Interview with ABC 7 Los Angeles’ Denise Dador about Migraine and Aimovig

Last Thursday I had the opportunity to sit down for an interview with Denise Dador from ABC 7 Los Angeles right before the kickoff to BlogHer Health 2019. I shared how chronic migraine had impacted my life and why I’m more than happy that Aimovig arrived when it did.

Dr. Amaal Starling and I join ABC 7 Los Angeles’ Denise Dador for a selfie before our #moveovermigraine panel discussion during Thursday’s BlogHer Health.

To watch my interview, just click on the link that I’ve provided below.

*** I am a paid Amgen and Novartis Spokesperson. This content reflects my own personal opinions and was not created or reviewed by Amgen and Novartis.***

http://mms.tveyes.com/PlaybackPortal.aspx?SavedEditID=0909d944-4705-420d-9488-4fdbbe50ad5e

Health Insurance: Managing the Changes that Unexpectedly Happen While Your Child is Seeking Help for Their Medical Condition

Being a parent of a child living with chronic migraine comes with its share of numerous obstacles. Between getting the referrals from the primary care physician to seek a proper diagnosis from a neurologist or headache specialist then figuring out with treatment options are suitable for your kid so they can attend school more often than not; you barely have time to worry about much else.

You should be able to rely on your child’s provider and health insurance to help make each medical related issue run smoothly. For the most part, it will be an effortless feat. That’s when you can’t help but be thankful for having an incredible medical professional taking care of your kid and the right type of coverage that gets your son or daughter feeling more like themselves.

Regrettably, there will be times when you are on the phone for hours on end or standing in front of your child’s provider asking for guidance on how to not lose your sanity when disputing a denial for treatment or tests that could benefit your kid.

In the past five years of seeking treatment for my son’s chronic migraine diagnosis, our two major dilemmas were having his first neurologist relocate to a different state and his second neurologist name not be on the new health insurance company’s list of providers my ex-husband’s company switched over to.

I’ve learned if you are unprepared to deal with these new developments, it’s relatively easy to become overwhelmed with decisions that require a resolution in a very time sensitive manner.

It’s because of those unexpected developments; I want to share how I was able to successfully navigate through switching providers and have a positive experience while doing so.

Transitioning from one provider to another; especially when things are going so well, does not seem ideal to most people. The last thing we wanted to hear is if my son wanted to keep seeing his neurologist, we’d have to travel halfway across the United States to her new office. She’d still be covered under our insurance, but there were the added expenses that just didn’t seem feasible at that time.

A common factor some people are forced to take into consideration is would you be able to afford the extra expense of continuing to do office visits with that provider? You’ve entrusted your child’s health with this medical professional for months, possibly years and seen a vast improvement in your kid’s overall well-being. However, the financial impact has the potential to lead to more expenses than your budget allows.

I ran into this issue 2 years into my son Colton’s initial migraine diagnosis. We learned his neurologist was relocating to another state. The paranoia immediately stepped in leaving me unsure of what to do next. Even with the existence of virtual visits, going for in-office visits twice a year wasn’t going to work within our budget.

Thankfully, my child’s neurologist offered to help us with finding a new provider. Ones she felt were very knowledgeable about Colton’s other migraine diagnosis: abdominal. The nice part about her recommendations is these neurologists were located in the same office she had practiced at.

Soon after choosing a suitable provider to treat my child, a consult followed so that we had a chance to exchange vital information that was relevant to my son’s health progress before his next follow-up appointment. This opportunity gave our family a chance to get familiar with one another and left Colton a bit more at ease especially since a proper introduction given by his current neurologist.

We then spent the next two years working as a team with Colton’s new neurologist. At the beginning of his first recommended treatment regimen, there was a significant amount of improvement with his health. He was
rarely missing full days of school. The best part was that he joined the middle school’s football team and was experiencing a better quality of life as a teenager.

The school year started great. Colton managed to attend all of his freshman
classes and played in each of his JV high school football games. If he did get a migraine attack, it was quickly aborted with non-prescription methods. I continued to remain hopeful, and so did he. That moment was temporary. We found ourselves back to his neurologist, grasping at straws trying to find a better treatment option than the last.

For the next four months, we made no progress. Colton’s health was at a complete standstill. I know the changes in the environment like the barometric pressure and humidity play a huge role in how frequent my teen’s migraine attacks hit him. It was a brutal winter, but there had to be something more we could do to help him.

During this time another unexpected change of events took place with our insurance provider. My ex-husband’s company was bought out, and with all of the modifications, we learned the health insurance we had for the past 15 years, was no more.

I had no clue what was in store for us with the new insurance provider, but I made it my priority to get as much as information I possibly could starting with the list of providers in their network.

When I didn’t see my teen’s current neurologist listed as in the network I temporarily went into panic mode. We already switched neurologist once before. Was it necessary to do it again?

There are a few options available when your provider is no longer in your network. You could continue to be that provider’s patient and pay the full cost for every visit out of your pocket. Another option would be to call your insurer directly to ask if they’d consider adding your kid’s provider to their network. You could even take that a step further by convincing your child’s doctor to join your insurer’s network.

Lastly, there’s always the option of finding a new provider. Again, this option may not be one you are ready to choose for your son or daughter. I will tell you with all of my battles with the insurance company; this one can be a somewhat frustrating and difficult one. If you are adamant about keeping your kid’s provider, it is possible to break through those insurance barriers by submitting an appeal. I will tell you that there is a lot of work to be done on your end. It is not an easy process, but it doesn’t mean it won’t be worth all of your time and effort.

Yes, we had a good relationship with Colton’s neurologist, but we also were struggling to get him to school on a daily basis. With no improvement in months, I knew the longer we waited to seek out another suitable provider, my son’s health would continue to be in limbo.

This time, I contacted our new insurance company and requested a list of neurologist and headache specialist that focused on migraine in teenagers. After researching the list of potential providers, I found one that I felt would be a good fit for my son and called the office to get the new patient registration started.

No matter what age your child may be, I feel it is important to discuss any new changes that are relevant to their healthcare. This kind of openness could make the transition between physicians a little less intimidating for your kid and will give you a chance to address any concerns or questions they may have before their first appointment.

Our first office visit to Colton’s 3rd neurologist could not have gone any more smoothly. Not only did his new provider know all about abdominal and chronic migraine, but he also gave my son assurance that we would find a way for him to experience a better quality of life. As a mom, that is all I could ask for my child. Someone that gives my teen hope he’ll be a full-time student that gets to play high school football just like all his other classmates.

NerdinOut Con: Interview with Ming Chen

 

 

Last weekend I had the opportunity to do media coverage at my 1st NerdinOut Con in Rochester, MN.

Ming Chen, from the hit AMC TV show Comic Book Men, greeted me with a huge hug and took time from his hectic schedule to discuss Funko Pops.

 

Today Parenting Team: Why I Chose Self-Care over My Celebrity Interviews

My latest Parenting Team article is about my choice to put my health first. As much as I hate that I’m missing the opportunity to interview Christy Carlson Romano and Thomas  Ian Nicolas during today’s Wizard World Comic Con Chicago festivities, I know it’s important to practice self-care.

To read my Today Show post, click on the link provided below:

http://community.today.com/parentingteam/post/why-i-chose-self-care-over-my-celebrity-interviews

Aimovig – Week 1

***I’ m a volunteer for the Speak Your Migraine Network that is sponsored by Amgen Inc.  & Novartis Pharmaceuticals Corporation. SYMN is comprised of volunteers who share their experiences managing their migraine disorder in order to inspire others and build awareness. All opinions and experiences are my own.*** 



MY PATIENT PROFILE

Age: 41

Diet - No Special Diet In Place 

Exercise - 2-3 times a week/low impact

Years Living with the Migraine Disease: 31

Classification and Diagnosis of Migraine: 

Migraine with Aura - diagnosed at 10-years-old

Vestibular Migraine and Chronic Migraine - diagnosed at age 35

My Migraine Triggers:

Changes in the Weather - Incoming Storms, Barometric Pressure 
& Humidity

Changes in Hormone Levels - Menstrual Cycle

Food - Onions, Certain Brands of Bacon, Red Wine, & Smoked Cheese

Smell - Strong fragrances (Incense, Cleaning Products, Perfume, Cologne, & Burnt Food)    

Current Migraine Treatment Regimen:

SPG Blocks Injections - Once every 3rd week

Melatonin - Daily vitamin

One or More of the Following are Selected Based on Symptoms:

Benadryl

Naproxen

Zomig

Baclofen

Zofran

Toradol

Boost Oxygen

Cryohelmet or Cryoscarf 

Caffeine

Other Medical Conditions I’m Currently Being Treated For:

Rheumatoid Arthritis

Fibromyalgia

Cluster Headaches

Osteoarthritis









Date of First Aimovig Injection

August 9, 2018

Day 1- I woke up at 3 A.M. to a migraine attack that had me immediately reaching for my Zomig, Benadryl, and Zofran. Knowing my Aimovig shipment was set to arrive by noon, I wanted to make sure I received my first dose that day.

I decided to wait until the afternoon to administer the first injection. I wasn’t worried about giving myself the shot, I was just a little concerned I wouldn’t do it right. I looked over the instructions a million times, okay I really didn’t, but it was at least 20 times.

By the way, I absolutely hate needles! I do have prior experience with giving myself injections. I once carried Imitrex injections with me at all times from the time I was 16 until my mid-twenties. As much as I dreaded having to inject myself during the onset of a migraine attack, I knew that I would feel better within minutes of the medication going through my system.

I currently do weekly injections to manage my rheumatoid arthritis and fibromyalgia. The medication is in a vial and is not premeasured which means I have to measure each dosage. Lucky for me, Aimovig comes prefilled and is in an autoinjector.

I’ll be honest, I thought I screwed up and didn’t do the injection right. I clicked the button on top, but the yellow line didn’t move. I attempted it again until I finally saw the yellow line of the side of the injector pin slowly drop. I waited 30 seconds before removing the injection and noticed quite a bit of blood. More than I had anticipated.

I bled for a good 15 minutes. It wasn’t bad, it just took much longer to stop than any other injection I’ve received in the past. The only issue I had was experiencing soreness in my left thigh for 2 hours post-injection. It basically felt like someone punched me in my leg.

Day 2- I woke up feeling great, but that afternoon my head started to give me grief. Around 5 P.M a cluster of dark clouds moved through and shortly after the rain began. The massive left-sided throbbing and pressure spanning across my entire forehead caused me to sit in the darkest room in the house for the rest of the night. My pain level was between a 5-6. My whole face was numb and my stomach was upset. I used my Cryohelmet, Boost Oxygen, Benadryl, Naproxen and an energy drink to ease the pain to a bearable 2-3. This migraine attack stuck around for 6 hours.

Day 3- I was not expecting to wake up with some female issues that landed me in the ER. With everything going on with my body, there were no unexpected migraine attacks that day. I was not at all concerned that the Aimovig injection played any role in what happened to me that day. The on-call doctor and nurse also agreed with me.

Day 4- After all the excitement from Saturday was behind me, I had a rather relaxing Sunday. I did take things easy as requested by the ER doctor. I’m happy to report no migraine-related issues on this day.

Day 5- The morning started out fine. I got a lot accomplished until the humidity spiked and was at 90%.  My head made it known it was not happy which caused me to take a variety of over-the-counter medications to get comfortable enough to finish my daily activities. This particular migraine attack lingered around for almost 8 hours.  

Day 6- I had a fairly decent day. No migraine-related issues, but I did have a sensitivity to light all day. I sported my sunglasses most of the day which is nothing new for me. I’m certain it was due to my fibromyalgia acting up and not at all migraine related.

Day 7- My head hated me today. I woke up to excruciating throbbing all over the top of my scalp that only got worse as the minutes passed. I sipped fluids through a straw all day to keep hydrated and wore my Cryohelmet for 6 hours straight. I knew my stomach would only tolerate benadryl and naproxen which I took as directed by my neurologist several times a day. I spent all afternoon stuck in my bed. I was in too much pain to move around. The humidity was 100% which explains why my migraine attack lingered for so long. This migraine attack lasted around 14 hours.

What are my thoughts on Aimovig during week 1?

It’s too early for me to tell. Weather is ALWAYS a factor when it comes to having migraine attacks. No matter what I tried in the past for treatments, my head does it own thing PERIOD! Now I will say this, since starting SPG Blocks in March of 2017 my migraine attacks are not as severe. I only had one ER visit during that time frame for a migraine attack that was a 10+ and caused me to be severely dehydrated. Considering I was making so many frequent ER visits that the staff knew immediately why I was there before I even mentioned what was wrong with me; that’s one hell of an improvement.

My hope is Aimovig will work in accordance with my SPG Blocks to help me to where I am able to have less migraine days and live a better quality of life.

Wizard World Comic Con Chicago

I’m thrilled to announce that I received a media pass to cover Wizard World Comic Con in Chicago on Thursday, August 23rd through Sunday the 26th.

I can’t even begin to explain how pumped I am about being in the same place as my Smallville Superman, Tom Welling.  I’ll gladly be his Lois Lane anyday!

I’m going to make sure I get in line at least an hour in advance for the X-Files’ panel. I loved that show and can’t wait to finally see David Duchovny and Gillian Anderson (Mulder and Scully) in person.

My kids are excited, but I’m sure it’s nowhere as much as I am.

If you are in the Chicago area, make it a point to check out the amazing celebrity line-up Wizard World Comic Con has to offer.

https://www.tixr.com/groups/wizardworld/events/wizard-world-chicago-8610

 

 

Minnesota Fan Fusion 2018

I’m excited to announce that I’ll be covering Minnesota Fan Fusion in Minnesota on August 4th and 5th at the St. Paul Rivercentre.

Passes are still available on their website.

https://memberships.square-egg.com/e/minnesota_fan_fusion_2018?utm_source=MN+Fan+Fusion+Newsletter+Subscribers&utm_campaign=a8bc5e0997-EMAIL_CAMPAIGN_2018_03_23_COPY_01&utm_medium=email&utm_term=0_361e161219-a8bc5e0997-49502585

Adventures of a Spoonie Mom is Now a Proud Partner of the American Migraine Foundation!

We’ve joined the American Migraine Foundation to fight debilitating   head pain together

As part of our ongoing commitment to providing meaningful information, resources and support for those living with migraine, Adventures of a Spoonie Mom is thrilled to announce our new partnership with the American Migraine Foundation.

The American Migraine Foundation is the official resource for millions of Americans living with migraine seeking reliable information about diagnosis, treatment and advancements in research. Launched in 2010 as a patient support and advocacy effort of the American Headache Society, AMF’s mission is to mobilize a community for people living with migraine and their support networks, and to drive impactful research into the third most common and sixth most disabling disease around the globe.

“Adventures of a Spoonie Mom is a cornerstone organization in the migraine world. It is truly an honor to work alongside them as we #MoveAgainstMigraine,” says American Migraine Foundation Executive Director Meghan Buzby. “We look forward to continuing to make an impact together.”

Like Adventures of a Spoonie Mom, the American Migraine Foundation is dedicated to helping people with migraine live meaningful and pain-free lives. We’re so excited to join forces with AMF to provide support, advocacy and treatment innovations to people living with this disabling disease.

The American Migraine Foundation supports people living with migraine by providing free, comprehensive information sourced directly from headache specialists, by maintaining a searchable database and map to improve access to headache specialists, by investing in research efforts towards new, innovative treatments, and by creating support networks and communities where people with migraine can support and learn from each other.

We couldn’t be more excited about this collaboration. Be on the lookout for additional resources and enhanced communication from our team in the very near future.

Together, we are as relentless as migraine

Walker Stalker Con and Heroes & Villains Fan Fest 2018: Chicago, Illinois

Recently, my teens and I attended our 1st Walker Stalker Con and Heroes & Villains Fan Fest in Chicago. In my latest article for Medium, I share my experience from that Saturday’s festivities. To read about which celebrities I had a chance to see up close and personal, click on the link provided below.

https://medium.com/@JPSummers/walker-stalker-con-and-heroes-villains-fan-fest-chicago-2018-927d95cd7777