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.
