Migraine Experience…

Excedrin has been working with Migraine sufferers like myself to put together a virtual reality to show their loved ones what a migraine “looks like” when one starts for them – it’s an interesting video – https://www.excedrin.com/migraine-experience/ – when I saw the commercial on TV the first time I broke down crying – I have always looked for a way to do that….


What is a migraine emergency?

By Tammy Rome—July 31, 2015

Two years ago I was doing some last-minute shopping the night before Thanksgiving day.  I started experiencing a prolonged aura that could have been the early signs of a stroke.  After an hour of progressively worsening symptoms, my husband took me to the local ER for evaluation. All the tests were clear, so I was sent home with instructions to return if the symptoms recurred. Fortunately they never did.  Even though it was a “false alarm”, that’s one ER trip I will never regret. Knowing the signs of a true migraine emergency is essential for every migraineur and caregiver.

People who say “Migraines don’t kill” have obviously never heard of these life-threatening complications, any one of which can be deadly if not diagnosed early and treated aggressively. We get so accustomed to tolerating the pain that it’s easy to forget how dangerous migraine can be sometimes. We take for granted that “…at least it’s not fatal” when we should be much more vigilant.

Migraines can kill.

There are four potentially life-threatening complications of migraine. Even though they are rare, learning to recognize the symptoms is essential for every migraineur. Knowing what to look for helps determine when it is appropriate to seek emergency help.
If you do end up in the ER with these symptoms, it is critical that you (or your caregiver) be able to clearly explain the symptoms that you are experiencing so that you get fast response to either rule out problems or get emergency treatment right away.

  1. Status migrainosus
  2. Migrainous infarction
  3. Persistent aura without infarction
  4. Migraine aura-triggered infarction

Status migrainosus

Any migraine attack that lasts longer than 72 hours should be evaluated by a doctor. Even if you are able to sleep through the attack or get temporary relief from taking medication, you still need to get it checked out.  Doctors will want to rule out stroke and administer treatments to break the cycle. Sometimes long-lasting migraine attacks are caused by other problems such as medication overuse headache. However, status migrainosus must be ruled out first.

Persistent aura without infarction

Anytime we have an aura that lasts for 1 week, we should get it checked out. Again, your doctor should rule out stroke before giving this diagnosis. On rare occasions, persistent aura without infarction can last for years.

Migrainous infarction

This is what doctors are trying to rule out in order to make a diagnosis of persistent aura without infarcition. It appears like a typical migraine with aura except that the aura lasts for longer than 60 minutes. When tested, an MRI or CT scan will show evidence of a stroke. This is distinct from the increased risk of stroke in younger patients (under 30) with migraine with aura.

Migraine aura-triggered seizure

The name is pretty self-explanatory. It is a seizure that is triggered by a migraine attack and typically occurs within the first hour during or after a migraine attack. Patients with epilepsy often experience migraine-like headaches just as the seizure is ending. When a seizure follows a migraine attack, is it commonly referred to as “migralepsy”, although the more accurate diagnosis is migraine aura-triggered seizure.

Of the four complications of migraine, only status migrainosus is seen in patients with migraine without aura. The other three are only seen in migraine with aura. Since none can be accurately diagnosed without at CT scan or MRI and time may be critical, the ER is best equipped to determine the level of your emergency, rule out life-threatening issues, and provide the right interventions should you experience one or more of these migraine complications.

Print off this article.
Memorize these symptoms.
One day your life may depend on it.


In addition to the situations listed above, please ensure that you discuss any symptoms that are new or different with your physician or a healthcare professional. While migraine symptoms can change over time, it is essential to rule out any other underlying causes for your symptoms.

30 Things About My Migraines…

30 Things About My Migraines…that you may or may not already know.

  1. My diagnosis is: Chronic migraine with and without aura.
  2. My migraine attack frequency is: Three to four times a week, and sometimes almost daily.
  3. I was diagnosed in: 2003 After having a seizure that got my Dr to finally believe I had something going on that wasn’t “just a headache”
  4. My combined conditions include: IBS and constant never-ending pain in head in neck since about 2007.  Hypertension
  5. I take: 5 medications:  3 each day for prevention (2-3 doses of each every day) and 2 medications to treat an acute attack.  I also take medication every night to help fall asleep, (lack of sleep is a big trigger for me) And Every 3 months I get 31 injections of botox into my head and neck.
  6. My first migraine attack was: My mom said I was around 4 when I started to complain about my head hurting.  But they really started to get bad when I was a teenager/young adult
  7. My most disabling migraine symptoms are: Pain and nausea both can be extremely debilitating, Unable to remember things or unable to find the words I need to describe what I need or how I feel.
  8. My strangest migraine symptoms are: Feeling of being cold, like the temp in the room is around 50-40F
  9. My biggest migraine triggers are: Chocolate (also causes hives), smoke, changes in sleeping patterns, skipping meals, fluctuating hormones, Weather, Stress…
  10. I know a migraine attack is coming on when: I get very cold, depressed, tired, dizzy, “shimmer” or aura (dancing lights, shadows, loss of vision in one spot)
  11. The most frustrating part about having a migraine attack is: Not being able to stop it.
  12. During a migraine attack, I worry most about: Stopping the pain, being a burden, throwing up, having a stroke.
  13. When I think about migraine between attacks, I think: I try not to think about migraine between attacks, but if the thought creeps in I hope my medication will abort the next attack
  14. When I tell someone I have migraine, the response is usually: Met with lots of questions, or I feel like they don’t believe me.
  15. When someone tells me they have migraine, I think: I understand and wonder if there is any way I can help them.
  16. When I see commercials about migraine treatments, I think: More research is needed, and they make it sound like “just take a pill and all will be better”
  17. My best coping tools are: Ever changing
  18. I find comfort in: PJ’s, dark room, my dogs and my husband.
  19. I get angry when people say: At least you can’t die from it.   it’s just a headache.  I HAD a migraine (to me migraine is not something you have and don’t have)
  20. I like it when people say: They want to know how they can help me, they want to know what my triggers are, they say they believe me.
  21. Something kind someone can do for me during a migraine attack is: Be kind to me, bring me water, be understanding that I can’t communicate in the best way
  22. The best thing(s) a doctor has ever said to me about migraine is: “I also suffer from migraines”
  23. The hardest thing to accept about having migraine is: My limitations and how different my life is with migraine
  24. Migraine has taught me: Life is not about fairness, but life is lived.
  25. The quotation, motto, mantra, or scripture that gets me through an attack is: “This too shall pass.”
  26. If I could go back to the early days of my diagnosis, I would tell myself: It’s going to be a long haul, but someone will believe you one day.
  27. The people who support me most are: my husband
  28. The thing I most wish people understood about migraine is: It’s so much more than a headache.  It affects my whole body.
  29. Migraine and Headache Awareness Month is important to me because: It’s vital for public to understand how debilitating migraine can be and how negatively it can impact someone’s life.
  30. One more thing I’d like to say about life with migraine is: Finding a good support network is an important part of a migraine treatment plan.

What a migraine attack is like…

I have been suffering since I was 4 years old with migraine attacks – most months I have 14-20 attacks.  I have also had a headache that has lasted about 9 years now.  It never stops, it never goes away – never goes below a 2 on the pain scale.  When that pain reaches about a 6 or 7 – that’s when the other migraine attack symptoms start to come into play.

Most do not know this, but there are 4 stages of a migraine attack:

  1. Prodrome
  2. Aura
  3. Headache
  4. Postdrome

Prodrome is the premonitory phase. About 80% of Migraineurs experience prodrome, although their friends and family may actually be the first to notice something about the patient doesn’t seem ‘quite right’. Prodrome is not focused on any particular area of the brain.  Some symptoms of prodrome may include:

  • Appetite changes (which may include cravings)

  • Cognition and concentration difficulties

  • Cold extremities

  • Diarrhea or other bowel changes

  • Excitement or irritability

  • Fatigue

  • Frequent urination

  • Memory changes

  • Weakness

  • Yawning, stretching

For me – I will get very – VERY cold all of a sudden.  Like someone dumped me in a tub of ice.  My hands and feet will get extremely cold and sometimes even my finger tips will get bluish in color.  My body temp has been recorded as on the lower end of the ‘normal” scale.  I get to a point where I can’t form words, cannot express what I want or how I feel.  Like there is a short from my brain to my mouth.   I will sometimes get false smells, tastes in my mouth, extreme fatigue, sore neck, fidgety like I can’t sit still.  Lastly I will sometimes get depressed, like my whole world is going to come crashing down on me.  I have been known to have a sobbing fit, like a small child who has misplaced her stuffed teddy bear.

Aura is a very dramatic, focalized result of the brain’s (electrical) wave of spreading cortical depression. Aura is most often visual or hallucinogenic in nature, although it may be sensory or motor as well. Some auras can be so profound as to mimic a stroke. Only a small percentage of Migraineurs experience aura.

Symptoms of migraine with typical aura

Visual aura are the most common kind of typical aura, experienced by more than 90% of patients. The first sign of visual aura is usually a small area of either brightness or blindness in the center of the field of vision, which typically spreads gradually outward from that central spot. This disturbance can take many different forms, such as moving zigzag lines, geometric shapes, blind spots, white or colored dots or stars, and flashes of brightness. The area of disturbance is often described as a crescent or C-shape with a shimmering outer edge, and vision tends to return to normal in the center as the disturbance spreads outward.

Reported by around 50% of patients, sensory aura are often described as a feeling of “pins and needles” or a burning sensation that starts in a particular spot (often the hand) and spreads slowly over that side of the body, face, and mouth. For many people, a feeling of numbness takes over the affected areas as the initial sensation subsides. Sensory aura often follow an experience of visual aura, but they can also occur as the only aura symptom in some cases.

Symptoms of speech and/or language aura can include trouble recalling words (most common), problems understanding language, and difficulties in reading and writing. About 30% of patients report having speech and/or language aura symptoms with migraines, making it the least frequently occurring kind of typical aura.

The ICHD-III states that typical aura symptoms usually last for more than five minutes but for less than an hour. However, a 2013 article reviewed the results of ten migraine studies that reported information about the duration of the participants’ typical aura symptoms. The authors reported that between 12%-37% of patients in those studies actually experienced typical aura that lasted for more than an hour. There are also rare cases in which typical aura have persisted for days or weeks.

For me Aura starts in with phase one – they are hand in hand.  I live in a state of prodrome and aura most of the time.  I for from attack to attack in a state of visual changes, loss of memory and concentration.  I will sometimes get one line for a song or a movie stuck in my head – it will play over and over – just that one line.  I will get phantom smells, tastes that are more intense than they were in the beginning of this attack.  Dancing lights in my vision that look like the slides of sells from back in my high school science class.  I will get dark spots, shadows that move around or even loss of vision in one of more spots.

Headache is the most common phase of a Migraine attack, although not all Migraines are painful.  Some physicians include headache resolution as a separate phase of Migraine.

Like I said before, I live in constant pain, so when the attack reaches the “pain” stage it goes from a lower tolerable level – to something that makes me want to hide under the covers.  I get to the point where I fear I might pass-out or get sick – sometimes both.  I have had to crawl from the bed room all the way to our bathroom across the house on my hands and knees.  Dragging my pillow with me so I have something to lay on when I get there.  My loving and supportive husband will offer to make my rescue medication for me sometimes, its a powder based medication that you mix with a small about of water and drink.  It tastes like a ground up Altoids, I know that doesn’t sound unpleasant – but when you are in a fill blown attack – its one of the last things I wanna drink.  I also have one that is a tab that you place on your tongue and it melts – but alas, it also has the same powerful mint flavor.

Postdrome is the last phase of the attack and occurs past the point of headache resolution. Commonly called a ‘Migraine hangover’ these symptoms may persist 1-2 days past the headache phase.

This is the “hangover” part of the attack – I go from this to the start of the next one it seems without any real-time of being “normal.”  I feel very tired, my skin, skull and even my hair hurt.  I feel as if I was running or fighting for my life – like I was in the boxing ring.  My eye muscles feel sore, my legs and arms don’t want to work quite right.  I have massive depression and guilt that start to kick in right about this time.  If we had to skip an event because of the attack it’s even worse for the guilt.

For many years I felt alone, I felt like my husband resented me – and I felt like no one believed me.  My bosses would not understand why I would call in sick, or come in to work and not be that productive.   I have had 3 rounds of Botox to try to prevent the attacks – I will do a separate post to go over how that is going.

A Migraine attack without prodrome, aura or postdrome is still called a Migraine. A Migraine without headache pain is called Acephalgic Migraine.

Most facts were found here – http://migraine.com


Some of what I am writing I have never told anyone – its been too hard on me – I usually cry and can’t get the words out.