(Sorry for the typos as I only had time to type this quickly without proof-reading)
1. Bad Disease. Most headache disorders result from a combination of genetic influences and acquired injuries to the sensitive headache alarm system in the brain. For example migraine disorders usually have bad genes as the major cause, while post-traumatic headaches are caused more by direct trauma to the head or neck. Some people have a combination, where they had a tendency towards having migraines for years but then got much worse after an injury. Some exotic headache disorders, such as New Daily Persistent Headache, may be caused by viral insults to the sensitive headache generator in the brain, however, no one knows for sure.
Like all other diseases; for example, diabetes, multiple sclerosis and asthma, there is a spectrum of severity. Within each of these disorders you have people with mild forms and others, due to no fault of their own, have horrible disease. People still die from asthma despite having excellent treatment and the patient doing everything they can possible do to prevent attacks.
Likewise, the most common reason that some headache patients suffer so much and don’t respond to treatment, is that they simply have bad disease. It is not their fault. It is usually not the fault of the medical provider who is trying to help them. Of course it is not fair. Usually there is not simple solution but to keep fighting it day after day. Headache disorders, different than some of the other aforementioned disorders, can often get better and even go away. So there is always hope. Treatments will also keep improving. So, while the sufferer should hate their pain and their frustration is totally understandable, there is no place for guilt, shame or displacing their anger onto the people who care about and are trying their best to help them.
2.Medication Overuse Headache Syndrome. It is a proven scientific fact that some sufferers of headache disorders, suffer so badly and don’t get better because they are taking medications that are making their headaches worse and untreatable. Sometimes these patients argue that they rules don’t apply to them. If the patient is taking narcotic medications, combination pain medications (Excedrin®, Fioricet® and etc.) or decongestants more than two days per week, they may be in Medication Overuse Headache. If the patient is taking migraine specific medications (called “Triptans” such as Imitrex®) more than three days per week they may be in Medication Overuse Headache. The only way to know for sure is for them to stop that medication and give their brain up to three months to recover. If they were in Medication Overuse Headache, their headaches will get much better during this time. If their headaches don’t get better during this time then they can assume that they are not in Medication Overuse Headache and can resume taking those medications, if they were helpful.
Getting off rebounding medications can be difficult. There are hospital problems devoted to helping patients get off the rebounding medication in a compassionate manner. However, health insurance companies are totally ignorant about the problem of Medication Overuse Headache and will no longer pay for such hospitalizations, even though it could change the patient’s life forever. We do have other out-patient ways to help patients through this process but they must be on-board with the plan or it will not work.
3.Not Having Access to a Headache Specialist. It is only rational that medical providers who have devoted their entire careers to studying and treating headache disorders know much more about how to do that than those who have not. Those few neurologists, who are headache specialists, will be the first to say that a general neurologist doesn’t have much more to offer a headache patient than a primary care provider. At this level, the provider can advise trigger avoidance, the basic supplements for headache prevention and prescribe the level one preventative medications such as amitriptyline, propranolol and topiramate. These measures will help about half of the headache sufferers. However, the other half will require more advanced treatments that are ONLY available with the help of a board certified headache specialist.
At the present time there is a huge disparity between the needs of complex headache sufferers and the availability of headache specialists who can meet those needs. In the state of Washington there are 2.2 million people per each board certified headache specialist. This situation is rapidly worsening under the control of health insurance companies who devalue headache as a legitimate medical disorder and have stopped paying for such treatments. In the U.S., a recent survey of headache specialists found that 49% do not expect to still be treating headache patients in one year, unless things change.
Continued . . .