migrainesurvivalblog

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.

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18 responses to “Headache Clinics – Worth the Hype? You Decide

  1. Howard says:

    After reading this story, I felt better that I’m not alone. I went to Diamond and currently going to Michigan. I’m at a lost on what to do. Get live like this. Howard

    • Howard, I’m sorry to hear you are in the same boat, truly. I’ve been meaning to post about a truly positive experience at the Cleveland Clinic this summer in their IMATCH program. So different from Diamond and MHNI. In the meantime if you’d like feel free to email me with questions about this or check out their web site and search IMATCH. Steph.harville@gmail.com

      • My husband has chronic headaches these past 22years and he has tried so many places. How is Cleveland Clinic?

      • It is very different from other clinics I’ve been to in that they are medication minimalists and focus on patient treatment as a whole; physical, mental, and medical. It’s a 3 week program with only 3 new patients added a week so there is focus and attention on each patient, you are not just a number. You are not admitted to the hospital, you stay in a hotel where they have negotiated rates, so it is a more realistic experience for how things will be day to day while in the program and upon discharge. You interact with patients from weeks ahead of you so there is a chance to talk with others in the same boat if desired. On the Cleveland Clinic site search for IMATCH. That’s the name of the program. They have a screening process, you can get more information there and I’m happy to help answer and additional questions you may have. Best of luck, it’s a struggle, I get it!!

      • Kim says:

        I spent 3 weeks at the Cleveland Clinc IMATCH program and was horrified at the condescending treatment provided by both doctors and nurses. The nurses were clearly afraid of the head doctor and followed his lead in demeaning patients in group meetings where there were other patients present. I left a week early to their apparent surprise, because I was disgusted at their outright cruelty to other patients, routinely bringing patients to tears. Most patients in my group came in on pain meds, which can lead to eradic behavior. Nurses routinely rolled their eyes at this behavior and scolded the patients publically. The Pros were getting off all pain meds. Also my psychologist (all positive expieriences with the psychologists) helped me accept that I cannot cure my daily migraines, and I must build the best life in my circumstances. Other cons, the doctors employed a one-size-fits-all approach, putting most everyone on neurontin or lyrica and upping the dose no matter that I was explicit that this did not work for me in the past. Next week I will be inpatient at MHNI in Ann Arbor. After two years as an outpatient there, I can say the attitude is 180 degrees different from IMATCH. In fact, my last two doctors left Cleveland migraine program to come to MHNI because they both expressed the desire to learn from the best clinic for migraines.

      • Thank you for your comment and feedback. I appreciate all view points and while my experience was not altogether positive at MHNI in the long term from a sustainability stand point, I have nothing but good things to say about the treatment I received while I was there. I wish you the best of luck. Migraine is a personal battle in many ways and not a one size fits all as we all are experiencing. I’m just sorry that you are in this battle of having to now go to a second treatment clinic. Hugs…

      • Kim says:

        Soooo sorry! I did NOT go to IMATCH! I was in the Chronic Pain Rehab Program run by Dr.Edward Covington! I had just been listening to IMATCH comments and misspoke! The Chronic Pain Rehab Program often places those patients who come in taking narcotics into this program rather than migraine-specific IMATCH even if their pain is migraine, as mine was. I was not classified as an addict, so I did not have to take the addiction classes. However, addiction treatment was a large part of the focus for most. It is the Pain Rehab Program with Dr. Covington where I experienced this unconscionable, condescending and destructive behavior by entire physician staff and nursing staff – not the psychologists. So sorry for my mistake. If you have migraine, have your GP help you get off narcotics and seek out MHNI or IMATCH. Even my two doctors at MHNI who came from Cleveland Clinic told me I would have been much better off in IMATCH. After 15 years with daily headache, I have researched them all. Hope someone finds this helpful.

      • Thank you again for sharing! All feedback is welcome!! And I would love for you to post your experience at MHNI if you’d like…

  2. Kim says:

    If anyone is interested, I will post my feelings about my stay at the hospital at MHNI when I return.

  3. Kim says:

    Very sweet. Thank you. I’m Kim. My hospital stay had been moved back to this Sunday, no beds. I’m optimistic, but I is not to expect anything, right? Btw, I’m in Indiana.

  4. Cindy Walker says:

    I’ve had chronic migraines for 30 years, a daily trial, had ten neurologists, forced to take narcotics when our insurance refused to pay for my needed daily use of imetrex. My Dr has lost interest on my case and has sent me to another neurologist who is doing botox treatment on me. So far, the initial shots haven’t helped. But my husband has heard that the Mayo Clinic in Arizona is working on a trial drug for Calcitonin Gene Related Peptides. Have you heard about these? I’m hoping to be placed on the study trials before they’re approved by the FDA. I so despretly want to find out what a normal life feels like.

    • I haven’t heard of the trial. I know how you feel and can sympathize with your pain and desperation. You deserve to find something that will work for you.

      I haven’t yet updated my blog, but was went through the IMATCH program at the Cleveland Clinic for 3 weeks in 2015. I think based on your years of suffering, desire for looking at trials, etc that you should research this. I’m happy to provide more info as well. Steph.harville@gmail.com

      • Marisa says:

        So much good info here. I have had a daily frontal chronic headache for over a year. It is not a migraine, it is quit different. I have been seen under the care of Indy Poly Clinic in Indiana. Where i have tried infusions, therapy, OT, nerve blocks, injections, etc. They have been great, but nothing has worked. Most meds and infusions make me worse. I am so sensitive to meds. I am off all my daily medications. So i honestly feel like i have detoxed on my own. I was approved for the IMATCH program. I do not see if it would be beneficial for me. It sounds like it is more for people who need to get off daily meds and need intervention. Leaving work and home for 3 weeks on top of paying for board for 3 weeks is a huge step. Anyone have any thoughts or advice? I have a consult with a plastic surgeon for possible trigeminal neuralgia (type 2) surgery. They are no sure i have it as some blocks have worked and other have not. I also just started brain training with neurofeedback and soundwave therapy. So i have a fee things to try before I did go to IMATCH. Just not sure if its right for me. Any comments would be greatly appreciated.

      • To get approved for IMATCH did you actually speak to a program coordinator or just with a general clinic scheduler? My suggestion would be to call back with your list of questions/concerns asking to speak with someone that works in IMATCH. I believe they also have patient advocates you can get scheduled to speak with as well. You could ask them to match you up with someone that has a similar experience as yours.

        Another thought would be to schedule a headache specialist consult without plans of admitting to the IMATCH program. If you decide to do this, ask to be scheduled with a Neurologist that works with IMATCH patients as only a couple do.

        I hope this was helpful let me know if there are any other questions!

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