FIDS & FACTORS (TM), GENES AND DRUGS
Each person who contends with headaches has a unique profile. We have developed a methodology to aid patients, physicians and others to understand and record this unique profile.
FIDS (TM) is an acronym that stands for Frequency, Intensity, Duration and Symptoms. Factors are all those "things" that contribute to, aggravate, agitate, cause or otherwise have the tendency to bring on your condition or make it worse. Historically, the headache community, especially the migraine community, has used the term, "Triggers". Triggers, however, is a misnomer, and it conveys an often inaccurate cause and effect relationship between these factors and the onset of a headache. Furthermore, "Triggers" and the often excessive attention paid to them, suggests to some that the root cause of the condition is the behavior of the patient, which is absolutely false. For the vast majority of migraine and other headache patients their is no magic substance that they can remove from their diets, and miraculously cure their condition. Their condition was written into their genetic code from conception, with a highly likely inevitability regardless of their personal dietary choices. So, when a term like Triggers is used, and misconstrues this important fact, then it is irresponsible of us, as a community, to continue to misuse such a misleading term.
The new term is "factors" for several important reasons. First, it is broad enough to encompass the broad range of agitators from diet to sleep to noise, heat, light, fragrances, weather, overly strenuous exercise, microbial exposure and other "factors". Unlike "triggers", "factors" does not suggest the immediacy that triggers, sometimes, incorrectly suggests. Finally, "factors" has a nice alliteration with FIDS (TM). FIDS & Factors (TM) is part of how U.S. Headache Association is reframing headache and migraine to more fully connote the complex spectrum of issues associated with headaches and migraine.
FIDS (TM), as mentioned, is Frequency, Intensity, Duration and Symptoms. Every patient's headache profile will vary along these dimensions. Frequency refers to how often a patient experiences headaches and other related symptoms. Frequency may range from once or twice per year to those patients who experience headaches every day, or nearly every day, like a constant companion. Frequency is usually measured in headache days per month. Frequency is the single measure that is used to distinguish whether someone has "episodic" migraine or "chronic" migraine. Some therapies are only indicated for people with chronic migraine.
Intensity is the measure of the patient's reported level of pain. Usually, this is on a scale of 1-10. It is not true that all migraines are severe. Migraines can be mild, moderate or severe. Patients may express that they are mildly or moderately migrainous. Those who live with migraine daily, are accustomed to making these distinctions. All migraines can be disabling to some degree. Obviously, a severe migraine is more disabling than someone who is mildly or moderately migrainous. In fact, their level of disability, when under the duress of a severe migraine is equivalent to that of a quadriplegic. A given patient may sometimes have mild, moderate or severe migraine, and even within a migraine cycle, a migraine may progress from mild to moderate to severe. For some patients, their progression of pain may progress slowly, while other patients may experience rapid onset of severe pain. Pain can be masked by other biochemical activity in the brain. For example, for some patients, being in a social environment may stimulate adrenaline, which tends to mask their underlying migraine. Once the patient withdraws from the social environment, adrenaline disappears very quickly, and that can cause rapid onset of pain. I once observed a child migraineur playing with another child after football practice, laughing, running and having fun. Within minutes of getting in his car to leave, he was complaining of a headache, and within 15 minutes after leaving that fun, playful environment, he was vomiting from migraine.
Duration is a measure of how long a headache lasts. For migraine patients, this can range from several hours to a day to as along as 3 days. It is unusual for a migraine to last longer than 3 days.
Symptoms are all the symptoms associated with the headache condition. Head pain is far from the only symptom of most migraine and other headache patients. There is an extensive list of symptoms, which we will not detail here, because that is a whole article of its own. Symptoms include: Head Pain, Eye Pain, Neck Pain, Nausea, Vomiting, Diarrhea, Light Sensitivity, Noise Sensitivity, Sensitivity to Smells, Aura, Visual Symptoms, and potentially many others. Even within the broad category of "head pain", we can break that down to which part of your head does the pain start in? Is it on both sides of your head or just one side? How does your pain progress? Etc. The symptom and onset pattern varies from patient to patient, though there are some typical pattern groups across the patient population. There are entire presentations just on symptoms. There are doctors who build their personal credibility on how well they understand their patients' symptoms. So, we are not going to attempt to give this important subject the comprehensive treatment it deserves within this article. We merely want to give you a sense of the complexities, for anyone not already aware of these complexities, and encourage you to read our article on symptoms, coming soon.
FIDS & Factors (TM) make up a headache patient's profile, which you can document before any treatment or further testing. When we refer to you, we first mean you, the patient, but this is also a useful format for the healthcare provider. The best method to maintain the profile is with a calendar. We find that people are not especially disciplined maintaining headache calendars, but there are also good reasons for that. Who feels like taking a bunch of notes, while they are in the throws of a severe migraine? Remember, we explained earlier, that, during that time, they are about as disabled as a quadriplegic. They may be laying down hoping someone will come along and ask if they can bring them their rescue med, a drink or an ice bag. They may not be especially capable of taking care of their own health needs at that moment, so they are unlikely to start drafting a novel about the whole experience. We recommend, if possible, snap a photo or series of photos, and develop your own set of hand signals to record the information, you want to record. Then, later, when you have time and are feeling better, you can go back and take notes based on your photos. You might snap a photo with 3 fingers up indicating you feel a migraine coming on and rate your pain at level 3. Within the photo you will already have the time and date. You can do the same with food. Snap a pic of each thing before you eat or drink. Then, when and if you get a migraine, you may go back and record those items you ate and drank in the prior 48 hour period to ID potential factors. You may also take note of weather changes and the like. Each person has to work out what works for them, so these are just some suggestions to help you think through a system that may work for you. This helps you and your physician, and helps inform potential treatment decisions.
Genes and Drugs are also two subjects, which are too broad to fully address in this article. This discussion is just to provide a broad perspective. First, let's discuss Genes. If someone has migraine, we know that their mother or father has or had migraine, whether they know it or not. Since there are more people with migraine who do not know it than there are diagnosed patients with migraine, this is a common and likely scenario. In fact, a patient could genetically inherit migraine from both their mother and their father, and neither the mother nor the father realize that they have or had migraine. A patient's father once told me that he never had migraine. He said, "When I was younger, I would get a pain in my neck, and it would make me throw up, but I never had migraine." If you know migraine, you know that what this man just described was migraine. Both his son and at least two of his grandchildren have migraine. For each one, their pain starts in their neck.
About 44 different genes have been identified that appear to be involved in migraine. There is not a migraine gene, but many genes in the migraine portfolio. Perhaps more will be discovered. In the future, genetic profiling will be a part of a patient's profile. In reality, the genes are already a part of the patient's profile. In fact, they are at the root of what makes up the patient's profile. We have just not yet learned how to read them.
Drugs and other treatments for migraine patients fall into two broad categories: Preventative Treatments and Abortive Therapies (aka Rescue Meds). As the names suggest, preventative treatments are usually taken regularly to prevent migraines. They also have the tendency to reduce the intensity of pain and duration of migraine, if the patient still gets a migraine. Preventative drugs include NSAIDs, Anti-Histamines, Decongestants, Anti-Depressants and sometimes other drugs. Abortive Therapies are drugs that are taken at the onset of a migraine in order to abort its progression. Most common abortive class of drugs are Triptan drugs. Sumatriptan (Imitrex) was the original, and several variants have since been developed. There is a very recent new class of drug, which counteract CGRP (Calcitonin Gene-Related Peptide) a substance found in the bloodstream of migraine patients, and known to play a causative role. This class of drug is often referred to as CGRP Drugs or Anti-CGRP drugs, which is more correct.
The Patient's Trial and Error Dilemma: Today, it is often difficult to know what drug combination will be most effective for a particular migraine patient. One of the patients in our patient profiles is a gentleman named Anthony, who was not diagnosed, until he was 33 years old, even though he had had migraine since he was a child. But, unfortunately, it was another 14 years before he was on the regimen of preventative medications that he currently takes, which have given him the best preventative results he has had, since his original diagnosis, it took decades before he got a correct diagnosis and another 14 years before receiving his most effective prescription regimen. The process of trial and error is a long, extensive and sometimes, nerve-racking and frustrating problem. A patient may try a drug combination that makes them a little better. Then, what do they do? Do they try another therapy to see if it makes them even better? What if the new drug does not work or makes them worse? The cost of a failed trial in terms of pain and suffering, perhaps lost productivity and career implications can be substantial. So, these decisions to roll the dice on trying something new can sometimes carry significant risks, in additional to the medical risks.
Sometimes, a patient may try a drug that appears to work well at first. Then, it becomes completely ineffective months later. Now, what do they do? And, you don't usually just try a medication for a day or a week. You usually give it a try for months before you try to draw any conclusions regarding its effectiveness. In the mean time, the patient just lives with whatever consequences they face, good or bad. Imagine enduring migraines while you wait to see if your new drug is going to work better than what you used to take. Or, imagine getting great results for 6 months, such that you're willing to accept some undesirable side effects. Then, all of a sudden, your med stops helping like it used to. This happens. And, it creates a dilemma for the patient. Do I stick with the results I am getting, or do I try the next drug in the hope of finding something better? This process, for many, especially those with chronic migraine, goes on for years. This is an area where U.S. Headache Association's research will likely improve the plight of millions, saving them years of inefficient, frustrating and time-consuming trial and error.
In closing, remember the acronymic phrase FIDS & Factors (TM), and document your FIDS & Factors (TM). Know that your condition is caused by your genes, and documenting your contributing factors is only intended to aid you and your healthcare provider in reducing the Frequency, Intensity and Duration of your headaches and other symptoms. Understand that the drug therapy that works, or works best, for one migraine patient may, or may not, work at all for another migraine patient, which forces us to use a, sometimes, lengthy and frustrating trial and error process to find the treatment that works best for you. Finally, please understand that that is why U.S. Headache Association is here. These are some of the issues that U.S. Headache Association is working to address for the betterment of all migraine and headache patients in the years ahead.
NOTE: FIDS & Factors (TM) is a headache profiling model created by Andrew Tillman and Andy Tillman and is their exclusive trademark, which they share for patients and providers to use in patient assessment and treatment, but not for other organizations to use in their communications, other than U.S. Headache Association. We claim FIDS (TM) as a Trademark on a standalone basis and FIDS and Factors (TM) as a Trademark when used in combination, both in reference to headache and migraine patient profiling.