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Saturday, November 18, 2017

AHMA Facebook Live Presentation: Our Journey with Migraine and Cluster

Current and former members of the American Headache and Migraine Association met to discuss their journey with migraine and cluster headache. 
Our journeys are different, but the results were similar.  We kept looking for answers, and refused to give up. 
Thank you Jamie Valendy, Michele Vargas, Bob Wold, and Eileen Brewer. 

Wednesday, January 11, 2017

New Migraine Infographic.

The American Migraine Foundation published this infographic 1/11/17.

Care and Empathy at a Cardiologist's Office

I see a cardiologist every year.  In addition to having a family history of heart disease, I have high blood pressure. I also have some mitral valve thickening, possibly a consequence of taking a migraine preventive, Methergine, for a year. It can cause the formation of fibrotic changes in the body.   

I had my yearly echocardiogram a week ago to make sure the valve issue had not progressed. I had an appointment with my cardiologist yesterday to review the results.  

I woke feeling hung-over, like I was in the post-drome or prodrome phase of migraine. I used my Cefaly and my Spring TMS to see if I could stop whatever was happening without using my NSAID, diclofenac.  I am very careful about Medication Overuse Headache (MOH), which can happen with regular use of NSAIDS, Triptans, and other analgesic meds used by people with head pain disorders. I keep track of its use, and my usage was getting into the danger zone of more than twice a week.

By the time I got to the clinic, I knew i was in trouble. I was dizzy and nauseated. I checked in and sat down, right next to a guy who smelled of cigarettes. I got up, moved to an empty area of the waiting room and tried to get in my "Zen Zone." I put my earplugs in, rubbed some essential oils under my nose, positioned my hand and neck scarf over my eyes to shut out as much fluorescent lighting as possible, and tried to concentrate on my breathing. I was miserable.  

Here is where the amazing part begins.

After what seemed like forever, the medical assistant called my name. I stumbled toward her and she asked how I was doing. "Migraine." I muttered.  She took me into the exam room and shut off the light. "My boyfriend gets migraines," she said." "I can see fine from the light of my laptop."  She took my vitals, and began to ask me about my med list. I handed her my (very long) list. She took it, and told me she could type everything in at her desk, and to feel free to lay down to wait for the doctor.  

It felt great to lay down. I went into my Zen Zone again, and started to feel somewhat better. An EKG tech knocked on the door.  I told her she could turn the light back on because I was feeling better.  She told me that she also gets migraines, and was having lasik surgery on Friday to make sure that her vision problems were not a migraine trigger. She did the EKG and turned out the light as she left.  

A short while later, Dr. James, my cardiologist, knocked on the door. In addition to being his patient, we have been friends for a long time. "Migraine?" "Yes," I said.  "But you can turn the light on. I am feeling a lot better."  He flipped the light on, got a big grin on his face and said, "You got an A on your test."  Then handed me my results. 

I was very grateful for the respect and compassion shown to me by the staff and my physician at the Thoracic and Cardiovascular Institute. To most people, this event would seem inconsequential. To a migraineur who faces the stigma of her disease on a regular basis, this was a breakthrough. 

Thank you, Dr. James.  Make sure you show this to your staff.  I want you all to know how much your kindness meant to me.  

Tuesday, June 28, 2016

Concurrent Use of Cefaly Device with Botox is Not Recommended

A user on the Remedy Health - Health Central Facebook site recently asked if it was okay to get Botox while using the Cefaly device.  (

I have been using both for about 3 years now, and wasn't sure, so I emailed the folks at Cefaly. Their response was surprising.

Me:  "Is there any reason to avoid using the Cefaly after getting Botox?"

Von (customer service rep): "Botox and the Cefaly device work by different mechanisms. Botox paralyzes the nerves, and the Cefaly stimulates them. As the results obtained with the Cefaly device could be altered if you have Botox injections at the same time, we generally recommend our patients to use the device at least 4 months after Botox injections, so that they can better see the result they will obtain with the device."

I requested further clarification. The response: "To clarify, you can use Cefaly if you've ever used Botox at all in the past -- but we advise not to use the two treatments at the same time (my italics and bolding).  Meaning, if you've had a recent Botox injection, you should wait at least 4 months before trying Cefaly, so you can see accurate results."

I asked about 4 specific scenarios that others might like to see addressed. These are below, along with their attendant responses from Adeline at Cefaly.

1. A New Cefaly user who is already successfully using Botox. 
Given the opposite actions of Botox and Cefaly, a successful Botox patient would probably not benefit from the Cefaly device. But if they still want to try it they need to wait at least 4 months after their last Botox injection. 

2. A New Cefaly user who would also like to begin using Botox.
Same here: they can use Botox but wait 4 months after the injection to start using the device again. If the Botox therapy works, then they will probably not need the cefaly device anymore (like for scenario 1).

3. An Experienced Cefaly user having positive results, who would like to begin using Botox. 
Again, given the opposite actions of Botox and Cefaly, a successful Cefaly patient would probably not benefit from Botox. However if they want to try, there is no need to wait after using the Cefaly to start Botox.

4. Someone like me, who has been using both for a while because I did not know about the recommendations. 
In your case, if you did not wait 4 months after Botox to use the Cefaly device, the action of the device probably was not as efficient as it could have been. Botox is a pretty radical treatment whereas Cefaly is a gradual one, so if you use the device on the same day you got a Botox injection, it will be overpowered by the Botox and not work as well. If you want to try the device fully, you need to wait around 4 months after your latest injection.

These recommendations were not found on the Cefaly website, nor were they mentioned by the Cefaly reps in the exhibit hall at a recent AHS conference. I suggested that they make sure it is addressed by both in the future. 

Saturday, June 25, 2016

"What's Under the Hat?"

In conjunction with the European Headache Alliance and AHMA's "What's Under the Hat" Initiative: 
What's under MY hat? I am a wife, mom, grandma, nurse, health educator, and health advocate. I have been a warrior against my chronic migraines for nearly 10 years. The guiding theme of my adult life has been the empowerment of others. Throughout my battle, I had to practice what I preached. My purpose has not changed; the focus of my purpose has. Through my work with AHMA, I hope to empower others with headache disorders and migraine disease to find the answers they seek, the help they need, and the support they deserve.

Monday, February 8, 2016

Jill Goes to DC

Jill Goes to Washington DC

I am in DC this week to advocate for migraine research with our elected officials.  I will speak to Senators Debbie Stabenow (D-MI) and Gary Peters (D-MI), as well as several legislators and their representatives.

Here are my thoughts so far:

Hello Elected Official.

I am a migraineur. My journey with migraine began at age 32. I began having regular migraines at age 45, and started on preventive therapy which helped the frequency of the migraines, but had nasty side effects.  I began having more than 25 days of migraine in 2006.  I gave up my work, my hopes, my dreams, and much of my time with family and friends.  I was never able to reach my full potential.  Even now, with migraines "only" 8 days per month, I also suffer from the side effects of the many drugs I take to prevent them.   None of these drugs were created specifically to treat migraine.  

This is not just my story.  It is the story of 36 million other Americans.  

Migraine is an inherited condition.  I “caught” it from my mom and my paternal grandmother.  There is no cure for migraine, and NO drugs have yet been approved to prevent its attacks.  

Head pain is but just one symptom.  It is more than a headache. It is sensitivity to light and sound; nausea and vomiting; smelling things that aren't there, sensitivity to odors, brain fog, and dizziness. Sometimes, I have a migraine with no head pain, just dizziness, visual disturbances, and cognitive problems. 

I come here today to ask you to consider increasing the funding for the research of migraine, and the development of treatments for this disease.  

Thank you. 

Other Thoughts: 

  •  Imagine how it would feel knowing that you had the potential to be a highly functioning person, but that potential was unrealized because of a disease suffered by you and 36 million other Americans. 
  •  Imagine being a wife/mother/co-worker/friend who continually lets people down because she is in bed, disabled with this disease. 
  •  Now, imagine feeling abandoned by your government because the funding for research on this disease is less than 1% of the NIH budget.  
What is this disease?
  • Migraine is among the 12 most disabling conditions; even more disabling than MS or quadriplegia, costing over $31 BILLION (indirect/indirect cost). 
  • Migraine affects 25% of women in their most productive years, and 19% of veterans.
  • Four percent of migraineurs spend over 15 days per month with migraine symptoms and its related co-morbid conditions, including: heart disease, stroke, fibromyalgia, and depression. 
NO medicines have been approved specifically for the prevention of migraines.

Wednesday, June 10, 2015

Migraine Awareness Month Blogging Challenge, Day 4: Large Migraine and Headache Hopes

  1. An increase in funding for the study of migraine.
  2. Public awareness of this chronic, genetic neurological disorder and its consequences.
  3. Medicines developed specifically for migraine disease (and not some off-label product that may or may not work).
    1. This may include genetically engineered meds that are created for the needs of a specific person or phenotype.  
  4. Compassionate physicians, friends, family, and co-workers.
  5. Pain-free days.
  6. Living a life without having it revolve around avoidance of migraine triggers.
  7. All doctors having a working knowledge of the treatment of migraine.