Spiral Research Patient Portal

This site is intended for use primarily by the headache patient community to participate directly in furthering our cause, leveraging best of breed tools and information resources. These tools are well integrated into the healthcare, scientific research, and pharmaceutical industry to leverage what WE know and translate that information directly from anecdotal information to facts and figures that researchers can use to more quickly understand our condition. This, in turn, will ultimately translate to better treatment options.

At the same time, the capabilities provided by the PatientsLikeMe app helps you, the patient, keep track of your illness. It is so easy to forget over time what treatments you have used, the side effects, how well it worked, etc. along with your overall pain diary and related illnesses as well. All of this may be used to produce a very vivid picture of your health for your doctor to see in the Doctor's Visit Report which you can easily print out prior to your visit.

It also provides direct access to ongoing research studies, surveys, and real aggregated patient information regarding treatment options, both good and bad, co-existing ailments, tools for tracking your own health record, and for improving the dialog with your healthcare provider.

YOUR INFORMATION IS PRIVATE in all cases. We share no personal information and are fully compliant with medical privacy laws, including HIPAA. Please see our Information Policy.

Primary Headache Disorders

Migraine

Many people fail to realize that migraine is a neurological disease, like epilepsy. Every 10 seconds, someone in the United States goes to the emergency room with a headache or migraine. Migraine sufferers visit the emergency room because of the severity of the pain or the fear of unremitting pain, drug reactions or side effects from headache medications, severe nausea or vomiting, dehydration, and/or stroke-like neurological symptoms that might accompany the headache.

Migraine ranks in the top 20 of the world's most disabling medical illnesses. Amazingly, over 10% of the population, including children, suffers from migraine. Nearly 1 in 4 U.S. households includes someone with migraine. In addition to the attack-related disability, many sufferers live in fear knowing that at any time an attack could disrupt their ability to work or go to school, care for their families, or enjoy social activities. More than 90% of sufferers are unable to work or function normally during their migraine attacks. While most sufferers experience attacks once or twice a month, about 14 million people experience headaches on a near-daily basis.

About 18% of American women and 6% of men suffer from migraine. This translates to about 36 million people in the United States alone! American employers lose more than $13 billion each year as a result of 113 million lost work days.

Chronic Daily Headache

Chronic daily headache (CDH) is a descriptive term that encompasses several different headache diagnoses. Chronic daily headache affects 4% of the adult population in the United States and around the world.[1–3] The vast majority of CDH patients suffer from either chronic migraine or chronic tension-type headache. Chronic daily headache results in significant pain and suffering, reduction in quality of life, and enormous economic costs to society.

Cluster Headache and related TACs

Cluster Headache is one of the most painful and debilitating conditions known to medical science, yet most people have never even heard of it. It is rare, occurring in about .1-.3% of the population, and as such has very little support for research and development of new medications. That said, there is a tremendous market for an effective preventive medication. In fact, there are no available preventive medications for this disease that strikes down the sufferer multiple times a day.

Cluster headache market opportunityIf you consider that there are approximately 1 million cluster headache sufferers in the US alone, the annual spend on sumatriptan only is in the Billions of dollars. If we can find cross-purpose effective prevention for refractory MIGRAINE, the market opportunity is one of the largest in the world.

Cluster headache is pain that occurs along one side of the head. It's frequently described as pain that occurs around, behind, or above the eye and along the temple in cyclic patterns or clusters. The pain of a cluster headache is very severe. Many patients describe a “drilling” type of sensation. For classification as a true cluster headache, associated autonomic features such as tearing/watering of the eye, redness of the conjunctiva, rhinorrhea or nasal stuffiness, eyelid drooping, sweating on one side of the face, or changes in pupil size (with the pupil on the affected side becoming notably smaller) are usually present. The headache lasts from 15 minutes to a maximum duration of about 3 hours. However, the headache can recur up to eight times daily. Cluster headache was originally described in the 17th century, but it wasn't until the mid- 20th century that it became known by this name.

Who gets cluster headaches?

Males are two to four times more likely to develop cluster headache than females; however, the overall frequency is quite low, with a prevalence rate of about 1 per 1,000. Because of the rarity of the condition, limited information is available.

Although the vast majority of patients are adults, cluster headache has been reported in children as young as 6 years of age.