migraine

Migraine intractable with aura

types

chronic, intractable (Status Migrainosus), with or without aura, hemiplegic, retinal, vestibular, menstrual

symptoms

Headache, neck pain, fatigue, nausea, constipation, light/motion/sound sensitivity, cravings, no appetite, extra thirsty, need to pee, mood swing (irritability, depressive, euphoria), aphasia, dissociation, difficulty concentrating, brain fog, numb/tingling throughout body, yawning, aura

auras

visual, sensory, language (aphasia)

meds

NSAIDs, SSRIs, Triptans, Gepants, Beta-Blockers, Anticonvulsants, CGRP inhibitors, Botox

tools

Heating pad, ice pack, mini-fridge near bed, cooling eye mask, fan on low, Squishmallows, maternity pillow, humidifier (not diffuser)

treatment plan

Having tried over 15 medications, I hope to have some insight for anyone in similar situations! Please don't take my experiences as "normal"; they are my own, and your journey will look vastly different. These are insights, not advice! Please talk with your doctor before starting or ending any medications.

There are a handful of medications and treatment plans I do not feel comfortable recommending, as they did more harm to me than good. Most notoriously: Topamax. It turned me into a literal villian, but it has worked wonders for other people.

Triptans are usually the mid-last resort, and they do work well for majority of people. They do not work on me, unfortunately! They are meant for "emergencies", and cannot be taken more than 10 times a month.

For my own well-being, I cannot take SSRIs again. The side-effects of all of them eventually outweighed the pros. "Brain zaps" were the worst. A side effect when you stop taking the drug after having been on it for years; even a slow taper left me a mess. An entire year of my life was shrouded by sudden jolts and zaps, disrupting my everyday life.

I've had success with birth control that has a higher amount of progesterone, but that is more for the PMDD page. My mother, as well as others, had success with Amitriptyline (heart medication).

Current: Junel Fe 1.5 Mg-30 McG (birth control), Levothyroxine 50 McG (for thyroid)

symptom management

16 years of migraines have left me wondering... Just how much of what we consume affects our health? Elimination diets are a good start, but they can become gruelling and devestating, especially if your migraine triggers aren't food related.

Still, avoiding a few things can be helpful. Preservatives, most notably nitrates and nitrites, are known triggers for others and myself. Within 10 minutes of eating most processed meats; migraine. Copious amounts of sugar, like Sweet Tarts Sweet Ropes; migraine in minutes. 20oz of brown soda? Seemingly okay. Why?? Perhaps the Red 40 in the candy gave it the extra whammy it needed to induce a migraine.

It can be helpful to track your migraines and the food you ate within the last hour of the onset of one. But, do not get obsessed! Observe, be aware, and make small changes.

Enemy number one: Stress. Good stress from exercise or laughing too hard, bad stress from everything in-between... it's a nightmare to manage, but the most crucial. I've only made progress in this area by developing an avoidant behavior. I do not recommend this! It works for me for right now, but with time and more therapy, I hope to handle my stress in healthier ways rather than hiding away from the world. I hope to share what works for me when the time comes!

rest & recovery

The best thing we can do for ourselves is to rest and recover. Don't feel bad about "wasted days". There is really no such thing if you have the right mindset. It is a slippery slope of self-loathing, though, I won't deny. Remember to be kind to yourself. Whether you did everything you thought was right to avoid this pain, or you did everything "wrong" in the book, thus "you did this to yourself". Life is truly long and there is time to heal. Don't rush yourself, and don't feel worse when things don't turn up. Remember the good in life and let that carry you onward.