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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.