Have you tried...?
A lifetime of helpful people suggesting how to manage my migraines
I can’t tell you how many times I have heard some helpful soul come to me with, “have you tried X?” I tried to be gracious and grateful that the person thought enough of me and my migraines to suggest things they have heard or tried themselves. Still, the less rational part of me wants to tell them, “of course! I have tried x! I am not an idiot, I am an expert on my ailments and devour every new study and want to get better.” But, my migraines may not even be migraines. They might be a variant of MS or something completely different. Why do I know this? Because (let me be clear…) IT IS NOT A HEADACHE PROBLEM FOR ME.
Headaches are sometimes there and sometimes not. I get auras, stroke-like symptoms of weakness in my arms, legs, face, mouth, tongue, etc., I have brain fog, I have uncontrollable mood swings, phantom tastes and smells, and the list goes on. Headache is NOT the biggies. I do get headaches sometimes and sometimes those headaches send me to bed, but they are not the issue. Did you get the point this time? Headaches are NOT my issue.
My mom used to love to send me Xerox copies and torn-out pages from magazines telling me about the latest thing she read. Sometimes the articles were actually very old. And I understand she wanted to help because she had had stress headaches throughout our teen years so she knew how much those hurt and wanted to help. What could have helped is advocating for me with the doctors when I was younger.
As I mentioned before, we tried all the big and little things, all the treatments from doctors, and no treatment has ever made a big enough dent to justify sticking with it.
Let me count the things I have tried…
Biofeedback - I have, through meditative practices, breathed and focused on the blood flow through my body. Focusing on creating heat between my palms. I got good at creating the heat, but it never changed a thing before, during, or after an aura.
Reflexology - I appear to be “wired funny.” I didn’t know that I was neurodivergent most of my life. But, I would tell people I was wired funny. The first time someone did reiki on me it made things worse. I felt terrible because what they thought would work for most people had the opposite effect on me. It took me over a decade to try that again. My mom had read some sort of article about reflexology on migraines and when I was in the throws of a terrible one in Minnesota, my mom, an untrained person, thought she could help. Once again, she hit something that made things worse. I ended up throwing up for an hour after that.
Acupuncture - I have even tried this in the throws of an aura, and while it was nice to do nothing for 30 minutes, it didn’t change how my aura behaved.
Nitroglycerine - Well, I have already told you how well that went…
Caffeine - I have tried cutting caffeine completely for more than six months and nothing changed. I started using caffeine as a medicine when I do get headaches, but with ADHD, caffeine doesn’t do what it does for a neurotypical brain. I can nap right after a cup of coffee.
Diets - I have removed and added and excluded nearly everything in the world. I do know that artificial sweeteners (even the “natural” ones) don’t help and can make things worse. I have been there and done that many times over. When I do end up with migraine sickness (headache, nausea, general feeling crappy), I do know that animal protein is the only thing that helps me start to feel better, or at least feel better for a bit. So, when I tried to be a vegetarian, things got worse.
Meditation - I have something called Aphantasia, which means when I close my eyes and attempt to “visualize” something, I see nothing. I see the insides of my eyelids. I had no idea people actually see things when they are asked to visualize. I can remember things and somewhere in the back of my memory sometimes an image is what I remember, but ask me to visualize anything… it just doesn’t happen. I thought for years that I was “doing something wrong” when meditating. I could never seem to get to any pictures. I took a six-week meditation course and still struggled to get anything other than memories of something similar. Instead, I try to tell myself a story and focus on what I feel, hear, smell, etc.. That said, meditation has never helped prevent, stop, or relieve my issues.
Medications - There are too many to list but I will talk about three and why I finally decided that migraine meds were not for me. Imitrex someone suggested to me when I was working at the bank and going home so much because of migraines. I started with the injectable. When the aura hit I stabbed the imitrex into my thigh. It felt like my brain was melting, and after that stopped, I got the aura right back. I tried it two more times, to be sure I didn’t do something incorrectly the first time, and the same things happened. Nortriptyline and Topomax. Nortriptyline is an anti-depressant and is known for its off-label use for reducing migraines. It is supposed to reduce the frequency of “headaches.” Topomax is an anti-seizure medicine, used for epileptics, that is supposed to help stop the brain from misfiring. Each of these medicines did not reduce the number of migraine auras and symptoms I had. Instead, it simply added on side effects. It took me 18 months to come completely off the last two and I am so leery of repeating this process, I have swung away from medications completely.
Physical Therapy - I was pointed to a headache-focused physical therapist and while they helped me with vertigo that was related to my inner ear, it never stopped my auras. I went to three separate therapists, spent thousands of dollars at each, and the only thing it “fixed” was my inner ear vertigo. (I note specifically the inner ear because I still have vertigo from my neck and jaw.)
TMJ Treatment - I did TMJ treatment a few years ago and it didn’t make a difference. But, through the physical therapists, I met a different dentist who has had more success with TMJ treatments. I learned how the jaw sits and how that can impact the inner ear, how the head sits, and cause inflammation. So, I shelled out more money and spent months with a splint in my mouth 24/7. Things didn’t get better with my migraines, but they didn’t get worse. My vertigo related to my jaw dropped significantly so I feel like something was happening.
Braces…again - The first time I had braces ( from age 10 to 14) the dentist took four teeth and may have caused my TMJ by making my mouth so small and attempting to “fix a cross-bite.” So, my dentist sent me to a new orthodontist to adjust my face again. I am still in that and it is like being on a roller coaster. Some weeks it feels like we are getting better, and other weeks I feel awful and worry that it won’t help again.
Massage Therapy - I have spent the last 4 years going for massage therapy mostly for my upper body, neck, and head. I do feel better when I go on a regular basis, but has it changed anything? No.
This is only a smattering of the things I have tried to address and overcome my issues that, to the rest of the world, look like migraines. I am constantly looking at the research and every doctor I have seen keeps focusing on the headaches and NOT the symptoms. Still, I am hopeful that someday, someone will hear me, and instead of asking “have you tried…?” they say “let’s learn more about your symptoms.”
At once powerful, mystifying and obviously frustrating. Hoping that you find a clearer path...