Hemiplegic Migraine… I was 37 before I heard those words for the First Time [Ever]. This is regardless to the fact I’d actually been Suffering (oh, and I MEAN Suffering) with it for the past 20 years — since I was 17 years old and had my first “Stroke” [-like HM Attack].
I was hospitalised for a few days. Was checked out. Didn’t find “anything wrong” [ha! Story of my LIFE!]… And — No Shit of a Lie, by the CONSULTANT NEUROLOGIST … I had Hysterical Paralysis and I needed to see The Mental Health Team.
And Then, Discharged.
The Late 1990s was NOT Kind To Kids [or anyone] with “Mental Illness” [say it derogatorily, to get the best effect… It’s almost like you’re Right There all over again…].
A Vulnerable 17 year old, not long out of a Mental Health Unit for Trauma & Panic Attacks & Social/”School” Phobia, Discharged with a Dangerous Label and NO FREAKING IDEA. Oh, and Paralysed Down One Side, subsequently Confined to a Wheelchair literally overnight from what happened.
For about the Next Three Months.
Learning To Deal (…but not heal)
It got fixed by an Osteopath. After about three appointments, whatever he did, undid the Neuropathy, and I managed to walk again. For a while, years, I’d have to keep going back because it Triggered. Again. [And Again, and Again, and Again… yeh. you get the idea.]
That Label Suck. In. My. Head. …For The NEXT 20 YEARS. [So] I sought NO Other Diagnostics, except for one MRI scan, when they finally got a Mobile one for [all of] North Wales when I was 18. My Mam always then Joked she was proven right when they looked at the MRI of my brain and “Found Nothing” (Doc’s Actual Words! Brilliant!… My Brain: Deadpan — Yep. He Went There..!!!). But that was the most important thing — they found nothing.
Even with the MRI though, I was Just Thinking…What was the POINT when Everybody Just ASSUMED I Was “Simply Bat Crap Crazy?? (and I just did the MRI for my own peace of mind, so I could KNOW it wasn’t something Disastrous)
I was already Downright Terrified of ALL Medical & Mental Health EVERYONE by then. So I Just Leaned To Live With It.
One More Weird Thing About Me…
The Paralysis Just Came & Went As It Pleased: Became a part of Everyday Life. Most times, Osteopaths could fix it, so I always figured that maybe because a horse-riding accident when I was 16 caused some kind of minor damage to my neck, and then also to add to that, my lumbar area was already buggered with deteriorating discs (that was from age 13), so they probably just kept… upsetting the CNS nerves and triggering these (what I now know to be HM) Attacks.
I mean, I didn’t know it was Hemiplegic Migraine, but I did come to the conclusion it had to come with some kind of nerve damage or the unstable vertebrae pressing/agitating the CNS in some way, of some kind. So, Points To Me for basic deduction being basically kinda right. (!)
Then… Came Fibromyalgia... And My Legs Just Slowly Stopped Being Able To Walk. Literally NOTHING Explained My Symptoms Better Than Two Dreaded Letters… MS.
I Freaked and INSISTED on it being Ruled In Or Out (My Brain: PleaseRuleItOutPleaseRuleItOutPleaseRuleItOut……!!!!!)
… I WAS SO FREAKING RELIEVED THEY TOLD ME IT WAS OFF THE TABLE…
Problem with that though… Was STILL NO ANSWERS.
So. It All Got WORSE. My Life Unravelled FAST. I was No Longer a trail-blazing Female-Goth-and-Proud-Of-It IT Consultant working on a MEGA NHS Data Migration Project for their Internal Patient Database System… I was a Pain-Filled, Screaming, Crying NOTHING… A Soulless Entity in a body trying to kill her…
Eventually, my legs finally got to the Point Of No Return, and in January 2017, I had to sit at the bottom of the steps, crying with despair, knowing I was never going back up there again on my own. I had to move into the Parlour, until my Parents bought a Stair-Lift for the house, and I got to live upstairs again.
A 30-something ex-Career-Girl. Disabled. Finally Totally Paralysed. Living with Parents & having to let them stuff their credit cards full of Disability Things For Me.
They then Paid Up For My First Wheelchair [ex-Demo found at Cyclone Mobility, that was shockingly about 97% Perfect, and the AMAZING guys there who took sympathy on me and helped SO Much] whilst I was busy waiting for the NHS to get off their backsides and get mine into a Proper Made-to-Measure One.
And Musty (GMT Mustang) did me good till I could get Kushtie (Kuschall) from the local NHS Disability Aids department — and BOY! Did They Come Through!… And Since May 2018, Kushtie has been My Baby, My Ride, My Guy, My “Round Legs”, My Chariot, My Everything…
But…. Before I got That Far… I Fought HARD To Get The Answer To WHY… WHY This Was Happening To Me… I HAD To Have An Answer.
After Nearly Four Years Of SEVERE Deterioration, and losing the ENTIRE Ability to Use/ Feel/ Move/ ANYTHING my legs…
I see the Neurologist that Literally RE-WROTE MY ENTIRE ADULT LIFE. AGAIN.
[The Guy Who Formally Authenticated My Autistic Brain Was The First One, about 3 years earlier.]
He listened to EVERYTHING.
(My Brain: Everything. Stops. Internal Blank STARE… All Whited Out… and… …)
I SAY, “… EH?????!”
Unbeknownst to me… He Explains… My “Regular” Headache-Style Migraines didn’t just Disappear when I was about 16-ish.
I didn’t “Grow out of them“, like I had Imagined. No.
It. Turned. Into. This.
(My Brain: Everything. Stops. Internal Blank STARE… All Whited Out… and… …)
I SAY, “… EH?????!” … Then… “Well. That explains a LOT of Things….”
(My Brain: … Everything. Stops. Internal Blank STARE… All Whited Out… … … Then …
… WHAT. THE. ACTUAL. EVERLASTING.
However, It Wasn’t EXPLAINED TO ME. Still HASN’T… FIVE YEARS LATER [at time of writing]. It was even only in writing this Page, I found the NHS Pamphlet … And they SHOULD HAVE SHOWN IT TO ME.
Hell, I even contacted the Migraine Trust — again, in 2017 [look at the bottom of the Pamphlet and you see them as part of the Bibliography, 2010] — and all they did was Copy & Paste the same Nothing they had on their website about it [at the time]…It Baffled Me?!!
FIVE YEARS LATER…. BIG DIFFERENCE… LOADS of Info. It’s Crawling with Info. In 2017? It was a Couple of Paragraphs, that’s it.
This… This NHS PDF Pamphlet Wasn’t Available When I
First Started Getting Symptoms in the Late 90s…
BUT… This Pamphlet the Button & This Link goes to… was published by the NHS in 2010.
I got my Diagnosis in 2017 — and no one ever told me THIS was available to Read.
Wasn’t HANDED ONE. Or Even TOLD of its Existence. Despite it being published 7 Years Earlier.
So… Here It Is …. For Someone Else To Find
I’d had “Normal” Migraines (so thought of by me, cos I’d had NO idea it came in any other form other than Cluster Headaches…!), Headache Migraines, my entire childhood.
With a MEGA One at about 8yo, I finally got my unofficially official diagnosis made my Nain [grandmother; Welsh — and also a former Nurse] (finally?) clock onto the fact that I suffered with Migraines and that was why I said I was constantly “unwell” and had “headaches“.
She’d had them herself almost forever, so as soon as she saw the Mega Attack symptoms were Classic to a Migraine Attack, it was a no-brainer for her.
If felt like everything triggered them — but Chocolate was the Worst, alongside Eggs, and MSG (which in the 80s & 90s was in FREAKING EVERYTHING Edible!) as a Flavour Enhancer — Specifically E621 (but not in its “natural” form, apparently, which was also common in Migraine Sufferers).
Then it was found OTHER E-Numbers were culprits too (I once really did go bat-crap crazy this one time, at about 11yo, after drinking Lilt, which had more E-s in it than a Book). There were SO many I was sensitive to, we [me & Mam] decided ALL of them just simply needed to be avoided for safety, or No More Than 2 “Known-OK” ones, which were natural derivatives of natural foods given an E-Number for whatever Classification they used for Foods.
FOOD was the main problem point for me… But Stress was also an obvious trigger, but less prone to being a hair-trigger like the others. Even some Random Smells can [still!] bring them on.
So, once I figured this minefield out & got used to reflex-action checking the Ingredients of EVERYTHING First… I was On-and-On OK, with less and less Major Occurrences; but with new things cropping up out of nowhere every now and again. And the Worst Culprit, after that, being Stress… Which I had in Landfill-size Trucks at the time (aged 12-16yo).
At around 16yrs onwards, I don’t really remember having a “Normal” Migraine. The Mental Health Unit I was in changed locations at my 16th Birthday… And although I did have Many Migraines in the Old Place, I can’t remember A Single One in the New One.
In fact, the only headaches I had after that were down to having Concussion from my Riding Accident which happened about maybe a Month after we moved.
Oh, and come to think of it (this just hit me… bear with me whilst the memories pop up out of nowhere…[!]) — I used to be eating Egg Mayo Sandwiches almost every day after we [all at the Mental Health Unit] moved, because they didn’t have a proper kitchen there, like the other one: All the food requests were more like Hospital, then, and it wasn’t nice anymore.
Anyway… Point Being... There was NO Way In any of the Ten Circles of Hell (I think I’m on the 11th by now… Possibly 12th…??) that I could have eaten ONE without a Migraine, let alone All The Time, before.
So — It Must have Gone/ Changed by then. Weird…..(!!!!)