Last week was my 3rd anniversary. Those 3 years seem like they’ve flown by and yet so much has happened. About a year into our marriage was when my illness first began. I remember we spent our first anniversary at a beautiful hotel and I kept trying to push through, ignoring the dizziness and off-balance feelings I was having. I can’t say there were a lot of fights, more like misunderstandings. I was going through so much inside my head, but my husband only saw what I projected on the outside.
Fear, depression, and anxiety accumulated with my gradual loss of independence. I was slowly unable to look at a computer long enough to do my job. I lost my ability to drive on the highway safely. My quick wit was replaced with an endless search for basic words in my foggy brain. I was miserable. I sat on the couch or in bed day after day and either watched tv or slept. What little bit I could tolerate screens I used to research anything and everything that could possibly be wrong with me. But I didn’t give up. The fact that I could be like this for the rest of my life was a scary thought, but I was determined to be the best sick person I could be.
I have been watching the Migraine World Summit with the intent of sharing some of the things I have found most interesting. One of the interviews I found most relatable was Teri Robert, a fellow migraine sufferer and advocate. Her interview was called “They Don’t Get It: Educating Friends and Family about Migraine”. This post had been on my heart for some time, so I thought I’d mesh her tips along with my own. Teri is all about being your own advocate. Since there are so few physicians experienced with migraine (most general medicine doctors only have 4 hours of migraine education), you often have to be the one putting yourself out there, asking about new treatments, and coming to your doctor with a laundry list of questions. Another point she makes is that your relationships become dramatically strained and by saying things like “ you don’t understand if you’ve never had a migraine” we’re really making the stigma worse. She points out that in fact, your spouse is typically confronting this migraine disease head on with you. And it’s true, because their lives are dramatically effected as well. Typically they want to understand, but they don’t know how. And on the other end, we feel so miserable that we tend to push them away. Did you know that dopamine drops during a migraine attack? That alone can leave you feeling isolated, depressed, and even anxious.
Below I’m sharing some of the tips that helped me get through the worst year of my life.
- Bring your spouse or family member into your doctor’s appointments – When things started to get really bad, my husband finally joined me at what was probably my 5th ENT appointment. He had been driving me to my VRT appointments every day for weeks, but had never actually gone into the appointment. I had been off of work for a few weeks and was only getting worse. I was surprised by how the doctor didn’t brush my questions off, like he had done before. Instead he was a little more attentive, and spoke to my husband clearly to explain the situation. Kind of a jerk, really, but at least I got some answers in that he fessed up my illness was out of his expertise. From then on, my husband came into every big appointment. When I first met my current neurotologist, my mom came as well. We had to pull in more chairs so everyone could attend. Did my doctor get annoyed? No way! He welcomed it. He loved answering their questions. It strangely seemed like a fun challenge for him. Something Teri mentions is that a good doctor will not mind this. They understand how much this effects your life. They also know a good support system for you will only help their treatments go further. If you can also get your spouse to read the migraine books that mean the most to you, that will help them even further understand your condition. After my husband read Heal Your Headache, he could better understand what was going on in my appointments.
- Be vocal – come to your appointments prepared. Write down a list of your symptoms, when they began and what you were doing. If you can keep a diary of your day to day symptoms and sum it up for the week, it’s very helpful for your doctor to review. I found apps like Migraine Buddy cumbersome when I had 24/7 symptoms, but they work for many. Writing short notes at the end of the day or week helped me to keep track. Don’t be afraid to ask your doctor WHY? Why are you prescribing this medication for me? What does it do? What can I expect? How come I’m not on the same medication my buddy from my migraine support group is on? This med isn’t working for me – what can I try next? These should all be questions your doctor is ready and willing to answer.On that same note, be vocal with your friends and family. And no, I don’t mean yell at them for calling your migraine a headache again. Explain your situation. Why you can’t go out to eat at a certain restaurant or attend an outdoor party when it’s 90 degrees and humid. I can’t count how many times I’ve asked someone to switch me seats because of a glare, or had to cancel plans with friends due to a thunderstorm. When you explain the situation, they begin to understand why it’s an issue. By explaining I don’t mean saying “I have a migraine again”. I mean “Hey, this storm that’s blowing in right now is triggering my x, y, and z symptoms, I just can’t make it. Barometric pressure drops/lightening/temperature changes/etc really seem to have this effect on me”. I know it seems like an extra effort, but if you want them to make the effort to understand your migraine, you have to put in a little bit too.
- Be your own advocate – do your research as much as you can. Read scientific journals and join all the support groups, even the ones you find a little crazy. See what others are doing and be curious (and not discouraged) about what helped them. No two people are exactly alike and your treatment plan may look completely different from someone else’s. I loved that Terri mentions to not judge other’s with migraine based on your own symptoms. Just because they can get away with eating chocolate all the time and you can’t doesn’t make them bad people or “not right”. Ok, maybe they’re kind of a bad person for rubbing it in your face…BUT we don’t need to spend any extra energy on tearing each other down. Treatment plans are really a guessing game for your physician as well. When you come prepared with research, you allow them to get a better idea of what you’re looking for from your treatment. My doctor had never heard of the “Heal Your Headache” diet, but looked at it and proclaimed it was endorsed and written by many of the physicians he studied carefully. Now that I’m reporting my own success with it, they’re talking about it with other patients. Your path to recovery is a two way street. Terri quotes C Everett Koop, “knowledge is the best prescription”.
- Ride into the danger zone – just like Kenny Loggins and those studs from Top Gun, you need to be willing to put yourself in uncomfortable situations. Terri mentions in her interview that she drove 8 hours to see a headache specialist. She exclaims she can’t imagine why people won’t drive an hour to see someone. We drove 16 hours to go to the Mayo for mine. It was totally worth it. Without putting myself out there, I would have never gotten a proper diagnosis and would probably still be laying in bed miserable. I realize this requires a substantial financial investment, but you need to make your health the top priority if you truly want to improve. Won’t you waste money if you keep regularly seeing the same doctor that’s not helping you versus a knowledgable doctor that would only require 1-2 visits a year? You’ll waste even more on treatments that don’t help! It makes me furious to think of the all the money I spent on pointless therapies while my previous doctors were just guessing at what I had.
- Find a migraine buddy – Your spouses and family should be there for you, but if I asked my husband or best friend about their opinion on beta blockers I’d be met with a big blank stare. It’s helpful to find someone going through the exact same thing and I was surprised by how many people were open to wanting to chat with me. All it took was one email or direct message and suddenly I’m participating in daily message chains with incredibly intelligent women who are passionate about their health. I have met so many wonderful new friends through VEDA, Migraine Strong, and even instagram. We discuss our appointments, new treatments, epic fails, recipes, and even relationships. Although we seem to all be on different treatment plans, it’s wonderful to be able to learn from each other and motivate each other through the tough times. Again, knowledge is power! I’m sure you already have a name that’s popped into your mind while reading this, but if you can’t think of anyone that you might want to connect with feel free to reach out to me on instagram messages or through my contact form!
I find the happier I can be with myself, the happier I am in my relationships. If you’re putting yourself first, you’ll in turn be able to give more to your spouse and your friends. It only took writing a blog for my parents to finally realize how bad things were for me! I joke, you really don’t have to start a blog, but just being more vocal is a start to getting somewhere. And look! My mom made me her own DIY dizziness oil blend for my upcoming travels. 🙂