We will run this campaign as needed (hopefully no more than a couple times of the year) to help us help you and our fellow HMers worldwide.

We are humbly asking that you place $2 cash in an envelope and mail it to:

Hemiplegic Migraine Foundation, Inc.
PO Box 3762
Burleson, Texas 76028

This small donation adds up quickly when each HMer donates.

We thank you and wish everyone a life without pain, migraines, and HM.

Thank you!

I’ve always had headaches for as far back as I can remember even hormonal-related migraines as I got into my teens. I was a tormented young girl really, each month I was convinced I was going to be the first girl to die of cramps and a migraine… but I survived. As time continued I learned to cowgirl up and migraines became just a part of life. I didn’t get the “I’m going to plow you over and leave you in a heap on the floor that slightly resembles yourself” migraines until I was in my late 20’s.

One day while visiting my parents my life changed. I was working on the computer at home and I felt like somebody hit me in the head with a baseball bat. (Literally I grabbed my head and looked around me.) The lights started flashing- I can only compare it to looking through a ceiling fan. I had just been to the eye doctor that day, my parents rushed me back to him, and he sent me to an eye surgeon who dilated my eyes and diagnosed me with optical migraines and sent me home. No big deal. The next day my husband took me to the emergency room. I spent a week in the hospital and our journey began. I was treated with everything from triptans- which now I know we can’t have to trigger point injections (the only thing that brought relief- but they ruled out once the paralysis began) to seizure medications to antidepressants, beta blockers, calcium channel blockers, nothing worked. I was diagnosed and misdiagnosed with no answers. The doctors said lose weight- I lost 90 lbs. The migraines continued. I had to have an emergency hysterectomy (for unrelated reasons) which they thought would help with the migraines, it did not. I tried every medication, every diet, and every exercise. Nothing helped. We went through doctors and counselors and testing- it was all a dead end.

In October 2010- one month after my hysterectomy I was driving home from a doctor’s appointment and a migraine hit. I couldn’t turn the wheel with my left hand any more. I was 20 minutes from home, and I remember looking up and seeing the hospital sign and thinking I’m not going to make it home. So I pull into the hospital. Now how I made it into the hospital, I don’t know, I couldn’t walk, couldn’t talk, I was in a cute little dress and knee-high boots with 3” heels on them. I must have looked like something else going into that building because I didn’t have to wait AT ALL. I don’t know how they got paper work filled out on me.

I remember the doctors standing over me arguing on whether or not to give me that shot they give stroke patients, and I can hear them, and I can’t talk to them. I’m trying to tell them this happens sometimes. What I don’t know is there’s something showing on the CAT scan. They decide to careflite me to a hospital in Dallas. So I got to ride in a helicopter for the first time. I was not excited. They are not made for big girls. I am almost 6 ft tall, and very very thankful I have lost 90 lbs.

I spent a week in ICU before going home with the diagnosis of a hemiplegic migraine; they were never able to break the migraine. I pushed my body to its limits as I worked a full time job and went to school full time. I was a single mom now and had to support my son. The doctors here had never seen a hemiplegic migraine. They didn’t know what to do. Three months into the terrible migraine I walked into Dr. Jerk’s office. (whose name I will not reveal- although I should.)

“So what do you want from me” he demands. “umm for you not to be an a*****!” “I don’t know what you want me to do.” “I want you to help me.” “Nobody can help you. You are going to have a stroke. You are going to die.”

I did something that day that I don’t do often- I cried. Not in front of him. I waited until I got my car moving down the freeway. But I cried. I left his office and signed a DNR. When I took it to my family doctor for her to sign, she sat across from me and pleaded, “Andria, you’re only 32, I know it looks bad now, please give me one more doctor, if you still feel this way after one more doctor, I will sign.” I agreed, but I didn’t have much hope. Every day my body shut down more.

I had given up hope. The hemiplegic migraines were not my greatest threat. The greatest threat was the increased risk for stroke. The pain levels caused my blood pressure to stay at stroke levels all of the time. Even on high dosages of bp meds they couldn’t control my bp. 183/114, 163/102, 176/108 these numbers were typical for me. The doctors didn’t like it, my head pounded. There was never any relief.

My prayer was to make it through until Christmas with my son. I was still going off of the information from Dr. Jerk that I was waiting to stroke-out, and Lord knows I felt like I was going to die, and my blood-pressure was certainly high enough to cause a stroke.

Well, I did make it to Christmas day, and then Christmas night I collapsed in the floor of a restaurant. I couldn’t walk or talk. My mom sat on the bedside feeding me with a spoon because I couldn’t hold my head up. My body was done. As we were researching we found the Baylor Headache Center. At my first appointment, Dr. Nissan walks in, shakes my hand and asks what I would like to be called. It was a simple question, but it set such a different tone than Dr. Jerk. Everything was different.

I can’t say Dr. Nissan magically fixed me. But he is a support for me. Hemiplegic migraines suck. They do. I hope one day there’s a cure. I hope one day people know more so they don’t say stupid things like “How do you even get out of bed?” And in return I don’t have to reply, “Well thank you sister sunshine for that ray of optimism and hope, I just do what I can to stay strong.”

I am glad that there are others in this journey with me. My mom and aunt have episode of left side facial weakness with no migraine symptoms, it has been undetermined if that is related or not, so all in all the determinations is that I have SHM.

I have too many things to live for, too many reasons to fight every day. I continue to work a full time job right now. That is my greatest challenge at the moment. I am also taking classes to finish my teaching degree. I push forward….because if I don’t… what is it all for? Why did God bring me through it all if I don’t do something good with it? If I don’t make a difference in the lives of others then everything I’ve endured, everything I have survived was in vain. That we can’t live with. HM…. Well, that we can beat.

Stay strong my friends. Stay Cowgirl Tuff. One day my body is gonna figure out how cowgirl tuff my heart and mind are and follow suit, but until then I will continue the fight.

How Can I Have This Ribbon?

Currently, we do not have the individual ribbons available for sale.

However, we will add this graphic to products available in our CafePress store.

Also, you can add this ribbon to your pictures, e.g. Facebook, Google+, Twitter, and more, by going to PicBadges.

What have I tried for my migraines? Everything under the sun! If you have been an “Hmer” for a while, you know about the trial and error of medications. If you’re a new Hmer, you’ll find out. I’ve also tried alternative options, acupuncture, yoga, etc. I’m currently on the last preventative I haven’t tried, Tegretol 200mg twice day. Tegretol seems to be having a very slight effect on the frequency of hemiplegic episodes, but no luck with the pain. I also take Verapamil 240mg per day and Aspirin 81mg per day (to avoid stroke). As you know, as Hmer’s, any of the Triptan medications are contraindicated for us, no help for rescue there. So I take Tramadol (Do not use Tramadol with muscle relaxants as it can cause seizures). For me, the Tramadol only works for migraines under “7” on a pain scale of 1-10 (ten being worst). This means frequent visits to the ER. I have yet to have problems with the ER staff treating me as if I am a “drug seeker”, as I have heard other Hmer’s have. I fear that day. What would I do if they wouldn’t treat me for my migraines? I’ll worry about that when it happens.

More light needs to be shed on this condition, this thief of life. Until then, I’ll survive, as I wait for that day to come. I’ll just try to keep my head up and keep telling myself, “Migraines are NOT the boss of me”.

I moved to Cape Town, South Africa, about 14 years ago, & took to walking for miles along the beaches. I was lying down with a headache after one such walk when I had my first major attack, with total paralysis along the entire right side of my body. I was rushed off to hospital, & diagnosed with a minor stroke, or vascular assault, as they put it. There was no sign on the CAT scan of any brain damage, so I was released, armed with cortisone tablets & Beta Blockers to control high blood pressure. I felt out of touch with reality; all my will-power seemed to have drained away, although I regained the use of the right side of my body after a few weeks.

But the paralysis attacks continued & became more frequent. My GP thought the hospital had missed a small tumour in the brain, so I was sent back for more tests, including an MRI scan, which also showed nothing unusual. I underwent a battery of tests, which only proved that the blood vessels were perfectly clear, & that I should have been in excellent shape.

Eventually – some years later – a young Indian Neurologist, who spent over an hour with me, hit on the correct diagnosis. The first medications he prescribed caused a serious allergic reaction; my lower lip swelled up like a golf ball & my face sagged – right now I don’t recall what the drug was, but I truly thought I was going to die.

Currently I am taking Amitriptylene. I was prescribed 150mg a day, but have managed to cut it down to less than 25mg, which I have to take along with a Beta Blocker. I find I need to take the tablets at exactly the same time each day, or face a reversal.

I live about 35kms from where I work, & as I am concerned about having an attack while driving, I keep very strange hours, starting at 5am before the traffic becomes dense, & leaving at 2pm, before the “rush hour” starts. I would hate to cause an accident & possibly injure or kill someone else, but have no choice about having to work for my living.

To the boring details – in my case, it seems sticking to a rigid routine definitely helps. I eat twice a day, neither too much nor too little, as I feel the familiar creeping paralysis start up if I overeat, but also when I am hungry.

It also means early nights, always. I meditate from 7pm to 7,30pm & am asleep by 8 then it’s up for work at 3,45am. My diet is very repetitive, I suppose. I have always been vegetarian, & have lately become totally vegan – not for health reasons, but because I do not want to contribute to the suffering that animals have to endure at the hands of mankind.

My 2 daily meals consist of brown rice (crunchy, not cooked until the grain opens & goes soft) with a topping of some vegetable, usually with half an avocado & a scattering of nuts, a dash of soy sauce, & a drizzle of an interesting oil, such as olive oil made from young, green olives (tastes the way freshly-mown grass smells!), or else roasted sesame oil. I drink green jasmine tea, & 2 exactly cups of strong, black coffee each day – strangely, less coffee seems to have a really bad effect the attacks. And I find I can eat half a bar of good quality dark chocolate each day, which is always something to look forward to – but no alcohol at all.

Mornings are my best time, as the brain is clear & my vision relatively stable. I have very poor eyesight, with myopia & astigmatism, so I have 2 pairs of contact lenses with different prescriptions, as my vision changes frequently. At times I can see clearly with the right eye, but at others the world looks dark, fuzzy & unstable. When my left eye takes over as the affected one, I can’t risk driving as my right eye is the weaker one. Depth perception is also affected; I have often swerved to avoid lines or marks on the road which I have seen as three-dimensional objects, so I drive slowly & carefully, ready to pull over at the slightest twinge.

Despite everything, the whole HM process can be quite fascinating; the “visions” are often quite beautiful, with scintillating scotomas in gold & red, like some sort of weird script; there are often patterns & differing “textures” in the sky & in foliage. I am quite sure I must embarrass my companions when I stop to admire a wall that is swaying gently, or plants that are shooting off silver sparks that only I can see.

Generally, I work on the assumption that the ground is stable & flat, despite any apparent hollows, waves or vortices. I try to keep a sense of humour going, with references to my psychedelic brain, although I am not sure that this particularly inspires confidence. . . . .

Apart from the paralysis, I dread the aphasia, as I’m sure all other sufferers do. I forget common, everyday words like “scissors”, (although I can often accurately describe their function) & sometimes there is what I call a “conceptual ball” in my head regarding some idea or plan, yet not one word can I find to express it. I also find that some words come to me in one language only – usually NOT the one I am speaking at the time, so I end up speaking a gibberish of English, Spanish, German, Thai & who-knows what else, making my translation ability non-existent nowadays.

The paralysis can never be accurately predicted. Often my vision dims, without the paralysis setting in; but at other times I simply drop to the floor without warning – the cause of many bruises & bumps. I have woken in bed at night thinking that one of the dogs is under the covers with me, only to find that the lumpy object in my bed is my own “dead” right leg.

Sometimes the paralysis moves over my body like a wave, passing upwards from the right foot & causing me to slowly & hopefully gracefully collapse if I am sitting; sometimes it happens only to the right arm or leg, & I have occasionally experienced a sort of repetitive spasm in the right hand. There is a constant mild tremor in the fingers, & the entire right side of the body is definitely weaker than the left. I can really feel it when I sit & work at the computer. It does help to adjust the refresh rate of the screen to as fast as the product can be set, but even as I type now I can feel a sponginess in the right hand & leg.

I have done yoga all my life, but now I can only do very simple postures, nothing that involves bending forwards or inverting the body, as that is a sure way to bring on an attack.

I have been doing “energy work” for a few years, now. It is similar to Ki Qong & involves more visualization & tactile imaging than actual movement. It definitely helps the weaker side of the body. Also, grounding myself at the very onset of an attack sometimes works for me – standing barefoot in direct contact with the earth, & sending energy downwards through the soles of the feet like sending out imaginary roots. Perhaps other sufferers may benefit from trying it, but it seems each person has their own personal set of symptoms & what works for one may not work for another . I am still experimenting with hemi-synch sounds, to see whether this improves or worsens the condition, as it is supposed to equalize the functions of the 2 hemispheres of the brain.

I have often wondered whether having migraines is related to the “Esoteric”. Sensitives & psychics have a way of experiencing consensus reality very differently from what most us do, which leads me to question whose version the “real” one is – if either! And, while I don’t know of any studies on it, could Kundalini events be somehow involved? There have been occasions just before an attack, when I have felt a strong pressure moving like a snake up my spine, pushing upwards & through my nostrils quite painfully, just before the face begins to droop.

So many questions & so few answers from the medical world! It seems so wrong that HM sufferers should be prescribed drugs like Amitriptylene, which is an anti-depressant. I have never been depressed (without reason) & taking a drug off-label can actually cause the very symptoms it was designed to treat.

It seems like a hundred years ago that I used to work in broadcasting; I was trained as a classical musician, but of-course I am not able to pursue that now, quite apart from the fact that I’m getting too old. Listening to Beethoven or Busoni on earphones brings on that spaced-out feeling that I am careful to avoid, so I ration my listening carefully. Even writing has become a chore, now that the intervals of utter blankness no longer support that pleasurable sense of words flowing through me. Besides, I can sometimes look at a word in puzzled fascination, & not have any idea what it says. And traveling, my other great obsession, is out of the realm of the possible, too.

Still, I am grateful that it is not all as bad as it could be – I do not need a wheelchair like some poor sufferers do. I can still take long walks on Saturday mornings, as long as I’m home by about 3pm & spend the Sunday relaxing & recovering.

So let me end off here & wish all fellow sufferers well – be strong, there must be a way we can beat this, or at least manage it so that we can still live productive, fulfilled lives!

And thank you for the opportunity of joining this community, I feel less alone already!

We see these questions being asked over and over again.  In the beginning of my own journey, I struggled with these same questions. It’s taken years to find the answers or at least a portion thereof.

These are the keys to Hemiplegic Migraine (HM) care.  In this article, we’ll talk about each of them and then explore them in more detail in follow-up articles.  Keys 3-5 are the 3-Part Balanced Recipe where you need equal and balanced attention to each of these keys in order to take back some control over this disease.

Key 1: Educate Yourself

In order to actively participate in your own care and be your own advocate, you need to educate yourself.  Learn all you can about migraines and Hemiplegic Migraine (HM).  Talk with other HMers and learn from their stories.  Ask questions and seek answers to your questions.

Key 2: Find The Right Migraine Specialist who knows HM

Many of us are under the impression that doctors should know how to diagnosis and care for migraine and Hemiplegic Migraine patients.  I know I was.  I trusted that my doctor knew how to care for me and I didn’t question him.  That was a huge mistake and nearly cost me my life (but that’s a different story).

We must remember that HM is rare, migraine research is highly underfunded, and there is little research on our specific variation of migraines, i.e. HM.  Given those facts, finding a neurologist who is experienced and skilled in migraine care can be difficult.  Now try to find one who is also experienced and skilled in HM care.

When looking for a neurologist, seek one who is a migraine specialist.  In her article Migraine and Headache Specialist – What’s So Special?, Teri Robert provides a list of what makes a migraine specialist so special.   Call his/her office and ask if they have other HM patients and ask about the staff’s experience and credentials specifically in related to HM and migraines.   If you are able to travel, seek out patient-recommended doctors as these are the ones that other HMers are already using.

Once you find a specialist, next you to need to determine if this staff will work with you, listen to you, and allow you to be a part of your overall care.  You are a key component and voice to your care.  You have the right to participate.  If this specialist will not include you, you have the right to fire him or her.

3-Part Balanced Recipe

The following three keys are the essential pieces of the recipe for improving your overall health and taking back some control over this disease.  Remember that each piece is vital and an equal component.

Key 3: The Right Medications, in the Right Dosages & Combinations for You

Every feel like you’re a human guinea pig with all the different medications and dosages you and your doctor are trying?  This process can be very frustrating, especially because at the same time you are probably also working on the next two steps/keys as well.  We must remember that each of our bodies and systems are different.  Therefore, how we respond to medications will be different.  One medicine may work for one person, but may not work for you.

Here is where you need to work with your specialist closely and educate yourself on available medications.  Typically we find that we need a combination of medications and the dosages will probably be adjusted throughout our lifetime.

Key 4: Identification of ALL Your Triggers

Hemiplegic Migraine (HM) attacks are triggered by various stimuli.  A vital key to your care is to identify each and every one of these stimuli that specifically trigger your attacks.

We’re often asked: How do I do this?  We’ll briefly talk about the process here and then cover it in more detail in a follow-up article.  Ultimately, this is an investigative process that takes time and active, constant effort.  Time to put on our detective hats.

Step 1: Know All the “Potential” Triggers

A “potential” trigger means that this trigger is known to affect other migraine and HM sufferers.  Therefore, it is a possible suspect.  In a follow-up article, we’ll provide a list of all “potential” triggers.

Step 2: Migraine Diary

Start a migraine diary today. Right now.  It does not have to be a formal software program or journal.  It can be a simple spiral notebook.  You have to get into the habit of writing it each and every day and throughout the day.  This diary will provide you and your medical team a vital tool in the investigative process.  It shows your history, identifies patterns, and shows what works and does not work.

In this diary, you want to write down at least the following:

1. All medications, herbs, and vitamins you take, dosages, and when you take me
2. Your sleep pattern: duration, how well you slept, how many times you woke up, did you have difficulty falling asleep or staying asleep, etc.
3. Everything you consume, food and drinks.  List ALL ingredients including spices, oils, herbs, and if a packaged item list the name of the item so that you can track the ingredients (if you don’t want to list out its individual ingredients).
4. Everything you put in your mouth, including toothpaste, mouthwash, floss, breath mints, candy, etc.
5. Weather each day including temperature, humidity, conditions (hot, rainy, thunderstorms, snow, windy, etc.), and barometric pressure.
6. Stress and stress levels
7. Exertion activities, including exercise, sex, etc.
8. All symptoms including pain scale (0-10, with 10 being the worse pain you’ve heard had), location, etc.
9. Where you went, such as store, sporting event, family event, etc.
10. Any trigger experiments, such as “I eliminated xyz today.”
11. Anything unusual or worth noting

Key 5: Elimination of ALL Your Triggers

Each time you find one of your triggers, you must eliminate it.  For those triggers that you cannot eliminate, such as weather and fluorescent lights in public buildings, then you need to develop strategies for managing and controlling the trigger.

For example, fluorescent lights are a huge trigger for me.  I wear special wrap-around sunglasses that completely conceal my eyes (they have side and top shields) and are for extreme photosensitivity (photophobia).

Written by: Tonya L. Mork

Fighting Headache Disorders … through Awareness

Migraine.com

Get involved and help raise awareness about this disease.

My symptoms started after a major headache in July where I thought I was going to die, after suffering from migraines for the past 10 years this was totally different as the pain was in the back of my head.I recovered being left with symptoms of confusion and forgetfulness. 2 weeks later I was rushed to hospital with suspected stroke I lost the ability to walk and talk. I spent a week in Hospital where I had a CT scan, numerous blood tests and approx 8 unsuccessful attempts at a lumber punch. I was discharged from hospital the same as I went in with the information that I had not had a stroke. WHAT WAS IT I HAD WAS THE QUESTION !!!!!!!!!!!

I made an 80% recovery and thought it may be a viral thing but was rushed back into hospital 10 days later as I had collapsed like a rag doll at home.

After 8 more days in hospital and more tests and a successful lumber punch I was diagnosed after seeing a Neurologist 6 weeks ago as an outpatient as having HM my symptoms are full body paralysis and my auras are right sided weakness with slow slurred speech. My internal functions (bladder and bowels) are also affected in addition to the hot and cold moments.

I deal with the general public, heads of school and local authorities on a daily basis who either think I am drunk or stupid by the way I talk and I constantly have to explain that I am struggling with my speech at the moment. I also need the aid of a walking stick on occasions. The medication so far that I have tried had poisoned my body so am due to see my neurologist tomorrow for the next batch.

I rule my life not HM rule me I make the most of my good days and still guide to very successful business’ which we have just won The Best Training Provider Award in Medway and my company has only been going for 3 years. This is a dreadful illness we need to make people aware.

On a daily basis I struggle with speech and walking along with many other symptoms, I am losing faith with the medical world and beg for someone to help me.

I feel that there is not enough know about this dreadful condition and feel I need to let everyone know so we can help others, and reduce the number of suicides because of Hemiplegic Migraines.

MY GLASS IS ALWAYS HALF FULL but I do shed the odd tear.