15 Things I Consider Every Morning With Chronic Hemiplegic Migraine
When you open your eyes in the morning and the haze starts clear, do you feel pain anywhere? When you lift your head off the pillow, use your arm for support to lift yourself to sit on the edge of the bed, bend your knees to swing them to the ground, do you feel pain or weakness anywhere? Can you even move? When you put all your weight on your feet to stand up straight, stretch your hands to the sky, and get out that last yawn, do you feel pain anywhere?
If you answered yes to any or all of these, I feel you! That’s me most days. Because the minute I come out of my sleepiness and even before I open my eyes, I have a migraine. I have head pain with my hemiplegic migraines. I feel that deep, throbbing in my left temple and my left eye feels like it has never closed a day in its life (I’m a lefty by the way. All my HM symptoms happen on the left side of my body, even my migraine pain — a rarity according to some doctors). Gritty, sore, and three times too big for its little living space.
There are 15 things I have to consider the minute I feel my body come to life every morning.
1. Is my temple painfully throbbing? Migraine pain, for me, is in my left temple. The pain is a consistent drum beat, a rhythm I despise when it’s banging in my head. Have you ever tried to stop the blood flowing through the vein in your temple to find even a second of relief from temple throbbing? Yes? Why do we do that! Yes, it takes the pain away from a second or two, but the second you let go – wow. Piercing throbbing pain until it calms down. Sometimes I will risk it just to feel sweet nothing. No throbbing today? My excitement begins! It just might be a decent day…
2. Does any body part feel sore or achy? Sometimes I don’t even need to move to feel a sore body part. Sometimes just opening my eyes is my first clue. The minute I move my eyeballs I feel it behind my eye. No eye pain? Awesome, good start. Let me switch sides because I need like 10 more minutes. Does moving to switch sides cause any soreness anywhere? Usually it’s in my neck, shoulder, or back. If I feel it, I slow my roll. I start moving pretty gently and my hubby knows immediately something is wrong because I’m moving like a slow motion movie. No soreness anywhere, I might actually have a good day…
3. Do I have any shooting pain anywhere? I have nerve pain throughout my body, not just my left side. I’ve had it since I was in a car accident in 2004. It shoots anywhere, though… not fun. Most of the time I don’t feel shooting pain in the morning. But if I do, and if it happens in clusters, the shooting pain can trigger my HMs. You see, for me, any time of body pain or stress on my body outside of HM will trigger HM.
4. Can I move or lift my arm(s)? Moving my arms is one of the first things I do. I normally rub my eyes or move my long hair out of my face. Sometimes I just take it out from under my pillow. The weakness I feel with HM has levels. Depending on the level of weakness, I may have had an HM overnight and not woken up from it.
5. Can I move or lift my leg(s)? Same scenario as the arm situation in #4, just for my legs. I normally have worse weakness in my legs than I do my arms if I’m feeling weakness at all. Weakness upon waking? Not going to be a good day…
6. If I turn my neck do I feel pain there or anywhere else? Ugh, my neck. This is the worst part of all my pain. Especially in my upper neck, where the neck meets the bottom of the head, which I’ve learned is the C1 of the cervical spine and is also called the Atlas. Honestly, I feel like all my issues stem from this area. I am seeing a chiropractor right now who is currently treating another HM patient pretty successfully. He mentioned to me that I have a bad C1 (as well as several other areas, but the C1 is the worst), and during the evaluation this is the area that almost had me in tears when he was gently tapping it. He believes in soft manipulation, no popping for me, thank you very much! I’ve only had one appointment, but I hope to have the same luck as his other patient. I have neck soreness/pain everyday regardless of any other symptoms.
7. If I stand up, do I feel like passing out or have vertigo? A lot of people experience vertigo or dizziness when standing up too fast. This isn’t that kind. After getting up I can usually walk a few feet, but I slowly start to become really dizzy, the world gets blurry, I feel disoriented, I start talking funny (aphasia), and I start to lean or fall because I feel like I’m about to pass out. I usually get myself right back to bed. Lying down takes it all away. If this happens… definitely not going to be a good day!
8. After getting up from bed, does my body ache? I know we talked about soreness and achiness in #2, but sometimes I don’t feel anything moving around in bed. But once I stand up, I feel it in my legs, arms, or back as I’m walking or lifting something. This is pretty typical for me though, I normally have some level of soreness in my left side at all times. When I don’t, it’s a great day!
9. Do my legs feel weak while walking? Sometimes #8 and #9 go hand in hand for me. Sometimes I think I’m not really weak, but just sore at a very severe level and I show limb weakness to avoid pain. Other times, though, I have no soreness and I have true weakness. It feels like a weight has been anchored to my left leg and it’s so difficult to lift. I drag it, not because I have to, but because it’s easier to walk that way. If I don’t choose to drag it, I walk really funny. I’ll have to video tape that one day. My dad calls it my “stanky leg.” If I am unable to walk even a little bit I normally use my wheelchair.
10. Am I having difficulty walking or can I walk at all? I pretty much explained my “stanky leg” in #9?
11. Is it difficult to go from sitting to standing or laying to standing after a while? I mean joint pain here. If my inflammation has flared, just moving my knee or my elbows is like moving around a Rubix Cube. You know how it catches sometimes when you’re trying to get the colors to line up? Yea, like that. Or, it’s like trying to straighten out a rusted pocket knife. Now add pain to that. Yep, that’s what I’m talking about.
12. Can I shower without having an HM right after? Oh, the dreaded shower. If I’ve already been in HM for days straight, I normally opt to shower in the evening before bed. Why? Because showering really takes the lift out of me most of the time. It’s the processing of using my arms so much, lifting to wash my hair, getting my heart rate up just doing those things really triggers HM for me. If I do shower in the morning, it’s because I didn’t have any issues with most of #1-11.
13. Can I shower without having to go back to bed from severe fatigue? Similar to #12, sometimes shower doesn’t trigger HM, but it does cause me severe fatigue. I will finish my shower, go straight to my bed (most of the time still in my shower robe with a towel on my head, skipping the deodorant or brushing my teeth), and immediately fall asleep. I wake up an hour or two hours later and finish my morning routine. If this happens, I’ve probably had issues with #1-11 anyway, but no HM like in #12.
14. Can I get dressed in something other than yoga pants and a T-shirt? Ah, my daily outfit. Yoga pants and a t-shirt or tank. I don’t work or go to school anymore because of HM and seizures. I don’t drive and we only have one car. So I’m stuck at home most of the time. No reason to wear real clothes. And no, I don’t do yoga (although I’d like to start). But sometimes, when I’m just feeling so good and even if I have nowhere to go, I get dressed and wear my knee-high boots to feel pretty? Nothing wrong with that! Not a good day? Forget it, sometimes I don’t even have the strength to stretch on yoga pants!
15. Will I wear makeup today and not get tired from doing it? One of my most favorite things to do is wear makeup. I love blending, dabbing, applying, and sparkling! I love deciding which colors to wear, which of my eight mascaras to wear that day – will I wear blush? It’s a great time. But applying makeup can also trigger my HM. I’ve learned that even if I am not having HM symptoms or migraine pain, just lifting my left arm too often will trigger full-on HM. So if I have the energy (no fatigue) to apply makeup, I normally rest my left elbow on the vanity and try not to lift it too much. My right arm does most of the work. HM hacks, gotta love it!
You see, these are everyday things that someone without chronic pain or a chronic illness does not really ever need to consider on a daily basis. This list is my morning list and takes a lot of spoons. This doesn’t include lunch time, snack times, dinner, raising a family, being a wife, social activities etc. This is just my morning. If I can get through all 15 of these and not have a hemiplegic migraine by the time I’ve finished through them all, I know I will have an awesome day!
I may develop some pain or limb weakness at some point that day, but more than likely I will go to bed with mild muscle pain and/or weakness and I will most likely not need my wheelchair that day. I can’t say what the next day will be like, because HM is so unpredictable. Sometimes I can go through a whole day getting through #15 and not having any symptoms until it’s 7 p.m. Then boom! HM and/or seizures. Life with chronic hemiplegic migraine is a roller coaster ride…just have to get through all the ups and downs.
We want to hear your story. Become a Mighty contributor here.
Lead photo by Thinkstock Images
Erica Carrasco, aka Achy Smile, lives with hemiplegic migraine. A native of Midland, Texas, she now lives in Garland, Texas with her husband Stephen and their son Noah. Their daughter, Marissa, who lives with chronic vestibular migraine, is a Senior in college. Noah is a Sophomore in college living with episodic attacks of retinal migraine. In late January 2018, Erica shared the stage with prominent women in the health industry and talked about her life with migraine at BlogHer Health, an annual blogger conference for women. In early 2020, Erica joined over 200 advocates at Headache on the Hill, where she discussed with Members of Congress about what it's like living with hemiplegic migraine and not having access to doctors trained in headache medicine. She is the 2022 winner of the Creative Contributor category of the Health Union Social Health Awards. Achy Smile is a Partner of the American Migraine Foundation and the Association of Migraine Disorders, is the Director of Marketing for Chronic Migraine Awareness, Inc., and makes migraine awareness t-shirts and gifts for those with neurological disorders at Achy Smile Shop between attacks.
erica-carrasco