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Gifts for People with Migraine or Other Chronic Pain

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It’s not as difficult to buy gifts for someone with migraine or other chronic pain as some you might imagine. Think “comfort” instead of “cure” for neurological disorders and you’ll have a better time finding gifts that anyone would appreciate. After the onset of neuropathic facial pain (formerly called atypical trigeminal neuralgia) three years ago, and an intractable migraine that’s lasted almost 20 months, I’ve been looking for additional products that might bring me comfort or help relieve the pain. I’ve found several that have become my constant companions, so to speak. Here are my favorite products to relieve pain and comfort someone with migraine or other chronic pain.

Essential Oil Aromatherapy Roll-Ons

Essential oil aromatherapy roll-ons, which come in a variety of scents, are portable, cost only about $10-13 each, and have been a life-saving product for me the last several months. My favorites are Migrastil Migraine Stick (therapeutic grade spearmint, peppermint, and lavender essential oils in a base of fractionated coconut oil), Aromata’s Headache Be Gone (lavender, peppermint, and wild-grown frankincense essential oils in almond oil), and Lavender Calm (organic essential oil of lavender in almond oil).

Some people may have sensitivities to lavender, so they might like the lavender-free Prime Natural Headache Relief (peppermint, Spanish sage, cardamom, ginger, and fennel essential oils in grapeseed oil). I like these roll-ons so much that I bought a second set to carry in my purse (the Aromata brands come in a small bag, so I store a few roll-ons in one of those pretty bags and toss it into my purse.) I swipe the essential oil roll-ons along the trigeminal nerve, from my temples to the spot in front of my ear, on both sides of my head (even though I only have pain on one side), on both sides of my collarbone, on the back of my neck down the center and on the back of the neck from the center outward at the hairline. These roll-ons immediately reduce pain, and though the scents only last about half an hour, they are not overpowering.

Essential Oil Aromatherapy Balms

Since someone else wearing perfume or other odorous products can trigger attacks, I try to be extremely conscientious with fragrances in public spaces, even if the fragrances are therapeutic ones. For people who need more subtle or short-lasting essential oil aromatherapy products, I recommend Badger Balm’s Headache Soother and Stress Soother, which are under $10 for a single balm or under $15 for a two-pack.

Headache Soother contains the following certified organic ingredients: Extra Virgn Olive Fruit Oil, Beeswax, Castor Seed Oil, Lavender Flower Oil, Menthol, Peppermint Leaf Oil, Sunflower Vitamin E, Eucalyptus Leaf Oil, Mandarin Peel  Oil, Sandalwood Oil, Calendula Flower Extract, Rosehip Fruid Extract.
Stress Soother contains the following certified organic ingredients: Extra Virgin Olive Fruit Oil,  Beeswax, Tangerine Peel Oil, Lavender Flower Oil, Rosemary Leaf Oil, Cedar Wood Oil, Sunflower Vitamin E Oil, Spearmint Leaf Oil, Damascene Rose Flower Oil, Calendula Flower Extract, Rosehip Fruit Extract, Roman Chamomile Flower Oil.

Since Badger Balms have more ingredients than any of the roll-ons listed above, I was initially hesitant to try these pain relief products. However, I’d used Badger’s Muscle Balm with great success, so I decided to try some of their other Soothers, which are more portable than their balms in a tin and don’t require you to dip your fingers into the balm to apply it to your skin.

All of these essential oil aromatherapy products, roll-ons and balm sticks, are portable and can be applied directly to the skin (barring absence of any allergies to the individual ingredients). Because these products contain essential oils, already diluted for application to the skin, and because they are portable, they would be weelcome additions to any chronic pain or migraine warrior’s self-care bag.

Heating & Cooling Sacks

SacksyThyme All Natural Premium Herbal Heating and Cooling Sacks are filled with organic flaxseed, or a combination of organic flaxseed and cherry pits, in a woven 100% cotton cover, and cost $30-40 each. The Sack can be put in the microwave for 90 seconds for warmth, misted with a little water before heating for moist heat, or placed in a sealed plastic bag in the freezer for 2 hours for chilled relief (and then stored in the sealed bag in freezer for instant comfort). I bought a Medium Unscented (13″ x 7.5″) one, which has no odor at all from the cloth or the filling; they also have an XL Unscented (16″ x 13″), covered with woven cotton on one side and cotton fleece on the other. The Sack comes in various sizes (L is 22″ x 7.5″), colors (blue, green, black, grey, etc), and prints (paisley, houndstooooth, plaid, leaves, bubbles, etc.). SacksyThyme also offers the same organic flaxseed or cherry pit filling with a proprietary blend of essential oils (lavender, cherry, eucalyptus, and lemon verbena). SacksyThyme makes an Unscented XLong Neck Wrap, filled with organic flaxseed, that can be heated in the microwave and won’t fall off your neck (22″ x 6″, and available in charcoal, hot pink, or dark red).

All SacksyThyme’s heating/cooling pads come with a one-year warranty.

Guided Meditations & Self-Hypnosis

Guided Meditations or Self-Hypnosis can reduce pain, and I’m a big fan of Belleruth Naparstek and have used her guided meditations since the early 90s (when they came on cassette tapes only). I regularly use her Meditation to Ease Pain and Meditation to Help Relieve Headaches, which features a guided meditation for relief of headache pain as well as a meditation designed to help prevent future head pain. Health Journeys has guided meditations specifically for the pain from TMJ, and Naparstek, one of the founders of Health Journeys, has meditations for traumatic brain injury, migraine, to increase healthful sleep, to promote general wellness, and more. These audio guided meditations are available in MP3 or CD format ($11.98 or $17.98, respectively) and are also available to stream from Health Journeys app for Android and iOS, which features a 7-day free trial. Though I still have the original cassettes with these guided mediations, I prefer the MP3 versions since I was able to make a playlist out of all the Belleruth Naparstek guided meditations: I put the volume on Low, put in my wireless earphones, and play the meditations on Repeat all day long to relieve pain.

Health Journeys sponsors a large library of guided meditations, with many of them devoted to pain relief and healing. Health Journeys also has other items for pain relief and healing, including guided meditations by Dr. Andrew Weil, one of the leaders in holistic medicine (CDs only), essential oils, books, pillows, lotions, etc. Health Journeys has gift cards ($15-$100) so that recipients can choose their own gifts. Health Journey’s catalogue is available online or by mail. If you or your give receipients have any questions about Health Journey’s Guided Meditations or other products, founder Belleruth Naparstek is available via email to answer questions.

It doesn’t take a great deal of money to comfort people with chronic pain and migraine. Most of us have to spend a great deal of time at home, and virtually all of us with migraine or other chronic pain have to invest a great deal of time taking care of themselves. Gifts developed specifically for people with chronic pain make holiday gift-buying easier. Everyone with migraine or other chronic pain will appreciate receiving gifts that will help with their self-care.


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For more of my articles on migraine or chronic pain,
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Filed under Atypical Trigeminal Neuralgia, Caregivers, chronic pain, Chronic Pain Treatment, healing, health, Health and Wellness, hemiplegic migraines, Meditation and MIndfulness, migraine, migraine self-care, Migraine Treatment, Migraine with Aura, Migraine Without Aura, migraines, Panic Attacks, Panic Disorder, PTSD, Self-Hypnosis Apps, Self-Hypnosis Meditation Apps, trigeminal neuralgia, trigeminal neuropathy

Natural Supplements and Vitamins for Relief of Migraine and Neuropathic Facial Pain

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Updated: 11 Aug 2019

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 without your physician’s knowledge and approval. Do not take any of these vitamins or supplements if you are allergic to any of the ingredients.

It began with a migraine and a strange feeling in one of my teeth. Actually, it was more like a strangely noticeable lack of feeling in the tooth: when I tapped it, it was almost as if the tooth weren’t in my mouth any longer. A migraine came and went, as usual, but the odd sensation in the tooth remained. A few days later, I had another migraine, which also came and went in a pattern I was accustomed to. The next week, despite having passed its annual inspection, my car’s radiator cracked and blew the engine, leaving me stranded at the side of the road and, worse, without any vehicle in an area where there is no public transportation. The stress of having to suddenly and unexpectedly find another (used) vehicle triggered another migraine. When I went to my doctor a few days later, he asked what had caused the increase in the migraine attacks, and I dutifully related my recent woes. “Reduce your stress,” he said before adding nonchalantly, “Oh, by the way, did I tell you I’m retiring at the end of the month?”

By the I got back home, I had another migraine. When I called for a refill on my pain pills, I was told it would be the last one the doctor could refill: he’d decided to retire at the end of the week instead of at the end of the month. Now I had only one bottle of 30 pain pills (Tylenol 3), had just lost the doctor I’d been seeing for thirteen years, and couldn’t get in to see a new doctor for at least 6 months. Despite my learning later that the odd-feeling tooth was infected and despite my having the tooth extracted, the migraine attacks did not relent. They were not only increasing in frequency but in duration. Instead of lasting 3-5 days as they usually did, each attack was lasting about two weeks. Then 3 weeks. A month. Six weeks. Early in 2018, I had a migraine that, to date, has lasted almost 15 months. The migraine had become chronic, intractable, refractory, status migrainosus, and any other benign-sounding words invented for this type of constant, debilitating pain.

After staying in bed the first three months of this migraine in 2018, I knew I had to find alternative ways to handle the situation. I wasn’t willing to be in bed the rest of my life, nor could I keep taking opioids every day. Saving the pain pills to use only during a hemiplegic migraine attack (whose pain is literally unbearable), I switched to aspirin for the refractory migraine, which is a migraine without aura. Aspirin is legal without a prescription and, for me, as effective as Tylenol 3 on that particular type of migraine, which means the aspirin takes the fiercest edge off the pain off but does not eliminate it. Since I wasn’t sure what was triggering this incessant migraine and feared it might be ingredients like dyes or preservatives, I began taking GeriCare aspirin, which includes only aspirin and cornstarch. I began using a sound wave device to help reduce the migraine pain, and it helped enough that I began to believe that the abscessed tooth, extracted in 2017, had damaged the middle branch of the trigeminal nerve and was triggering the refractory migraine. I had enough success to begin to get out of bed for a couple hours each day though I still had the unending migraine (I was wearing the sound wave device in a headband-sleeve during the day and sleeping with it under my pillow at night).

Six months later, when I was diagnosed with atypical trigeminal neuralgia (also called neuropathic facial pain) and put on Gabapentin, the constant facial pain and pressure were slightly reduced, but the excruciating lightning-bolt pain was not changed at all. Gabapentin, an anti-seizure medication used for hemiplegic migraine, did not affect the refractory migraine in any noticeable way. I began to be convinced that the months-long intractable migraine, whose pain is in the uppermost branch of the trigeminal nerve, was being triggered by the damage in the middle branch of the trigeminal nerve, damage which had originated with that odd-feeling tooth the previous year. Traditional medicine had not yet eliminated my pain, so I sought alternative, natural approaches to encourage my body to heal itself. 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 neuropathic facial pain (atypical trigeminal neuralgia).

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, and I discontinued 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.

Natural Supplements
for Pain Relief

 

Natural Vitality Calm (Magnesium)
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. Since too much magnesium too quickly can cause gastrointestinal symptoms like diarrhea, I started with a ½ teaspoon each night and slowly worked my way up to the recommended dosage of 2 teaspoons a day. I tried splitting the dose into 1 teaspoon each morning and night, but as it didn’t make the migraine go away and as I sleep better with the Calm at night, I now take the entire dose at night about an hour before bed. (I dissolve it in about ¼ cup of hot water and drink it when it’s cool.) 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. The Calm alone does not entirely eliminate the pain, but in conjunction with the other items, it does help lower the pain level.

Natural Vitality (unflavored, plain) Calm ingredients are Ionic magnesium citrate, made from a proprietary blend of citric acid and magnesium carbonate. Calm is also available in individual packets, for when you are away from home.

Calm is available in several flavors, and each flavor comes in different sizes: lemon (8-oz or 16-oz plastic bottles), raspberry-lemon (8-oz or 16-oz), cherry (8-oz or 16-oz), or orange (8-oz or16-oz). Since the flavored versions contain stevia, which triggers migraine attacks if I consume it, I have only tried the plain flavor.

I buy the unflavored Calm in the larger 16-oz size, which is more cost-effective( less packaging), and it’s cheaper to buy the pack of two 16-oz bottles (my guy uses the other bottle, and the magnesium eliminates his nightly leg cramps). Taking the recommended dosage of 2 teaspoons/day, one 16-oz bottle of Calm lasts me a year.

Lemon and Raspberry-Lemon are also available in two-pack of 16-oz bottles for significant savings, as is Cherry. Natural Vitality Calm is available as capsules in bottles of (120 or 180) or as gummies in bottles of (120 or 240); reviewers note that both capsules and gummies are as effective as the powder formula at reducing anxiety and insomnia, so there is reason to believe that the capsules and gummies would also both help with pain relief. (As soon as I try the capsules and gummies, I’ll update this post.)

Deep Sleep
I am plagued with insomnia before and during a migraine. The insomnia worsened with the neuropathic facial pain. Initially, I thought the extensive facial pain was due to the refractory migraine and not, as I now believe, vice versa. After the migraine lasted three months, I wondered if the accompanying insomnia was, in fact, extending or perhaps re-triggering the migraine. In addition to recommending the Natural Vitality Calm magnesium supplement, my medical massage therapist takes Deep Sleep, and she let me have a few pills to try them. I didn’t fall asleep, but within thirty minutes of taking one softgel, I noticed that the migraine pain was slightly less.

At least three of Deep Sleep’s herbal ingredients — California poppy, valerian, and oat seed in milky form — are also noted for pain relief. I began taking the Deep Sleep every day, for pain, not just to combat insomnia, and it helps lower the pain. I’ve tried Deep Sleep in liquid form (with alcohol in 2-oz or 4-oz bottles, and without alcohol in a 2-oz bottle) and in soft gel form. All three versions of Deep Sleep reduced the pain, though I thought the liquid form with alcohol worked slightly better on the pain than did the version without alcohol. (All three forms of Deep Sleep helped with insomnia.) I now take one softgel tablet 3 times a day for convenience (total = 600mg/day); using the softgel tablets allows me to put the Deep Sleep in a  small bottle with all my other medications and supplements for the day.

The Deep Sleep softgel ingredients are alcohol-free organic concentrated extracts of California poppy, valerian, passionflower, chamomile, lemon balm, oat (seed in milky stage), and orange peel; and the proprietary blend is equal to 200 mg per softgel. Deep Sleep softgels come in bottles of 60 or 120 softgel capsules, and the larger bottle saves considerable money. Deep Sleep noticeably reduces migraine pain and neuropathic facial pain.

California Poppy
Because California poppy is the first ingredient listed in Deep Sleep, I bought a bottle of that as well when I realized that the Deep Sleep was reducing the refractory migraine pain. When one manufacturer ran out and didn’t know when the item would be in stock again, I didn’t bother to find more of it: the pain increased. After I began taking it again, the pain returned to its lower level. Adding California poppy to the Deep Sleep helped reduce the pain, and I take one tablet 3 times a day (total = 1500mg/day).

Secrets of the Tribe California Poppy only has one active ingredient: 500 mg of organic California poppy, dried herb and flower, in a pure gelatin capsule. Secrets of the Tribe California Poppy comes in bottles of 90 or 230 capsules; as with other products, the larger size is more cost-effective.

Valerian
Valerian is an herbal supplement that has been used to alleviate insomnia and anxiety. Valerian also seems to reduce pain. When I began taking some valerian during the day during this atrociously long migraine attack, I immediately noticed that the pain level was lowered. I use NOW Valerian because they don’t include any preservatives, colors, flavorings, or other unnecessary ingredients in any of their products.

NOW Valerian ingredients is 500 mg valerian root in a cellulose capsule. NOW Valerian comes in bottles of 100 and 250 capsules, and the larger bottle, because it contains less packaging, is noticeably cheaper to purchase. In addition to taking valerian for the chronic pain, I take 1-3 more valerian at night before bed to help me sleep better.

Ginger
I tried turmeric capsules when this migraine first started, and then tried supplements that combined turmeric and ginger since both have reputations as anti-inflammatories. Each time I’ve tried anything with turmeric, however, it’s triggered a hemiplegic migraine. Since I eat crystallized ginger and use it in my tea all the time (it’s provides natural nausea relief during a migraine attack, but I also happen to love ginger), I decided to try ginger in a capsule form to get a higher concentration. I prefer NOW Ginger for the same reason that I use its other products: because NOW doesn’t contain so many of the nasty things that trigger migraine attacks for me. At first, I didn’t think the ginger was having any effect. When I ran out, and the pain level spiked upward, I got more ginger capsules right away. I take one 550 mg capsule 3 times a day, and, with everything else, the ginger keeps the pain level lower.

NOW Ginger ingredients are 550 mg ginger root in a gelatin capsule, magnesium stearate from a vegetable source, and silica. NOW ginger comes in 100-capsule bottles, and also in a 2 pack of 100 capsules, but it’s cheaper to purchase multiple bottles of the 100-capsules than to buy the more expensive 2-pack version.

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, both of which are migraine triggers 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.

PURE Encapsulations methylcobalamin B-12 has only one ingredient: 1,000 mcg B-12 as methylcobalamin, in hypoallergenic plant fiber (cellulose) vegetarian capsules (cellulose, water). PURE methylcobalamin vitamin B-12 comes in bottles of 60 or 180 capsules. PURE methylcobalamin vitamin B-12 also comes in a liquid form (30 ml bottle), but it contains stevia as well as the preservative potassium sorbate, so I cannot take it (if those two ingredients do not trigger migraine or neuropathic facial pain  for you, please do let me know  how the liquid version works).

Alpha Lipoic Acid (ALA)
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, including beets, brussels sprouts, carrots, and potatoes, higher doses of ALA may be needed to repair any damage to the trigeminal nerve.

Research with diabetics taking ALA supplements revealed that it can lower blood sugar. Since I have hypoglycemia (diagnosed over thirty years ago after several episodes in which I lost consciousness from very low blood sugar levels), this ALA-lowered blood sugar was initially a problem for me, and caused some hypoglycemia-related dizziness and cold sweats. I started the ALA at a low dosage and, with my physician’s supervision, slowly increased it. ALA has also been shown to interact with some medications, so do not take it without checking first with your medical provider.

Since taking ALA, the neuropathic facial pain and the migraine pain have both been noticeably lowered. Further, along with the methylcobalamin B-12, the ALA significantly reduces both the constant neuropathic facial pain and slightly reduces the severity of the lancinating pain triggered by things like coughing, sneezing, lying on my pillow, or touching my face.

One of the bestselling ALA supplements is Nutricost ALA, but it doesn’t make it clear whether its ALA is the natural (R) or synthetic (S) version, so I can only assume it’s the synthetic version. (Update: I tried a bottle of Nutricost ALA, and it triggered 2 hemiplegic migraine attacks in 10 days, so one of the ingredients used to make the capsules is something I cannot tolerate.)  I take Simply Nature’s Pure ALA, which contains 300 mg each the R-ALA (natural form) and the S-ALA (synthetic form) version. Simply Nature’s Pure also offers a money-back guarantee if you do not find that their ALA helps with your pain, which influenced my choice of their product.

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), with aura, or hemiplegic — the ALA significantly reduces pain. I now take 3 capsules a day (total 900 mg of R-ALA and 900 mg S-ALA) of Simply Nature’s Pure Alpha Lipoic Acid.

Simply Nature’s Pure Alpha Lipoic Acid (ALA) ingredients are 300 mg R-ALA (natural) and 300 mg S-ALA (synthetic), vegetable capsule. Simply Nature’s Pure ALA comes in a bottle of 120 capsules, and if you find that the ALA works for your migraine attacks or trigeminal neuralgia or both, it is significantly cheaper to buy the 2-pack or 3-pack of ALA 120 capsules.

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

All of these natural supplements and vitamins make a noticeable difference in lowering the pain level of this neuropathic facial pain (atypical trigeminal neuralgia) and the refractory migraine. Is any one of them 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. Since I am beginning to have a few pain-free hours each day, I am optimistic that eventually, as the nerve damaged by the originally abscessed tooth continues to heal, I will one day be mostly free of the atypical trigeminal neuralgia as well as of the refractory migraine, which I think is being triggered by the neuropathic facial pain. At the very least, I’ve found a combination of natural supplements and vitamins that have helped me reduce the severe pain of both these conditions and allowed me to regain control of my life.


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Updated 1 March 2020 I was first diagnosed with migraine when I was 5, which probably wasn't too surprising to my relatives since most of ...
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Why Getting a Medical ID for Hemiplegic Migraine Made Me Feel Unsafe

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“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.

Related Posts

For more of my migraine articles,
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

What Is Hemiplegic Migraine?

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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.)

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