A Diamond is A Promise
My Experience as a Patient at the Diamond Headache Clinic
As the landing gear opened, as the stewardess reminded each of us to fasten your seatbelts for landing. My mind was racing, overwhelmed by the thought of seeing a new doctor. I had to remind myself to breathe in and out while I held on to the armrests. I was finally here. After nearly 18 months of waiting, I was landing in Chicago for my appointment with a world renowned expert in migraine treatment.
I had seen many specialists in Texas over the 10 years since I had been diagnosed with migraine disease. One by one, each provider would meet with me, run tests, attempt a new medication regimen, and give up as my health continued to decline. At 18 years old, my doctor sat down with my mother and I to talk about my “reality” as a “disabled person”. We were told that going to college or holding down a job might not be possible for me.
In that moment, as the plane was landing, I was overcome by anxiety as a million questions raced through my mind.
What if this new doctor doesn’t believe me? What if my doctors in Texas missed something dangerous? What if I have a brain tumor? What if they won’t admit me to the hospital? What if they tell me that there is nothing they can do for me? What if this is as good as my life can get?
I closed my eyes, took a deep breath, and exhaled as slowly as I could, attempting to clear my mind by gathering my things and returning them to their spot in my carry on bags. As the plane taxied to the gate, I prepared to disembark and meet my parents outside the terminal.
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I stepped out of the automatic glass doors of the Chicago O’hare Airport to see my parents waving at me from the loading zone. I rushed towards them, embracing them in a big hug. I felt the anxiety ease as we put my bags in the trunk of their car. These are the two people in this world who truly understood the toll of my migraines, and they were there with me to help ensure that this new provider would recognize the extent of my disease progression.
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My appointment was with Dr. Merle Diamond herself due to the complexity of my case and family history. She is a second generation migraine specialist. Her father, Dr. Seymour Diamond, began pursuing better knowledge and treatment of migraine and other headache diseases because he saw the devastating impact of these disorders on patients and their families. He founded the Diamond Headache Clinic to help migraine patients to get the care they needed in a time where this wasn’t available, and he never looked back.
The Diamond Headache Clinic is unlike any doctor’s office I had ever been to in Texas. It is a labyrinth of exam rooms, labs, infusion rooms, and offices. This clinic’s size put the “everything’s bigger in Texas” cliche to shame. The initial appointment process included blood work and urine samples, having updated MRI and CT imaging, meeting with a nurse, meeting with a medical student, and then finally seeing the doctor.
As soon as Dr. Diamond came into the room, I felt at ease. Her smile was so genuine and her soft spoken voice was calming. She was thorough, asking many questions about my history of migraine attacks, previous treatments, and my quality of life. After nearly an hour discussing my history and my goals, she recommended an admission to her unit in Presence St. Joseph’s Hospital on the north shore. She told us about the accommodations available there and encouraged my mom to stay with me for my admission. She helped us to understand that my migraine disease impacts the entire family unit, and the opportunity for family members to be present during hospital stays helps families to maintain the medication and lifestyle changes when the patient returns home.
When we arrived at the hospital, the admission’s staff was accommodating and helpful. They let the 9th floor staff know that I was being admitted and that my mother would be staying with me. Before we were even off the elevator on the 9th floor, the staff was ready for us. We were shown to a beautiful room overlooking the shores of Lake Michigan.
My first stay came near the end of the clinic’s remodeling of their floor of the hospital. The individual patient rooms were newly renovated and beautiful. These rooms felt more like being in a high end spa than in the hospital. The lights in the room were all new LED lights. The lights were installed in a warmer color range than the standard LEDs, with the ability to be dimmed. This allows the room to be softly lit or even minimally lit to accommodate the light sensitivity and delayed pupillary response that is so common in migraine attacks. There was not a fluorescent light in sight. They had been removed during the renovation to avoid the common migraine trigger for patients. The flat screen televisions in each room had a wide range of channels, including cable that I didn’t even have in my little college apartment at the time, which was wonderful for late nights struggling with painsomnia(pain induced insomnia). Additionally, all of the bathrooms had been updated to be accessible and safe for patients struggling with balance issues related to their migraine attacks.
The patient common areas were still under construction, but the view from the newly renovated solarium was incredible. Although it was temporarily functioning as both the hospital led activity room as well as a peaceful retreat where patients could watch the sun rise, the solarium was incredible. The walls are made of windows that look out over Lake Michigan. It was a perfect place for meditation during the healing process. Patients have access to a small kitchen with a refrigerator, coffee machine, hot or cold water, and an ice machine. This allows patients to store a small amount of food or drinks from home. There are always small snacks to help patients have a small snack before medications that cannot be taken on an empty stomach, regardless of the time that the medication has to be administered. There is a washer and dryer available for patients and their family members. This helps patients to be able to pack light for their stay, and/or to be able to stay inpatient for longer periods of time when needed to break the migraine cycle. Finally, once the remodeling was completed, patients had access to a room they call “the point room”. This room is full of tables and chairs, arts and craft supplies, board games, playing cards, and other goodies to help facilitate interactions between patients. Once remodeled, the point room became a place of healing by hosting dog therapy sessions, support groups, dieting classes, medication education, yoga, arts and craft time, and patient lunches and dinners. The friendships made in that room are long-lasting stemming from shared experience with debilitating headache diseases and time inpatient at the unit.
It seemed like I had only just stepped into my room when nurses and technicians began to bustle in and out getting blood draws, IVs started, conducting pregnancy tests, and going over my current medication regimen and going over the new medications that Dr. Diamond had ordered for my stay. Next came a parade of physical therapists, acupuncturists, massage therapists, pharmacists, and psychologists all came and went with information on the therapies I would be receiving during my time there, the classes available to me and my mom, the support groups for patients and caregivers, and the schedule for recreational therapies available to patients in the common areas. It was so much to take in.
The first day is an overwhelming blur. Adjusting to strong doses of medications that are not commonly utilized at the local emergency room for migraine can be exhausting. Between the new medications, biofeedback appointments, and the hourly announcements about the groups or classes going on, it feels like a race. However, what you realize by the end of that first day is that this time in the hospital is a marathon, not a race.
That first night is an additional challenge. Hospitals are always difficult to sleep in. No matter how nice the hospital beds are, they’re never as comfortable as your bed at home. Combine that with the constant beeps of the heart rate monitors, the awkward 2AM dose of new medications, and the regular patient care technician visits for vitals, it does not leave a lot of time for good, restful sleep. In my experience, your body adjusts to the routine of the hospital just in time for your discharge.
The clinic focused on treating me as a whole person, not only treating my headache disease. It was a completely different experience than any other doctor’s office I had ever been to for my migraines. I had biofeedback appointments to train the body to calm/meditate even during high pain times. It also helps to facilitate better circulation.
When the acupuncturist visited me, he went over my family history again, asked questions about both my migraine history, and then assessed other areas of my health history. It was during his assessment of my health history that I first heard the words Ehlers Danlos Syndrome. He conducted the Beighton scale, and talked with my family and I about what all of this meant. He made notes in my chart about the hypermobility, chronic nausea, chronic dehydration, and chronic fainting and blackouts to ensure that Dr. Diamond would be made aware of this possible diagnosis and to get us resources for testing when I returned to Texas. Finally, he treated my pain, nausea, dizziness, and other issues I was experiencing with acupuncture.
The next morning, Dr. Diamond discussed which of my new medications had helped me and which had not, she ordered a tilt table test to have me assessed for positional orthostatic tachycardia syndrome, and talked with me about ordering genetic testing. Every morning began with a meeting with Dr. Diamond and a plan for the day. Some days were good days, and some days were bad days. Beginning each morning with a review helped to shape a treatment plan that was made just for me. When I was overwhelmed by sadness when I failed the first type of IV therapy, I cried during my morning review with Dr. Diamond. I was terrified that I would be sent home in pain or that she would give up on me. Dr. Diamond taught me two important things about medical care during my stay. She taught me that there are wonderful providers who will never give up on helping a patient to get better, and that I deserved to see providers who believed that. She also regularly reminded me that we were a team. It was Dr. Diamond, my family and I versus my migraines. I was a part of the team and had to do my part to contribute to my care. This guidance was life changing. I realized that I deserved to see providers who care about my well-being and were ready to fight for me.
The diet classes taught me about the healing powers of the food that I eat every day. I learned about diets that could help reduce or eliminate food triggered migraines. There were classes on the types of medications available to treat migraine both preventatively and acutely. The pharmacist helped me to understand how to properly and most effectively utilize medications to treat my migraine attacks. Arts and crafts classes provided a therapeutic outlet, as well as fun ways to give back to the hospital through opportunities to knit caps for newborns or give artwork to others. Attending support groups with other patients who have chronic intractable migraine showed me that I was not alone. I found a community of people who truly understood me and what I was going through. These patients also shared tips and tricks about navigating life with debilitating migraine disease. I made friendships that have lasted since that first hospitalization 5 years ago.
It was the middle of my 7th day inpatient when I experienced my first pain free hours in more than two years. Over the next three days, those pain free times got longer and longer until I was able to be discharged after 10 days. It was a huge relief to experience a pain free day.
After my discharge, my mom and I joined our family on summer vacation in Michigan. I was able to stay pain free for over a week. The Diamond Headache Clinic gave me hope, they gave me my life back, and I will be eternally grateful for the treatment I received there, the beautiful facility, and the incredible staff that made my stay possible and productive.
Dr. Seymour Diamond passed in October 2019. You can make a donation to support the great work of Dr. Seymour Diamond and his daughter Dr. Merle Diamond by visiting the American Headache Society’s website or the National Headache Foundation.
https://headaches.org/2020/10/26/a-tribute-to-the-original-headache-hero-dr-seymour-diamond/