The 2020 Online Migraine World Summit Announced

I am excited to share the following information about the 2020 Migraine World Summit. Educating myself about the impact of migraine disease on my life is crucial to my continued improvement and management of this chronic condition. If this interests you and you’d like to learn more, please read the information below and sign-up for this free patient education event.

The largest patient event in the world for migraine and headache disorders returns this March 18-26.

The 5th annual Migraine World Summit brings together 32 experts, including doctors and specialists, to share new treatments, research, and strategies to help you improve your migraine and chronic headache.

The event is held online which means you can watch it from the privacy and comfort of your own home.

WHY WATCH?

  1. World-Leading Experts: At the Migraine World Summit, you’ll learn first-hand from 32 of the world’s top migraine and headache experts from leading institutions including Stanford University School of Medicine, Harvard Medical School, and the Jefferson Headache Center.
  2. Full Access: Many of these world-leading experts have long waiting lists and fees that are beyond what the average insurance policy would cover. Skip the waiting period and get straight into the room with these experts.
  3. Free: The event is free to watch from March 18-26. Each day four new interviews are available for 24 hours, after which they are replaced by the next day’s interviews. After March 26, transcripts and interview copies are available to purchase.

Register here for your FREE access

Join more than 100,000 new and returning attendees and tune to 32 NEW interviews to find the answers you need to help better manage migraine and chronic headache. Questions answered include:

  • How does migraine affect memory and cognitive abilities over time?
  • What is the best diet for migraine?
  • How can chronic migraine be managed?
  • What is the relationship between migraine and autoimmune or inflammatory diseases?
  • What new treatments are available or coming soon?
  • What new non-medicinal alternatives are now available?
  • is CBD a proven migraine treatment?
  • What advice do experienced patient advocates have to share?
  • How did someone win Olympic Gold while battling migraine?
  • Is migraine a genetic disorder?
  • How does trauma (physical or emotional) affect migraine?
  • Which celebrities also have migraine?
  • Is there a proven surgery for migraine?
  • What is mindfulness-based stress reduction?
  • Which supplements can help reduce migraine?

The virtual Migraine World Summit is free from March 18-26, 2020. Get complimentary access when you register today.

Register here for your FREE access

See you at the Migraine World Summit!

2020 Migraine World Summit

Save the date! The 9-day online Migraine World Summit will premiere from March 18 – 26, 2020.  Get your free ticket now!

2020 Migraine World Summit

Migraine Quicksand

So many things are upsetting about migraine disease including the pain, stigma, and disability. I’ve started noticing how often I lose chunks of time when I’m struggling. It feels as though I’m walking down a dirt road, complete with bumps, holes, and smooth spots, but during a migraine attack I find myself stuck in the loam. The same holds true for when my daughter struggles. Everything stops, and migraine sucks us into the quicksand at the side of the road. Unable to move forward we stop toiling until it lets up and we can crawl out to recover.

Once on solid ground we realize how much we’ve missed. Time with family, school and work commitments, and daily chores are all lost in time. Catching up and making up are just out of reach, somewhere in the fog that follows us through this part of our lives. The road is unstable, exhausting, and painful but is our road to walk. We keep trudging forward, enjoying the smooth spots along the way, and hoping for a more peaceful road. We have no other choice.

"Who is that girl?"

trilobite fossils
picture   
   child with sparkling eyes
   caught in time like trilobites
   motionless and glorified

   picture   
     child with sparkling eyes
     beneath the surface, she fights
     desperate and horrified

     picture   
      child with sparkling eyes
      caught in time like trilobites

DNA in the Migraine

There is DNA in the migraine story of my family. My mom called them “sick headaches,” and sometimes I’d find her on the couch when I came home from school. These were the only times I ever saw my mom lay down during the day, and even with a “sick headache” she’d get up and start dinner as soon as dad’s truck pulled in the driveway after work. She never showed him her pain – it was embarrassing and a sign of weakness – but I saw how she suffered.

Around the time I turned 13, the head pain and nausea I’d been experiencing throughout my childhood was finally referred to by my parents as “sick headaches.” The stigma of these “sick headaches” (migraine attacks) was also attached, and I knew they were something I had to hide from others. I hid them for decades until I couldn’t hide them anymore. Even with regular medical care and a slew of migraine medications, I lost my job of over 20 years, because of chronic migraine attacks and comorbid conditions.

I don’t know if it was the fog of my own struggle with chronic illnesses or the learned embarrassment and fear of appearing weak from my childhood “sick headache” experiences – but I failed to recognize the symptoms of migraine in my child. She often complained of stomach aches in elementary school and had been sick in the car several times. When she started middle school, the head pain started and eventually became a daily occurrence. It wasn’t until her pediatrician referred her to a neurologist that she was diagnosed with migraine.

Even with regular medical care and a slew of migraine medications, she is still experiencing daily migraine attacks. She has the typical comorbid conditions (anxiety and depression), which make the migraine attacks worse. Treating her anxiety and depression is, in turn, hampered by the migraine attacks. Also, the trauma she suffered as a younger child likely contributed to the attacks. She’s stuck in this cycle that is not her fault, and I’ve been unable to break her free.

All of this is in her DNA, passed on from her family going further back than I am even aware. It’s not just the genetic predisposition for migraine but the family history of trauma, also likely going back further than I know. It’s like a glitch in the DNA, turned on by chance at birth, and compounded by negative life experiences – a family glitch we no longer hide.

Related post The Passage of Pain.

After the Migraine Attack

The migraine is over, and I’m ready to take on the day — or am I?

The first thing I notice, upon waking, is that the pain is gone, and I feel elated like the pain from yesterday has caused a rebirth in me! I move to get out of bed and sense the soreness that tightens and ripples through my body. I stand up, determined to ignore the aching, but my head reels and swirls causing me to steady myself for a minute. Then, adrenalin cascades through my veins as I contemplate the tasks ahead of me today.

Once dressed, I open the curtains and then immediately close them because the daylight feels too intense and is burning into the pupils of my eyes. A hat, dark sunglasses, and lots of squinting facilitate the morning drive to the kid’s school. Soon, I find myself sitting at my desk, staring at the computer screen and thinking, “What was it that I needed to do today?” I read the to-do list and decide to do it tomorrow and feel comforted by the fact that I actually made a decision..

I decide to write a post about migraine postdrome, also known as migraine hangover, in hopes that it may be helpful to others. For so many years, I was unaware of this final stage of a migraine attack and understanding it has helped me learn to cope better. The worst part of migraine postdrome for me used to be accompanying depression because when I realized that I was unable to perform at a “normal” level of activity after a migraine, I felt weak, lazy, and useless.

Now, I take a step back and remind myself that I can be productive as long as I modify my activity. Simple and mundane tasks are now on the to-do list for today so that when I am feeling better, I’ll have more time to focus on more ones. It is still a struggle for me to quiet the negative self-talk, but I’m very much a work in progress.

Migraine postdrome is real and can last for up to 2 days. With all the focus on treating the migraine attack, we must not lose sight of the final stage of migraine and how to recover in a way that works best for us.

For more information about migraine and migraine postdrome, visit the American Migraine Foundation.

Surreal Torment

Migraine
From danathepania.tumblr.com

No More Waiting

Yellow and orange paint dripping on black background.

Throwback to Waiting

https://undeniablysara.com/2016/06/26/waiting/

Trepidation

A winding road with trees and fog

Ending Invalidation

It happened again, or should I say it’s still happening.  Last night, I was talking with a close family member about my seriously ill sibling.  I can hardly imagine the mental turmoil and pain my sibling is experiencing, and I feel terribly for their suffering.  We spoke about the latest test results, how fatiguing the treatments are, and how strong they are to continue working during this illness.  I admire my sibling and hope they can recover quickly and thoroughly, to resume a healthy life.  

What happened during this conversation that has been lingering in the back of my mind since last night?  It is the starkly different approach to the invisible illnesses myself and my children have been fighting for years now.  I try not to bring up our health struggles, but in a moment of weakness and a longing to talk to another adult about a recent health concern with my youngest child, I did.

I was met with negative comments about my need to continually take my children to doctors, how the test results don’t mean anything,  and I should just tell my children to tough it out.  My children all have post-traumatic stress disorder (PTSD) as a result of repeated childhood trauma and exposure to domestic violence.  They struggle with depression, anxiety, and low self-esteem.  Asthma, chronic pain, and chronic migraine add to the already devastating diagnoses. 

They see a therapist weekly, have annual checkups with the doctor, and get their flu shots.  Also, there are urgent care visits for severe colds that aggravate asthma, in-office procedures to combat chronic pain, and those that attempt to prevent more migraines, as well as hospitalizations for depressive episodes and suicidal ideation. Do they see the doctor more often than the average kid?  Yes, they do – because they need medical care for conditions that are not visible to most people.

At the end of the conversation last night, I had a familiar, unsettling feeling.  When I was a child, I had several health struggles.  Some of them presented with obvious physical symptoms and were, in time, treated.  What I remember most about my health struggles as a child was being told that what I felt was imaginary, not real and that I was causing it to happen. 

Traveling in a car with me as a child was awful because of my severe motion sickness.  This was no secret, but I was always told that I was making myself sick.  For the life of me, I can’t imagine why I’d do that.  Vomiting in a car is no way to make friends, positively influence people,  or have any fun.  Eventually, that motion sickness turned into episodic migraines, but I was still bombarded with messages that I must be doing something to make myself sick.

As an adult, and in part because of an abusive, decade long marriage, the migraines became chronic.  After a vicious divorce and financially devastating child custody battle, the migraines only got worse.  Eventually, I was put on extended medical leave, but not after making significant and repeated mistakes at work because of my stubbornness to work regardless of my medical condition.  After all, I should be able to push through and stop making myself sick, right?  I eventually lost my job and have been fighting to regain my health and financial security for years now.

I don’t talk about my personal struggles with family anymore because I don’t think anyone wants to hear about it, and I certainly don’t need the negativity. I have a chronic neurological condition. It is real and invisible.  It has nasty leaches called depression and anxiety that drain me of any migraine-free days I might have.  I do not wish this on anyone, yet I have a child with chronic migraine.  I feel guilty and responsible for my illnesses and those of my children, even though I know I did not cause them.

Yes, I take my children and myself to the doctor to receive timely, appropriate medical care.  We also get up every day and push our way through and jump over (or crawl under) the hurdles life throws at us.  None of us have a potentially terminal diagnosis, like my sibling, but our lives are severely impacted by our invisible illnesses.  We didn’t cause them, and we don’t make them happen.  In fact, we are doing everything we can to get better, whether anyone believes it or not. 

The invalidation that happened to me as a child is still happening to me as an adult.  The stigma of invisible illness is alive and well in my family, but it ends here.  I will be the last of my family to be invalidated by loved ones about how I feel. My children will not be blamed for their illnesses, and they will be given the help they need to recover, so it doesn’t happen again.