which affect every one different. It can take years to find the correct combination of medication, dosage and pain management plan that suits the individual. Popping a Panadol will not work for a migraine!
-
Migraine and Headache Awareness Month is important to me because: it raises awareness to the general public, family and friends and separates fact from fiction.
-
One more thing I’d like to say about life with migraine is: it is simply hell!
Life in a vacant haze 