I still have migraine 24/7, but I have hope!

I am pleased to introduce myself to all of my fellow migraine sufferers! My name is Susan and I am 66 yrs old and have been experiencing migraines since at least my teen years. At first it was a couple times per year, then it gradually became a couple times a month, then a couple times per week, and so on until they became chronic daily migraines about 5 years ago. I have some level of headache 24/7. It is just a matter of whether it is a level 4 or a level 9. The pain levels vary in intensity throughout the day. I also suffer from fibromyalgia and chronic fatigue.

I believe my migraines have resulted from multiple mild concussions throughout my early childhood, teens years and as an adult. I would say I have had ten, maybe more, mild concussions throughout my life. I believe over time the cumulative effects of all the mild concussions have damaged my nervous system. Hence, the neurological conditions of chronic migraines and fibromyalgia.

Migraines have always had an impact on my life, but since they have become daily I feel cut off from those around me living normal lives. I am rarely able to participate in social activities or events, I have had to reduce my work hours to two days or less per week (even with reducing my hours the let-down headaches I experience set me back two to three days), and my depression over losing my active lifestyle has brought me to the brink of wanting to end it all. If not for the unwavering support of my husband I probably would have acted upon those feelings at some point. The feelings of being misunderstood and of being a hypochondriac have left me unwilling to share how I am feeling with others. No one, other than someone who experiences migraines or fibromyalgia, understands what I am going through.

At first, I thought my migraines were sinus headaches because they mostly encompassed the front of my forehead and frontal lobe then intensified to encompass my entire head. I started my quest for help about twelve years ago from an ENT doctor. He was the first to recognize my pain as migraines and he prescribed a triptan. This helped lower the level of my migraines, but not eliminate them. As with most all migraine sufferers, I have a cupboard full of tried and failed prescriptions from over the years.
Most of my migraines are not the blinding, intense one-sided migraines many sufferers experience. They encompass my entire head, and as with the varying levels, the focal intensity moves to different areas of my head constantly throughout the day. Needless to say, this has been very challenging for my care team to treat.

After trying several doctors and neurologists I lucked out when a startup headache center open locally. My neurologist referred me to the center about a year ago. The Hartford Hospital Headache Center in Hartford CT has been a godsend. I began treatment with the Director of the Center, Dr. Brian Grosberg just about a year ago. If you Google him you can learn more about his background and his treatment center. His vision is to have a world class headache center (yes, he does have people fly in to see him from other countries and from around the US) which will specialize in treating all types of headaches. He is also planning on initiating a web-based treatment system.

His treatment plan for me has been quarterly Botox injections, bi-weekly nerve block injections, physical therapy for my neck and occipital region, and by-weekly psychological sessions with Dr. Brooke Pelligrino; who has been interviewed in a recent Migraine.com article. I use Migranol and Floricet for pain management. The medication I take depends on which type of headache experience. After a year of treatment I have been able to cut back on my usage of rescue medications from two times per week to about four times per month. Dr. Grosberg’s practice is an academic based practice, meaning that he teaches other physicians, PA’s and APRN’s to treat his patients. He also attends conferences in other countries and teaches worldwide physicians on his methods. He now has several pain management associates, hands-on instructed by him, that are part of the team. I am sure at some point he will be too busy to see me himself, but I have confidence in his team. It is such a wonderful feeling to have a care team who can relate to what I am going through. Most of the staff are also headache sufferers. It has not been an easy road, as all of you fellow sufferers know, and I have a long way to go yet, but I now have hope.

Dr. Grosberg has told me that my treatment was not going to be a sprint; it is going to be a marathon. After a year of treatment I still have 24/7 migraines, but the levels have dropped to about two thirds of what they were a year ago. Unfortunately, he has told me I will never be headache free. He goal is to have my pain reduced by 50% so that I can get some of my normal life back. Slowly I have been able to do more of my normal activities; although I still have trouble with social activities and events. Over the years I have been able to identify all of my triggers. Some I can avoid or control, but others such as weather changes, certain noises, certain smells, food cravings (especially chocolate), and fluorescent lights I have no or little control over. As with some other sufferers chocolate, caffeine and heat help ease some of the symptoms.

I still have days when I am so emotionally low that I cannot get out of bed, but they happen once or twice a month now. Overall my outlook has improved. I try not to think of how active I used to be and try to focus on the good days when life is a bit more normal. I fully empathize with all fellow sufferers and hope that you are fortunate enough to find treatment that will also give you hope.