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.
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.***
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.
Minnesota Fan Fusion 2018 ***Disclaimer: I received a complimentary media pass to cover this event. All opinions are my own and that of my kids***
Last month my two teenage boys and I had the opportunity to attend our first Minnesota Fan Fusion in St. Paul. We first heard about MNFF during Free Comic Book Day at Hot Comics and Collectables in Richfield this past May. The second my teens and I saw the celebrity line-up it was mutually decided we had to go.
What is Minnesota Fan Fusion?
It is a convention & expo that celebrates Fandom of all genres. They focus on local creators and artists to showcase the finest talent in the Twin Cities area and welcome artists from around the country.
In its sophomore year and previously named Minnesota Fan Fest, this comic book-themed convention offered well-known artist with a huge gallery of vendors. The actors in attendance held panels along with autograph and picture sessions.
In preparation for our trip to St. Paul, my teens and I kept close tabs on social media for updates to make sure we were not going to miss our opportunity to check out the panels with our favorite actors. What was great about the days leading up to the event was the Facebook Live feed that gave attendees a behind the scenes preview of what they could expect at this event.
Matt Solberg, who is the CEO and Founder of Square Egg Entertainment, discussed what made him decide to bring a comic book-themed event to Minnesota. In the second Facebook Live installment, we meet Sara Klick, Director of Talent Relations who shares how they chose and book guests for their event. The final FB live behind the scenes installment had the Directors of Operations, Director of Programming and Programming Manager, discuss various topics that covered the what to expect from the security when entering the building, how the wristbands are made to last for the duration of the event, and what content is planned to accommodate all ages.
For anyone wanting to know who would be in attendance on a particular day(s) the best way to obtain that information would be to follow them on Twitter, Instagram or Facebook. Not on those social media sites? Sign up for their newsletter, and you’ll receive emails about the event.
Speaking of the Rivercentre, I must acknowledge how this venue was perfect for this particular sized event. The parking situation was not even an issue. Knowing that construction is going on in the area, I went directly to the interactive map on their website. The best part was that I found a spot that was a few feet away from the entrance and only paid $10!
Once we made our way inside the building, the strategically placed signs for MNFF led us to the area we needed to get our passes. Since we arrived 45 minutes before the beginning of the day’s festivities, my boys and I were 3rd, 4th and 5th in line to enter the premises. I’ve covered events on a Sunday before, and each time there’d be a huge turnout. That’s precisely what happened on this day.
Another great feature MNFF offers is an app where you can get a full schedule of their photo ops, panels, and events. I downloaded their app before arriving in St. Paul on Sunday. It was very user-friendly throughout my visit to the Rivercentre.
While waiting in line my kids and I finalized our plans for the entire day with the use of both the program that the staff provided us when we picked up our wristbands and the app we downloaded beforehand. Minnesota Fan Fusion even had their website serve as a third source for finding the schedule of the three days festivities. Talk about having all of your information basis covered!
Vendors and Exhibitors
The moment my boys and I stepped foot into our first MNFF we were in awe of all the exhibitors. There were two areas designated for these vendors to display their items. It took us a good 3 hours to look through each booth. My boys even went back to a few vendors that carried Legos and Original Funko Pops to make multiple purchases.
There are never any shortages of Cosplayers when you attend a comic booked themed event. It amazes me how so many people dress up for the occasion and even act as if they are the actual character. MNFF also offered several scheduled events where people dressed in their costume attire could engage in.
I had the chance to attend two panels on Sunday. The very first panel of that day was John Rhys-Davies. This man had the audience intrigued from the moment walked across the stage to the very second he had to leave for his autograph sessions. Mr. Rhys-Davies could be a one-person show. His ability to get into character and act out scenes made me wish he had more than an hour to entertain us. My teens enjoyed listening to John talk about his time on the set of The Lord of The Rings and Indiana Jones.
I loved hearing him get into Shakespearean Mode and reciting some of the lines. If you ever had the opportunity to attend a John Rhys-Davies panel, you must do it! I guarantee you will not be disappointed.
The second panel I had the opportunity to attend was that of Firefly’s and The Sarah Conner Chronicles, Summer Glau. In her sweet, soft voice, Summer enjoyed answering questions from the crowd about each show she worked on. One of the questions was more of a personal one, about living with anxiety, that Summer did not hesitate to answer.
I truly admire her courage to speak openly about the struggles she faced as someone living with this disorder. I’ve always loved Summer as an actress but left loving this devoted mother of two even more after learning how her family is everything and refuses to take on a role unless they can join her on the set.
Photo Ops and Autographs
In between panels one of my teens had John Rhys-Davies’ sign his The Lord of the Rings Gimli Funko Pop. The cost of John’s autograph was under $50. The smile across my son’s face after getting his collectible signed was priceless.
For any person wanting an autograph or picture op with one of the guest celebrity, the prices are listed on the MNFF app, program guide and online. You can buy those ahead of time, something I strongly advise because it could cut your wait time in the line down, or you can also purchase those items once you arrive.
My kid also brought along some of his comic books that writer and artist Dan Jurgens was happy to sign for him. There was no charge for Dan’s autograph, but there was an option to leave a donation in any dollar amount which my teen was more than glad to do.
Food and Beverages
The food options accommodated anyone with gluten, vegan, and other dietary requirements. I have one very picky eater that was pleased with his slice of cheese pizza. The other kid had a brat while I indulged in a turkey sandwich. The cost for three drinks, three bags of chips and our food were around $35. Not too bad considering we were full afterward.
Special Accommodations for Medical Purposes
One thing I always have to check on in advance is the setup for people with specific disabilities, and the type of restrictions are in place for bringing in my emergency medical items for the various health issues I live with (chronic migraine, fibromyalgia, and rheumatoid arthritis).
There are times I need to take short breaks and get away from the crowd activities. The bright lights, loud sounds, even the smell of certain odors will cause me to become unexpectedly ill. Even walking around for a few hours will cause my fibromyalgia or rheumatoid arthritis to flare-up. When any of these situations arise, I need an area to rest and in most cases allow my medications a chance to kick in.
A few of my items that could cause some security issues is a Cryohelmet or scarf which has frozen gel-packs that require proper storing in an insulated case. The other is my Boost Oxygen which is a handheld canister containing 95% and 5% air.
The Rivercentre had multiple areas throughout the venus for any patron to sit and get away from the dense traffic areas plus their security did not give me any issues with carrying in anything I needed for medical purposes. Wheelchair accessibility was sufficient for the attendees. There are also plenty of volunteers on hand that are more than happy to accommodate anyone needing assistance.
What are my final thoughts after attending my first time to Minnesota Fan Fusion?
I loved how easy it was to find the panels and events with the help of the complimentary MNFF program guide and app. The celebrity line-up was a perfect blend of well-known actors that were incredibly friendly during their signings, photo ops and panels. There was plenty of places throughout the exhibit hall to sit down, relax, and charge your electronic devices. And most importantly, the volunteers and staff were very knowledgeable and courteous when I stopped to ask various questions about the day’s activities.
My 15-year-old’s favorite part of MNFF was the panels and having another one of his collectibles signed. My 13-year-old loved the selection of vendors and being able to go inside the replica Doctor Who Tardis.
The 4 1/2 hour drive to attend our first Minnesota Fan Fusion was well worth making the trip into the Twin Cities. Our family loved everything about MNFF that we’ve officially added this to our must-attend annual events.
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:
***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: 41Diet - No Special Diet In Place Exercise - 2-3 times a week/low impactYears Living with the Migraine Disease: 31Classification and Diagnosis of Migraine: Migraine with Aura - diagnosed at 10-years-oldVestibular Migraine and Chronic Migraine - diagnosed at age 35My Migraine Triggers:Changes in the Weather - Incoming Storms, Barometric Pressure
& HumidityChanges in Hormone Levels - Menstrual CycleFood - Onions, Certain Brands of Bacon, Red Wine, & Smoked CheeseSmell - Strong fragrances (Incense, Cleaning Products, Perfume, Cologne, & Burnt Food) Current Migraine Treatment Regimen:SPG Blocks Injections - Once every 3rd weekMelatonin - Daily vitaminOne or More of the Following are Selected Based on Symptoms:BenadrylNaproxenZomigBaclofenZofranToradolBoost OxygenCryohelmet or Cryoscarf CaffeineOther Medical Conditions I’m Currently Being Treated For:Rheumatoid ArthritisFibromyalgiaCluster HeadachesOsteoarthritis
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.
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.
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.