Coping, Favorites, Treatment

Don’t Give Up on Finding a Treatment

In the last week, four people have told me that while they are comforted to know that other people have similar experiences with headaches and migraines, they are saddened to learn that their headaches may never go away. This is distressing as one goal for this blog is to encourage people to keep seeking relief.

It’s not as impossible as it seems. While I haven’t found a magic bullet for myself, the vast majority do find a successful treatment. Even after you feel like you’ve tried every possible treatment, you have probably only scratched the surface. There are so many drugs and drug combinations that no one has tried them all (including Paula Kamen and me).

Most folks with headache define success as having their headaches disappear. Doctors have a different understanding. A treatment is successful if a person’s headaches are reduced in frequency and intensity by 50%.

Don’t get angry yet. Many people become headache-free, some don’t. No matter how much education and knowledge a health care provider has, they aren’t mechanics. Unlike a car, uniform results aren’t possible. The human brain and body are too complex to expect that.

But you can get relief. Be aggressive, but give new meds time to work — which may be as long as three months. See a headache specialist, not just a neurologist. If he or she is dismissive, tells you your headaches are all your fault, or that there’s nothing left to try, see a new headache specialist. Take supplements that have shown some success for headaches (under the supervision of a doctor).

Visit a sleep specialist, even if you feel like your sleep is fine (advice that I need to follow myself). Getting good sleep can go a long way toward easing headaches. Talk to a nutritionist. Not necessarily about an elimination diet, but about giving your body the fuel it needs. Try massage and essential
oils. Take yoga classes that don’t focus on sweating and breathing hard, but on taking care of your body and nurturing yourself.

You will get discouraged. You will be exhausted. You will be frustrated. Keep trying; wherever “there” is for you, you’ll make it.

Chronic Migraine, Favorites, Treatment

You’re Probably Not Special

I say this with the utmost kindness — you’re probably not special. Being special in my case means I’m one of the fewer than 5% of people with intractable headaches. The odds are so in your favor that your headaches can be treated.

At the end of Nerve Stimulator Heartbreak, I wrote:

“Please don’t give up without exhausting your options. Once you think you’ve tried everything, ask about and research what other treatments or treatment combinations are available. You’ll be amazed by the possibilities.”

Headache specialist Dr. Christina Peterson highlighted that paragraph in her comments on the post and added:

“There really are so many options, and even if you think you have tried ‘everything,’ very few people really have. And we keep coming up with new stuff all the time.”

“Almost none of us are ‘curable,’ but very, very few of us are truly untreatable. Keep looking — you never know when something will work.”

I’m not defending my turf when I tell you that you aren’t special. I needed to get your attention to say this: Keep at it. Finding the right treatment for you can feel unbearably slow, but it’s nothing compared to spending your life in pain.

And think about this. Many doctors believe that the longer someone has headaches, the longer it will take to treat them. It has been likened to a car engine. At first the car starts just fine. Over time, the engine wears down and is no longer quick to turn over. Eventually the engine (or the pain control mechanism in your brain) stops turning on. When your brain’s mechanism gives out, your headaches become more frequent and less responsive to treatment.

All is not lost. Not even for me. Intractable does not mean untreatable; it means unruly or difficult (but not impossible) to treat.