Why your migraines will get worse before you get better

Migraines everyday, constant

I’m sorry to say the overall outlook is not good for the average sufferer.

But there is hope.

The life sentence of migraines can be prevented. Migraines can be controlled. I’ll share why the outlook is poor for the majority and how you can avoid a lifetime of uncontrollable migraines.

According to the World Health Organisation, migraines are under diagnosed, under treated and poorly managed1. They typically get worse over time due to poor management, lack of knowledge and over-use or complications from medication.

Migraines are a debilitating, miserable and disabling disease. Migraineurs I’ve worked with have said:

“I’ve been to lots of different specialists trying to find a solution”

“I’ve tried all the options”

“I’ve had an MRI and done the precautionary scans”

“I’m sick of taking so much medicine and their side effects”

“Doctor’s don’t know what to do with me”

 “I wish the migraines would just go away”

According to research, over 80% of us are still seeking a better solution to our condition.2

Less than 25% of us are happy with our current doctor.3

The statistics are damning

Why are so few migraine sufferers getting good treatment?

There is still so much we don’t understand about migraines. The neurological behaviour, pathology and exact mechanism is not known. Given that so little is known about this condition, it’s no wonder doctors have a hard time treating it.

There is no cure for migraines. No magic drug. Doctors typically have a list of drugs that can potentially help. However, most migraine drugs are designed for other conditions. For example, over 4 million people use Topiramate, but Topiramate was designed to treat epilepsy. Its ability to assist some migraine sufferers was discovered as a secondary benefit.

4 hours

According to a WHO publication in the ATLAS Headache disorders, the average medical professional with an undergraduate degree in medicine receives just four hours of education in relation to headache disorders.2

That covers all headache disorders, not just migraine.

This qualification is what our doctors have and it’s the first place we go to for help with our migraines. In my experience, there was little my doctor could offer me aside from medications to dull the pain. There was no long term solution on offer.

My experience with my neurologist was similar. Neurologists specialize in head disorders and are more knowledgeable about different drugs, alternative therapies and general advice. However, I received little more than alternative drug options. And all the while my medical bills were sky-rocketing.

It’s important to note: neurologists are not necessarily migraine specialists. And migraine specialists aren’t necessarily neurologists. Neurologists deal with all different kind of neurological disorders of which migraine is just one of many.

Whilst some drugs from my neurologist did help they came at a cost that was both financial and physical. Strong prophylactic medications altered my personality altered reduced my energy levels.

At the same time I would go through bouts where my migraines were getting worse and more unpredictable. I increasingly became stressed, anxious and depressed.

What is your greatest fear?

As my migraine condition gradually deteriorated fears crept in. Fears

  • that you will never find a cure for your migraines
  • that you will have migraines for the rest of your life
  • that your migraines or the drugs you take are inflicting permanent damage
  • or that your migraines could get worse.

The unfortunate reality is that our migraines will likely get worse before they get better.

Here is why:

The physician is the first place we typically go after we experience our first few migraines, when the paracetamol, aspirin or ibuprofen just doesn’t cut it.

The physician does their best to help in providing more drug choices that are known to provide better relief than what we were using. So we take the prescriptions and start experimenting with the drugs and their effectiveness.

Many get referred to a neurologist or headache specialist not long after a few unsuccessful attempts with treatments. They often have a better understanding of migraines and other drug options available.

But the end result is often similar. We become reliant on painkillers to treat the migraines which occur randomly and progressively get worse over time. With more frequent migraines, comes greater medication use.

The downward spiral

All the drugs and physicians financially takes its toll. But emotionally the damage can be even worse. As migraines reach disruptive levels it can make you anxious. Not knowing when the next migraine will strike; the profound impact it starts taking on your relationships; its affect on your performance at work.

The migraines feed on this anxiety. The stress caused by the increasing attacks, coupled with the anxiety, then cause further migraines. The volume of medication your taking can put you at risk of rebound migraines caused by medication overuse. Different medications can lose their impact so you need to take more. The side effects increase.

Soon, you find yourself in a downward spiral. Fueled by our natural reactions of anxiety,  stress and medications. All begin to increase with every migraine attack and fuel the next one.

The physicians’ solution? My experience was more medications. Maybe also to see a psychiatrist to help you manage the anxiety and reactive depression caused by your worsening migraine condition.

At this stage you find yourself on a prophylactic (preventative) treatment which means you are taking drugs everyday to prevent what has now become chronic migraines.

This is an awful, dark place of depression, helplessness and pain. I know because I was there not long ago. Crawling out was one of the most difficult things I’ve ever done.

How can you avoid this?

The reason why this downward spiral occurs to a large extent is by sitting back and letting others take control of your problem.

The most important person on your healthcare team is you.

The easiest thing to do is to pay a doctor and take their pills without question. By doing this you are abdicating all your responsibility and putting yourself into auto-pilot. A mode where someone else is driving your health.

Doctors do their best, but in monthly consultation that lasts 15 to 30 minutes with more patients outside the door waiting… how deep into your condition can they really get?

This is why proactive and informed patients are healthier.

Enter the ‘engaged patient’

We are now in the era of the informed patient who is engaged with their health. This emerging level of patient engagement is what Leonard Kish recently called “the blockbuster drug” of the century.

Here is what the new ‘informed patient’ could look like:

Engaged Patient Table

Adapted from Health Affairs.4

This doesn’t mean you should stop seeing your doctor. Being an informed patient means switching off auto-pilot and making yourself a key player on your medical team.

After all, your health is your responsibility.

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Sources:

  1. World Health Organisation & Lifting the Burden. ATLAS of Headache Disorders And Resources in the World 2011.
  2. ‘MIA – Migraine Impact in Australia– survey by Stollznow Research, via national online panel, conducted in April 2011 amongst 507 Australians with migraine aged 18-64. The MIA survey was developed as a partnership initiative between Headache Australia and MSD. The survey was funded by MSD.
  3. Chronic Migraine in Amercia 2013 from survey conducted by Health Union. Accessed Dec, 2013. http://migraine.com/chronic-migraine-in-america-2013/?uuid=utm_source=weekly&utm_medium=email&utm_campaign=131120&uuid=8f6b1c7741dec3b458f052e28ea9d695
  4. Wicks, P. Hixson, J. The Patient Engagement Pill: Lessons From Epilepsy Health Affairs Blog. Accessed Dec, 2013. http://healthaffairs.org/blog/2013/02/07/the-patient-engagement-pill-lessons-from-epilepsy/

Photo Credit: Ignacio Sanz

3 thoughts on “Why your migraines will get worse before you get better

  1. I agree that being an engaged patient is important and when I look at your chart, I feel that I fall much more in the informed category (if not completely), but the fact remains that although I did see an improvement for a short time, I then not only slid back, I slid further into migraines than I had ever experienced previously. I keep a detailed journal, I research the best doctors, I’ve changed my habits, I’ve researched just about every option out there, I write and push my doctors on a regular basis. You make it sound like this is all within my control – if I’d just do something differently – but I don’t see what. Is there something I’m missing?

  2. Mara its great to hear that your on the informed side. Even within this segment there is large scope of understanding. Particular for our condition. It is easy to quickly read through that table to tick off those boxes. But how well do you really understand your condition?

    Perhaps the most important aspect in my experience is the personal health informatics or data.

    This will be different for each person, but for example: I can tell you Mondays are my worst days, my risk of a migraine attack increases by at least 50% vs the weekend. Then I gradually improve over the course of the week. Why? 2 reasons; First, disruption to my sleep cycle by 1-2 hours from the weekend is a migraine trigger so when I get up earlier on Monday morning for work it shocks my system. Second, fluorescent lights at work aggregate my already ‘sensitised’ migraine state which put me at risk of another attack. I went 14 years until I started using tools to track my condition. Now I’ve been able to uncover my key triggers, how they influenced my condition and I can see the impact my decisions have once I became aware of these triggers. Not just the broad strokes, but the actual % contributions.

    So answer your question, yes you are almost certainly missing something. How do you find out what it is? Track your condition daily where you can run analytics against it. i.e. using excel. If you don’t have a background in health informatics. Then MigrainePal is accepting a small group now to build such a tool to help provide this solution free for 2 months.

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