The Next Steps after a Migraine Diagnosis

1. See a specialist headache / migraine doctor

All too often people with suspected migraine are either only treated by their primary care doctor, or referred to a general neurologist. This was definitely my experience. I battled with my primary care doctor for months with him suggesting my symptoms were anxiety when I knew they were not. Part of the 'battle' was that, at that time, I was actually having migraine without headache. And my GP wasn't aware that this was possible.

Then I finally got a referral to a neurologist who told me I had vestibular migraine, handed me a generic set of physiotherapy exercises and discharged me. Yes, on my first and only appointment!

My next move was to do a lot of research on specialist doctors for vestibular migraine. I eventually found a leading specialist who transformed my care. As well as running tests to rule out other conditions, she referred me to another specialist headache doctor as I had started to experience head pain too and referred me to a physiotherapist.

So, I would suggest making sure that you are seeing the right doctor. It sounds basic, but is so important. They should have experience of treating migraine and have that as their speciality. Those doctors will have the best knowledge on treatment plans and the new treatment options for migraine, and for your form of migraine in particular.

2. Track your symptoms and migraine attacks

Most headache clinics ask their patients to track their symptoms and pain level (as well as other symptoms such as nausea and dizziness) so they can assess fluctuations and see how different medications and treatments work for you.

Some clinics provide symptom tracker forms, but if yours doesn't then you may like to try something like the Headache Tracking Journal. It has lots of sections for your medications / supplements, food and hydration sleep and activity levels, amongst other areas. Perfect for having all your info in one place!

3. Read up on migraine

Personally I would resist doing a ton of googling for 'cures' and stick to information on managing migraine from reputable sources that are approved by doctors. There is so much information out there that is plain odd or suspect. I read recently that putting cinnamon on your forehead would cure you . . .

One of the best online resources is the Migraine Trust, which has so much information on everything from medication to exercise to lifestyle measures. For vestibular migraine, the Vestibular Disorders Association (VeDA) is brilliant and I refer to it over and over again.

In terms of books, there are many great ones out there but many are a little out-dated given the new advances with medications and injectibles in recent years. Some that I like, and are good just after a diagnosis, are:

The Migraine Brain, Carolyn Bernstein

50 things you can do today to manage migraines, Wendy Green

Heal your Headache, David Buchholz

Victory over Vestibular Migraine, Shin Beh

4. Physiotherapy / physical therapy

Seeing a physiotherapist / physical therapist can be useful in two different ways depending on the type of migraine you experience, and your personal circumstances. It is definitely worth asking your doctor for their thoughts on this.

Vestibular rehabilitation therapy (VRT)

This form of therapy can help those with vestibular migraine. It should be undertaken with a therapist who specialises in VRT. If you get given a generic set of exercises as I did, then I would consider seeing a different therapist. It should be tailored to your specific symptoms and needs, and be carefully paced to you as an individual.

Physiotherapist / physical therapist

I haven't heard too much about those living with migraine seeing a physiotherapist, and I do think it is under-rated as an approach. Regular moderate exercise has been found to be an effective way to reduce the frequency of attacks for some people.

Trouble is, when you have chronic migraine exercise may feel very daunting or trigger an attack. As the Migraine Trust sets out in a really good overview of exercise, there are certain ways to approach exercise that may help you if you wish to pursue it.

I found that seeing a physiotherapist was really beneficial in guiding me. We discussed all my symptoms, including those from POTS / dysautonomia, and worked out an exercise plan that would best suit me. I started by using a pedal exerciser as that didn't involve head movements, and then gradually built up to walking and other forms of exercise. I would really recommend a session or two to help you in the beginning.

5. Exercise

As already mentioned, exercise has been shown to reduce the frequency of attacks for some people. Having a chat with your doctor before you start a new exercise program is always recommended and they may suggest seeing a physiotherapist / physical therapist to help you out.

6. Occupational therapy / health

Another suggestion that I haven't seen mentioned too often. Occupational therapists can be so helpful in your next steps after a migraine diagnosis if your symptoms are making certain tasks or activities a challenge to complete. They can help with activities at home or work, or in an educational setting.

7. Helpful products

I think most of us with migraine end up with our own 'migraine kit' of helpful products to help us manage symptoms. All these are non-drug options that hopefully will help reduce pain and other symptoms.

Headache hat - a wearable 'hat' that has engineered ice to help you target that 'hot head' feeling.

Koldtec ice towel - also with engineered ice, you wrap around your head (and I use mine for my cranky knee too!).

4 head stick - my first migraine product(!) and very affordable. It uses menthol to help block pain signals to the brain.

Avulux glasses - stylish glasses with technology that filters blue, orange and red light, that can help those with migraine.

• You can get $25 off Avulux with the code throughthefibrofog (affiliate code)

Blisslets nausea relief bands - amazing as a non-drug treatment for nausea (and they are so pretty nobody will know they are for a medical reason!)

• Blisslets has kindly given me a code so that my readers can get 15% off with the code fibrofog (affiliate code)

8. Supplements

There are several supplements that are backed by research for use in helping to manage migraine, but always (always, always!!) check with your doctor before trying something new as it may contra-indicate with other medications you are on or not be advisable with other medical conditions.

The three main supplements are:

Magnesium

Riboflavin (B2)

CoQ10

9. Calming activities

Perhaps this is also an obvious, but it's also so important! I am lucky to have a doctor and medical team that talks a bit about restful and relaxing activities, but I know many doctors aren't so great on this.

Some ideas include meditation, gentle yoga, crafts, listening to audio books (maybe not horror or thrillers though!), light gardening, journalling and being in nature.

There are some more suggestions in my book Living well with Fibromyalgia, which has lots of ideas for helping to manage all chronic illness conditions and not just migraine.

I hope these next steps after a migraine diagnosis are helpful. Always remember that you are an individual with migraine and treatment options should be geared towards your specific symptoms, form of migraine and any other medical conditions.

Related posts:

5 positive aspects of Botox for chronic migraine

Please follow the advice of your doctor as to all medical treatments, supplements and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.