Headache Clinics – Worth the Hype? You Decide

The Diamond Headache Clinic

From approximately 2000-2003, I was a patient at the “Diamond Headache Clinic” in Chicago. I learned about Diamond after reading an article in Time Magazine, featuring the clinic. They were touted as the premiere migraine treatment clinic in the midwest, they were leading the way in research, etc., etc. This was it! I had found my “cure”; this place was going to work miracles! I requested a referral from my Neurologist of the day, and she refused (thanks for that), so my primary care physician came to the rescue, and I divorced yet another Neurologist in the process.

Insurance approved my visit, and I was off to Chicago for a consult. I was assigned to a Neurologist at random. She explained that I was in a rebound migraine cycle due to overuse of Triptan-based abortive medications (at that time it was Maxalt which was the new thing for migraines because it would dissolve under the tongue and would reduce the risk of throwing up due to nausea at the time of migraine attacks), and from narcotics. She also felt I was on the wrong preventive meds, and recommended that I enter their inpatient facility. I was admitted to the hospital that same day, and started treatment which consisted of IV-infusion of DHE every 8 hours and nausea meds to counter the horrific reaction I had to the DHE, which was intended to detox my body and break the rebound cycle. Then I started on the new “miracle” preventative meds that she said would change my life dramatically. They also had one daily support group session and taught me biofeedback (which I’ve never mastered). I bought into their philosophy; I knew I was in rebound (which is overuse of medication causing you to have recurring migraines), but it was a vicious cycle. If I didn’t take meds, I was doubled over in pain unable to function, and the alternative was to keep taking the meds, even though I knew I shouldn’t, and “function”.

I was in the hospital for 9-days in an isolated private room, and I was so miserable. I rarely left my room and was so sick from the treatment and groggy from the nausea meds, that I basically slept the majority of the time. I hate DHE, but I believed it would work. I thought it was a necessary evil. After several days of that hell, they started me on the new preventative and abortive meds. I remember when I was discharged that I didn’t feel that much different, but I was told it would take some time for my body to adjust; fair enough. I returned to Chicago to their outpatient clinic every 2-3 months for a checkup over the next couple of years, and was admitted to the hospital for a second round of DHE torture about half way into my treatment when I was having little to no success with the new meds. I was able to call the clinic if I was in distress and speak to a nurse (for a minimal charge), which I needed because at that time I didn’t have a local Neurologist. Thankfully at that time my best friend was living in the city and I could walk from her condo to the clinic. She also came to visit me when I was an inpatient at the hospital when I was feeling up to it, so I never felt completely alone. So, I would visit my friend every couple of months, and have a checkup with the Neurologist who continued to throw more medications at me with each visit, or adjust the dosage if I called to complain about continued pain issues. I was a zombie, not to mention, the meds weren’t working, and that was all they offered to me for treatment. This was no miracle, it was costing a lot to fly back and forth and having a Neurologist in another city was beyond challenging. So I eventually divorced Diamond.

The Michigan Headache and Neurological Institute (MHNI)

Many years later, in August 2010, my current Neurologist recommended that I look into the Michigan Headache and Neurological Institute (MHNI) in Ann Arbor, MI. They had tried many things with me up to that point that were unsuccessful, and felt that a fresh perspective was needed. I was skeptical after my experience with Diamond, but in researching the clinic, felt that it was worth a shot. At that point, I didn’t have anything else to hold on to that would provide me any hope for relief, so I felt I had nothing to lose.

MHNI’s philosophy is quite different from Diamond. They admit only 28 patients at a time to ensure they can provide personalized care. There is a 4-1 nurse to patient ratio, which essentially means that when you press the call button, someone is instantly there to respond. It’s a comforting feeling. They utilize a team approach. Each morning you go to the board room, and meet with 10+ physicians ranging from Neurologists, pain management, psychologists and nurses. The sessions are all lead by the clinic founder, Dr. Saber. They review your progress over the past 24-hours, and then discuss as a team any changes they will make in your care.

Your care plan primarily consists of finding a combination of medications that should help improve your pain. They review what you have taken in the past, what you are currently taking, and then suggest new medications for you to try. Their philosophy is that if you have tried a med in the past and have not had success with it, that it does not necessarily mean that it will not work for you again.  Medications metabolize and work differently when combined with other medications, so from their perspective, it’s important to try a wide variety of meds ranging from 5-10 med families (ex., heart meds, epilepsy meds, antipsychotics, antidepressants, antihistamines, muscle relaxers, etc.) Just about anything you can thnk of that is non-narcotic.

Meds are administered via IV (in my case it was through a PICC line because my veins are so damaged from IV meds over the years), on a scheduled basis, generally every 8 hours. The process is trial and error. If you have little to no response to a med, it is immediately crossed off the list. If you have a positive response, meaning any significant reduction in pain, it remains in your list of approved meds, and you continue to try it during your next scheduled round of medication, noting any differences in the pain outcome. This process continues until they believe they have found the right combination of both preventative and abortive meds for you.

In addition to medication IV treatment, they try nerve blocks, neck injections and group and personal therapy sessions, to treat the whole person. While medication therapy is the primary treatment, they did try other things that I had not been exposed to in the past. The problem is, it was difficult to gauge if the treatments were effective, because of the IV meds that are very sedating.

There are no private rooms in the clinic, so you have a roommate, which has its positive and negatives. You are also required to attend daily group education and support sessions whether you feel up to it or not. And you are required to eat lunch and dinner in the main dining hall, unless you have special permission to eat in your room. The group sessions and shared meals forced you to interact with others in the clinic, share stories, and feel a sense of community with the 28 other patients facing similar issues with pain. If nothing else, what I took away from my experience at MHNI is that I am not alone.

My overall experience with MHNI was frustrating. I was scheduled for a consult visit at their outpatient facility and it was determined that I was a candidate for inpatient treatment at the hospital, which was no surprise. After my consult, I waited 9 days for a bed to become available. There was no way to estimate how long you would wait for a bed, so it was not possible for me to go home due to the distance from KS to MI. I stayed in a hotel by myself while waiting for a room, and was instructed to call the clinic every morning at 11am to learn if a patient had been discharged, and where I was in line on the list to be admitted. Once I was finally admitted, I was in the hospital for 18 days. The average stay is 2 weeks, and I exceeded the time because my response to treatment was minimal. When it was all said and done, I was away from home for a month total. After I was discharged, I had the same feeling that I did in leaving Diamond. I didn’t feel much better, and to go from IV meds to oral meds makes a world of difference. The efficacy is not comparable, and I found that I was once again over medicated.