“I never know where I’ll be or what I’m doing when it hits. While I’ve identified many triggers, there are so many still unknown, if identifiable at all. I try not to let the possibility of a migraine dictate my life and activities, but sometimes it’s in the back of my mind. I wonder, when will the next one hit? How long will it last? Will anything help it?
I hate the thought of living in fear, and well, I hate the feeling too. Because I have certainly experienced it many times throughout this recovery. I have put in the work to process it better for my own internal peace and sanity so I am not defined by my brain injury or any other diagnosis such as migraine. But when they hit, it is shattering. Every time. It’s a shock to the system.
The pain is something I don’t think I could ever be prepared for. And it is something I would never wish upon anyone. Well, I actually don’t like this saying because I don’t wish any sort of pain upon anyone, but to put it in perspective, there are really no words to fully describe the pain or the experience before, during, and after, though I will attempt to describe it.
After a recent migraine, someone asked me, ‘So, it’s just like a bad headache or a hangover that lasts really long?’ Having experienced many bad headaches and some of the worst hangovers (not proud of it), this does not compare at all. Multiply it by…I can’t even come up with a number because there is just no reasonable, quantifiable comparison. Add in living in the dark for many days at a time, with limited communication to the outside world.
Grocery stores used to be fun for me. This may seem weird to some. My sister and I would love to walk around for hours looking at different items, observing people, and also figuring out what meals they were making with the contents of their cart. It was always fun to observe what people were buying and what they were doing. I also wondered if the strategically picked pints of ice cream someone settled on were to help cope with some sort of grief or heartbreak like I had done a few times in the past.
I woke one morning and decided to attempt to drive myself to the grocery store and shop alone. There are two big tasks here for me to accomplish. The first, driving to the store. I hadn’t been driving at all up until just a couple months ago due to my visual dysfunction. I had driven short distances, about ten times over the past three months. The second, is grocery shopping alone.
The grocery store was no longer enjoyable for me. I always have to give myself adequate notice of going to the grocery store and mentally prepare, and then give myself a pep talk right before walking in. It’s like a huge mission I have to accomplish–I have to prepare a clear list of items and not venture off from the mission whatsoever. My motto is to get in and get out, as quickly as humanly possible. I have experienced plenty of migraines and panic attacks in the grocery store due to the overstimulating environment on my brain and visual system.
My balance is always affected and finding items in the store is always a very difficult challenge because scanning is still not a working function of my brain. My brain starts to malfunction in busy and cluttered environments. I have relied on others to help me at the grocery store up until recently, as I wanted to start challenging myself to do it alone at times to build up my tolerance. It is difficult losing independence and I am finding it is very difficult to gain it back.
I felt funny this morning but didn’t fully stop to recognize or acknowledge what this meant. My mind felt hazier than usual. I had been dealing with my nausea, which is present almost 24/7 so it wasn’t unusual. But, after my usual mental preparation, I drive myself to the store. I make it to the parking lot, where I feel even more off than before and the nausea has ramped up, but still, I don’t stop to think of what is coming. I give myself a pep talk and head into the store. Get in and get out.
I’m standing in the produce section when it hits. The doom it brings is overwhelming. The ringing in my ears intensifies. I can feel my vision fluctuating as if I’m standing in the middle of a teeter-totter and can’t find the perfect balance. It sways side to side and is only a matter of time before it sways all the way to the downward spiral of migraine. This can’t be good; an impending migraine.
I rush out to the car. I feel sick and my head is throbbing. My eyes are so sensitive to light. It’s as if it is being directly absorbed as the storm is brewing, sending shocks of lightning throughout the entire surface of my brain. I feel my brain shutting down as I sit in the driver’s seat, unmoving. I try to will myself to get moving. Come on, Drew. I need to push through it and race the clock to get home before I lose my vision completely and I can’t function at all from the excruciating pain. I tell my sister so she can track my location on the drive home.
I start the car and hope I can make it, but unfortunately I only make it ten minutes before I have to pull over on the side of the road because my vision is tunneling and my head feels like it’s going to explode. I have to at least get to a safer spot. There’s a gas station just a block away and if I can just make it to that parking lot, it will allow me a safer place. I pull over in the gas station parking lot. I can no longer see much. Thank God for the favorites list on the phone because I’m able to call for someone to come pick me up and drive me home.
I go to my bedroom, close the blinds, turn my noise machine on to at least cover up some of the ringing in my ears, lie in pure darkness, and wait for the storm to pass. Although it doesn’t and continues for six days, which in migraine time feels like an eternity. Nothing touches the pain and it’s a waiting game. During this time, I missed many events, talked to only a couple of people, and was otherwise completely disconnected from everything. When it finally ends it is a huge relief, but unfortunately, many unpleasant symptoms continue to haunt me for one to two weeks until I return to my abnormal normal baseline. I call this the ‘migraine hangover,’ which is still not comparable to a typical hangover. Once the hangover clears, the next migraine hits and the cycle continues.
Imagine lying in bed for days at a time in complete darkness. You can’t concentrate or think because the pain is so bad. You can’t look at even a sliver of light without piercing pain to the eyes and head. You can hardly form words or speak. You have more contact with the toilet than any person or any thing. You are forced out of bed to sit on the bathroom floor next to it in darkness to vomit. You feel the floor and the walls to make it there in the dark, and sometimes you have to crawl. Sometimes it is easier to lie on the bathroom floor so you have easy access. Sometimes the pain makes you feel like you are actually going to pass out.
Then the stabbing comes, as if someone is driving a knife into the side of your skull. You cry and beg for it to stop. You plead and are willing to make a bargain just to get out of it. It gets so bad to the point you ask God to take you in your sleep, if you are able to get any at all. Although your desperate cries cannot be heard and you are stuck in the migraine nightmare. It’s not just a bad headache or a really bad hangover, it is a hell you cannot escape. It is completely isolating.
I think to myself, is this what solitary confinement feels like but with severe, disabling pain? My mom comes up every once in a while to check on me and bring water or hot tea. ‘Just slide it under the door,’ I think to myself as I feel like I am a prisoner of my migraine. I am on a mission to break out of the migraine prison and I am not giving up on the great escape.
I wrote the above just short of three years into my recovery. A lot has changed since then. My first pair of brain glasses, which I transitioned into from September to November, served their purpose and laid a good foundation for my brain. I had improvement in a lot of symptoms, which I will eventually describe in full detail. I returned to the Mind Eye Institute in November to determine my new lens prescription, but due to my health setback in December, I have not worn any brain glasses since November. As I became ill when I should have started the transition into the second pair of glasses, I was unable.
Due to this setback and my inability to wear my brain glasses, which were truly helping my symptoms and other aspects of my health, it set me back even further and my brain regressed. Many of the symptoms improved with the first pair of glasses have since returned. With this said, my brainwear plan changed, and I had to recently start from scratch.
The first transition into the glasses was filled with pain and anguish as the symptoms produced during my brain’s big adjustment were debilitating. I am reminded of how difficult the first transition was as I start my transition into my second pair. The transition during my first phase became easier around week 4-5, so I am confident this will improve in a month or hopefully less as my brain adjusts and re-builds healthy connections!
While I still suffer from daily headaches, which have ramped up again from the brainwear transition, the migraines that became less and less frequent are staying away. Seven months later, I am hesitant but happy to report I have broken out of the chronic migraine prison which seemed unattainable for years. It brings me to tears as I write this. It is liberating. The many times I felt like giving up, where I felt it wouldn’t get better, I kept pushing and it did get better.
Thanks to a lot of support from many people, having faith, and a select few excellent doctors in my corner who didn’t give up on me, I am where I am today. This is truly something I couldn’t picture just seven months ago. Now, back to my comeback…”
This story was submitted to Love What Matters by Drew Chernisky from Cleveland, Ohio. You can follow her journey on her website and Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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