A case against migraine headache diary
Keeping a diary of symptoms has long been considered a part of a successful approach to managing migraine headaches. The diary can help identify potential migraine triggers and contributing factors and a description of specific symptoms can help tailor individual therapy.
An article just published in Wired magazine Why tracking your symptoms can make you feel worse, challenges this assumption.
In my early years of practicing headache medicine (yes, “headache medicine” is a formal subspecialty of neurology) I would urge my patients to keep a diary, but they would have all kinds of excuses why they did not. I even developed a phone app, which was easy to use and was loaded with features and educational materials. Everyone always has their phone nearby, so unlike with a paper diary, they would not forget it at home or need a pen, or have it eaten by their dog. Nothing doing. Maybe, one in 10 of my patients attempted to keep a diary. Then, since I also have migraines, I tried using the app and I also failed miserably. My excuses? Forgot, too busy, I know all about my migraines, so what’s the point?
The article in Wired quotes research that suggests that keeping a diary of symptoms can make you feel worse. This seems to be true across different conditions – insomnia, back pain, and also migraine. One possible explanation is that constantly paying attention to sensations in the body we can magnify them. These sensations may send an alarm to the brain, oh-oh, a migraine is starting. This in turn leads to anxiety, activation of the fight-or-flight response and soon a real migraine begins. Actually, when a patient comes in with pages and pages of notes that describe each migraine attack with possible triggers, detailed description of each attack, medications taken and their side effects, I know that this patients will be harder to help.
In case of migraine headaches we do have a very good substitute for a daily diary. It is a Migraine Disability Assessment Scale, or MIDAS, which assesses migraine-related disability over the previous three months. This is a simple 5-question scale that was validated by comparing a daily diary with patient recollection. Surprisingly, the correlation was very strong and the scale gives reliable information. We ask patients to complete MIDAS on every visit. At a glance, it tells us how disabling the migraines are and how aggressive we need to be in starting preventive therapies, such as Botox, drugs, and the new monoclonal antibodies. This score is also helpful for patients who may not remember how disabling the headaches were before they started a particular treatment. It also shows the insurance companies how well an expensive treatment such as Botox works, so that they approve continued therapy.
As far as identifying triggers, most are obvious and patients do not need a diary to tell them that alcohol, lack of sleep, skipping meals, stress, etc. are causing their attacks. Yes, for some patients a diary can identify gluten sensitivity, menstrual cycle, or another trigger that was not obvious, so I would not discourage anyone from keeping a diary. But do it for a few months and if no useful information can be gleaned from it, stop.
Chronic paroxysmal hemicrania and hemicrania continua are rare conditions, which makes it very difficult to collect enough patients for a blinded study. However, these two conditions share some features with cluster headaches, for which Emgality does work well. The first-line treatment for hemicranias is an anti-inflammatory medicine, indomethacin. We’ve also had success with Botox injections, both for hemicranias and cluster headaches.
Has Emgality been used in the treatment of paroxysmal hemicrania?
I have tried a couple of migraine diary apps but never liked them. Their perspective is wrong. I don’t need to keep track of my triggers, except for the weather. I don’t like to grade my pain from 1-5. And since I take medicine every day, what is it that I should note about my migraine? When I take medicine I feel better!
What’s meaningful for me is to keep track of the medicines, remedies and treatments. I do that in the app Period Tracker, which is for women and their hormonal cycles, but it turned out this app is easy to adapt to my needs. In stead of symptoms I have medicines and there are three levels, which I use as 1, 2 or 3 tablets.
So, forget about making notes about your migraine. Just keep track of the medicines you take. Then maybe add some little note about the day like “heavy rain today” or “had to get up at 04 PM to catch the ferry”.
MIDAS is part of our Follow-up Form you can download here https://nyheadache.com/how-our-office-works/
Where can I get more MIDAS info? I currently log “stuff” because I need data. My log reveals all kinds of useful data. Besides, I am a data geek. Anyway…. MIDAS info seems like it could be useful. Thanks.
Thank you for this blog post. I agree wholeheartedly with Jana’s comment. Keeping a headache diary (which I have done sporadically for the past 8 years) only magnifies my anxiety and depression about being a chronic migraine patient. I am sure that a diary is helpful to some patients, but it has never revealed any useful information to me or my neurologist. Looking for patterns where there are none is frustrating for both of us! I am currently keeping a simplified diary because my neurologist thinks it’s important to have data for my insurance provider (so they will continue paying for Emgality and perhaps Botox). But I don’t include a lot of details and I try to minimize its importance in my life.
Thank you so much, Dr. Mauskop, for this amazing blog and for all the information you share here! I was so glad to see this post regarding migraine diary-keeping, as this is something that is constantly recommended at every turn in the migraine world. It’s also something I have struggled with (have dealt with episodic migraine for 20+ years, now 47). The number one reason I find keeping a migraine diary to be challenging is that . . . I find it very depressing. I have my migraine attacks (typically 8-13 per month), deal with them as best as I can with lifestyle modifications as well as triptans/NSAID (have tried numerous preventatives including Aimovig with little to no lasting success in decreasing migraine frequency/intensity) and then simply try to keep living my life, dwelling on the hours each week I am in pain as little as possible. Writing it all down forces me to relive it all again, and it is really a downer, to put it plainly.
I know that keeping a migraine diary gives me a more realistic picture of the number of pain days I have had over a period of time, which is certainly helpful information for my neurologist, but it also reinforces in my mind that I have a major problem in my life, a disease involving degrees of awful pain on a frequent basis, which then makes me more hesitant to go places and do things I want to do. When I don’t write down the attacks in detail in my diary I seem to psychologically move on from them better. For me, it’s a struggle between wanting accurate information to present to my doctor, vs. minimizing the hold that migraine has over my life, which seems to rise in prominence when I see it in writing.
Thank you once again for taking the time to generously maintain this blog and share current information: it’s greatly appreciated!
Please read my previous posts on the use of marijuana for migraines and pain, here and here and here
Did you guys ever try using medicinal marijuana for severe headache or migraine? I’m really curious about this matter and wanted to ask if you guys have any experience using cannabis. I came across some article that says medicinal marijuana can help you cope with these types of problem and some other health issues. I have 0% experience using cannabis so I’m hoping some of you guys can enlighten me and give me more information about this. Thanks!