"I get headaches, too" and other phrases that would make you scream (if only it weren't for this damned migraine pain)

Quickest way to annoy a migraine sufferer? Tell them you get headaches, too. The typical headache that a non-migraineur experiences from having a cold, or mixing your reds and whites, is nothing like a migraine. I promise. A simple headache doesn't come with a full array of other symptoms and side effects. Neurologically, they are different. Though the NIH defines migraine as a headache disorder, it's misleading and dismissive to classify or associate a migraine with something you could get relief from by taking an aspirin with a glass of water.

Living with this incurable condition takes a level of patience that many can't appreciate. Not only do you have endure off-the-chart pain (which can kinda drive you batty after a while), you get to hear a whole lot of unsolicited advice from people who don't actually experience migraines, and have no idea about what causes migraines. They don't understand that you, as a person living with this, have probably already tried 100+ things. One good-intentioned person told me with absolute certainty that my hemipligic migraines (which he'd never heard of to that point) could be cured by taking magnesium. Now, yes, magnesium can be helpful for some people, but not for those of us that don't have a magnesium deficiency and not for all types of migraines. I don't have good advice in handling this unsolicited help. I've tried SO much, and have kind of started sounding like a broken record with some, explaining that 'it's not that type of migraine' and that my doctor and I are continuing to pursue what works best. If popping a vitamin was all I needed, or anyone else suffering from migraines of all variety, it wouldn't be in the top 10 most disabling illnesses in the world.

Worse than hearing a line from a non-medical person that sounds like, 'all ya gotta do  is', is hearing from a physician that you can't be helped. If you do hear that, second guess it. Get another opinion. Doctors can get it wrong. They can choose to not hear you, and if they aren't specialists, and they aren't familiar with your particular diagnosis or challenges, they might think the wrong treatment was the only treatment, and dismiss you when it fails. You're not stuck with that doctor for life. Get another one. Do your homework. Read the reviews. What are their specialties? It might help to be very prepared for your second opinion. Doctors talk, especially specialists or in the same network, so have very specific details if you can, to help explain what's happening, how often, what hasn't worked (and very specific side effects if there were, because some doctors may want to retry failed methods), and how this is impacting your work, family and quality of life. You have to advocate for yourself, something that when combined with coping with chronic pain, can feel very much like a fulltime job. Many medical practices are going to follow your insurance guidelines to start, but a good doctor will advocate for you, to try things outside of their normal (and often ineffective) parameters. The more tangible information you provide, the more they can push to get you more options.

Stress is a major trigger for many of us. Trying to manage migraines, in itself, is stressful. Dealing with frustrating comments regarding your health from others, whether flippant or just naively ignorant can make you want to punch stuff. If you don't get migraines, but think you know more about them than someone who does, learn to duck.

When it was new - A few tricks I wish I'd known

The hardest part of a new diagnosis (aside from getting a correct one, in some cases), is that initial what next. A lot of the stories I've seen from others with HM have a similar theme: Went to the ER thinking I was having a stroke. Got sent home with (enter OTC pain killer here) and instructions to follow up with my GP. That's kind of how my story goes, with a lot more detail leading up to the ER trip, a stay in OCU with a full gamut of tests after landing there, and a DREADFUL 2 month wait afterward for anything resembling a plan for treatment. I had suffered with migraines since the age of 7, having 1-3 per month. Starting at around 11, my menstrual migraines came like clockwork. Even with as much experience as I had with migraines (more details on those in a later post), the new form they'd taken, and the increase in frequency after my first confirmed hemilegic migraine, really took me by surprise. I had no idea what to do, no idea how to take care of myself and felt absolutely helpless, knowing that I had to wait two bloody months to be seen by a specialist. Thanks, crappy US "health" system.

One thing I did do for myself right away, was to start an elimination diet. I'd done one years before, when my former GP couldn't figure out what was causing severe edema. In that situation, a simple food allergy panel would have shown I was allergic to soy, but hey, I got to play detective, and prove a lazy, wannabe know-it-all douche-canoe of a doc wrong on an embarrassing level, so there's that. Moving on... The non-HM migraines seemed to be coming back to back. I suspected stress to be a major factor, but wanted to make sure I started finding and eliminating triggers that I had actual control over, as soon as possible. Unfortunately, this *is* a lot harder to accomplish when you're paralyzed a couple times a week, and in massive amounts of pain most of the time. It sucks, but really, if you're on this journey, for pretty much any reason other than a neck/back injury, it's going to be a long one, so you might as well get started now, right?

I didn't know anyone who'd been through what I was experiencing. I had no help. It took a long time to feel like I got to be an active part of my treatment. If you have a medical team that has to go through the BS insurance rigmarole of throwing crappy meds at you (that have nothing to do with HM, and often make them much worse, because insurance companies don't know shit about HM) before they can treat you like a human being that is living with this incurable condition, hold on to your sanity, baby. It's going to be a bumpy ride.

If you're stuck waiting for referrals and tests before you can be treated, it is probably going to be frustrating. Your body is doing all of this weird crap, it effing hurts, and you can't do anything or get answers on how to make it stop? Balls. The list of changes I've made since being diagnosed is endless, but I've jotted down a few ideas that I hope will help ease the frustration of the waiting game.

• Get a notebook or a planner that has lots of room for notes. Write everything down about symptoms, any suspected triggers (was your landlord painting? was there a flickering light over your cubicle? did you skip coffee, or have more than usual?), note start and end times, note weakness/numbness in limbs and if they start before headache onset. Not every HM is the same, and when you start to write everything down, you can start to find triggers AND warning signs. I was able to figure out how long I'll go from onset to paralysis because of consistent note taking. It's helped a lot!
• Meal plan for the week. Even if you're not going to do an elimination diet or migraine diet, I promise this is going to be helpful, even if you are single and living alone. Try to take advantage of the days that are migraine free, by planning and prepping the meals for the week. Even when you're hurting, you're going to have to eat (not eating is a migraine trigger, and can make the duration of the migraine longer). Taking the guess work out of your menu will help with stress and having ingredients on hand, and ultimately, meals ready to go, means you're not blowing $40+ on a single dinner with delivery when you can't leave the house.
• Have quick, minimally processed foods ready to go, for when you can't handle 10 minutes standing up. In the beginning, I was in the middle of making dinner and didn't know I was going hemi. I accidentally sliced through my finger. Then, I tried to take a pan off heat with my semi-paralyzed (non-bleeding) hand and ended up splashing hot olive oil all over myself. Hemiplegic migraines are fun! Said no one ever. All that to say, a baggie of sliced oranges and a coconut yogurt could have kept the migraine that followed from lasting as long as it did. 
• Rearrange your bathroom (and other rooms) in a way that makes sense for your paralysis. For me, this meant putting TP and sanitary supplies on shelving next to my toilet, instead of in the cupboard. I keep bottled water in my bathroom now (in a cupboard) for when my migraines cause vomiting and I'm stuck in there for a while. Towels are kept in a basket on a shelf instead of the linen closet, so that I have easier access. Even my second bathroom has been given a bit of a makeover. Anything I've wished I had for comfort during a migraine, gets noted and changed later, to try to make life easier.
• Clear a path from your bed to bathroom. I didn't used to have a straight pathway, with my old furniture layout. I often go hemiplegic while I sleep, wake up to pee and fall over on my way to the bathroom. It's not nearly as bad falling onto the floor as it is taking out a piece of furniture, an oscillating fan, and a $60 wired farmhouse laundry basket. On that note, is your tetanus shot up to date?
• Ignore your scale for a little while. The meds are going to screw with your weight one way or another. Your eating habits are going to change. You may not be able to be as active at first, and for some, your doc may ask you to eliminate trips to the gym for a period of time (I still don't have medical clearance, 21 months in). Your doctor will be doing weigh-ins. Take note of extreme gains/losses in case they don't, because it could be a problem with medication, but for goodness sake, don't stress out about going up a jeans size (or down a bra size). Other things, like managing your pain, and not having a stroke, are much more important.
• Try to create a plan for alternate transportation. Luckily, my son and aunt have been able to pick me up from work a couple of times, when an HM started midday. Public transit isn't an option for me (it would involve too much walking), but an uber would work in a pinch. Leaving your car behind is unpleasant, but risking people's lives when you can't drive is not an option. Don't do it.
• Take a look at all of your cleaning products and toiletries. Some ingredients, like VOCs, parabens, and fragrance can be triggers. Even the stuff that you use because your mom/grandma used them your whole life might not be your best option. Your triggers can also change, so even if it was fine before, that floor cleaner can start triggering migraines without notice. I wish like crazy that I could afford to have someone clean for me (as do my doctors), and recommend adding that to your list of things you should consider if you're able to fit that into your budget. If you already do, don't forget to check the products your service uses,  and offer to keep supplies for them, that will work for you.
• Aside from co-workers (and I feel like dealing with HM in the workplace needs its own post), make sure that people you see semi-regularly know about your diagnosis. Yes, it's hard to explain and is going to be awkward. Get it over with. It beats having a neighbor calling 911 because they think you're having a stroke when they see you doing the limp and drag walk to the mailbox. 
• Forgive yourself. You are going to miss work. You are going to be late for appointments. You are going to have to leave celebrations early. You aren't going to be able to maintain the same level of dependability, and people that counted on you for certain things, especially things that made their lives more convenient, are going to have to figure it the fuck out without you sometimes. That's okay. It's okay for you to take care of yourself. You have to live with this pain and inconvenience, and figure out how to manage JUST FOR YOU and that's going to make life look a lot different than it did before. If you have small children, you're going to need help. That's okay. Be the parent that took care of your health, and did everything you could to take care of yourself so that you could be there for them, and be the parent that persisted despite obstacles, so that they will be the adults, someday, who do the same. Give yourself some grace. You are going to have to start saying no to all kinds of stuff because if you don't, your body will do it for you. 
• Celebrate the small wins. If you recorded 25 migraines in a 30 day period, but then got 4 consecutive migraine-free days, that's a big deal. I used to be so fearful of the next migraine/hemiplegic migraine, that I couldn't enjoy the time in between. I would rush to get stuff done, in anticipation of the next episode, sometimes stressing myself into it. It was so bad, that even my favorite things, like spending time with my niece and nephew, would be so overshadowed by the knowledge that our time could be cut short, that I would start to have anxiety if symptoms started showing up (even if a migraine was hours away from starting). When those good moments come your way, just be there, in that moment. 

blah blah Disclaimer blah yadda yadda

I'm not sure if I should have to say this or not, but I guess these days you've got to play it safe. I'm not a doctor. I don't work in the medical field. If you have stumbled across my blog because Dr. Google thought this matched a bunch of symptoms you were typing in their search engine, please know that nothing you find here is to be considered medical advice. If you haven't been diagnosed with hemilegic migraines, complex migraines or haven't been to an actual doctor yet, PLEASE get your droopy self to an ER immediately. The danger of a stroke is no joke, man. Seriously, you're wasting valuable time. Get there. Even those of us who have been diagnosed with this sh*t show have to be cautious about missing signs of a stroke, and/or mistaking them for another migraine.

Please also know that every journey is different. What works for one person will not work for another. Our triggers may not be the same. Symptoms can change throughout this condition, so I may have experienced some that you haven't yet or never will, and vice versa. Our treatments may be similar, but results may not be. I make choices that I'm sure others wouldn't. I choose not to use any type of narcotic medication, and am grateful that I have a physician who respects that, but if that's the path you've chosen, that's all you, Babe. Pain, paralysis and the incredible inconvenience of HM all suck. It can take an emotional toll. Sometimes the meds (especially the guinea pig phase) can make that even worse. I'm not here to judge, and ask that any comments posted, whether toward me or other readers, stay kind in nature. There are no pissing contests allowed here.

If you're here post diagnosis, welcome. I can't tell you how to cure them (spoiler alert, there's no cure), but I am happy to share my hemiplegic migraine experiences with you and share what has helped make life more manageable for me so far. If you're here because a loved one was diagnosed and you're trying to get more info, well, you rock for wanting to understand. Whichever scenario brought HM into your life, keep learning, try to have patience and no matter what looks different physically, please remember that the same person is living in that sometimes crooked body. Despite the pain, the brain fog, the back and forth of a face and limbs looking and working the way they should, we're here and we want normal back, too.

Intro -

There's been an urge to get this blog started for quite a while now. When I got hit with a diagnosis of hemiplegic migraine following a stroke scare, I was terrified. I was sent home from a 2 day ER/OCU visit, waiting on results of my MRI and CT, plus an emergency bedside spinal, with instructions to follow up with my doctor and take ibuprofen as needed. My GP knew virtually nothing about my condition, and even family members that work in the medical field hadn't heard of it. Though I and others I know have dealt with chronic migraine and cluster headaches, no one I know had ever been through this. With a 2 month wait to see a neurologist, I started searching every avenue of the internet that I could think of, minus the social media platforms that I'm not fond of using. Most of the web pages I found gave generic info (in typical copycat format) and weren't very helpful. The medical studies were fascinating but scary, and without more info, like the test and lab results, I wasn't sure how much pertained to me. During the wait to be assesed and treated, I went from having the more traditional migraine from 3 +/- times a month, to 4-5 times a week, and was having hemiplegic migraines about 2-3 times a week. It was a lonely, scary time.

I did stumble across a couple of articles and blog posts from others who live with this condition. While it was somewhat comforting, the articles didn't list resources for more information, and the blog writers were mostly focused on other aspects of their lives, so references to hemiplegic migraine were mostly mini vent sessions, and less to do with treatment, symptoms (because there are lots, and boy do they change), or the adjustments they've made to be able to live with HM. Surprisingly, it was YouTube where I finally found info that seemed genuinely helpful. I do plan to link to channels and websites where I find helpful resources. If you aren't seeing that on this blog yet, you can search for LifeLongBrainFreeze, for one of my favorite, keep it real content creators on YouTube, and check out the series on Familial Hemepligic Migraine featured on the channel called Lifey Health. For the latter, there are some errors in the statistical information given, but the explanation for what happens neurologically in the HM vs. most other types of migraine was not only helpful for me, but to family members and coworkers trying to understand what happens when they see that whole melting face thing starting to kick in. Watching videos continued to be helpful when treatment began, especially when the HORRIBLE medication they put me on (more on that later) made it impossible to read. When that crap was out of my system, I resumed searching online for written content and was still only finding what I'd already seen. My hope for this blog is to be able to post some resources along with my experiences, and to inspire other people out there who are experiencing HM to share what they can, as well.

~Becca