We had been following The Election – you know, the one billed as the most important in decades – for months. Sifted thru dozens of mailings. Watched all the debates. Read article after article. Signed petition after petition. Seen hundreds of facebook postings about it.
It had all come down to this moment.
We were psyched!!!
Election night!
And I utterly ruined it, for both of us!
But, in exploring what happened, I learned some valuable things that will help me, and also might help you, if you have migraines.
Let me explain…
It had been a long day.
First, voting – so important in this battleground state.
Then, Rhiannon & I headed to town for some errands. We stayed out a bit longer than we should have.
I was really tired when I climbed into bed & turned on CNN.
Generally speaking, I don’t watch TV anymore – too many migraines. Back when I could, though, I had designed & had had built a combination bed/storage loft/entertainment center. A very big TV resides right at the end of my bed, along with the Tivo DVR, DVD player, etc (this will matter later).
So there I was, exhausted but excited, anxiously watching the Red states & Blue states come up on the screen as CNN discussed them (this, too, will matter).
I had previously paused the DVR for 30 minutes so I could fast forward through commercials, but they weren’t having too many. As it neared 11:30PM, I started fast forwarding on the slowest setting, so I could follow along with what states they were calling for which candidate (this will matter a lot).
A succession of Blue & Red states flashed over the screen faster as I watched, and then I spotted the announcement we’d been waiting months for:
CNN was projecting a winner in the Presidential Election!
“Rhiannon, you’ve got to see this!!!” I called.
Rhiannon has been following the election as closely as I have, and I re-wound it a bit so we could see the crucial moment together.
Nausea, dizziness, and double-vision suddenly rose up out of nowhere as I hit PLAY on the remote. My eyelids wouldn’t stay open and I felt extremely confused.
Rhiannon watched the announcement, and turned happily to me, only to find…
I was out like a light.
But I had been talking to her a moment before… wtf? So she called my name, and my eyelids fluttered & I mumbled. Alarmed, she yelled:
“MOM!!!”
I remember that – the concern in her voice, the fear. The rest of the next hour is pretty dang hazy. Some things I remembered after Rhiannon reminded me, but some things are a total blank.
Rhiannon took charge – she knows I have Neurally Mediated Hypotension (POTS), so she thought maybe my blood pressure had tanked. She loudly demanded to know where my blood pressure machine was, and I was able to point to the side of the bed… barely.
My arm was limp when she took it and pulled up my sleeve & took my bp. It was low, but has certainly been lower without causing unconsciousness.
I slowly started to be able to keep my eyes open more, to respond more clearly. I was only totally out of it for about 3 or 4 minutes.
But the incredibly distorted double-vision, dizziness, nausea, difficulty staying awake, incoordination, and impaired cognitive functioning, stuck around, slowly dissipating over the next hour.
By the time Romney gave his concession speech, I was back to “my normal,” and pretty sure what had happened.
I reassured the very concerned (to put it lightly) Rhiannon that I was okay, and that I thought it was “just a seizure… and I’ve had them before, although not for years.”
I’ve never been diagnosed with a seizure disorder or epilepsy. But some years back, the last time was likely in 2006, I had several similiar episodes. They did the whole workup – EEG, MRI, etc, and came up with nothing, so it never got officially diagnosed.
Some reading over at The Epilepsy Foundation helped me understand why it happened just then, just that night, and why it was always before at night, too, always when I was watching TV using the DVR.
It seems that some people are prone to seizures only when under certain visual stimuli – flashing lights, in particular. And even more particular (and fascinating), the colors red & blue are known to stimulate seizures more often than any other colors.
Remember how I said my TV’s location mattered? Well, it does. It takes up a lot of my visual field. And, it was dark in the room behind it, so there was a lot of contrast between the brightness of the TV and the surrounding area.
Just as important is the number of flashes per minute, and I was fast forwarding through the DVR on its slowest setting, while those red & blue states flashed up & down on the screen.
All things that mattered, as did the fact I was already exhausted from having been out that day. A perfect storm for a photosensitive seizure.
Interestingly, photosensitive seizures are related to photosensitive migraines.
They both seem to involve an overload in the visual processing center, although how this works is poorly understood.
Flickering or flashing lights can trigger a migraine or make one worse for many more people than will have photosensitive seizures – and not just from TV’s, of course. Flickering fluorescent lights, computer screens, or natural light can all cause problems.
The sun flickering through the trees as I drive or ride in the car drives me absolutely nuts, and can quickly trigger a migraine, or make an existing migraine much worse.
I’m going to try this simple trick to see if it helps with my migraine photosensitivity:
Cover one eye (either one) with one hand until the stimulus is over. Closing both eyes or turning your eyes in another direction will not help.
– from The Epilepsy Foundation – Photosensitivity and Seizures
This reduces the field of vision by 50%.
And, as is further explained:
Monocular vision (covering one eye) is a most useful practice because it works in most circumstances and still allows the subject to see. It is important to know that just closing the eyes does not prevent photosensitive reactions because the red-tinted light filtering through the eyelids will be just as provocative, if not more.
– from Shedding Light On Photosensitivity
The other thing I learned was that if you have a seizure and have not been diagnosed with a seizure disorder, you will be asked repeatedly by every person you speak with at your doctor’s office why you didn’t go to the ER or call 911. I couldn’t exactly drive myself, and Rhiannon did have her phone in hand contemplating the call.
But I was “out” only a few minutes, and recognised the feeling from previous experience – and told her I was okay. I did go to the doctor yesterday, and they’ve drawn blood for labs, but by the time I got there I had already diagnosed it myself as a photosensitive seizure. I’m to follow-up with my neurologist & get an EEG.
So, while my unexpected reaction to the Election results pretty much ruined the evening for us, it did provide an opportunity for me to learn not just about seizures, but also photosensitivity in general. This might help me and, hopefully, others, as we struggle with our migraines. Everything happens for a reason…
Cripes, Ash! I’m glad you at least knew what it was and didn’t have to haul off to the hospital after all that. I don’t get migraines, and I’ve never had a seizure, but flashy stuff is problematic for me too. I have to be careful where I wander on the internet, because it’s like throwing a wrench into the works of my brain – it flips out, stops working, and goes into insta-panic mode.
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Poor Rhiannon and poor you. What a scare. And of course so like Rhiannon to do the perfect thing and for you to point to the blood pressure was and for Rhia to know to take it. Lord, I won’t stop worrying about you Ash, but you do seem to learn a lot as you go on. I’ll give you that. I thought in the beginning maybe the election returns were affecting you…..but after that I knew you would recover. Maybe you should keep snacks around you for your BP. I have very low BP and often feel “fainty” if I get up too fast, I never have passed out but I always feel I am about to. Let’s try for a little tranquility for all us girls/sisters/friends. Love and hugs, Laurie
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Yes, I like that – trying for a little tranquility for all of us!
Rhiannon was great! We decided I needed to be up & moving in order to get my BP up in case that was involved, and she helped me out of the bed & shadowed me down the hall. I couldn’t see hardly anything as the double vision was so bad, and I was very wobbly. But she kept a very close eye on me as I slowly improved, monitoring while weighing the decision to call for help. Pretty freaky experience, but once I read about photosensitive seizures I knew that was the issue, and was relieved.
On the subject of BP, Laurie, have you had a tilt table test? Many of us (perhaps almost all of us) with ME/CFS and many with FMS have Neurally Mediated Hypotension, or as it’s sometimes called, POTS (Postural Orthostatic Tachycardia Syndrome), or just OI (Orthostatic Intolerance). The gist of these is that your bp drops when you get up, you often get dizzy or feel faint at that time, etc. This can actually impact your fatigue a LOT. There is a treatment for it, Florinef, and I have been on it since 1999. I only take it now every couple weeks, but took it daily for years, and it did really help. One cause of NMH/POTS/OI is low blood volume – simply not enough blood in your body, so the heart has to work harder and your muscles don’t get enough oxygen. The florinef fixes that.
*gentle hugs*
Ash
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Hi Ash, I’m glad I finally came to read a little, but I was scared while reading. I am so glad you are okay. And a big big hug to Rhiannon for being such a wonderful nurse. I wonder, just as I write, is she has ever considered taking some type of course to learn a natural healing art, such as massage therapy or acupuncture. Was just a passing thought.
I’ve read about the TV triggering seizures. Tiny doesn’t like TV and almost every time he’s had a seizure was when it was on. If we turn it on, he walks into the bedroom, or he used to. He lies on his bed mostly these days.
I was scared you had a heart attack. I feel that way so often. I have low BP, and sometimes, dangerously low. Sometimes my heart rate goes too high while my BP goes so low. I get sick, confused, dizzy and have blurry vision. I think something happened in my brain in 2009, while recovering from the abuse I endured from a severe narcissist. Then had a bike accident, and then cut two fingers almost off in Jan 2010. Was all horrible, leading to a hospital visit on Easter, 2010, with a heart rate at 39/minute. Stayed that way for days. I haven’t been the same since. I think I had a mild stroke.
I just went to eye doc and they are so uneducated about CFS/fibromyalgia it is horrible. Esp., since it is such a ——can’t spell my word. sigh… It means top notch.
I really am glad you are okay!!! I’m sending you both virtual hugs and my love.
Your friend, Michelle.
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