Hi everyone 👋 sorry for the heavy topic! Take a deep breath and make sure you're okay to go on!
Initially I wanted to just rant and rave about how unfair my current situation is and how my care providers aren't taking me seriously, but after writing that version a few times and deleting it, I figured out what I actually wanted to write.
This is a difficult topic. The first time I was disagnosed with migraine, I was 13. I was assured that though they were severe and chronic that this was going to be an illness that I would leave behind in my childhood.
This idea didn't shake from my head until my second disagnosis of Chronic Hemiplegic Migraines at 17, when I realized I had just lost my job to my disability and this whole vision of myself as an abled person with "just a few weird, debilitating, headaches taking up weeks every month " died. That boy was buried. Even then as this Hemiplegic Migraine disagnosis washed over me, my nuerologist still tried to assure me that as I got older they would probably go away. But language was changing from "you will be fine" to "maybe one day I can take you off of your toperimate because your Migraines are mild"
That feeling of decline in ability is what I want to talk about today as I face it again.
I think that, for alot of migraine sufferers we have these moments in our life post disagnosis where we just feel like we've gone downhill in our health steadily. The toperimate can be nasty, causing horrible side effects that your doctors forget you have no matter how much you remind them, but for some of us it's too dangerous to come off.
For others, the Migraines themselves can cause nuerological changes. It's rare, but, another time this feeling of decline struck me was after a particularly bad couple of Hemiplegic Migraine filled months, after which I noticed a spot in my vision wouldn't go away. I was besides myself. I didn't think my episodic condition could hurt me outside the episodes! But my aura persisted and my doctor didn't seem very shocked. He understood my condition was severe and complications happen from severe Migraines like persistent aura. He told me that it does happen, but we don't understand it very well yet. It could last a few hours, a few months, forever, he had no clue. He had one patient that was going on a few years of visual aura. I got used to it after a while, an before I knew it the little shining spot vanished. I felt lucky, but also afraid.
These days it feels like my luck might have run out. After an Olfactory Migraine and a build up of a few classical Migraines and off nuerological symptoms, I feel in my heart that something up there has really changed this time. My neuro isn't taking me seriously because I'm 21, but I've developed a permanent speech issue since the migraine as well as the smell hasn't gone back to normal. I've been experiencing very low focus and sensory tolerance as well as a general feeling of haze and absence when I'm doing things that don't involve visual/motor or identity recall (I can talk about myself, date of birth, address etc very clearly and lucidly discuss what I feel is wrong) all this minus I have a very distinct issue when I start to get worked up in the slightest where I forget the context of my previous word entirely, it's a very scary feeling of loss where the moment stretches out forever as I try to fill in the sentence resulting in a structure such as " (word)_________(word)_____uh,____________(word)" it's not the usual way I have word salad during a hemipeligic Migraine for example where my brain remembers the context and just fills in the wrong word with confidence "Have you listened the uh, sorry not that, the, no, I mean the, listened a, " which I'm also struggling with except it's not "word salad" it's actively the word I'm trying not to say/trying to say isn't included. Example, " no, you're right, I know you said you're allergic to tylonol I'm trying very hard to say there is no tylonol in the medicine, it's just tylonol. No, it's not, sorry, it's just tylonol.(repeated no matter how hard I try to say the active ingredient that is, in reality citrizine and I know this and am trying to say this but because I'm trying to say there's no tylonol, I'm saying it's made of tylonol.)
Needless to say these changes are very concerning to me but I think It's quite relatable, being a migraineur (I believe that's the term correct me if I'm wrong lol) and having nobody around you really understand how distressing the nuerological symptoms are.
If you notice that you're declining, it can be really scary. I want you to know that there's still brightness er, well, put your sunglasses on first. There we go champ. Didn't want to make you photosensitive. There's still brightness in your life even if your level of ability is decreasing. I know there are areas of interest I never would have gotten into without my shitty head.
Obligatory sunny note to let you all know I'm not all doom and gloom over, if you've faced any nuerological declines surrounding migraine and are comfortable sharing any piece of that story, or advice, I'd love to hear.