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.
Don’t give up!
We are always discovering new things.
I frequently have patients tell me they have tried “everything”. Only once was this actually true. Only one patient I have ever seen had actually already tried everything I could think of. And we have several things in the development phase that will be new medications in 18 months to 3 years.
So…don’t give up. A “cure” is not on the threshold, but a means of control may well be available. If you have not tried more than one medication in combination, you should explore that option with your physician. And combine non-medication therapies with your medications as well.
There is much that can help.
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Thanks for the encouragement.
Kerrie
Thanks for a great post. I needed the inspiration.
I’ve had migraines w/aura since I was a kid, they transformed to CDH approx 5 years ago and got so bad I had to stop working three years ago this month.
In the last 5 years it feels like I’ve tried every treatment that exists from a month long inpatient stay to consultations with 2 intuitive healers.
I’ve been reading your blog off and on for the past few years and its given me some great ideas. Right now, however, I feel like I have no energy left to keep looking for solutions. I’m trying neurofeedback, which feels like my last hope. Does anyone here have any experiences, good or bad? All the reports I read seem to say its magic, but if it worked that great, we all would use it an be better. So far, 3 weeks into what is supposed to be a 10 week treatment, I am worse, not better.
Looking for help and inspiration.
Kelly
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Thanks for the kind words. I’m sorry you’re suffering so much.
No treatment is effective for everyone, but I know neurofeedback helps a lot of people. It doesn’t always eliminate the migraine, but it can make it more manageable.
Best of luck.
Kerrie
Hey I just found your blog, after having a really bad day, and looking for resources for migraine and personality changes.
I’ve had migraines with aura since I was 12 (37 now), about 2-3 a week. I’ve tried a bunch of different daily meds whose side effects were worse than my migraines. I use Maxalt for abortive and that works well most of the time, but I still have alot of aura and personality weirdness that is currently seriously negatively impacting my relationship.
Tonight I’m just angry about my partner’s comment that “you weren’t like this before I moved in”. *laugh* Oh but I was, it was just easier to hide it when you weren’t living here. I’m struggling with feeling guilty that I’m not a “better” person or that I didn’t “warn” her before we got serious.
I’ve decided to try to find a better neurologist. I’ve tried depakote, neurotonin, inderal, tricyclics and calcium channel blockers… all made migraines worse, or depressed me so bad I couldn’t function. I’d love to hear what else people are trying.
Or maybe I’d just like to hear that I’m not alone, because tonight it sure feels that way. 🙁
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You’re definitely not alone, but I’m sorry you’re suffering so much.
You’re not a bad person. It’s not your fault that you’re sick. As far as not letting her know the extent of your headaches, I think that’s typical. Most people with chronic headaches get so good at hiding it that they don’t even realize they’re doing it.
You might want to check out the Migrainepage forums — http://www.migrainepage.com/cgi-bin/dcforum/dcboard.cgi — where you can “talk” to many people who are going through the same thing. Everyone is kind and supportive and there’s a lot of great information shared on the forums. Even if you don’t want to comment, you’ll learn a lot just by lurking around.
I wish you the best of luck. I’m thinking of you.
Kerrie