Hello, My Name is Crystal, and I suffer from Vestibular Migraines

Hey! 

I'm Crystal, and I pen the Sewing Unicorn. 

Beyond sewing, I'm usually up to crafting up something weird, like crocheting Star Wars characters, or making Fimo Clay Fairy Garden Creatures...you know, normal stuff someone who isn't quite 40 years old does. 

I paint murals throughout our home, and am also a champ at using a chop saw and drill. 

I'm not afraid to get dirty. 

I have a passion for our Rhodesian Ridgebacks, and am just about as nutty as our trio of parrots - Merlin, Stryder, and jerky Rosco. 

 

Merlin and I have been together more than half my life, and right now I am SO thankful I chose "quiet" non-ear-piercing parrots when I worked with them in the early 2000's. 

Little did I know that I'd start the awesomely scary journey over the last year. 

I had my Chronic Fatigue Syndrome down to an art. I could deal with it daily after 14 years. I didn't wish it upon anyone, but I made it through the fog cloud into making it through the day without collapsing or needing to nap in the car at lunch. 

Then shit hit the fan July 2017. 

I got a migraine. The pounding would not go away, and at day 4, I went to my doctor for relief. 

I don't go to the doctor unless necessary - not wanting to be a burden on the system. 

And I'd dealt with headaches on and off - with the ability to keep them at bay with Tylenol Migraine green capsule things. 

It didn't work this time. 

My doctor gave me a prescription pill for next time, however, advised it wouldn't work that day, as I had to take it within a few hours of when the pounding started. 

It was another 2-3 days before the throbbing went away. 

2 weeks later, I felt that pounding, and was able to hold off on another week of pain with that fancy new pill. 

Mid September, both of my legs started tingling at camp. By the next day, I was in pain and could barely walk. 

I spent that week, thankfully, working from home - my boss was super understanding, and would rather me be healthy, and knew I had the ability and independence to work on my own. 

I needed a cane to walk, and was alternating hot and cold - my legs were so swollen and tingly...it was pretty scary. 

A month later, as I was excitedly preparing for a Zombie Run taking place in Pembroke with a new friend, the same thing happened  - it took 2 weeks before I was fully recovered and walking semi-normally. 

And I lost that "friend," as despite giving a week's notice that I couldn't walk, let alone train for a run, that she had to go it alone. I felt awful that I had to let her down, but was rather frustrated that my week's notice wasn't enough. 

Anyone who knows me knows I don't bail on things unless it's truly warranted - especially when I pay for it (running races = paying entry fee). I'm frugal like that. 

Plus I really wanted to dress up like Snow White Zombie! And walk without pain and get rid of my supreme brain fog and slurred speech - yeah, that started happening too. And it wasn't from alcohol. 

At least I made a cool Hallowe'en costume out of that life event. 

You always have to see the positive out of a negative situation, right?!?!

November was okay with the occasional, "numb face," as I so lovingly refer to it - it feels like when your face is numb at the dentist. 

By December, I was getting numb face All f*n day long. 

I was napping at lunch.

My migraine pills were no longer effective - I had NO relief. 

I had vials of blood taken, and monthly visits with my family doctor at this point. 

By February, my symptom list had exploded. And my Doctor was afraid I might have Multiple Sclerosis. 

I couldn't breathe when he told me that. 

Then he sent me for an MRI for a brain and spinal scan. 

He wanted me to get a cellular level blood test, but I found out at the blood clinic that neither OHIP nor my work Employee Health plan covered it. A $500 test that could eliminate so many diseases, and prevent more years of bandaids to treat symptoms over the cause of my symptoms. 

So we waited on that test, and I opted for just the MRI, and if it proved inconclusive (or conclusive), I'd follow up with the cellular level testing. 

The month waiting for the results was pretty awful. My symptoms got worse, and I had to hold onto the walls in the office to get around. I started wearing a baseball cap and sunglasses - this full blown daily vertigo happened for 4 weeks straight before I requested to work from home full time until proper treatment ensued, and my symptoms stabilized from my rollercoaster state. 

I looked like the Unibomber, or a Celebrity hiding in the office with my horrible protective gear - they were rather useless in helping curb my symptoms. 

What are my "new normal," symptoms? Well, some of them are below, but there are more I haven't detailed as well:

- Dizziness 24 hours a day

- I feel like I'm on a swaying boat - I even sway while I'm standing upright - especially when I'm standing upright

- Disassociation - I feel like I'm here...but not really here - kind of like I'm floating from place to place

- Photophobia - light is NOT my friend - especially LED and fluorescent lights - they can instantly cause a pounding headache to go from bearable to nauseating in under a minute, and is the current bane of my existence - it has disabled me from my life as I knew it

- Misophonia - Sounds make me angry (ok I had this before, but it's linked to migraines as well) - I must control the sounds in my environment moreso now than ever

- Sore neck - not just a sore neck, but constant throbbing and pain - I can do my neck yoga 4 times a day, my physio stretches, and so on...the pain never leaves me

- Brain fog - forgetting simple words (even mid sentence), being in the middle of a task and forgetting what I'm doing, Having no idea what I'm doing - it's really scary at times.

- My arms will numb out - they'll get tingly - especially from my fingers to elbow

- Numb face - this happens especially if I'm stressed out or thinking too hard. Yes, thinking makes me worse *sigh*

- Weakness - my legs will give out on me without notice

- Nausea - goes along with when I have actual head pounding and/or vertigo

- Vertigo - you spin me right round wrong round

- "headaches," - I hate when people call my head pounding a "headache," - I wish it were JUST a headache. My head pounding lasts for days on end. If I don't catch it in time with anti-migraine medication, it can go on for a day or 7 days - it's awful.  I can usually grin and half assed bare it until day 3 or 4, when I need to tap out from screen time and life all together. My threshold only goes so long

- Head pounding ranges from pulsing, to a headband clamp, to hammering

- Heart palpations - my heart jumps around a lot sometimes and literally takes my breath away

- Driving...I can get from point a to b, but the LED lights from other cars and windy rounds can really start my vertigo up. Going to camp now, Husband drives and I put a hoodie on, close my eyes, and don't look. The view from the side of my eyes - fast movements - causes nausea and vertigo

- I can't watch anything rotating or fast moving on TV - and You Tube videos (you know, the ones where someone is taping themselves doing something) - the most recent one is why I'm on day...4 of pulsating migraine - nauseating I want to die under a rock day

- Fast movements set me off - like Husband will be cute and wiggle or dance, and I have to look away - I just can't 

- 24 hours a day Tinnitus (ear ringing)

- Fireworks in my vision

- Being social longer than an hour or two can trigger an "episode,"

- Severe depression - I've lost my unicorn, sparkle, and jazz hands

So needless to say, if I have one or two beers on the weekend, that's all the dizzy I can add onto my endless spinning plate. 

I'm alone all day. If Husband goes out after work, I'm alone at night (but his social life should suffer because of me, so I encourage it). 

I can't describe what's happened to me in ways that most people can understand. 

Before I started suffering from and was formally diagnosed with (last week) Chronic Migraines...I really didn't understand how someone with a migraine felt.

Albeit, I'd rather the occasional Migraine that lasts a week vs the daily annoyances that have turned my world upside down. 

I can't ride my bike, as I can't look to the side while pedaling - it makes me dizzier. 

I can't balance well enough for Downward Dog, a Plank, or Warrior 3. 

Before Migraines

I can't really handle social situations for long - a couple hours at the most before I really just want to nap. 

My face is constantly numb - the pressure really hurts a lot, and makes it harder to focus my eyes. 

I cry. A lot. I'm so frustrated, alone in my thoughts, and just waiting. Waiting to feel somewhat better. Waiting to stop rocking the boat. 

It takes me twice as long to do my work as it used to, as I'm trying to recall the steps I need to take to do my job properly.  An easy task can easily become cumbersome if I can't remember a process. And I can't really multi task very well at the moment - brain drain!

I can do things - at half the capacity of old-Crystal. 

I can walk one dog for half an hour at lunch time - when my head isn't pounding.

I spend less time online - thus more time with Husband and the boys (aka our zoo) - as working on the computer all day drains me due to having to focus twice as hard as normal.

I can sew for short periods of time. Only really long seams bother me. I also get confused by sewing instructions if they aren't 100% clear. I can sit looking at a step for 20 minutes that used to take me maybe 5 minutes to comprehend before. 

I prefer slothing around more. Anyone who knows me, knows I don't sit still and always have a project or two on the go. 

Walking into a normal store, office, commercial building...sets off my vertigo - they all have LED and fluorescent lighting that my brain just cannot compute properly, sending it into overload.  Grocery shopping, even with my Thermaspecs (which insurance didn't cover either...$200 out of my pocket for some relief for my eyes). 

Heck, even the doctors offices - my family doctor has fluorescent lighting, and he still insists on turning the light on after I turn it off in the little office. And the neurologist...they had wavy carpet patterns and fluorescent overhead lighting. In less than an hour I was ready to upchuck my lunch, and I couldn't want a straight line.  

I am back to reading paper books, as screens just drain me. 

I can do up to 30 minutes of extremely modified yoga. It's not pretty, but I need to do this daily, as I'm not walking most of the day. 

I work at home for now - the lighting in the office won't change, and my main trigger still hasn't changed. I like it some days, but it's really isolating. And depressing. But then I hear about the shenanigans in the office, and it sounds depressing, so I don't know which would be better at bringing my Unicorn back. 

I feel fortunate that I have the option to work from home (for now). Otherwise, I'd be off work. I wouldn't of survived much longer in the office. I cried in my car every day for several weeks before driving home. I couldn't take the enhanced symptoms while in the office. 

Who knew lighting would have such an effect on the brain??

I have pounding migraines 15-17 days of the month. The remaining days, I have the previously listed symptoms most of the time. 

I just met one of my two assigned Neurologists last week. He diagnosed my Chronic Migraines, and prescribed me an anti-migraine pill which I can only take up to twice a week, within an hour of feeling a pounding migraine coming on. So I have to gage early on if it's going to be a doozy level 8-9 migraine, or only a level 5. 

I'm also starting Beta Blockers. So far, 5 days in, I'm 5 days into a Migraine I tried to fend off early on and failed. 

These are for my "headache," and he couldn't confirm whether or not it would alleviate my boat swaying life. 

At first I thought the appointment went well...but the more I think about it...what about my imbalance? Dizziness? Tinnitus? Does putting my migraines at rest put these symptoms at rest too? He didn't know, and I don't know. A week in, and I'm just coming out of this last pounding nauseating episode. 

I meet him again in 3 months. 

I'm being referred to an actual Sleep Doctor as well, and meet my second Neurologist in January of 2019. 

I want my life back. 

I want to stop feeling dizzy. 

I want the pain to stop. 

I want to find my Unicorn, Jazz Hands, and Happiness again. 

I want to stop feeling so hopeless. 

Until then, I'll paste a fake smile on my face, and keep going as I always do. I just keep going. I can't let my health rule my life. I can't let it win. 

So, the next time someone says they are suffering from a migraine, empathize and don't downplay how they are feeling.  

If someone's walking like a drunkard into the office at 7am...maybe they are suffering from vertigo and imbalance. 

Or maybe they're just hung over. 

They could be suffering and trying to mask the pain. You just never know.