Month: March 2017

What It’s Like to Have a Visual Migraine (Scintillating Scotoma)

[This video, created by the Mayo Clinic, shows one representation of what a visual migraine, or scintillating scotoma, can look like.  Not all scintillating scotomas look like this, and they are not always associated with a migraine.]

WARNING: If you have no history of migraine headaches and you experience a scintillating scotoma, you should see your doctor, as this can be a sign of a serious health condition.

Scintillating scotomas are pretty trippy.  I’m glad I had read about them before one ever happened to me, or I might have been very concerned the first time I had one.

For people who have migraine with aura, there are other physical symptoms that go along with the excruciating headache.  A migraine is NOT just a “really bad headache” – it is a neurological event that can manifest in many different ways, such as cognitive impairment (brain fog) or dysfunction (unable to remember words); numbness, weakness, or tingling of body parts; balance and coordination problems; nausea; vomiting; fatigue; sensitivity to noise, light, odors, or touch; etc.

Please do not violate Wheaton’s Law and tell someone who suffers from migraines that you “sometimes get really bad headaches too.”  But I digress…

One symptom of migraine aura that some people are familiar with is visual disturbances.  These can be pretty spectacular.  [See some examples here. (No product endorsement implied.)]

Although I have had migraines for more than 15 years, I have only had 4 scintillating scotomas.  (In other words, it is not a common part of my migraine aura symptoms.)  The last two I have had happened while I was using my computer.  They began with slight blurriness – I wasn’t sure if my eyes were just tired, or my glasses were smudged, or something.  The blurriness starts out in a very small area, maybe the size of a dime in my field of view (but just on one side).

As I am determining what is causing the blurriness, I begin to notice that it’s actually a small blind spot.  And then when it begins to shimmer (usually at the same time I’m noticing the blind spot), I know for sure that I’m beginning to experience a scintillating scotoma.

Again, everyone’s experience is a bit different, but mine typically begin near the bottom of my field of view, and gradually the affected area expands and also moves slowly from the bottom of my field of view to the top of my field of view, then moves so far up that I can’t see it anymore.

I have experienced scintillating scotomas in each eye (they’re actually happening in my brain, but I’m describing the visual representation I perceive), but my scotomas never appear to be in the center of my field of view, or as if they are affecting both eyes at once.

In addition to the increasing blind spot and surrounding shimmering, I typically see jagged, zigzag designs around the perimeter of the spot.  My last scotoma was more bold geometric shapes than zigzags.  This portion of the image is colorful (reds, blues, greens, yellows), whereas the shimmery part is white/silver.

People who experience scintillating scotomas often describe the shape as a “backwards C.”  And I have had scotomas shaped like that.  But I think the shapes can vary.  My last one seemed more circular, with the shapes all the way around it, rather than just on one side.

The scotoma itself is not painful, in my experience.  Of course, it does disrupt whatever you are attempting to do visually.  (I had my first one right after sliding behind the steering wheel of the car one day – just sat there at the side of the road until it passed.)

The first two I experienced only lasted 10-15 minutes, but the last two have been closer to a half hour.  I find that I can see them better in the dark, and they’re really entertaining to watch (I guess I’m easily amused), so I now go into a dark room, lie back, close my eyes, and watch the show.

Of course, I typically get a raging migraine headache afterward, so I also take my migraine treatment medications at the beginning of the scotoma experience.  That’s trippy too – try walking through your house to get to your medicine cabinet with a blind spot in your field of view and possibly some balance issues too.  Then try finding your meds and taking them when you can’t really see what you’re doing due to an enlarging blind spot.

After a scintillating scotoma, some people get migraine headaches, some people don’t get the headache every time, and some people feel very weak or tired.

After the event, my vision returns to normal, although everything may seem a little blurry for a little while right afterward.  Since it’s actually happening in your brain, there are no effects on your actual eyes.

During my most recent scotoma, the headache actually started during the scotoma, and my tinnitus got very loud as well during the scotoma, but then decreased significantly afterward.  After the shimmering part and the colored shapes had disappeared, I still had a blind spot for about 5 minutes.  Then some general blurriness, and then my vision was basically normal, although I was very light-sensitive due to the migraine.

Again, blind spots can be caused by other things, such as a retinal or optical nerve issue, so please talk to your doctor if you experience a scintillating scotoma, or a non-scintillating scotoma.

But if you experience scintillating scotoma as part of a migraine prodrome, you can probably just take your migraine treatment drugs, relax, and enjoy the show before the headache begins.  That’s been my experience, anyway.

What have your experiences with scintillating scotoma been like?

 

Survival Minimalism: What Falls Away

Minimalism.  It’s a trend/movement that’s been picking up steam for at least a decade.

People are attracted to minimalism for many reasons.

Some accidentally – they travel with just a backpack, and decide life is better with less baggage.  But some become minimalists out of sheer survival – because their health is so poor they just can’t continue to live life the way they used to.

A smaller house/apartment, fewer things to maintain – choosing to downsize can make life easier to handle logistically and financially.  It can also make life easier to handle psychologically.  But, in many ways, shedding possessions is the easier course of action.

Shedding commitments is much more difficult.

Duty.  Responsibility. Taking Care of Others.  Social Responsibility.  Civic Duty.  Family.  Friends.  Job.  Church.  Volunteerism.

We are so busy, in our current culture.  We pride ourselves on how busy we are.  We compete with others over how busy we are, as if that is a symbol of our worth.  We are human doings, not human beings.

Until.

Until we get the news, or the diagnosis.  Until something happens that alters our priorities and shifts our perspective.

Until we remember that the privilege of being is the most important thing.

For a very long time, I tried to keep doing all the things.  I got sicker and sicker because I tried to power through it.  I “couldn’t afford” to be sick.  I needed to fulfill my responsibilities at work – one hundred percent or more.  I  had to fulfill my commitments to my family, and friends, and to the organizations for which I volunteered, and to the kids I mentored, and, and, and…

And then I woke up one day and couldn’t do ANY of the things.

I couldn’t keep the plates spinning anymore.  And they slowly started crashing to the ground…

I fought it for a long time, even after that.  “I can’t keep them all spinning, but I should be able to keep these three spinning.”  CRASH!  “Surely I can keep these two spinning.”  CRASH!!  “Come on! I can keep at least ONE spinning, right?”  CRASH!!!

And then I wallowed, frustrated and unwilling to believe that I could do NONE of the things.

But facts do not change simply because we do not like them.

And the fact is that I am currently dealing with either severe allergies or an auto-immune disease (or both?).

And suddenly life is becoming much more simple, due to survival minimalism.

I used to find it very difficult to get rid of papers and books.  Although I have been trying for years to downsize and become more minimalist, books and papers were the challenge for me.

I love books.  I love physical books.  I have resisted getting an e-reader because I like to hold books in my hands, and write notes in the margins, and highlight important parts of them, and even mark reference sections with book darts.  Book darts.

I once lived out of a backpack for a year – worldly possessions in storage, traveling the world.  Know what I missed?  My books.

But now… I am allergic to book mold.  And possibly to dust as well.

And, suddenly, old books and old papers cause an allergic reaction that makes me ill – for days.

So now I am parting with books, and reducing the papers (currently in binders, and in filing cabinets, and in stacks).

I will most likely purchase a high-quality scanner, to save some of the information on those papers, and an e-reader, to replace some of those books.  And, although parting with the books makes me sad, it also feels like freedom.  I don’t dither anymore over whether to keep a book or a document.

It has become very simple: It all must go, because it makes me ill.

The same thing is happening with my diet (post pending).  I have passed through the mourning period for all the foods I can no longer have (pizza commercials were torture!).  Now I can watch food commercials on TV with disinterest.  Easy to do, when you know eating it will make you sick for days…

Likewise for social obligations.  Initially, I felt guilty for all the obligations I could no longer fulfill.  But the current reality is that I can’t leave my house without getting ill.  The outside world is BRIGHT, LOUD, and full of FRAGRANCE.  Not to mention ALLERGENS.  So, if it’s not critical to my health (doctors’ appointments), I’m not leaving the house.  Sorry, not sorry.  You’re welcome to come visit me, if you’re not wearing FRAGRANCE (that includes scented laundry detergents and fabric softeners).

It’s getting all Oregon Trail up in here.

Remember playing Oregon Trail, and starting out with all the items you thought were essential, but jettisoning more and more of those items as the trip went on?  Survival Minimalism.

“But that’s a Family Heirloom!” “The Indians are gaining on us – toss it overboard!”  “But that has sentimental value!”  “The oxen are too weak from thirst – leave it by the side of the trail.”  Survival Minimalism.

Priority Shift.  New Perspective.  Life suddenly becomes very simple.

Do.  Or Do Not.  It has become a no-brainer.

I’m letting go of the things that make me sick.

I don’t “should” on myself anymore.  I do what I can for others, and I let the rest go.

The world rushes on past, in its busyness, and I am here, in my quiet eddy, learning how to be.  Striving to be…healthy.

It’s a crucible, and all the non-essential things are being burned away.

Survival Minimalism.  It’s not for everyone, but it might be for you.

Medical Procedures: Trigger Finger (Steroid Injection) Update

Update: I developed trigger finger in the same pinky finger approximately 10-11 weeks after elbow surgery (approximately 8 months after the first steroid injection), when the post-surgery therapeutic exercises began to put more strain on my finger.  I mentioned to my occupational therapist (OT) that my pinky finger was swollen and stiff, and that the joint near the top of my palm (the metacarpophalangeal joint) was very tender, sore, and warm to the touch.

My OT remembered that that was the same finger in which I had previously had trigger finger, and made an appointment for me with my orthopedic surgeon to get another steroid injection.  My ortho injected the joint approximately 12 weeks post-surgery, and said that if trigger finger comes back a third time, he would consider a surgical treatment.

Hopefully this will not be necessary, as my third New Year’s Resolution, which I did not share with you, is “No Surgeries in 2017!”