Step 1: You MUST identify your triggers. If you’re not 100% certain about your triggers, keep careful notes. Common triggers include foods, stress, sleep disruptions, environmental pressure changes, etc. so track all of those on a daily basis.
Step 2: Talk with a migraine specialist. You deserve to live pain-free and have migraines that are well-managed. More than 3 per month is unreasonable. I cannot emphasize this enough: the more you let your migraines go untreated, the worse they will get. Prioritize managing them!
Step 3: Experiment with medications. I had to try 90% of the things on the following list to find the combination that worked for me. Here’s the list of what I tried or heard of - it’s worth continuing to experiment until you can find the thing that works for you:
I call out of work starting at level 5. I haven’t gone above an 8 since starting Propranolol.
I got my very first migraine at the tender age of 13. I remember sitting in class and being VERY confused about why half of my vision was gone. Things got worse from there, and I spent the rest of the afternoon curled up in a ball, blocking my eyes from the light until my parents could come pick me up. Later a doctor would explain to me this was an “aura”, and it would become a monthly occurrence.
These menstrual migraines were brutal until I turned ~25. They’d knock me out for an entire day, unable to move, in too much pain to sleep, nauseous, in absolute misery. I remember once begging my Mom to shoot me to end the pain. Over time the pain diminished, until I was in my late 20s, when they “weren’t that bad”. No medication really seemed to help them anyway, so I just became accustomed to powering through them. I wouldn’t even skip work, just wear sunglasses indoors. I do not recommend doing this. Even if you only get a migraine 1-2x a month, it’s absolutely worth finding a medication or lifestyle change that helps. Eventually I figured out that Exedrin migraine relieved some of the headache pain (this stopped working after a few years).
Around 2014 I started getting more frequent migraines. At first they were very different from my menstrual migraines. I’d get light sensitivity, but no headache, and extreme nausea such that I would actually vomit. It took me nearly 2 years to realize they were migraines at all since I had never thrown up from a migraine before, and there was no headache. At first I actually thought I was getting food poisoning, despite the fact that we were all eating the same food and I was the only one having issues.
At first it would only happen on major hikes: multi-day treks in Yosemite, for example. And it wasn’t EVERY activity - I could weight-lift at the gym just fine, and gentle hikes were also ok. In 2018, I remember hoping that a 16-mile cross-country ski trip wouldn’t trigger a migraine (it did). That makes 4 years of not understanding what my triggers were.
Even after I figured out they were migraines, I had only gotten menstraul migraines up until that point and I didn’t understand WHY I was getting migraines on hikes. For about two years I assumed I just wasn’t drinking enough water, and the dehydration was my trigger. (In those days, I NEVER drank enough water, so it was very easy to believe that this was my trigger). For 6 months I’d diligently drain multiple liters on a hike, only to end up shivering in my closet at the end, laid low by another migraine.
FINALLY, around 2015, my brother pointed out the obvious: if I was finally drinking enough water, maybe dehydration wasn’t the trigger?
This was a HUGE turning point. This made me completely re-analyze all of my assumptions up to that point. Re-thinking the triggers made me question everything I thought I knew about my own migraines, and I started really really carefully tracking, and doing little “experiments” to try and disambiguate potentially confounding triggers. For example, I got migraines after every hike. I usually hike on sunny days, so was it bright sunlight? Was it squinting in the bright sunlight? Was it something about my sunglasses (which I’d only wear on hikes) or my sunhat? Or the backpack I’d carry? Or my neck position as I looked down at the trail? Was it the food I always ate on hikes? Was it the long drive I typically took before a hike? Was it the altitude change driving to/from a hike?
It was not bright sunlight - hiking on a cloudy day, or in the evening would also trigger a migraine. I could wear sunglasses, a hat, and a scarf around my face to block the sun and minimize squinting and still get a migraine. And I could sit at home and squint and not get a migraine. Sunglasses, hat, backback or not I’d get a migraine on a hike. I have the same neck position while walking on a flat surface and I wouldn’t get a migraine. Doing an intense hike in my neighborhood (no altitude change, no drive) still triggered a migraine, a relaxed hike in Colorado did not. Eating my “hiking snacks” at home: no migraine. Not eating hiking snacks on a hike: migraine.
After about 2 years of careful notes and tracking, it was clear that my trigger was serious cardio activity, including major hikes. Even walking the steep hill home from campus would trigger a migraine. A very short burst of running (like one block to catch a bus) would trigger a migraine.
When I started tracking, it became horrifyingly clear how many migraines I was having: 9 per month. With each migraine lasting 2-3 days, this was clearly unsustainable. I finally spoke with a migraine specialist, who ruled out other neurological issues. We discussed lifestyle changes and medication options. For some reason, I was always really hesitant to take any medication to treat my migraines. I preferred to white knuckle it through the pain, and hope it would magically go away each time (it never did). He suggested beta blockers (which sounded scary). I said no, because they have a common side effect of lowering your blood pressure. I already blacked out every time I stood up - which at the time I thought was caused by low blood pressure - so I opted to not take those. The other option was Topiramate, an anti-seizure medication which can sometimes be effective for migraines. A typical dose for topiramate is something like 3 pills in the morning and 3 at night, which at the time really freaked me out. I refused it. Since lifestyle changes had brought me down from 9 per month to 5 per month, I convinced myself I didn’t need any medication.
In the summer of 2019 I had a summer internship, where I had to work a regular 9-5 job in an office. The need to show up and collaborate on a daily basis really highlighted my disability - I was barely able to fulfill this minimal obligation because I got so many migraines. I made another appointment with a different migraine specialist. I got an MRI to rule out any tumours or other issues (scans were clear), and was prescribed Cymbalta, an old type of antidrepressent which can sometimes work for migraines. The side effects at first were brutal - I had a headache non-stop, couldn’t sleep, had horrible nightmares, and just felt awful for about 3 weeks. But I was desperate, so I pushed through. This medication worked ok for maybe 8 months. I was able to slowly ramp up my gym activities, and got to the point where a gentle walk to the beach would not trigger a migraine. I was able to slowly walk around campus (but got a handicapped parking permit to make it easier to get to work since walking across hilly campus in time to attend my classes would still trigger a migraine).
Then COVID hit in March of 2020, and all of the gyms closed. In those early days, I didn’t know what was safe and what wasn’t and basically stayed home for 3 weeks, resetting all my progress. When I tried to do normal activity again, I had severley regressed. By April 2020 I was unable to climb stairs, or walk down the block - both would trigger a migraine.
At this point I became virtually housebound since our house was only accessible by climbing 80 steep stairs.
Finally I met my saviour. Dr. Ellis took an extensive history. Notably she zeroed into the “exertional” element of my issue. We took my HR during the call, which showed my resting HR as 115. This was a big red flag for her.
She recommended I avoid my triggers for 3 weeks, and then we’d taper me off the Cymbalta (the taper experience was HORRIBLE) and start on a very low dose of topiramate. During that 3 week break, I barely left my chair at home. Unfortunately, “avoiding my triggers” was a big mistake. It’s not possible to completely avoid physical activity, and resting just lowered the threshold for what would trigger a migraine. 2 weeks in, I triggered a migraine from changing the sheets, and another from hanging IKEA curtains after washing them.
This seemed normal to me, but she was concerned, so recommended I get evaluated for something called “POTS” (postural orthostatic tachycardia syndrome).
Next I bought a heart rate monitor, which let me identify specifically: If my HR exceeds 145BPM for more than a few minutes, I am virtually guaranteed to get a migraine. Additionally, my resting HR was extremely high (100), my HR would go up and stay up any time I was standing (130-140), and would spike if I bent over (175-180) or walked up stairs. Several cardiologist appointments later and I was officially diagnosed with POTS. This explained why weight lifting didn’t trigger a migraine even though it is intense “activity” - my HR doesn’t go up when I’m pumping iron, but speed-walking for a block my HR will skyrocket and give me an instant migraine.
We immediately tapered me off the topiramate, and started with a low dose of propranolol, a medication that helps to control heart rate. This was the beginning of well-managed migraines for me. You can read above for my current migraine status.
Here are some notes and blogs I found helpful when I got diagnosed with POTS
https://chronicallysalty.com/2018/12/17/athletes-with-dysautonomia-tips-and-tricks-to-battling-pots/
https://chronicallysalty.com/2019/03/06/the-levine-protocol-what-it-is-and-how-it-helps-pots/
https://betterbythebeat.com/the-levine-protocol-for-exercising-with-pots/
This is the best exercise program - it took me from completely housebound to able to walk a mile at a normal pace in about 9 months:
https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf
I did not like the Levine protocol, but here is information about it:
https://betterbythebeat.com/how-to-calculate-your-levine-protocol-training-paces/
https://dropitlikeitspots.com/modified-levine-protocol/
Much of this wasn’t terribly relevant for me, but maybe it will help someone else!
Benign exertional headache(BEH) was first described in 1932
by Tinel et al. (1 ). This type of headache occurs, by definition,
during different physical activities increasing the intrathoracic
pressure such as coughing, breath-keeping, laughing, crying,
running, etc...The headache began always suddenly during exercise
in both frontal regions, was pulsating and lasted between 12 and 48 hr.
It was often accompanied by photophobia, nausea and vomiting...
The pathogenesis of BEH is not fully understood. A possible
pathophysiological mechanism similar to that of "altitude head
ache" has been suggested (9)...The detection of impaired regional cerebral
blood flow (rCBF) by 99mTc-HMPAO brain SPECT indicates a perfusion-related
pathology in this type of headache.
Primary Exertional Headache
There is no treatment guideline for EH. Conventional approaches include
nonpharmacological and pharmacological interventions. Nonpharmacological
interventions include biobehavioral strategies such as sports training,
proper warm-up before exercise, or hydration with sports drinks.
Pharmacological interventions might be tailored to clinical characteristics
of EH. Acetaminophen or NSAIDs, especially indomethacin [40], might be
considered in patients with mild to moderate EH. Specific antimigrainous
treatment, such as triptans, might be used in EH sufferers bearing more
migrainous features. Nonetheless, large-scaled controlled studies are
required to provide more evidence for decision making.
Among EH sufferers 73.7% reported their headache as bilateral.
This finding is similar to results of other studies in this field...
The most common aggravating factor was exercise in hot weather (81.6%)...
Exercise headaches may have migrainous features such as a pulsating
quality, as will be discussed in greater detail below, but if an
exercise-induced headache otherwise meets diagnostic criteria for
migraine, it should be considered as a migraine...It should also
be noted that the criteria for PEH require strenuous physical
activity, which distinguishes this entity from others such as
headaches induced by cough or Valsalva maneuver. Also specified
in the diagnostic criteria is the caveat that symptomatic causes
of exercise headache, including arterial dissection, reversible
cerebral vasoconstriction syndrome, and subarachnoid hemorrhage,
must be ruled out in a patient with a first exercise headache...The
pathophysiology of PEH is not well understood. Some investigators
feel that it represents a vascular disorder, with decreased venous
return and/or arterial distension leading to traction on pain-sensitive
cerebral structures...It is fascinating to speculate as to why this
disorder presents and then (in most cases) vanishes as it came, one
of the few primary headache disorders with a typically time-limited
course...
No good-quality evidence regarding treatment of PEH exists...However,
studies indicate that PEH is self-limited, resolving in most
individuals within months to years...Some experts recommend an
extended warm-up period prior to any exercise, or a gradual increase
in activity level over weeks to months...PEH also seems more frequent
in hot weather and at high altitude, so avoiding these potentially
aggravating factors may also be prudent when feasible...From a
pharmacological perspective, small studies have suggested a role for
indomethacin 25 mg tid, while other experts recommend indomethacin
25–50 mg, or other NSAIDs such as naproxen, taken as needed 30–60
min prior to exercise...
Another article about migraines, indicating that it may be an inability for the brain to process massive glucose influx. This article was really strange to read because it describes me in strange ways:
In migraine, peripheral skin temperature feedback (TEMP-FB), blood-volume-pulse feedback (BVP-FB) and electromyographic feedback (EMG-FB) are the most prominent applications, while electroencephalographic feedback (EEG-FB) and galvanic skin response training (GSR-FB) are seldom used. (Nestouric et al., 2008 [1])
Migraine patients treated with biofeedback will likely experience symptom improvements of 56–65% over and above those of an average patient in a waiting list control group. (Nestouric et al., 2008 [1])
Blood-volume-pulse feedback yielded higher effect sizes than peripheral skin temperature feedback and electromyography feedback. (Nestouric et al., 2007 [2])
“Rosado’s regimen varies, he says, but he typically prescribes 0.1 milligrams of sativa for each pound of the patient’s body weight, taken daily, if they use a vaporizer or typical inhalation method. For an edible oil or capsule, his usual recommendation is 30 to 35 milligrams per pound.” - source
“The results showed that THC-CBD was slightly better at reducing the frequency of migraine attacks than the commonly prescribed med (40.4 % versus 40.1%, respectively). And the THC-CBD drug was very effective at reducing migraine pain, cutting it by 43.5%.
The drug was also effective at reducing the severity of pain in cluster headache sufferers, but only if they had a history of migraines from childhood on.” - source http://getzenca.com/get-zen-products/serenity-1111-capsules-cannabis-oil/
37 migraine patients underwent an average of 40 neurofeedback sessions combined with thermal biofeedback. The study involved treatment using EEG biofeedback, pIR HEG biofeedback and handwarming biofeedback for an average total of 40 sessions. 30 minutes at least twice weekly. Results: Of the 37 migraine patients treated, 26 patients or 70% experienced at least a 50% reduction in the frequency of their headaches which was sustained on average 14.5 months after treatments were discontinued. In neurofeedback, sensors are attached to the scalp and the raw EEG signal is amplified, the frequency spectrum is extracted via a Fourier transform and selected frequency components are displayed through a user interface such as a video game.
Assessment:
Protocols:
(Stokes and Lappin, 2010 [3)
TO READ: https://americanmigrainefoundation.org/resource-library/understanding-migrainefiling-for-medical-disability-a-guide-for-migraine-patients/
Twitter thread: https://twitter.com/FakePaperclips/status/1383606181189488641
© 2023 / Molly Jane Nicholas / email