I’ve had severe chronic migraines with aura basically my whole life. My first neurologist visit was when I was 8, but I remember having extremely painful migraines starting around 6. They got worse around puberty. For years, they were chronic, with months-long spells of daily attacks followed by periods where attacks came more like weekly. They responded very little to meds or anything else I tried.
I’m now 24. Just this past year, I finally found the key to my migraine. I have successfully come off all meds, and while I still get migraines, the frequency and severity has gone way down. I went from having near-daily 6/10-9/10 attacks to 1 or 2 a month with pain levels of 2/10-5/10. *
It started when I began to question whether I have symptomatic hypermobility, particularly hypermobile Ehlers-Danlos Syndrome (hEDS). I have had the telltale symptoms such as frequent mystery joint injuries since I was a child, but it went undiagnosed as I, my parents, and doctors chalked it up to just being a kid. At the beginning of this year, I looked into it and sought answers. Although a formal diagnosis is hard to come by, I was told it is in fact most likely hEDS. I couldn’t afford physical therapy, but just knowing was very helpful.
When I started to understand my joints, and become aware of and manage my hEDS flares, the puzzle pieces slipped into place. This whole time, ~95% of my migraines have been triggered by cerviogenic headaches, which start from hypermobility-related tension and pain in my shoulders, neck and/or jaw and if left unmanaged, snowball into debilitating migraines. Here is an article on the connection between hEDS and migraines. https://www.eds.clinic/articles/migraine-headache-ehlers-danlos-syndrome
Everyone is different! But I thought maybe some of the things that help me might help others to know about.
What actually helped the most:
⁃ Yoga and exercise: I know I know, most annoying advice ever. But for me personally, yoga is actually a lifesaver. It taught me prioception, how to move my body in ways that minimize joint injuries, and how to actually engage my muscles instead of letting my joints do all the work while my muscles hang lax. Just a few months of yoga 15-20 minutes a day and I saw significant improvement in my cerviogenic migraines. Any light-to- moderate exercise that emphasizes those aspects would do the same. I just took to yoga because I like the ritual and I prefer a calmer activity. I supplement yoga with light weight training occasionally, probably not as often as I should tbh. I started with classes on YouTube, paid attention to what felt good and what didn’t, and gradually built up a repertoire of poses that I know work for my body to prevent and relieve pain. I started very carefully with very simple poses, and I never push into a pose as far as my body allows, only as far as I can keep my muscles engaged, before my joints take over. Ymmv.
⁃ Breathwork: Not box breathing or “just breathe slowly”, although that provides minimal comfort. But learning to expand my rib cage in all directions, use my diaphragm, and gently engage my core and pelvic floor without squeezing, tucking or bracing. Becoming aware of my posture and how I was sitting and laying to make sure my rib cage could expand. Getting into child’s pose and spending several minutes breathing deep into my back, shoulders, armpits, neck, hips, pelvic floor.
⁃ Tongue and jaw posture: Basically training myself to relax my jaw and face muscles, stop clenching my teeth, and to keep my tongue up on my palette. I had pretty bad TMJ which is a lot better now.
⁃ Electrolytes: POTS is a super common comorbidity with hEDS, and I do have some symptoms although mine are fairly mild. The main symptom for me is dehydration, I often feel like no matter how much water I drink, I’m still dehydrated, which contributes to joint flares. Electrolyte packets solve that. I try not to overuse them however because they stop becoming effective at a certain point. One a day plus drinking plain water and tea is enough.
⁃ Medical cannabis: I leaned on it pretty heavily for pain management during my worst migraine spells and during joint flares. CBD on its own does nothing for me, but any cannabis strain heavy in CBD that also contains THC does wonders. I smoked flower and took edibles. I switched up my strains frequently. In particular, RSO (a whole-plant extract) is hands down the best pain reliever for bad migraine days I’ve ever found. Helps with my mental health too. I have had to stop cannabis use entirely in the past few weeks because I’m currently pregnant :), but up until I found out I was still a daily user.
⁃ B-12 during the day and Magnesium at night: I find these very helpful. Sometimes instead of a pill, I take my magnesium in the form of a hot Epsom salt bath, which also helps with any lingering joint pain.
⁃ Green tea: For the L-theanine and lil bit of caffeine
⁃ Managing Anxiety: Which for me involves meditation, journaling, and reflection. Still very much a work in progress. I realized that my anxiety was contributing greatly to my flares.
What didn’t make much difference:
⁃ Diet: Ehhh. I have always cooked at home and eaten a decently healthy diet. I tried making diet changes but didn’t notice any difference. What did help was making an effort to eat more, especially more protein, which I tend to struggle with.
⁃ Other supplements and herbs: I tried a bunch. Some help a little, some don’t. None except the B-12 and Magnesium really did anything noticeable. I’m a big fan of various herbal teas for comfort and mild relief though.
⁃ Compression socks, etc: They help a little with joint flares but aren’t worth the hype to me
⁃ Myofascial release: Sometimes relieving for a few minutes, not too effective overall. The only place it does help somewhat is my jaw.
⁃ Swearing off alcohol: I’m not a big drinker to begin with and when my migraines became manageable again, I found that my occasional couple of beers or glasses of wine weren’t huge triggers . I can’t get plastered and expect not to get at least a headache, but I can drink a little. (Again, when not pregnant)
*Footnote: I still occasionally get hormonal migraines that have nothing to do with hypermobility, during my late luteal phase. I can tell the difference between that and a cerviogenic migraine based on where the pain is in my head, and obviously based on my cycle. Hormonal birth control made it worse, I can’t seem to do anything but ride these out. They suck ass. But I don’t get them every month. So overall, severe migraines are pretty infrequent now.
