Tag Archives: familial hemiplegic migraine

Lifestyle Changes and Alternative Natural Relief for Migraine and Neuropathic Facial Pain

Disclaimer: This article is not medical advice: this is my experience only. The items listed here should not be used to diagnose, treat, or manage any condition. If you are on medication, you should not stop it or change your dosage without your physician’s knowledge and approval. Do not use any of these essential oils, aromatherapy products, vitamins, herbal supplements, or amino acids if you are allergic to any of the ingredients. Do not start any exercise routine without first discussing it with your physician.

I was first diagnosed with migraine disorder when I was five. Virtually all the women in my family have this neurological disorder, and while I was growing up, everyone called it a “sick headache” because of the nausea and crippling head pain that often accompany the migraine attacks. When I was 9, a doctor noticed that I was having seizures during a migraine, but it would be another 30 years till a physician specializing in migraine told me I had hemiplegic migraine as well as migraine with and without aura. Thus, I have all three types of migraine, though I’ve only learned to clearly distinguish them in the past few years. Migraine can also be classified by its frequency, as in “chronic migraine,” which is medically defined as having 15 or more migraine days a month for  at least three consecutive months. “Intractable migraine” is a migraine without aura that simply does not stop, no matter what medications or supplements the patient tries.

Types of Migraine
• without aura (sometimes called common)
• with aura (sometimes called complex)
• hemiplegic migraine, which can be familial (genetic) or sporadic (non-genetic, often caused by traumatic brain injury)
(for more details on migraine, see my article)

Recently, I detailed all the natural supplements and vitamins I’ve been using for the past two years that have helped reduce some of my chronic pain, even the excruciating pain of hemiplegic migraine attacks or of neuropathic facial pain (formerly called trigeminal neuralgia). I’ve also found a few pre-mixed essential oil aromatherapy products that reduce this disabling nerve pain. I’ve also changed my diet, made several lifestyle changes, and continued walking to reduce the pain. Although I still have the intractable migraine, which is clearly being continually triggered by something I have not yet discovered, and the neuropathic facial pain, all of these natural alternatives and lifestyle changes together have helped me become more functional by reducing the pain.

Adequate Hydration

This might seem self-evident or even ridiculous to some of you, but until I began managing the Migraine Mantras Twitter account in April 2018, when I had to read even more of the research related to migraine than I typically read, I never imagined that dehydration would increase pain levels, but let me assure you that it does. Now when I have aura symptoms which indicate that a migraine attack may be coming, or when the intractable migraine or neuropathic facial pain increases, I head to the refrigerator for more fluids. I don’t have to be thirsty to be somewhat dehydrated, and dehydration, no matter how slight, worsens pain. I pay much more attention to my fluid intake. It doesn’t matter if I have bottled water, a homemade smoothie, or (either hot or cold) tea: as long as I drink more fluids, the increased hydration usually reduces the pain of the migraine and of the atypical trigeminal neuralgia.

Meditation: with Adult Coloring Books

I’ve actually been meditating for a few decades, and I have a Tibetan Singing Bowl which really helps me concentrate and be mindful. But a couple years ago, I re-discovered my joy of coloring. I bought some colored pencils and adult coloring books: one with drawings of cats, and another with intricate mandalas. Coloring in adult coloring books, which are usually much more detailed than those for children, requires so much concentration that you are practically guaranteed a successful meditation thanks to the mindfulness required to color even a small section of some of the illustrations. Even when I have a migraine, I can usually concentrate enough to color for a bit. And, as many studies have demonstrated, mindfulness and meditation do decrease pain.

Essential Oil Aromatherapy Roll-ons

Aromatherapy is an alternative medicine, derived from herbal medicine, involving the therapeutic use of essential oils extracted from plants, herbs, flowers, trees, or other natural elements to reduce pain, anxiety, nausea, or insomnia, or to boost your own immune system. Many civilizations have used aromatherapy as “complementary or alternative” therapies for thousands of years. I’ve been using essential oil of lavender for over 20 years, after it was first recommeded by one of my doctors, but I’d never tried any other essential oils for pain until last year when I discovered portable essential oils. Aromatherapy roll-ons are portable, diluted and pre-mixed (i.e., in a carrier oil) so they can be applied directly to the skin (but not near the eyes or mucous membranes). All of them have been helping reduce the migraine and neuropathic facial pain.

The first aromatherapy roll-on I tried was Migrastil Migraine Stick (ingredients: therapeutic grade essential oils of peppermint, spearmint, and lavender in a base of fractionated coconut oil) and when I put it on my temples and the back of my neck, I experienced a pleasant cooling sensation. Since I am unable to use ice or cold packs during a migraine attack, I found the cool sensation of the essential oils surprisingly comforting. Headache Be Gone (ingredients: essential oils of lavender, peppermint, and frankincense in a base of almond oil) smells even more strongly of lavender, which I like, though it doesn’t give me as much of a cooling sensation as the Migrastil Migraine Stick. I used both of these roll-ons together as soon as I got them. Because I like the metal rollerball of the Headache Be Gone, which makes the essential oil feel cool going on my skin, I researched more products from its parent company Aromata. I found Lavender Calm (ingredients: organic lavender and almond oil), and I love the fact that this roll-on enables me to carry essential oil of lavender with me when I have to leave home. I use this along with the other two roll-ons, as needed for pain.

Drinking essential oils can cause liver or kidney damage. Putting an essential oil on your skin without first mixing it with a carrier oil, such as olive, almond, coconut, etc. can cause skin irritation or chemical burns. Some essential oils can trigger allergy, asthma, or migraine attacks, so you should not use essential oils without first consulting with your physician. Whether any individual essential oil precipitates a migraine attack, for example, rather than relieves the pain, is highly individual: eucalyptus can trigger a migraine attack for me, but lavender soothes it; for some with migraine disorder, lavender can trigger an attack.

I use several aromatherapy roll-ons now, all at the same time. I simply swipe each roll-on from temple to the general location of the trigeminal nerve root (in front of the ear toward the top where it joins the face) on each side, along my collarbone, along my neck on both sides at the base of my skull, and down my spine from the base of the skull to the top of whatever shirt I’m wearing. These aromatherapy roll-ons reduce the migraine pain and, as an added benefit, have helped lower the neuropathic facial pain (atypical trigeminal neuralgia) as well. (For more essential oil aromatherapy roll-ons and balms to reduce pain, see my article.)

Natural or Herbal Supplements

Traditional medicine has not eliminated my pain in over 60 years, so I’ve sought alternative, natural approaches to reduce pain and encourage my body to heal. After extensive investigation and several months of experimentation, I found quite a few supplements and vitamins that consistently reduce the pain of both the migraine and the atypical trigeminal neuralgia (now called neuropathic facial pain). Although I thoroughly researched everything I wanted to try for pain relief, I never took more than one new supplement or vitamin at a time, discontinuing any that triggered a hemiplegic migraine, aggravated the refractory migraine or neuropathic facial pain, or did not noticeably reduce either pain. I also started with the minimum amount of any one item to make sure I didn’t have any allergic reactions. Because so many supplements and vitamins have natural sweeteners (such as honey or stevia), artificial sweeteners (such as sucralose or maltodextrin), or preservatives, all of which trigger hemiplegic migraine attacks in me, I have included only those versions of the supplements with the fewest ingredients. Please note that I also made my doctor aware of all the vitamins and supplements I was taking to help reduce the chronic pain.


Magnesium supplements are often recommended for people diagnosed with migraine, and I started taking Natural Vitality Calm magnesium after the refractory migraine began its second month. If I miss the Calm for a few days, as I did when I had the flu, both the pain of the refractory migraine and of the trigeminal neuralgia increase. Natural Vitality Calm alone does not entirely eliminate the pain, but in conjunction with the other items, it does help significantly lower the pain level (you can see more details in my previous article).

Herbal Supplements

In addition to Calm magnesium, I use several herbal supplements to lower the pain level: Deep Sleep (ingredients:  California poppy, valerian, and oat seed in milky form), Secrets of the Tribe  California poppy (ingredient: 500 mg of organic California poppy, dried herb and flower), Valerian (ingredients: 500 mg valerian root). (The first few times I took only 1 tablet of valerian for pain, rather than for sleep, I feared it would make me sleepy, but it didn’t, and now I use it regularly for pain. As with many of my supplements, I use NOW products because I’ve found they’re of the highest quality and work most effectively.)


I eat crystallized ginger and use it in my tea all the time, partly because I love ginger, and partly because it provides natural nausea relief during a migraine attack. After reading that ginger reduces inflammation, and knowing that the excruciating pain of a migraine attack is due to inflammation of the trigeminal nerve, I decided to try ginger in a capsule form to get a higher concentration for pain relief, and the ginger does help reduce pain significantly. I prefer NOW Ginger capsules (ingredients: 550 mg ginger root) for the same reason that I use other NOW products: NOW doesn’t contain so many of the nasty sweeteners and preservatives that trigger migraine attacks for me.

The best ginger I’ve ever gotten for homemade tea is Tea Spot’s Organic Ginger Root. I realize that tossing a couple of pieces of crystallized ginger into a cup of boiling water will give a faint ginger taste, but Tea Spot’s Organic Ginger Root makes a wonderful tasting tea, better than any of the other commercial teas I’ve tried and stronger than dropping a couple of slices of crystallized ginger into a cup of boiling water. Ginger reduces both the migraine and the neuropathic facial pain, and ginger is  generally regarded as safe to eat regularly.*

Methylcobalamin Vitamin B-12

Researchers discovered that people who have dental or other surgical procedures on their head or face and who develop neuropathic facial pain (formerly called trigeminal neuralgia) may be deficient in vitamin B-12. “Nutritional experts suggest that the most effective form [of B-12] is methylcobalamin,” not the cheaper, more readily available cyanocobalamin version of B-12, which must, in any event, be converted by the body into the methylcobalamin form of B-12 to be used for effective pain relief. Injections of B12 have helped some facial pain patients, but not all of us can afford the injections. Though the Facial Pain Association recommends sublingual methylcobalamin B-12, I have thus far been unable to find any versions that do not contain maltodextrin or stevia, which trigger migraine attacks for me.

Fortunately, the PURE capsule version significantly reduces the neuropathic facial pain and the refractory migraine pain that seems to have been triggered by the atypical trigeminal neuralgia which started in 2017. I use PURE methylcobalamin vitamin B-12 capsules (ingredient: 1,000 mcg B-12 as methylcobalamin) to lower migraine and trigeminal neuralgia pain. There is a PURE sublingual methylcobalamin B-12 liquid version (ingredients: 1,000 mcg B-12 as methylcobalamin, 0.5mg stevia, purified water, natural glycerin, citric acid, and potassium sorbate), but because of its sweetener and preservative, I have not used it. (There are some cheaper methylcobalamin B-12 versions available, but most contain sweeteners or preservatives I must avoid: please do feel free to find versions that suit your budget.)

Alpha Lipoic Acid

In a “multicenter, randomized, double-blind, placebo-controlled trial” with diabetes patients experiencing neuropathic pain, Alpha Lipoic Acid (ALA) reduced their pain, suggesting that ALA plays a “broader role than just simply being an antioxidant.” Although many foods contain ALA, higher doses of ALA may be needed to repair any damage to the trigeminal nerve, and ALA is generally regarded as safe.* Since I began taking ALA, the neuropathic facial pain and the migraine pain have both been noticeably lowered. I’ve used both  Simply Nature’s Pure ALA (ingredients: 600 mg. alpha lipoic acid in vegetarian capsule) and Nutricost ALA (ingredients: 300 mg alpha lipoic acid each tablet, serving = 2 tablets for 600 mg ALA, gelatin, rice flour, calcium silicate, vegetable magnesium stearate). While both of these versions of ALA reduced the pain, the Simply Pure brand has fewer ingredients, including no preservatives, binders, or sweeteners, which I always prefer. Further, two of the Nutricost tablets equal one tablet of the Simply Pure ALA so the 240 Nutricost tablets is only 120 servings: the same as the Simply Nature’s Pure servings per bottle. More important to me, however, is the fact that Simply Nature’s Pure ALA clearly identifies its capsules as containing 300 mg of R-LA (naturally occurring) ALA and 300 mg of S-LA (synthetic) ALA. No other brand I’ve researched indicates whether its ALA is naturally sourced or synthetic, so I must assume it is all synthetic.

Methlycobalamin B-12 and Alpha Lipoic Acid
The pain of the constant and refractory migraine (without aura), even if caused by damage to the middle branch of the trigeminal nerve from the originally abscessed tooth, has also been reduced by the ALA. The more severe pain of hemiplegic migraine or of migraine with aura is also improved by my taking ALA. No matter the type of migraine attack I may be having — refractory/constant (without aura), chronic, with aura, or hemiplegic — the methylcobalamin form of vitamin B12 and the amino acid ALA significantly reduce pain. Further, the combination of the methylcobalamin B-12 and the ALA significantly reduces both the constant neuropathic facial pain and slightly reduces the severity of the sudden, lancinating pain triggered by things like coughing, sneezing, lying on my pillow, or touching my face.

Herbal Supplements, Vitamin B-12, and Alpha Lipoic Acid
Taking all of these natural supplements and vitamins has made a noticeable difference in lowering the pain level of this neuropathic facial pain (atypical trigeminal neuralgia) and the refractory migraine. I have even stopped taking any additional pain medication such as aspirin or acetomenaphin (opioids are not very effective at eliminating nerve pain). Is any one of these supplements more responsible for the pain relief than the others? In reality, I believe that it is the synergistic effect of them all that is finally significantly reducing the pain, but if I were forced to choose only one or two of these supplements, I’d start with the ALA and the methylcobalamin B-12.  You can find more details of these supplements, vitamins, and the amino acid in my earlier article.

Supplements, vitamins, and an amino acid
to reduce migraine and  neuropathic facial pain
• magnesium
• Deep Sleep
• California poppy
• valerian root
• ginger root
• Methylcobalamin vitamin B-12
• Alpha Lipoic Acid (ALA)

Slow Walking

First of all, let me tell you that I am most definitely not able to walk when I have a hemiplegic migraine: even getting out of bed dramatically increases the pain during one of those attacks. For every other kind of migraine attack, however, and for the neuropathic facial pain (atypical trigeminal neuralgia), walking does, in fact, predictably and consistently decrease the pain. Research indicates that walking reduces arthritis pain, and that swimming, walking, and stretching all reduce chronic pain.  I don’t have access to a swimming pool or other body of water  for swimming. Instead, I’ve taken Kundalini yoga classes for the past five years, and I walk. I’ve not noticed significant pain reduction with the yoga, although I’m guessing that the mindfulness involved is good for managing chronic pain. I concentrate my exercise on walking.

I don’t walk outside any longer because we live on a mountain and the terrain is too uneven for me to walk on safely, but I have a treadmill that will go as slow as 1 mph, and that’s about how slowly I walk when I have a non-hemiplegic migraine attack. I make sure to hold on to the handrails for safety, and I don’t increase the speed since speed is not the issue: pain relief is. As little as 10 minutes of slow walking helps lower the pain levels, although 20 minutes is better. That’s usually all I can handle when I have a migraine or a flare-up of the neuropathic facial pain, but for the past year, slow walking has reduced the pain every time.

Cooking (and Baking) from Scratch

In my absolute desperation to get rid of the intractable migraine that began in April 2018, although it had begun to show up earlier, in 2- to 3-week migraine attacks, I cleaned out the entire freezer, refrigerator, and all the kitchen cupboards. I was sure that some ingredient which I was positive was not affecting me or triggering migraines was, in reality, causing my incessant pain. I did find a few canned or bottled foods that had forms of MSG, artificial sweeteners, or preservatives in them that I hadn’t recognized as such. Out went all the things with maltodextrin, for instance, a preservative, sweetener, and thickener that is also called modified corn starch, modified rice starch, or modified wheat starch, and which can trigger a migraine attack in me virtually immediately. I have since found spaghetti sauces, which we also use for pizza sauce, as well as Pacific organic soups with no artificial or otherwise modified ingredients, which taste delicious, and which, more important, do not cause migraine attacks.

Though I was already realtively proficient at quick breads (they have no yeast so don’t have the 1-3 hour rising period of yeasted breads), I had to learn how to bake more kinds of bread. Since I was fortunate enough to have a friend who had gifted me her older bread-baking machine when she and her husband went gluten-free, I knew a little about yeasted-bread baking already. I learned how to bake without the bread machine when I wanted to have more variety in my bread: focaccia, pizza crust, and scones, for instance, all of which, even if started in a bread machine, have to finish in a traditional oven. I’ve learned to do all those types of breads, and though it takes more time to bake bread each day, I doubt I would ever go back to buying bread.

Artificial Sweeteners, Preservatives, and Other Additives
Another thing I noticed after getting rid of anything I thought might be triggering the intractable migraine is that, after being free of all artificial sweeteners, preservatives, and additives for almost two years, I can taste when a food or drink has anything artificial or chemical in it. After our monthly grocery shopping trip a few months ago, we went to a nearby restaurant and had lunch. Since it had been over a year since I’d had any soda, I ordered a Coke (or Pepsi) which has “caramel color” but no artificial sweeteners. When I tasted it, I felt sick: it tasted like chemicals. I asked for a Sprite (or 7-Up) instead, and found that it merely tasted like seltzer with some sugar. While we were waiting for our food, I looked up “caramel color” and found, to my horror, that it is not, as I’d always thought, sugar cooked till it is browned like caramel: caramel color is sugar that is browned by being treated with ammonia and sulfites at high temperatures. I was clearly tasting the ammonia. I’ve never had a cola soft drink since, and I also gave up buying commercial iced teas since most of them also contain caramel color. I make my iced tea at home again, as I used to do in college and grad school, when there weren’t any bottled iced teas (or, if there were any that I wasn’t aware of, they would have been far too exclusive and expensive for me to purchase regularly).

Despite any initial inconvenience caused by making all my food from scratch every day, I not only feel physically better, I feel safer avoiding all those preservatives and additives. I reduced some of the migraine attacks, though the intractable migraine has not yet stopped, but I  like knowing that whatever I eat contributes to my health rather than causing more pain.

Lifestyle Changes and Alternative Supplements for Pain Relief
• Adequate Hydration
• Meditation: with Adult Coloring Books
• Essential Oil Aromatherapy Roll-Ons
• Herbal Supplements
• Methylcobalamin Vitamin B12
• Alpha Lipoic (Amino) Acid
• Slow Walking
• Cooking & Baking from Scratch

The last few years of increased pain have forced me to become even more independent of traditional medicine and wary of pharmaceuticals. Indeed, the opioid crisis, with insurance companies and even pharmacies simply refusing the refill authorized prescriptions for migraine and chronic pain patients, might have precipitated my lifestyle changes even if I hadn’t already begun my search for natural alternatives to prescription drugs. I didn’t make all these changes at once, mind you: it was a slow process, over a couple of years. I never made more than one change to my diet, lifestyle, supplements, or medications at a time: I wanted to know if any one of them was responsible for any improvement or pain reduction. I am happy that I was forced to change my lifestyle to an even healthier one and that I found activities and natural supplements that further reduce the chronic pain of migraine attacks, intractable migraine, and neuropathic facial pain.

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It’s generally regarded as safe to eat ginger — up to 1000mg per day. if you eat too much in one day, you might get heartburn or diarrhea, so start slowly. Also, ginger may be an anti-coagulant: consult your physician if you are on prescription blood-thinners, and do not consume any ginger products for two weeks before scheduled surgical procedures. (back to article)

Research with diabetics taking ALA supplements revealed that it can lower blood sugar, so be careful using it if you are a diebetic on insulin or if you have hypoglycemia. ALA has also been shown to interact with some medications, so you should not take it without checking first with your medical provider. back to article)

Note: I have never received free products or other compensation for reviews.

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Filed under Atypical Trigeminal Neuralgia, chronic pain, Food, healing, health, Health and Wellness, hemiplegic migraines, Meditation and MIndfulness, migraine, migraine self-care, Migraine Treatment, Migraine with Aura, Migraine Without Aura, migraines, Neuropathic Facial Pain, trigeminal neuralgia, trigeminal neuropathy

Why Getting a Medical ID for Hemiplegic Migraine Made Me Feel Unsafe

“You’re getting a migraine, aren’t you?” said my physician last year during one of my regular visits. “If you were pulled over, a policeman would think you were drunk or on drugs. If you were taken to a hospital, they would think you were having a stroke. Time for you to get a medical ID bracelet.”

I was so shocked that I just sat there staring at him, and not just because he’d said I sounded impaired. I was first diagnosed with migraines at age five and have suffered from the throbbing head pain, vision changes, vomiting, and sensitivity to light, sounds, and smells all my life, as have many of the women in my family.

When I was 9, a doctor realized that I was having seizures when I had a migraine attack, though he did not give the headaches I was experiencing a different name. In my mid-thirties, a migraine specialist determined that I suffer not only from complex-complicated migraines but also from familial hemiplegic migraines, which are rare.

Hemiplegic migraines mimic strokes by causing temporary paralysis or numbness on one side of the body, loss of balance or coordination, and confusion or an inability to understand speech. Hemiplegic migraines can also cause speech difficulties such as slurring, dysphasia (words get mixed up or switched around in sentences), or aphasia (an inability to speak).

Most frightening, this type of migraine can cause changes in consciousness including seizures or coma. No one in my family who suffered from migraines ever carried anything other than pain medication, and though migraines with aura significantly increase the risk for stroke, no one in my family ever wore a medical alert. Now, however, medical ID bracelets are being recommended for people diagnosed with hemiplegic migraines since so few physicians are familiar with the symptoms.

Once I got over my initial shock at my doctor’s suggestion that I wear a medical ID bracelet, I welcomed the idea of the bracelet, if only because I thought I would feel safer wearing a medal with “Hemiplegic Migraines, Aphasia & Seizures” inscribed under my name and emergency contact numbers. To my surprise, I was terribly depressed upon receiving the bracelet. For months, I was so depressed that I found myself constantly “forgetting” to put the medical alert bracelet on. Because my doctor insisted I wear it, I had to figure out why the medical ID bracelet depressed me. This is what I came up with.

My medical condition was no longer private.

Many people describe migraines as an “invisible illness” because the suffering can’t be seen, and I suppose I felt more comfortable having a condition that most people didn’t know about. With the medical ID bracelet, instead of my life partner and close friends being the only ones who know I have migraines, everyone who sees me now knows something’s wrong with me. I’m wearing a bracelet that says so. Even though the bracelet is for my safety, it felt like an intrusion into my privacy.

I felt like a failure.

I take care of myself by getting plenty of sleep, avoiding dietary and situational triggers, and by walking, doing yoga, and meditating almost every day. I’ve tried every anti-depressant and anti-seizure medication on the market to get my migraines under control, but wearing a medical bracelet listing my condition made me feel as if I hadn’t done enough. The bracelet didn’t change the frequency or severity of my migraines, but it made me feel I have somehow failed to prevent them.

I felt like my migraines were my fault.

Migraines are neurological conditions, and researchers are still investigating whether all types of migraines may be inherited. Both sporadic (not inherited) and familial (inherited) hemiplegic migraines definitely involve genetic defects or mutations that upset neurochemicals in the brain, causing the symptoms of the aura and the pain of the migraine. Despite knowing all that on a conscious level, having to wear the medical ID bracelet made it somehow seem as if the migraines were my fault, which I had never felt before.

I felt like I was wearing a sign on my forehead.

I readily admit that I’ve had to make a lot of lifestyle changes and adjustments because of my migraines. I can’t go to concerts or movie theatres because the high volume triggers a migraine. I avoid grocery aisles with humming or flickering fluorescent lights that can instantly cause both a severe migraine and its associated seizures. I use only unscented lotions, soaps, or shampoos, nor can I be around anyone who’s wearing perfume because it causes migraines. I have to know every ingredient of every dish I eat that I don’t make myself to avoid food triggers like artificial sweeteners or additives (e.g., MSG): those things can cause migraines, and hemiplegic migraines can cause seizures which can lead to coma.

I’ve been called “neurotic” by more than one person in my life, including doctors who dismissed my symptoms as “all in my head” when they didn’t know anything about hemiplegic migraines. I guess I never minded being considered “neurotic” because I knew that I was taking care of myself. Though I’m unable to work when I have a migraine, I never considered myself to have a chronic illness let alone a disability. Wearing the medical ID bracelet made me feel like I was chronically ill as well as disabled. Further, the medical alert made me feel like I was wearing some shameful Disabled sign on my forehead for everyone to see.

To my surprise, my life partner was very pleased when I got the ID bracelet. He admitted, for the first time in almost 25 years together, that he has always been concerned about my having a migraine-induced seizure: he worried that he would be unable to adequately explain hemiplegic migraines to medical personnel. The instructors in my T’ai Chi and Kundalini Yoga classes looked so relieved when I showed them the bracelet that I felt quite guilty for not having gotten it sooner. When I went to a new dentist and then to an oral surgeon to have a dying tooth extracted, both doctors immediately asked about the medical alert and were then pleased to know that my medical condition, which neither had ever heard of before, was clearly indicated on the bracelet.

One day when I went to the grocery last month, I actually forgot to put my bracelet on. After I realized that I’d left it at home, I became anxious that I might experience an aura and have difficulty speaking while I was among strangers. That was when I understood that my initial depression over wearing the medical ID bracelet had completely disappeared.

After wearing my medical ID bracelet for almost a year, I can honestly say that I am happy to have it. I wear it every day, even at home, and have it on 24-hours a day when I have a migraine in case of seizure. I feel only safety wearing the medical alert bracelet now, and I encourage anyone who has a severe, chronic, or rare medical condition to wear one.

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see my Migraine & Chronic Pain page.

This article, in a slightly altered form, was first published
on  The Mighty and reprinted on MigraineMantras.

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Filed under health, hemiplegic migraines, migraine, migraine self-care, Migraine with Aura, Migraine Without Aura, migraines

This Is Your Brain on Migraine

Impacting not just the head but the entire body, migraine is the most common neurological disorder, affecting 10-15% of the adult population. For comparison, epilepsy is the fourth most common neurological disorder (after migraine, stroke, and Alzheimer’s disease). Unfortunately, few people completely understand the mechanism of migraine. Even doctors, neurologists, and scientists who specialize in migraine research do not necessarily understand everything about this disorder, if only because few of them have ever suffered its agonizing pain.

To make the process of migraine clearer for everyone, let’s imagine your body as a house run entirely by electricity. When the power supply works well and is uninterrupted, you have all the modern conveniences: light, heat, air-conditioning, refrigeration, computers, and Internet. The brain’s 100 billion nerve cells (neurons) are your body’s power system: its wiring and its electricity. Neurons enable you to breathe, move, and think. The neurons in the brain’s outermost layer — the cortex — process information from the senses, regulate body temperature, initiate movement, and enable such complex processes as memory, attention, speech, analytical thinking, and problem-solving. Electrical power makes your house and your body run more efficiently.

Now, imagine your house during an electrical brownout. Too little voltage, as in a dip, and lights noticeably dim, fans slow, and electronic devices sound a warning. Too much voltage, as in a surge, and appliances and electronics can be damaged. This is your brain during an aura. Cortical neurons fire abnormally, in dips and surges, causing symptoms which can include visual disturbances, nausea, clumsiness, or vertigo. Strange tastes, unusual smells, rapid fluctuations in body temperature, and speech difficulties are relatively common. The irregularities in your brain’s electrical system during an aura’s brownout can cause insomnia, depression, irritability, anxiety, brain-fog, and fatigue.

Of course, if you aren’t home during an electrical brownout, or if you’re asleep during an aura, you won’t notice the electrical havoc. Only 20-25% of those with migraines report aura, though some researchers suspect that migraine sufferers may not always notice aura symptoms or associate them with subsequent head pain. Some people with migraine may not associate fleeting irritability, occasional insomnia, or mild depression with an aura because, just as electrical brownouts are not always followed by a complete power outage, auras are not always followed by the crippling pain of a migraine.

Now, imagine your house during a complete power outage. Though the house is still standing, nothing in it that depends on electricity will work. That means no light, no washers and dryers, no television or computers. Without electricity, almost all modern conveniences are unavailable or inoperable. This is your brain on migraine. Instead of firing abnormally, in dips and surges, the cortical neurons across the brain begin to shut down completely. In a wave called Cortical Spreading Depression (CSD), the neurons in the brain’s cortex — the nerve cells that process sensory input, control movement, and enable both speech and thinking — go into “electrical silence” and don’t fire at all. It’s a power outage in your brain.

Why is this neural blackout in the brain so painful? Research indicates that migraine pain is likely due to inflammation of the trigeminal nerve — the largest nerve in the head — responsible for motor control, touch sensation, and pain perception in the scalp, face, eyes, nose, sinuses, cheeks, jaw, teeth, and gums. This inflammation of the trigeminal nerve appears to be directly triggered by the brain’s electrical blackout during Cortical Spreading Depression. When deliberately induced in the brain of a rat, a CSD neural blackout activated the pain-transmitting trigeminal nerve system in the meninges: the sensitive membranes covering the brain. Trigeminal nerve pain, as anyone who has ever experienced a migraine knows, is excruciating and debilitating.

Usually, after a blackout in a residential area, electrical power is restored, and life in your home returns to normal. Since people rarely die during power outages, they are usually not life-threatening. You don’t suffer physical pain during a power outage either, so it’s merely an inconvenience. This is where the analogy ends.

People with migraine suffer incapacitating pain during CSD’s neural blackout. Even after a migraine, when the neurons start firing relatively normally again, it’s highly probable that another wave of CSD and its associated pain will strike. Despite taking medication, effecting lifestyle changes, and avoiding as many triggers as possible, people with migraine cannot entirely eliminate the auras or the pain. Unlike the electrical system of a house, which can be upgraded to reduce brownouts and power outages, our brains cannot be upgraded to reduce abnormal neuron-firing, Cortical Spreading Depression, or CSD-triggered migraine pain.

There is some good news, however. In 2017, an international team of researchers discovered a “genetic particularity” that is more common in those who have migraine, with or without aura. This is the “first irrefutable genetic link” regarding the most frequent forms of migraine. Perhaps, one day soon, researchers will be able to determine ways to adjust and regulate the brain’s complex electrical system, reducing or even eliminating the neural brownouts that are thought to cause aura, as well as the CSD neural blackouts that trigger the incapacitating pain of migraines.

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[Illustration of trigeminal nerve branches credit:
Trigeminal Nerve Branches, by John Charles Boileu Grant,
An Atlas of Anatomy, by Regions, 1962. Public Domain. Courtesy of Wikipedia]
(A version of this article was originally published on MigraineMantras.)


Filed under chronic pain, hemiplegic migraines, migraine, Migraine with Aura, Migraine Without Aura, migraines

What Is Hemiplegic Migraine?

The smell of smoke woke me in the middle of the night. I got out of bed fast, prepared to evacuate my apartment. I heard people talking and assumed that others were already leaving the building. When I got to the hallway, however, it was empty: there was no smoke, and there were no people.

Cautiously, I went to the floors above and below mine, where I could still smell something burning and hear the hum of voices. I went to the parking lot, thinking people were congregating outside. No one was around, and all the apartments in the building were dark. I went back to my place, firmly convinced that there was an electrical fire in one of my outlets.

After an hour of crawling around smelling each outlet, I was more confused than ever. No smell seemed to be coming directly from any of the outlets, yet when I stood back up, I could most definitely smell electrical fire. I could still hear people talking, too, though no one seemed to be close enough for me to hear them clearly: I couldn’t make out the actual words of the conversation. I was up most of the night, crying and waiting for disaster to strike. The next day, when I smelled gasoline and still heard several voices faintly talking to each other, despite my being at home alone all day, I thought I was losing my mind.

Gasoline, cigarette smoke, electrical fire, propane gas – I’ve smelled all of them for no reason in my life, and it took years before I was brave enough to admit it to anyone. Even then, I only told my doctor because I was also experiencing such dreadful tingling and weakness in my left hand that I kept dropping things, and because my left foot was numb so often that I limped and stumbled along, unable to feel my foot.

When I finally admitted smelling strange, non-existent odors, along with hearing “voices” without understanding the words, my doctor began to question me about other possible symptoms. She mentioned strange tastes, temporary mental confusion, an infrequent inability to speak, instances of my words coming out jumbled and mixed up, or my losing consciousness without warning.

I’d been having non-convulsive seizures during the migraine attacks at least since the age of 9, when a doctor noticed that I sometimes lost consciousness during migraine. Because I was diagnosed with migraine at age 5, and because virtually all the women in my family also had migraine, the doctor said she thought she knew what was causing all those frightening neurological symptoms.

After sending me for multiple medical tests to ensure that I was not developing multiple sclerosis and that I had not had a stroke, the doctor diagnosed Familial Hemiplegic Migraine, a rare form of migraine disorder.

Hemiplegic Migraine

Hemiplegic Migraine (HM) is caused by mutations in one of at least 4 genes, preventing the neurons from firing normally, causing partial numbness, tingling, or paralysis on one side of the body (hemiparesis) along with the other migraine aura symptoms such as visual disturbances or speech difficulties. HM can also cause impaired consciousness, ranging from confusion to profound coma. Familial HM is inherited: other family members with migraine have similar neurological symptoms. Though Sporadic HM can occur after head trauma, and though he same genetic mutations are involved, Sporadic HM is not inherited, so it does not run in families.

The pronounced neurological symptoms of Hemiplegic Migraine make it a subdivision of Migraine with Aura, which can cause heightened sensitivity to smells and to light, as well as nausea and vomiting during the migraine itself. Although the debilitating pain of migraine does not always follow the aura symptoms of light sensitivity or nausea in other forms of migraine, virtually everyone who experiences the one-sided neurological symptoms of Hemiplegic Migraine, whether familial or sporadic, has the excruciating one-sided head pain after the aura.

Though it’s uncommon for the neurological symptoms to remain after the pain of the migraine has passed, HM can cause prolonged weakness, extended memory problems, or mild but permanent difficulties with movement and coordination. A few doctors and researchers seem to believe that Hemiplegic Migraine “disappears” after age 50, but most people do not get miraculous relief from these migraine attacks as they age. Unfortunately, triptans and ergotamines, which are sometimes used to prevent or treat other forms of migraine, are contraindicated in those with Hemiplegic Migraine because those prophylactic medications often trigger strokes.

Despite the worrying symptoms, a diagnosis of Hemiplegic Migraine can actually be a relief for migraine sufferers. Their strange neurological symptoms are part of a rare migraine disorder that not only has a name, but is a recognized illness and disability.

(This post is an excerpt of my post originally published on MigraineMantras.)


Filed under health, hemiplegic migraines, migraine, Migraine Treatment, Migraine with Aura, Migraine Without Aura, migraines