Chronic Migraine Awareness

Written by Hana Lewis for Chronic Migraine Awareness, Inc.

Perhaps, like me, you’ve heard your neurologist say “it’s the way you’re made. You just have to learn to live with it.” I’ve seen their glazed expressions and even a shrug or two. Saying “I feel desperate” or “I have no quality of life” made little difference. So what can we do to take charge of this physical and emotional pain?

“Chronic migraine is in the top seven conditions for lifetime disability and yet nothing much is done about it” – Dr Andy Dowson

It took 30 years to officially diagnose my chronic migraine. According to the Migraine Trust, this puts me in just 2% of the world’s population. At my worst I experience 20+ migraine days a month, including tension, daily and ice pick headaches. 

I went to my first clinic at age 12 but it’s taken years of trial and error to put my story together.

Facing the ‘are you faking it?’

Migraine can have a huge impact on mental health. It’s cited as a top ‘excuse’ for missing work but only 1 in 5 managers consider this legitimate. It’s no surprise that people with migraine face the ‘faking it’ debate. I still worry someone will hear that I have migraines and presume that I’m not a capable, hard working person. Dr Young’s PLoS ONE study found that people with migraine can feel more stigmatised than people living with epilepsy.

• Feeling misunderstood: Friends might say “I’ve had my first migraine! I thought of you” but you somehow just feel more alone. Helping others to understand the reality of constantly daily pain can be difficult, so you shy away from talking about it for fear of seeming repetitive, 
• Keeping up appearances: One specialist told me that if I wore makeup and went to work, no one would think anything was wrong with me. I still think about this and what the intention of the statement really was, 
• The odd one out: Preventative tablets rarely agree with alcohol, so I started drinking less. A friend said to me, after a few drinks “you used to drink, are you sure you aren’t making these headaches up?” 
• Feeling self-conscious: If I feel hungry, I have to eat right away, with meals at set times. This can be difficult for people to understand, particularly if you plan your routine around meals, or have to eat during meetings. Asking friends and family to schedule dinners out around you can make you feel self conscious,
• Feeling belittled: It can be hard to keep going back to your GP. One of my referral letters suggested that I wasn’t in need of any treatment but they were referring me to satisfy my hypochondria,
• Spending time alone: Migraine can be isolating and have a big emotional impact. You miss out on things, or struggle to do something as simple as go for a walk. Ironically, migraine attacks can be triggered by any emotion, not just stress. Even joy can create pain. Many people with migraine suffer silently through events they’ve been looking forward to for months.
  

I try to remember that other people’s responses aren’t a reflection on me but more so a lack of understanding around what migraine really is and how seriously it can affect day to day life. It is a silent, hidden, long term health condition. 

Triggers and treatments:

1. Hormones: My migraine is hormonal, meaning I can suffer with head and stomach migraine for around half of the month. I was misdiagnosed with both polycystic ovaries and endometriosis. An IUD may be worth considering. The Mirena isn’t a miracle cure but it can tackle severe cyclic headaches. 
   
2. Medication:
   1. Painkillers: Dr Anne Macgregor explained that the migraine is a chemical reaction, like a wave, which needs to crash. This is why migraine can return more acutely after taking analgesics. Using Aspirin, rather than ibuprofen, can apparently reduce the likelihood of aftershocks. It’s important to avoid medication overuse, as too many painkillers can make your pain worse. 
   2. If you live in the UK ask your GP for Imigran (sumatripan) nasal spray, as they generally prescribe the tablet form for adults. This gave me a nasal headache. An injectable form is also now available. 
   3. Preventatives: I’ve tried five but each gave me significant side effects. Amitriptyline (blurred vision, weight gain and extreme sleepiness), Topirimate (weight loss and forgetfulness), Nortriptyline (night terrors), Propanalol (weight gain but the most successful) and Candestartan (daily headaches). It’s important to try and see what suits you,
   4. You may have heard of Aimovig  or Ajovy, medication designed entirely to treat migraine, by developing antibodies that neutralise / block calcitonin gene-related peptide (CGRP), a chemical in the brain that makes migraine sufferers sensitive to sound and light. 

3. Specialist treatments (via Neurology):

1. Nerve blockers: Steroids are injected into the back of the head. This had limited effect for me but has worked for others and was relatively painless,
2. Botox: To become eligible (15 or more migraine days a month), you may need to demonstrate that you’re able to reduce analgesics. I’m on my third round and see no major difference unfortunately,
3. MRI scan – My scan showed a Chiari 1 malformation. This is not uncommon but tightly packed areas of the brain can lead to high pressure headaches. 

4. Genetics – My mum would go to bed with a headache while my sister and I played in the cot. It’s no solution to know that genetics can play a part but at least we can learn from it.  Keep a headache diary. That will help to speed up diagnosis when you’re going to a headache clinic. 

3. Environment – Try to find and avoid your triggers: 
   1. Lighting: Limit phone use, use pendant light shades, consider adding a green tint to your PC and reduce contrast. I also have a unit around my desk to block light. Try Migraine Trust glasses, or ask your opticians to add a green tint to your prescription lenses.
   2. Stress: Get a good sleep routine and regular exercise,
   3. Diet: Dr McGregor also explained that certain foods don’t bring on a migraine but that the headache is already in progress and your body is craving the food. This was a useful myth to bust. Look out for foods that trigger your migraines. I recently cut out refined sugar and wheat and noticed an improvement. Check out migraine miracle for tips,
   4. Smells: strong perfumes or cleaning products can be hidden triggers,
   5. Heating: Going from extreme cold to heat can be a trigger. 

Alternative therapies:

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• Cefaly: An electronic device that treats the headache with small micro-pulses. I sadly fell into a small bracket of users whose pain increased but it has been a miracle worker for some. 
• Acupuncture: I visit a trained physio (DTR Clinic – Cardiff, UK) who treat migraine through pressure points. It’s a huge shame this isn’t recognised or available on the NHS. Policies like BHSF can help with treatment costs.
• Daith piercing: To relieve pressure, replicating the principle of acupuncture, 
• Arc4Health repairs damaged tissue with small pulses which aid release of Adenosine Triphosphate (ATP), through a device worn on your arm or leg, for three hours a day. The downside is that it looks like an electronic tag!
• Body Balance: A mixture of yoga, tai-chi and Pilates helps to reduce stress and muscle tension.
• Osteopathy – Manipulative therapy can help with pain and inflammation,
• Supplements can be effective as recommended by the Migraine Trust: Coenzyme Q10, Vitamin B12 and Riboflavin (I use a B complex). I also use Bio-kult Migrea probiotic. Feverfew (has also been known to help (this can interfere with other medications so check before use).

Other tips:

• Kool ‘N Soothe strips,
• Tiger balm or 4head,
• Weighted eye mask,
• Hopi Ear Candles,
• Ginger for nausea, 
• Online support groups. 

Getting Help

Don’t be afraid to keep asking. I waited 8 months for my latest clinic appointment and was told that ‘chronic conditions are not a priority.’ This can be disheartening when your whole life feels like it’s on hold. 

I had to find so many things out for myself. Migraine can make you feel completely desolated but there’s always hope. Find support at Chronic Migraine Awareness, Inc. 

*Disclaimer* The products discussed and/or endorsed in this article are the opinion of the author. Chronic Migraine Awareness, Inc. does not endorse products or services.