#invisibleillness week: Advice to those with #migraine brain pain

I am blogging for National Invisible Illness Awareness Week. The topic for today: just one bit of advice you would give to someone with a recent diagnosis.

When it comes to chronic migraines my advice would to be proactive and aggressive with your treatment. When you have episodic migraines they are well managed but then while they go into that process of becoming chronic we become well aware they are not. However, we do not know what to do about it. We often do not have that much knowledge of migraines at that point because we did not need to know that much.

The biggest mistake we often make is that we believe our doctors, or neurologists, when they say 'this preventative will reduce the frequency or intensity of your migraines'. They neglect to say it may do nothing at all and you may have to try many more to get any effect. They neglect to say when you do find one that does anything at all it may only last for a few years and then fade off. They certainly neglect to mention that preventatives At Best have a fifty percent reduction rate with migraines, and very rarely do we see Best. So often, we remain chronic. They definitely neglect to say that. So we have this assumption they will give us an effective medication and we will go back to having episodic, manageable migraines. Only to find out that is not true. Only to find out that we cannot even take the medications to treat the migraines we actually get often because there is a defined limit on the amount of those medications we can take in a week, no matter the type... meaning many migraines must be simply endured.



What does that mean? It means in the beginning, right when your migraines go chronic, if not even before when they are high episodic be very aggressive with your treatment. Do not be afraid to research on your own. Do not be afraid to try as many alternative treatments as you can like biofeedback and meditation. Ask about lifestyle changes you can make right away and make a plan to achieve those goals over time, because trust me, some of them can be very difficult at the daily migraine stage. Do a migraine diary that thoroughly tracks your migraines, including food triggers, because this will become more difficult the more migraines you have... but eliminating some of those hard to find triggers can be beneficial. My advice is try to approach chronic migraines on many platforms and angles because just medication rarely cuts it.

When you are high episodic you should already be aware of preventatives, but the fact is some of us go on them very late, which is also not good. Being on them as soon as your migraines get into that regularly monthly range is a good idea. I believe they recommend at even over three a month. I was not put on them until around ten a month. So early treatment is better treatment. However, there are few preventatives that are classed as being moderately effective to be honest. That would be those with the best case scenario of 50% reduction to frequency. And I have rarely encountered anyone who achieved that success rate. It does happen though. However, people also have success with exercise, diet changes, trigger management, biofeedback and mediation and many things combined. Trying to find the combo though is a lot of work, so the earlier the better.


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