Rosa Sundquist has had Migraines since she was a teenager. She endured the years 2008 to 2014 while in pain every single day. Still, she never gave up. With hope and determination, she worked with Migraine specialists to find treatments that would give her some relief.
Q: How long have you had Migraines? What’s your diagnosis, and how long did it take for you to get an accurate diagnosis?
Rosa Sundquist (RS): I’ve had Migraines since about the age of 15, perhaps longer. (I’m 55 years old now.) As a child, I had severe digestive issues. In fact, I don’t remember ever not having digestive issues.
I was officially diagnosed with episodic Migraine at the age of 27 and was told to take Motrin or Tylenol. I can’t remember who gave me the diagnosis. I think they were just guessing since my mom and sister also have Migraine disease. (I have family with Migraine on both sides, maternal and paternal.)
In September of 2008, I was diagnosed with chronic Migraine without aura, intractable Migraine, cervicogenic headaches, and occipital neuralgia. In 2009, hemicrania continua was added to the list of diagnoses, and in 2011, cervical dystonia joined the long list.
To add to it all, I also have fibromyalgia, GERD, gastroparesis, and esophageal spasms. The gastroparesis and esophageal spasms make taking oral medications more complicated. The esophageal spasms make it difficult to swallow medications at times, and the gastroparesis sometimes renders them useless because they just sit in my stomach.
Q: Before you had your current doctors and treatments, how many doctors did you see, and what were some of the treatments you tried?
RS: In the 1990s, I was treated at Georgetown University Hospital in Washington, D.C. I spent many, many weeks in and out of Georgetown where I was given DHE, IV fluids, and pain medications. This went on for many years. DHE and anti-nausea medications would break the cycle, although at times, I would spend up to two weeks inpatient, but then I would be OK for a while.
In 2000, I found Dr. Stuart Stark. His office was in the same building where I worked for 25 years, in Tyson’s Corner, Virginia. Once under his care, I was put on preventives, some of which worked extremely well until they stopped working. He put me on Imitrex as an abortive and Phenergan and Zofran for nausea and added different preventives over the years. I was able to go to his office for DHE infusions and avoid hospitalization.
Over the years, I used many preventive medications: blood pressure medications, anti-seizure medications, antidepressants, hormone replacement therapy, atypical antipsychotic medications, benzodiazepines, muscle relaxants, ADD medications, Alzheimer’s medications, and more. I also used supplements, vitamins, physical therapy, acupuncture, acupressure, chiropractic care, massage, and the Cefaly device. I had trigger point injections, greater occipital nerve blocks, Lidocaine infusions, and Ketamine infusions.
Some of the above meds worked well at prevention until they stopped working or I couldn’t handle the side effects.
Q: What are your current treatments, and how have they impacted your health and quality of life?
RS: Currently I’m under the care of Dr. Stark and Dr. Stephanie Nahas at Jefferson Headache Center in Philadelphia. From 2008 until my first Lidocaine infusions at Jefferson, I had no pain-free days, not even one. I started Lidocaine Infusions at Jefferson in October of 2014. For the first time since 2008, I experienced pain-free days and many low-pain days. Low pain for me is two to three on a scale of zero to 10.
I had the infusions inpatient for seven or eight days every three to four months. I don’t know what changed, but by June of 2016, the Lidocaine infusions stopped working. Dr. Nahas advised me that Ketamine infusions were all that was left for me to get relief. I decided to try the Lidocaine infusions one more time to see if my body would react in a positive way once again. I did this in October 2016.
In April of 2017, I was admitted to Jefferson Hospital in Philadelphia for IV Ketamine infusions. The treatment was very difficult for me. I seem to have experienced more side effects to the medications than most, but all the discomfort was well worth it. Within a few days post-treatment, I had my very first pain-free day in over a year. In fact, all together, I had 10 pain free days, was able to abort three attacks with my triptan, and have experienced many low-pain days. A miracle for me. Woohoo! Life is so good!
I was able to go on vacation and have loads of fun. I am currently scheduled for another round of Ketamine infusions early September, and I pray this time will be easier and the success longer.
My current preventives are: Botox, mexiletine, memantine, Vitamin D, simvastatin, and vitamin B12 Injections.
My current abortive medications are: Relpax and sumatriptan Injectable.
My current rescue medications are: keterolac IM, Benadry 50mg IM, Phenergan 50mg IM, Thorazine 25mg, Haldol, and Ketamine Nasal Spray.
Q: How do you hold on to hope and keep your optimistic attitude?
RS: Hope is a very important word in my life. Because of hope I get up every day and go to sleep every night. This life of chronic pain is difficult, but not impossible. I pray every day for myself and others like me to one day be pain-free, and having just had pain free days myself, I know it’s possible. I just have to keep on fighting and trying my best to make each day count. Even in pain, life is good in many ways, and there’s always something to be grateful for.
I couldn’t survive this disease without the amazing support of the love of my life and best friend. My husband Paul is my rock, no job is too hard or too easy. His love and support is endless.
I remain optimistic because I have an amazing support system and medical team who help me move forward and stay focused. I tell myself every day that tomorrow will be a better day. My family is small but each and every one of them is always on board to help me live my life to the fullest. They never make me feel like a burden. To them, I’m a wife, mom, daughter, sister and soon to be a grandma who loves them and just happens to have chronic migraine.
Last but not least, my Migraine sisters and warriors are always just a phone call, text message, or email away. This journey without you would be very difficult. I’m blessed beyond words. Many thanks to you, Teri Robert, for all the love and advice you always have for me.
Rosa continually inspires me. She’s one of the most courageous and determined people I’ve ever known. After six years of constant pain, she was still reading everything she could about Migraine disease and Migraine treatments so she could work as a true treatment partner with her doctors, and she continues to do so.
Once the inpatient IV infusion treatments were giving her some relief, she and I went on a cruise. The photo above was taken at a dolphin preserve we visited on Balmoral Island in the Bahamas. Neither of us managed to be totally Migraine-free during our vacation, but we were prepared, and we thoroughly enjoyed the trip.
Another reason I admire Rosa is that she’s always ready and willing to help others who are struggling with Migraine, both online and offline. She’s a calming and reassuring presence in several Facebook groups, and is quick to share both support and information with those who need it.
See more helpful articles:
Women of the Migraine World: Dr. Elizabeth Loder
Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.