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?

 

Sometimes the Stars Align – But You Still Have to Check Your Six

Just a quick update to explain why it’s been so quiet on the blog this month.

I finally had the “do-over” for the surgical procedure that was cancelled when I had the allergic reaction to the antiseptic.

Because I had lost confidence in the VA hospital, I switched from handling this procedure through the VA to handling it through Tricare.

In an interesting twist of fate, my new doctor has the same rare allergy that I do, which meant I didn’t have to worry about accidental exposure to that substance in the operating room.  Bonus!

However, as it turns out, I still had to remain extremely vigilant.  Although my allergy is clearly marked in my records, few people seem to understand how this allergy translates to real life, which results in interactions such as these:

[Scene: Pre-Surgery area]

Nurse 1:  Hi, I’m Nurse NAME, and I’ll be going over your paperwork with you today.  How did you clean prior to surgery?

Me:  I took a shower last night and a shower this morning.

Nurse 1: With soap and water?

Me: Yes.

Nurse 1: Were you given the pre-surgery paperwork suggesting you cleanse with Hibicleans prior to surgery?

Me: Yes.

Nurse 1: And did you follow those procedures?

Me [mildly sarcastically]:  No.  I’m allergic to Chlorhexidine, so I thought that would be a bad idea.

Nurse 1: Oh.

[Note: This means that the military hospital gave me a standard pre-surgery paperwork package instructing me to clean myself at home with a substance to which I have a documented allergy.  There is apparently no control in the hospital procedures for this mistake.]

[Scene: Pre-Surgery area.  Later…]

Nurse 2 (LPN): Ok, I’m here to get you prepped for surgery.  Do you have any allergies?

Me: Yes, I’m allergic to Chlorhexidine.

Nurse 2: Ok, I see that in your chart.  I’ll write that on your wristband.  [Writes on wristband, and attaches it to my arm.]  Ok, now I’m going to insert your IV. [Opens IV kit.]

Me:  Are you going to use an alcohol wipe to clean the site?

Nurse 2: No, I’m going to use the wipes in the IV kit – Chloraprep wipes.

Me [Firmly]: No, you’re not.  I’m allergic to those.

Nurse 2: Really?

Me: Yes.  They contain Chlorhexidine.

Nurse 2: Oh. …  Ok, I guess I’ll go find some alcohol wipes.

[Note: This indicates that the hospital does not have special IV kits for individuals with Chlorhexidine allergies, which is somewhat understandable given that it is a rare allergy.  However, it also indicates that medical personnel are inadequately trained on Chlorhexidine allergies and required modifications to standard procedures.]

Bottom Line: Given the lack of awareness by medical personnel of Chlorhexidine allergy (an antiseptic widely and frequently used in the medical field) and its practical implications (changes to materials used in standard procedures), I am deeply grateful that my surgeon has the same rare allergy and could maintain a safe environment for me in the operating room.  I am particularly grateful for that given that (1) I had to be extremely vigilant to avoid exposure (and another allergic reaction and cancelled surgery) prior to surgery, and (2) I could not maintain vigilance in the OR since I was anesthetized.

If you have a similar rare medical allergy, please learn as much as you can about sources of exposure, and be very cautious to avoid exposure in medical environments.  Do not rely on medical personnel being informed and aware – they probably aren’t.

Note: Check Your Six is an aviation term meaning to watch for attacks from behind.  It more broadly means to be situationally aware and to maintain vigilance.

Crew Dog and the Case of the Faulty Health Paradigm

A paradigm is a model or example of something, or the framework or mindset we use to understand or make sense of things.  When we subscribe to a paradigm, it often means that we choose to see things in only that way.  What do you see when you look at the picture above?  Can you see it in more than one way?*

Often, in business, we hear people talk about a paradigm shift, which means accepting a new way of looking at or thinking about things.  The opposite of a paradigm shift is paradigm paralysis, which is “the inability or refusal to see beyond the current models of thinking.”

I was stuck in a paradigm, or suffered from paradigm paralysis about an aspect of my health for many years, and it basically took a whack upside the head (figuratively speaking) to make me change that paradigm.

The paradigm I was stuck in was this: I don’t have allergies.

I never had any health problems when I was growing up.  I was blessed with excellent health until my mid-thirties.  I didn’t wheeze and sneeze like the people in the allergy commercials.  Surely I didn’t have allergies.

Not only did I believe that I had no allergies, but the one time I went to a (military) doctor because I wasn’t feeling well and I described my eyes as “itchy” the doctor quickly reprimanded me to never say that, because itchy eyes were a symptom of allergies and aircrew could not have allergies.  Since I didn’t want to lose my aircrew status, I never again described my eyes as itchy.

Years later, I started having very concerning symptoms.  I suddenly developed vertigo, which was quite alarming.  I was sitting in a chair reading when, out of nowhere, it felt like I did a front cartwheel.  My inner gyros completely tumbled.  I felt like I had moved violently, even though I hadn’t moved at all.  I dropped my book, grabbed the arms of my chair, and tried to figure out what the heck had just happened.

As it turned out, it took quite a while to figure that out.  I saw lots of specialists during that time.  I had diagnostic tests to rule out brain tumors, inner ear tumors, and…allergies.  The allergist administered a skin prick test, left me sitting in the waiting room far too long, and had trouble reading the results on my arm.  I, of course, didn’t think I had any allergies, and wasn’t expecting them to find anything during this test.  I had noticed one area on my arm react strongly, but the allergist smugly informed me that that particular area had been the control – it was pricked with histamine.  Of course I had reacted to that, I was told disdainfully.

The allergist peered at my arm, ran their fingers over and over the area, and finally pronounced that I was probably allergic to birch trees and penicillium mold.  I asked if that meant I was allergic to penicillin (it runs in my family).  The allergist said it was possible.  [I learned many years later that being allergic to penicillium mold *does not* mean you will be allergic to penicillin the antibiotic.]**

I asked about the allergy to birch trees, and was told to just avoid being around them.  I was given no other information or guidance.***  I decided the allergist wasn’t very competent, and went on with my life.

Next I developed frequent excruciating headaches.  Eventually the headaches and the exclusion of other causes led to a diagnosis of migraines and migraine associated vertigo.

I began to learn about migraine triggers – things that can contribute to having a migraine, such as barometric pressure changes; bright, flashing, or fluorescent lights; and foods.  People with migraines have reported that they were more likely to have migraines after eating certain foods, although not everyone responds to all of the same foods.

Known culprits are red wine; aged cheeses; processed meats; chocolate; citrus fruits; and foods containing MSG or aspartame.  (There are more, but these are some of the biggest culprits.)

I started eliminating many of these foods from my diet, and my symptoms abated somewhat.

During this time, I had also developed a perpetually stuffy nose that seemed to get worse prior to and during a migraine.  I saw an ENT, and was diagnosed with chronic sinusitis.  For years afterward, whenever I mentioned to a new doctor that it seemed to be linked to the migraines, I was told that stuffy nose was not a migraine symptom, and the doctor ignored that symptom.

Fifteen years after my trip to the allergist, I had an allergic reaction to a medicine (Chlorhexidine) I was administered in a hospital.  Since Chlorhexidine is an antibiotic that is widely used as an antiseptic and disinfectant in medicine, dentistry, and  in pharmaceutical and cosmetic products, I figured I’d better see an allergist to discuss how I was going to avoid Chlorhexidine for the rest of my life.  I also wanted to know if I was allergic to any other antibiotics, since I still didn’t know whether I was allergic to penicillin or not.

This allergist was very thorough, and asked me a lot of diagnostic questions.  We discussed my Chlorhexidine allergy.  And then he said, “You probably also have a mold allergy.”

Here’s where the paradigm paralysis makes me look pretty stupid.  Even though I had been diagnosed with an allergy to penicillium mold, and even though I had known for years that I was sensitive to mold in my environment (moldy basements, moldy government buildings, water-damaged areas in homes), it had never occurred to me that I was *allergic* to mold (because I don’t have allergies).

I didn’t even know that mold was a common allergen.

I told the allergist that I had never even considered that I might have allergies, because “aircrew don’t have allergies.”  He laughed, and said, “At least, not until after they’ve retired, right?”

My new allergist gave me a mold elimination diet to follow, for diagnostic purposes.  It sounds crazy, ‘cuz we don’t go around knowingly eating mold, right?  Well, actually…  That penicillium mold I’m allergic to?  It’s used to create Brie and Camembert cheeses.  Two of my favorites, that I started eating right around the time my migraines became frequent and have been eating ever since – because the first allergist *never told me* I should stop eating them!

Penicillium mold is also used to create “veiny” cheeses, including Roquefort, Blue, Gorgonzola, Stilton, etc.  While I ate these cheeses much less frequently, I did like to have Gorgonzola (often found in four-cheese blend) on my pasta.  Fortunately, these cheeses  were all categorized as “aged” cheeses, which I had eliminated from my diet early on because they are known migraine triggers.

Back to the mold elimination diet: Anything pickled, fermented, cured, aged, or cultured contains mold.  Dried products (fruit, nuts, coffee, tea) may also be contaminated with mold.

The cultured yogurt that I was eating because it contained “good” bacteria and was good for my health – was making me sick.  Before I began the mold elimination diet, I ate yogurt for breakfast one last time and my nose got so stuffy that I had to breathe through my mouth.

After three days on the mold elimination diet I could breathe better than I had in fifteen years.

After two weeks on the mold elimination diet, I felt better than I had in many years.  My energy level was much higher, and the incidences of “brain fog” were much lower.

I also don’t think it’s a coincidence that the mold elimination diet prohibits me for eating every food that is a known migraine trigger.  I am currently exploring the possibility that my migraines are linked to this underlying allergy.  [Update: see this Migraine diet]

I have subsequently returned to the allergist for two rounds of testing: skin prick and injection (blog post to follow).  Of the identified 100,000 types of mold (there are 1.5 million, but many are unidentified), there are allergy testing samples for 15 types.  I reacted to Penicillium and Aspergillus, which are both common indoor molds.

My allergist tells me that it is less common to do allergen elimination diets these days, particularly for something like a mold allergy.  In fact, it’s hard to find much information about mold elimination diet on the internet (see below).  I’m glad I happened to get an allergist who had this in his “bag of tricks,” because this diet has already had a radical impact on my health.

Are there assumptions or paradigms about your health that might be false?  If you are dealing with a chronic health condition and you haven’t had success treating it, it may be time to go back and challenge previous assumptions and paradigms.  After all, I “knew” I didn’t have allergies…

*This is a classic perception image.  You might see a duck facing left or a rabbit facing right.  Many people have trouble being able to see both, or switching from seeing one to seeing the other.

**NOTE: For more information on Penicillium mold, and supporting data that “hypersensitivity to Penicillium mold bears no relationship with hypersensitivity to the antibiotic Penicillin,” see this article.

*** My new allergist informed me that if you are allergic to birch trees, you may have cross-reactions to certain foods, including celery, apples, or carrots.

NOTE: For more information on mold in general, see these Centers for Disease Control (CDC) FAQs.

NOTE: For more information on mold allergy, see this page on the Asthma and Allergy Foundation of America website or this page (and associated pages) on the American Academy of Allergy, Asthma & Immunology website.

NOTE: For more information on the mold elimination diet, see this example.  [This is not my allergist or ENT and I am not endorsing this practice or being compensated by them in any way.]

P.S. – Have I had a mold allergy my whole life, and just didn’t know it?  Or did it develop in adulthood?  I don’t know.  Either is possible, although adult-onset seems more likely, given the lack of symptoms prior to my thirties.  Here’s a good article on adult-onset allergies and asthma.  [Again, this is not my allergist and I am not endorsing this practice or being compensated by them in any way.]

Things I Never Knew Before I Had a Debilitating Health Condition

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When I began living with a chronic health condition, I thought I was learning what it was like to not be perfectly healthy.

After years of having excellent health, I was starting to understand physical limitations (I thought).

I was more sympathetic of others who had dietary restrictions (and I was grateful when other people were sympathetic of my dietary restrictions).  I was more aware of physical limitations, and therefore more sensitive to people who have them and ways to make environments more accessible to folks who are differently-abled.  I thought my health condition was making me a better person by making me more aware of others’ realities.

Then my health condition became debilitating, and I learned there was a big difference (at least in my case) between chronic and debilitating.

With a chronic health condition I could still live a fairly normal life, with some restrictions and modifications.  With a debilitating health condition, I rarely leave the house, except to go to doctor’s appointments.

When my health condition became debilitating, I learned there was still a lot I didn’t know about physical limitations and other people’s realities.

In the hopes that others might get a better idea of what it’s like, I made a list of things I never knew before I had a debilitating health condition:

I never knew I would choose to stay home and miss an opportunity to socialize because it was too much work to figure out what clothes to wear in public.

I never knew there would be days (weeks?) that I didn’t have the energy to change out of my pajamas.

I never knew how exhausting it could be to take a shower.

I never knew I could lack the energy to prepare a simple meal like scrambled eggs.

I never knew that some foods could be too exhausting to eat, and that some days all I would have the energy to eat would be foods like soup, apple sauce, macaroni & cheese, or ice cream, that require minimal processing.  (Easy to prepare, easy to chew, easy to digest.)

I never knew that I wouldn’t be able to deal with phone calls, and I would just let them go to voice mail, which I would delete every few months when I got tired of the icon blinking at me.

I never knew that it could take too much energy to sit up, so I’d have to lie on the couch instead.

I never knew that leaving my house to go to a doctor’s appointment, to socialize, or to run an errand could take so much out of me that it could take days to recover.

I never knew that I could be so exhausted that I wouldn’t have the energy to fight for my health – that I would ignore incorrect bills or live with health problems rather than fight with the system to correct these things, because I didn’t have any fight left in me.

I never knew that when I got this ill none of my friends would notice, and  I would become more and more isolated.

Call to Action: If you have a friend with a debilitating health condition, don’t let them fall through the cracks!  Ask yourself, “When is the last time I saw/heard from this person?”  Everyone gets busy, and it’s easy to go a while without contacting your friends, especially if they don’t answer their phone.

Texts, emails, or Facebook messages are a great way to keep in touch with a friend with a debilitating health condition.

Other ways you can help your friend: Ask them if there’s something you can pick up for them while you’re out running your errands.  Saving them a trip to a store can be a great kindness.  Or bring by something for them to eat that they don’t have to prepare themselves (microwave meal, home-cooked, deli, take-out – anything that is easy and within their dietary restrictions).  Even fresh fruit or a veggie tray is a great treat for someone who doesn’t get to the store very often.

Finally, make some time to visit your friend (please coordinate with them first – they might not be dressed!).  They probably won’t have the energy for a long visit, so stopping by wouldn’t take much of your time, but they would most likely appreciate the company.

Debilitating health conditions can be isolating and can lead to depression – Be a good Wingman/Battle Buddy and keep an eye on your friend.  They may not be able to help themselves.  Don’t let them fade away.