A popular topic of conversation on Disability Twitter is what we carry with us when we leave our homes to help manage our conditions. Recently, my cousin asked me the same question, so I thought I’d show you all what I take with me whenever I leave my house.
[Note: I try to find small containers to use inside my bag/pack whenever possible, because ounces become pounds when you’re carrying a bag/pack for a long time.]
Safe soap. I repurposed a small spray cylinder by emptying it, cleaning it, and filling it with a soap that is safe for me to use. I react to the commercial soaps available in public bathrooms, so carrying my own soap with me allows me to wash my hands when I’m away from home.
Alcohol wipes. These have a multitude of uses, including sanitizing my hands and inhaling the vapors as an anti-nausea technique. Since I am allergic to hand sanitizer, this is what I use as an antiseptic. They’re also useful for cleaning my hands/face when I have been exposed to an allergen.
Water bottle. I actually carry two. An 800ml (27 ounce) bottle filled with filtered water for drinking, and a 12 ounce bottle filled with 8 ounces of filtered water for mixing with a medicine that requires diluting. [An 8 ounce water bottle would be more efficient and take up less room, but I couldn’t find one.]
Tissues. For runny noses, etc.
Lip balm. For dry lips.
Sunscreen. A small container of safe unscented sunscreen, meaning I don’t react to any of the ingredients. I use a mineral/barrier sunscreen for my face.
Foam ear plugs. Good for loud movies, etc. I keep a pair in a purpose-built container My Boomer Parent got at an air show. You could find something similar online. Ear plug holders are also often available at military uniform stores.
Rescue medicines. I always have migraine rescue medicines in my bag in case I have a migraine flare while I am out. I also carry Epi-Pens with me due to the risk of an anaphylactic reaction that comes with my MCAS (Mast Cell Activation Syndrome.) Additionally, I always carry Benadryl liquid-gels to treat mast cell reactions.
I wanted other people to be able to easily find my Epi-Pens in an emergency, so I found this clear case online and added a sticker I also found online.
Daily medicines. If I’m going to be gone during a time I need to take my daily medications, I make sure I have them with me. If there is any chance I might be delayed and be out when I am due to take my evening meds, I take a dose of them with me.
OTC (over the counter) medicines. The basics: NSAID; pain reliever; antacid.
Safe snacks. I carry raw almonds because they are good for a long time and don’t have to be temperature-controlled. A protein snack helps when I am getting a migraine flare. If I’m going to be gone all day, I’ll often take an RxBar as well. The carbs give me an energy boost.
Electrolytes. I often find that taking electrolytes helps reduce a migraine flare or mast cell symptoms. I prefer a brand that comes in capsules, which I can easily wash down with water. No muss, no fuss.
Ink pen. I carry an ink pen with me that has a grip that I can comfortably use.
Small notepad. So I can write things down, because my memory’s not as good as it used to be.
Sunglasses. A necessity for migraineurs.
Face mask. I carried (and used) face masks long before the pandemic, to help avoid inhaling fragrances. I use a cloth N-95 mask.
Cefaly. If I’m going to be gone all day, I take my Cefaly device with me in case I experience a migraine flare. This device stimulates the vagus nerve and helps reduce or eliminate migraine pain. I have a Cefaly Dual, which is much smaller than the original. It’s easy to take it with me in its protective case.
The Basics: phone; wallet; keys
{I would have included more pictures, but Word Press wouldn’t upload more than one for some reason.]
What do you take with you when you leave the house?
[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?
Last April, I received Botox injections for the first time to treat my migraines. Last week I received my fourth series of shots. Which means that when this cycle ends in April, I will have been receiving Botox injections for one year.
I had some trepidations before my first Botox injections. But I was also hopeful that they would prevent my migraines, or at least give me some relief. As it turns out, Botox does give me much better quality of life – for part of the quarter.
As I have mentioned before, the effects of Botox do not last a full 12 weeks for some patients. But it could be worse:
Although I am VERY GLAD that I am NOT in the category of patients who do not respond to Botox treatment – i.e., for some people Botox does not seem to affect their migraines, and they get no relief – I am frustrated that the effects of Botox only last for 8-9 weeks of the 12 week cycle for me.
For me, the effects wear off 2-3 weeks before the end of the quarterly cycle, and then it takes another week to stop feeling bad after I’ve gotten the next series of shots. So I only get relief for 8-9 weeks of the 12 week cycle.
Considering that Botox works better than any of the many, many other medications I’ve tried to relieve migraines, I am very glad that it does work and that I have decent quality of life for 2 months out of every three.
But it is so frustrating to know that I could feel better all the time if the VA would just allow a shorter interval between shots.
It takes about a week for the Botox to have full effect. Not only do I stop feeling crappy, but my forehead stops responding when I try to move my eyebrows. My forehead muscles are locked down, and nothing moves.
Toward the end of the cycle, I start testing my forehead muscles. Once my eyebrows start to move again, I know the Botox is wearing off and I am going to start feeling crappy again. The more my forehead muscles move, the less benefits I am getting from the Botox, and the worse I feel.
And there’s nothing I can do about it.
It is such a helpless feeling to know that the medication that allows you to function is wearing off, and you can’t have any more for weeks.
Can you imagine telling a patient with any other disease or condition that they must wait and suffer without medication for nearly one month each quarter? It’s inhumane.
So today I sit and wait for the Botox to work its magic.
It’s hard to describe migraines to people who don’t have them. It’s not just “a really bad headache.” While the headaches can be excruciatingly painful, they are not the only symptom. Migraines are a neurological event, which means they can affect the central nervous system, the cardiovascular system, and the vestibular system.
For me, on a bad migraine day I can’t think, because of the brain fog. I will not be able to remember to do simple things like take my medications/supplements. Food doesn’t taste good, and I will not be interested in eating. Sometimes I will have nausea. I will be incredibly sensitive to light and sound, and they will feel painful to me. Flickering light is especially painful, and might even affect my sense of balance. I may be dizzy and light-headed. Smells are also very strong and unpleasant. Even on a “good” day, if someone touches me and the odor of their perfume or cologne gets on my clothes, I will have to go home and change my clothes, or the odor may give me a headache. If it gets on my skin, I will have to wash it off. My senses are heightened, and sounds, smells, or light that you don’t notice can be unpleasant or painful to me. Also, my blood pressure is higher on a migraine day.
Some people, like me, also experience migraine “with aura,” meaning that because you have migraines, you have other weird stuff happening too. Sometimes the other weird stuff happens before a migraine headache, like a warning, and sometimes the weird stuff happens, but you don’t get a headache. Some examples include scintillating scotomas (a visual disruption), paresthesia (a tingling or numb sensation in a part of your body), or aphasia (an inability to speak or remember words). It is not uncommon for these symptoms to be confused with a stroke. You may have seen this reporter having an episode on-air a few years ago:
So what this means is that, when my Botox wears off and I have to wait weeks for another dose, and a week past the injections for the Botox to take effect, I am not just experiencing a headache for which I can take pain relievers, tough it out, and go on with my day.
No, what I have is cognitive impairment (brain fog) so severe that I cannot accomplish basic functions like taking my medications. I may forget if the dog is inside or outside. I may forget I have a dog. I won’t have an appetite, and may vomit, but if I do try to prepare food, I may forget to turn off the stove afterward, or I may forget the food is on the stove cooking. If I try to speak, I may not be able to remember words or form sentences. I may have intermittent balance problems, or I may have vertigo so severe that I cannot lie down (everything spins harder), and can only go down stairs on my butt, like a toddler. NO WAY could I operate a car like this. Every light in the house will be off. Every curtain or blind will be closed. And until it passes, I will be unable to do anything.
So, even though the Botox treatments give me 8-9 weeks of much-lessened symptoms (there are still bad or unproductive days), feeling the Botox wear off and knowing that I will descend back into that pit for 3-4 weeks is a horrible, frustrating, helpless, and unnecessary feeling that I wouldn’t wish on anyone.
To give someone relief and then take it away due to bureaucratic or monetary restrictions is cruel and inhumane.
The nurse practitioner who gives me the injections every quarter tells me he understands that the Botox doesn’t last as long for some patients, but he cannot shorten the interval unless VA policy changes.
I have not been able to find the VA publication that includes the specific approved interval for Botox shots and the underlying justification.
Meanwhile, having just experienced the end of my Botox cycle again, I decided to highlight on my calendar the weeks that I will be unable to function at the end of this Botox cycle. That way, I will know not to plan anything for those 3-4 weeks.
It’s a really weird feeling to plan for being incapacitated. And it’s almost impossible to explain to others that I will not be capable of doing anything during those weeks – that I know about it in advance, and there’s nothing I can do about it.
You’re not supposed to be able to schedule being sick. It’s something that normally happens unexpectedly. And, in our culture, when that happens you heavily medicate yourself and try to go on with your normal schedule anyway.
Since most people don’t understand chronic illness, there’s no way they’re going to understand episodic chronic illness.
But since the VA (and many other healthcare providers) will only approve a twelve-week interval for migraine treatment Botox injections, I will have to schedule around the weeks I know I will be incapacitated.
This cycle, that includes Easter. I will be doing nothing for Easter this year – just hiding in a dark, quiet house and praying for my next shots like a heroin addict.
