What I've Learned From Having Chronic Migraine - for Better or for Worse

1. Migraineurs will do anything, anything, to get control of their brains back, even if it sounds stupid and unlikely to help. We're desperate for help. We're oftentimes suckers, too.

2. Having pets doesn't cure your migraine disease, but it helps to have a furry friend to cuddle and shed tears on from time to time. Also, research shows that having pets helps to lower blood pressure - yours, and theirs, by petting. The Healthy Benefits of Pets

3. The only people who are going to understand you completely are those also living with chronic illness. Caretakers included.

4. You'll discover who your true friends are, when they try to understand and educate themselves on your disorder as well, and offer an ear instead of medical advice that they are not qualified to give, nor have done the research on as well as you probably have.

5. Some days it's going to be all about your disease's control over you, not the other way around.

6. Other people are going to get tired of hearing about it, but you must first and foremost be your own advocate. Don't expect others to leap to your defense, especially employers. However, patient advocates can and will help you in your time of need, if you're too tired or confused to pursue other avenues.

7. You haven't run out of options. You're just tired of being disappointed by the previous options that failed you. If a doctor tells you that you're out of options, it's easy to believe it. After all, we pay them for their expertise even when ours might be greater. Sometimes we benefit from resources we can stand on to reassure ourselves and to prove to others that yes there is too something else to try even if a doctor tells us it's Topamax and Imitrex or nothing. (Thank yous to Parin for the addendum!)

8. It's easy to feel angry when your body makes you feel like you've been on a 15 day bender, but remember that other people have to put up with you too. Expecting people to fairly (note, I said fairly) accommodate you when you're at your worst is reasonable, so extend some of that courtesy back to those who have to pick up your slack if you need to miss work or other functions. I know this is hard to do, it's a personal struggle of my own.

9. Your spouse is a person too. He/she has needs, wants, and dreams of their own. Don't neglect them, and recognize that they are their own self and listen to them.

10. Some days you have to negotiate, not only with yourself, but with your spouse, too. Marriage is kind of like that, anyway.

11. Don't take on more than you can handle in any given day. If you are feeling fine, set up one or two tasks that you can reasonably finish without aggravating your condition or setting off an attack. If you find another task on your list after those, try it out and see if you can go for it. Unless you really need clean underwear today, that laundry isn't going anywhere, and neither are the dishes.

12. You're going to disappoint some people. It happens. Let go, forgive yourself, and move on if you have to. Your disease is not your fault, and if someone truly loves you they won't harbor resentment.

13. Naps are apparently for people who don't have a sleep trigger, and a rigid sleep schedule really does help...But it's a risk some of us are willing to take, especially if it means cuddles with sleepy cats. But in the event of an attack, get that rest!

14. When your bathroom looks like your local pharmacy, it's OK to laugh at yourself.

15. Your cats are going to sit next to you while your head is bent over the toilet whether you like it or not. And the closer they are to you, the better, in their opinion.

16. Research everything you possibly can, and recognize that not everything you read is going to be solid or truthful, or realistic for everyone with the same disease. Learn that there is a lot of bad information out there, and some of it is going to come from people who are also migraineurs.

17. Not everyone responds to the same triggers, medications, or other therapies. Migraine is not a cookie-cutter disease, which is why we try everything. Some people can stop drinking soda and their migraines may go away, while others need soda to help relieve a migraine. Some people can take naproxen or excedrin to relieve their migraine, while others cannot take it in fear of rebound, or Medication Overuse Headache.

18. Migraineurs have been falsely accused of having "histrionic" personalities, and we've been told that we need to "slow down" or "relax". If they had chronic migraine on a waffling pain scale of 7-10/10, they'd freak out too, and perhaps would not be so quick to judge. It's hard to do, but understand that they don't understand.

19. Medications are going to mess with you, but it's important to note that it can sometimes take up to 3 months before one knows whether that medication is right for chronic treatment purposes. But know yourself and your limits, what you might be able to put up with is not what someone else would. Make sure you know what you're taking and what it might interact with. We all make mistakes. I'll never take Xanax with Keppra again.

20. It's OK to think about killing yourself, we all do it from time to time (it's a normal human thought process, yet for the majority of people, it's brief and harmless). But migraine takes you to the brink of madness and then yanks you back again, constantly removing you from your comfort zone and pushing your boundaries of what is considered "normal" behavior in the face of disease. If you suspect you have depression, don't be afraid to ask questions or seek help whether it's from a psychiatrist, a counselor, or an online community of like individuals.