Today’s Prompt: Who is part of your Migraine/Headache Disorders care team? What essential roles still need to be filled?
For most of my life, I have been a part of the 96’% of patients who don’t see a headache specialist. In the past 2 years I have made a serious attempt to find a real specialist. The problem is that there are no UCNS-certified headache specialists close to me. I’d like to exhaust all of my options before I make the choice to travel. That means that I have to do all the leg work to determine if the doctor really knows enough about headache disorders to meet my needs. That means I’ve had to be willing to hire and fire several doctors in my search for one that actually knows more than I do about treating Migraine and Cluster Headache.
Neurologist – I recently fired my neurologist when he dropped the ball on my care in the middle of an acute cluster cycle. I now have a new (old) one who actually knows at least as much as I do about headache disorders. I’ve resigned myself to the fact that I will probably never find one who knows more than I do. That’s not to brag on me or insult neurologists…it’s just a fact. I do so much research and have so many contacts in the headache disorders community, it would be difficult to find a doctor in the Midwest who is actually doing cutting-edge research that I haven’t heard of. So welcome back, Dr. Jay Zwibelman. The first one to correctly diagnose my Cluster Headaches is back on the case!
Pain Management – Thanks to the onset of back problems which exacerbate Cluster and Migraines attacks, I really do need a good pain management doctor. Luckily for me, I have one that is supportive of my choice to avoid narcotics and opiods except in the most extreme and acute situations. I know there are those who need them and I wouldn’t begrudge them that relief for a second. However, I do understand that these medicines change the way our bodies process pain. I’d like to stay away from them as long as possible. For now, physical therapy, trigger point injections, a TENS unit, and daily exercise are keeping me functional — although not pain-free.
Primary Care – He’s not a headache specialist, but he’s got a heart of GOLD. Dr. Ronald Graham has been with me through it all and never once gave up on me. When we first met 16 years ago, he helped me find an effective abortive. He never once questioned my need for Oxygen and got me in to a qualified headache specialist for an accurate diagnosis when the Cluster Headaches hit. We trust each other — that’s worth more than all the headache knowledge in the world. It was his compassion and quick acting that got me into the hospital last week to break a nasty cluster cycle. He’s a keeper!
Naturopath – I can’t say enough good things about Dr. Farhang Khosh at Natural Medical Care. Like my PCP, he has a heart of GOLD with the true compassion of a healer. He’s pulled me out of bad Cluster cycles with acupuncture and cupping when all the medicines failed. He also found and treated my hypothyroidism and anemia when conventional tests failed to detect them. His quick thinking and good care helped me work for an extra year before going on disability. When we met so many years ago, he promised to never give up on me. He has kept that promise. We just keep on trying. One day soon we will find the answer!
Chiropractor – Although not as central as he once was, I still believe in chiropractic care for good health. I’m not thrilled with my current provider after he gave me that cock-and-bull line about “vascular headaches” and told me I “probably needed surgery” on my back. Still, he was the first to believe me when I pointed to my eye socket and said, “It hurts right here” and discovered that using an activator on my face and skull during a cluster attack could bring relief. Maybe someday he’ll redeem himself again. After all, he helped my daughter recover from a nasty fall from a horse and helped my son heal from a skull fracture. He’s a good guy — just young and inexperienced.
Cook – I’ve never been a great cook and headache disorders have really put a damper on my practice time. Thankfully, I have a wonderful husband and son who can cook. Otherwise we might all starve or live on boxed dinners.
House cleaning – I like to clean. I really like to clean. But headache disorders just don’t allow me to clean like I want to. My husband and son (and my daughter when she lived at home) are great about taking care of their own laundry, washing dishes, vacuuming, dusting, mopping, and caring for our pets. Life would be a lot messier without them.
Home-health “nurse” – My husband and son (and my daughter before she moved out) are great about running for ice packs, heating wraps, medicines, drinks, food, blankets, and more. Recently my son and husband both learned how to give me Toradol injections to keep me out of the ER. Now if they could only give me IV magnesium infusions!
Pain buddies – There are too many to count! My life is so much richer for the members of Chronic Migraine Awareness, American Headache & Migraine Association, and The Cluster Headache Support Group. When I am stuck at home, alone, and in pain, they are only a mouse-click away. Even on my worst days, I know there will be someone I can reach out to. They mean more to me than words will ever say.
Guard dog – Okay, he’s more like “Nana” the lovable St. Bernard from Peter Pan. My half Bernese Mountain, half Australian Shepherd ball of fur takes his job of “caring for mom” very seriously. Otto can sense when I’m about to have an attack and herds me to the couch. He will lay at my feet to “guard” me during an attack. Adopted from the local shelter on my birthday 2 years ago, we can’t figure out how such a great dog had to wait so long for a “forever home”. Our only explanation is that God meant for him to be a part of our family. We can’t imagine life without him. Now if I could only have the energy to train him to retrieve ice packs!
My “team” is full. There is nothing more I could want, except a cure. We’re all hoping and praying for that to come quickly. My husband has started saying that I will probably need therapy to deal with life after Cluster Headaches and Migraines. I just laugh and tell him he’s probably right.
Pain-free blessings from a Clusterhead,