Kyle Sparks - Cluster Headache
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Kyle has to undergo a surgery that is called neuromodulation, in which a stimulator will be placed at the base of his skull. He will need to travel to a hospital in Ohio, from Wisconsin, to have this surgery, because this is the only location in the United States with the capability to perform this. The surgery will be in November or December 2015. Until that time, Kyle will still be having a number of trips each month to Rochester Mayo Clinic (6 hours traveling round trip) for preoperative testing. As he is unable to fly, he will be traveling by automobile, with frequent stops and hotel stays. Post-surgery, he may need to stay in Ohio for a week or more, and his family members will need to stay at a nearby hotel. Additionally, Kyle will have to return to Ohio for follow-up care after his surgery.
Cluster Headache (CH) is a very rare neurological condition that affects approximately 0.1% of the population. Little research has been done for this condition. There is no cure for CH, no universal treatment for the pain; treatment is a trial-and-error approach. Additionally, 10% to 15% of cluster headache sufferers are diagnosed as having a chronic case. That is, there is no remission period (pain-free cycle) until the next headache begins. Chronic sufferers have multiple attacks for years, with little to no pain-free periods. Unlike typical headaches or migraines, the pain from CH is extraordinary; women report that the pain is worse than that experienced during natural childbirth. Neurologists describe CH as “the most severe pain experienced by mankind.” Attacks, while not life-threatening themselves, are so excruciating that some sufferers have taken their lives, hence the alternative name “suicide headaches.” Tragically, the suicide rate for those suffering from CH is 55%.
At the onset of attack, the pain will affect one or both eyes and one side of the head. The eye will become red and swollen, one side of the face will droop, and the sinuses will begin to drain. These attacks bring excruciating and debilitating pain, which can last anywhere from 20 minutes to several hours, during which time sufferers will rock back and forth, jam the palm of their hand or other objects into the eye socket, hold/bang their head against objects, cry, or scream. After an attack, the sufferer is left exhausted, with residual side effects including the inability to talk/walk or think clearly, as well as blindness in one or both eyes, muscle pain, and vertigo.
Previously a full-time welder who enjoyed fishing, riding his Harley, spending time with his nieces, and family and friends, Kyle is no longer is able to work or participate in activities previously enjoyed. Triggers to his CH include sunlight, car rides, perfume/cologne, and exhaust fumes. The summer of 2014 was terrifying with increase in attacks. Trips via ambulance to the Emergency Room (three different times) and the use of morphine and other medications brought no relief to Kyle’s pain. Finally, after having consulted with numerous doctors, having had several hospital admissions, and his family having done their own extensive research, Kyle was officially diagnosed in August 2014, by a physician at the Eau Claire Mayo Clinic Health System, as suffering from chronic Cluster Headaches. He continues to be seen at the Rochester Mayo Clinic once or twice a month for additional testing, medication changes, documenting results and any changes, and discussing different treatment plans. Additionally, Kyle has given his written consent allowing his physicians to share his information and results to those who research cluster headaches. To date, he has had no relief from his pain and has tried nerve blocks and medications to include lithium, lidocaine, and morphine.
Facebook Page:
https://www.facebook.com/pages/Kyle-Sparks-Cluster-Headache-Awareness/384140045118962?ref=bookmarks
Event Page:
https://www.facebook.com/events/636671289766072/
Cluster Headache (CH) is a very rare neurological condition that affects approximately 0.1% of the population. Little research has been done for this condition. There is no cure for CH, no universal treatment for the pain; treatment is a trial-and-error approach. Additionally, 10% to 15% of cluster headache sufferers are diagnosed as having a chronic case. That is, there is no remission period (pain-free cycle) until the next headache begins. Chronic sufferers have multiple attacks for years, with little to no pain-free periods. Unlike typical headaches or migraines, the pain from CH is extraordinary; women report that the pain is worse than that experienced during natural childbirth. Neurologists describe CH as “the most severe pain experienced by mankind.” Attacks, while not life-threatening themselves, are so excruciating that some sufferers have taken their lives, hence the alternative name “suicide headaches.” Tragically, the suicide rate for those suffering from CH is 55%.
At the onset of attack, the pain will affect one or both eyes and one side of the head. The eye will become red and swollen, one side of the face will droop, and the sinuses will begin to drain. These attacks bring excruciating and debilitating pain, which can last anywhere from 20 minutes to several hours, during which time sufferers will rock back and forth, jam the palm of their hand or other objects into the eye socket, hold/bang their head against objects, cry, or scream. After an attack, the sufferer is left exhausted, with residual side effects including the inability to talk/walk or think clearly, as well as blindness in one or both eyes, muscle pain, and vertigo.
Previously a full-time welder who enjoyed fishing, riding his Harley, spending time with his nieces, and family and friends, Kyle is no longer is able to work or participate in activities previously enjoyed. Triggers to his CH include sunlight, car rides, perfume/cologne, and exhaust fumes. The summer of 2014 was terrifying with increase in attacks. Trips via ambulance to the Emergency Room (three different times) and the use of morphine and other medications brought no relief to Kyle’s pain. Finally, after having consulted with numerous doctors, having had several hospital admissions, and his family having done their own extensive research, Kyle was officially diagnosed in August 2014, by a physician at the Eau Claire Mayo Clinic Health System, as suffering from chronic Cluster Headaches. He continues to be seen at the Rochester Mayo Clinic once or twice a month for additional testing, medication changes, documenting results and any changes, and discussing different treatment plans. Additionally, Kyle has given his written consent allowing his physicians to share his information and results to those who research cluster headaches. To date, he has had no relief from his pain and has tried nerve blocks and medications to include lithium, lidocaine, and morphine.
Facebook Page:
https://www.facebook.com/pages/Kyle-Sparks-Cluster-Headache-Awareness/384140045118962?ref=bookmarks
Event Page:
https://www.facebook.com/events/636671289766072/
Organizer
Kelli Cornelius
Organizer
Nekoosa, WI
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