headache diary

5 January 2017

7 Ways to Stick to Your New Treatment (or not)

Migraine patients are constantly frustrated by a lack of good treatments, good information, trained health professionals, and funding for research. And we’re right to be concerned. But there’s another major issue that is keeping many patients from the best treatments.

It’s simply this: we don’t do what the doctor tells us to do.

One of the major recommendations for solving this problem is creating a “blame-free” environment. Well, sometimes we need the truth, even if it involves so-called “blame”. But it’s actually a lot more complicated than simply “the patient is bad because he didn’t take his meds”.

There are many reasons why we don’t listen to our doctor’s instructions. Sometimes – hopefully not often, but sometimes – a doctor may just give horrible instructions. Like “find yourself a husband” or “stop being so stressed”.

There are a lot of things doctors can do to improve “adherence” or “compliance” as it’s called in the medical field. There’s a whole area of study related to this issue.

Did you know, for example, that some doctors will not even discuss certain treatments with you, because they think it’s a waste of time, because chances are you won’t listen? An example might be a strict diet. Even if you could drastically improve your health by weighing and measuring everything you eat – would you? Or by running 10 miles every day?

But there are some things we as patients can do in order to take our doctor’s recommendations more seriously. After all, if you’re going to try it, go all the way, and make sure you know whether it works or not. Taking your medication 60% of the time, or adhering to your diet 3 days a week, really won’t tell you if the treatment “works”.

Here are some suggestions to maximize your treatment in the year ahead (remember, this is a very complex issue – these are just a few ideas to help you, not a complete overview of the issue).

Get Organized. Do you forget to take your meds? No time to make that healthy meal? A big part of it may be organization. What can you do to help remember? Why not invest in a nice pill dispenser (here are some popular examples – Pill Organizer Box Weekly Case, 4ucycling 2 Pack Easy Carry Waterproof Pill Case, or the extremely popular Borin-Halbich 7 Day 3 Compartment Pill Organizer)? How about an app to remind you (like the very entertaining Medisafe)? Why not plan a weekly menu on Saturday morning? Whatever works for you.
Find a Friend. Can someone else help you? Hold you accountable? Everyone needs a friend once in a while.
Rewards. How about a reward at the end of the month if you stick to your treatment?
Understand your disease (and the treatment). Sometimes we’re reluctant to try a treatment because we don’t see why it would “help”. Educate yourself – it’s your responsibility. But feel free to ask your doctor lots of questions.
Understand your disability (keep track!). If we have a 20% improvement, but don’t notice it, we won’t care about the treatment. As much as you can, keep track of where your symptoms are at. Use a paper diary, or an app, or a periodic test. Whatever works – the more detail the better.
Recognize your beliefs. Sometimes we’re not even aware of them, but we have a lot of ideas (whether correct or correct under some circumstances, or even mistaken) that affect our treatment. Are you afraid of taking a “daily medication”? Why? Do you believe that “vitamins” won’t help? Why? Are all “drugs” bad? There may be a lot of wisdom in your idea, but there may be circumstances in which you need to rethink a little. Don’t be afraid to examine your beliefs.
Communicate with your doctor (and be honest). Do you have a plan for communicating with your doctor? Ok, under some circumstances you may just need to find a new doctor. But if you’re going to stick with the one you have, you need to communicate. And be honest. If the treatment regimen is just too complicated – say so. If you’re simply not going to give yourself an injection – admit it and move on. If you need a break from trying new meds – take a break. There are going to be times when you can’t “adhere” perfectly to your treatment – and sometimes you just need to be ok with that. But if you communicate to your doctor, she can help you find something that you can adhere to.

One more thing – at this time of year, full of focus on New Year’s resolutions, there is actually some good advice out there to help you stick to your plan. If you’re reading that advice, think about how you might apply that to your medical treatment.

After all – imagine if you gained even a few more days of health this year! What would you do with them?

20 April 2015

Do “Pain Diaries” Slow Recovery?

James Discoveries & Stats, Tips 0

Everyone knows that you should keep a headache diary in order to better understand your symptoms and triggers, right? Or – could this practice actually make things worse?

Pain diaries are actually used for many different conditions, and they’re used for different reasons.

What if these diaries were actually increasing our perception of pain? Or our fear of pain? What if, instead of making things better, they were making things worse?

Dr. Robert Ferrari has done some research into the use of pain diaries for chronic pain. In a study published in 2010, it was found that patients who completed a daily questionnaire seemed to have worse and more frequent symptoms than the control group.

Last year a new study came out, focusing on recovery from lower back pain. After three months, 79% of the control group had recovered, while only 52% of the “diary group” had recovered.

Are diaries making the symptoms “seem” worse? Or are they actually making things worse?

It’s tempting to make a comparison here with headache and migraine diaries. But the reality is, the purpose of a headache diary is more than just letting your doctor know how disabled you are, or how intense your pain is.

What is a headache diary actually for?

It helps you identify symptoms. Headache disorders can be difficult to diagnose properly, and can be accompanied by a host of unexpected symptoms. Keeping a diary helps prevent misdiagnosis.
It helps you identify triggers. If you find that your headache symptoms come once a month, or every spring, during most thunderstorms, or often after that glass of wine – that can help you better fight the attacks.
Yes, diaries can also help doctors and patients understand the intensity of the pain and level of disability from pain and other symptoms. This helps with decisions about treatment as well.
These diaries can also help others understand migraine disease and headache disorders. They can help with future research.

In the case of headache and migraine diaries, the information can be a big part of the solution. Even if they make you “notice” your pain more, the long term benefits can be tremendous.

That being said, it may not be wise to keep a diary every day for a lifetime. When things are stable, sometimes it may be better to set the diary aside, at least for a time.

But in general, the benefits seem to outweigh any issues for most patients.

27 October 2014

Describe Your Pain. Better?

James Tips 2

A few days ago, Christine Miserandino of ButYouDontLookSick.com posted (reposted?) some thoughts about the ways we describe our pain. Or I should say, the ways we are asked to describe our pain.

If you’ve had cancer pain or arthritis pain or lupus pain or migraine pain or any of a number of different kinds of pain, you know what we’re talking about. Often it’s a scale of 1 to 10.

And various commenters have expressed their frustration with this scale. For example, what if you put a 10 one day, and then find that the pain has gone right off the scale the next day?

I avoided this problem early on by saying that 10 was a “theoretical impossibility” – that I would actually pass out if I were in that much pain. But that didn’t keep me from pushing the scale and adding a 9.5 more than once!

Then there’s the almost useless Headache (Yes) (No), or do you feel (GOOD) or (BAD) . . . which I’m afraid makes my life look worse than it is!

Most doctors should be well aware of the limitations of these scales. It’s mostly just a way to see if things are improving or getting worse. And numbers are of course the easy way to measure over time, with all their limitations.

But don’t forget that there are various ways of measuring. As you fill in your headache diary, or prepare to visit the doctor, here are some things to think about.

The Number Scale

This is the most common, usually 1 to 5 or 1 to 10. Also, especially in the case of children, this scale may be translated into faces that look very happy or very sad.

Remember, the most important thing is to compare your pain this time to your pain at other times.

Also, it’s important to know what exactly you’re measuring. For example, you might measure just pain, but that would by no means tell the whole story if you’re having a migraine attack. You could say you’re measuring overall “discomfort” from all your symptoms, or disability.

Mild, Moderate, Severe

This is another one that can easily be translated into numbers (1, 2, 3). Again, be aware what you’re measuring. Symptoms overall? Just pain? Disability?

Adjectives

Using adjectives to describe headache is very important, because different types of pain can indicate different types of headache and causes as well. Here are a few to get you thinking…

Achy		Burning
Cutting		Dull
Gnawing		Inflamed
Pounding		Pressing
Pulsating		Sharp
Shooting		Squeezing
Stabbing		Stinging
Tearing		Vice-like

Remember, you can use adjectives to describe other symptoms as well.

Symptoms

Some headache diaries specifically mention major symptoms. The most common would be nausea. Do you feel nauseous? Did you vomit?

I’d rather not even answer that question in the middle of an attack, but it is very important to be aware of the symptoms that you have that aren’t headache.

For example, nausea, sensitivity to light, noise, smells. A feeling of heaviness. Fatigue. Stiffness. Weakness. Numbness.

To think this through, check out What is Migraine? (the Story of Symptoms)

Location(s) of Pain

It’s very common for migraine diaries to include questions about the location of the pain. One sided? Behind the eyes? Back of the head?

This is another very important clue about where the headache is coming from and how to treat it.

But something that is often overlooked is pain in other parts of the body. Neck, feet, stomach – make a note, even if it doesn’t seem to be related to the headache.

How it Affects Your Life (Disability)

More and more, researchers and doctors are looking into the actual disability that is a result of headache conditions. They may use fancy tests to measure disability over time, or just ask you how often you’ve missed work or school.

Of course the more specific you can be, the better. You may go to work to make an important presentation, when you otherwise would have stayed home. You may work every day, even though some days your productivity is half of what it is other days.

Jotting down the decrease in productivity on a diary, even using yet another 1 to 10 scale, may help you have a better idea what your symptoms are doing to your life.

“Type” of Headache

When I was younger, I noticed that my attacks seemed to fall into various categories. These were a mix of symptoms. For example, maybe a throbbing, inflamed headache where I became very irritable, as opposed to a piercing headache where I was nauseous and very sensitive to light.

Some people do have attacks that are very similar, for example a menstrual-related headache versus a headache other times of the month. If your attacks don’t seem to regularly fall into “types”, this will be too simplistic for you.

Other ideas?

What other ways have you measured your pain/symptoms/disability for yourself and/or your doctors? We would love to hear your tips. Remember, the better we can record and communicate these things, the better we can help ourselves and others with similar symptoms.

2 July 2012

Review: Ubiqi Health Migraine Tracker

James Resources 1

I really wanted to like the Ubiqi Health app for tracking your migraine attacks. Well actually, I do like it – really with only one exception. And for many users, that exception won’t matter. But we’ll get to that in a moment.

What is the Ubiqi Health Migraine Tracker?

The Ubiqi Health Migraine Tracker is an app for your iPod, iPhone, IPad, Android, Blackberry – well, for your various gadgets – to help you track your migraine attacks. But that’s not all.

The Ubiqi app helps you track things that may be triggering migraine attacks, and also the duration of your attacks, the frequency, and even what treatments work or don’t work.

For many years we’ve talked about the importance of keeping track of your migraine attacks, along with triggers and treatments when possible. Whether you do it electronically or on paper, it’s helpful for you and your health providers as you seek the best treatment.

This app is an excellent way to do that. If you’re a smart phone or iPod user, you’ve got your tracker right with you. You can also use it on your desktop, and even print out reports for a specific time period.

A closer look…

But let’s take a closer look at the app.

First, you’ll need to register. Of course, all your health information is totally private – this allows your information to be backed up so that you can access it in multiple locations and restore it to your app itself.

Then you’ll have the option to track a migraine episode, track potential triggers, or add a note.

The challenge with writing a review like this is that it’s easy to make it sound more complicated than it is. The beauty of this app is that it’s very easy to use.

When you enter a migraine episode, you simply enter the date and time (the app assumes the episode is happening now, but you can change the start and end of the attack any time), then you can also enter pain intensity, treatments, potential triggers and notes.

You can do this all very quickly because you can enter treatments and triggers ahead of time. For example, if your doctor prescribes Frova for your attacks, you can enter that into the app along with the dosage, and you’re good to go.

So usually all you have to do is tap, tap, tap and before you know it you’re done.

Obviously this is a book for migraineurs who don’t want to do anything during a severe attack!

However, during or after an attack you can add notes – which makes this app extremely flexible.

Now, you’ve been using it for a while – what can you do with the information?

You can quickly see all attacks on a calendar, or in a list with more detail. You can view it on your smart phone or online anywhere.

Then – and this is beautiful – you can get a report.

As you can see, you can get a spreadsheet, a pdf file, or a printable report that you can view right in your browser.

The report will show you a chart with dates and pain intensity, so you can see at a glance how you’ve been over that period. Then it will break it down into a table, so you can see what treatments worked or didn’t work, and what migraine triggers were most common.

Of course, you can print this and show it to your doctor – or even a spouse, or friend.

As you can see, this can be a powerful tool!

You’re no longer guessing – you can see at a glance exactly what has worked and what hasn’t.

So what’s the problem?

For some migraineurs, this app would be almost perfect (I hate to call anything 100% perfect!).

But for some – there’s something lacking. And actually, I think it could be implemented into the app, and I’d like to recommend it.

The problem is that the migraine attacks are broken up into "episodes" (fair enough), and these episodes have a level of pain intensity. But you can only choose one level.

(Side note: I prefer to record symptom or discomfort intensity, because migraine symptoms are more than just pain. Some people may find that recording pain is enough, but you can easily use the app to record your symptom level, or disability level. It’s just how you use it.)

The problem comes when an attack lasts for more than one day. The level of pain (or symptoms) may vary quite a bit over the course of a day or two days. That information can be very important.

And when you’re a chronic migraineur, you could possibly have longer bouts with pain – a week, or even constantly.

In this case, the varying level of pain/symptoms becomes a critical thing to record. And this is a key audience who would really appreciate this app.

Now you can work around this somewhat, by simply entering different episodes based on the level of pain. What you’ll do is enter separate episodes one after another. And it works fine, and you may choose to do it that way and have no problem.

But in my opinion it would be better to merge those into one "episode", or into one day, because otherwise it’s a little confusing trying to track the treatments and triggers – because now you may be taking one treatment for multiple episodes in one day, for example. (For constant migraine pain, for example, it might be nice to see morning, afternoon, and night, with different symptom levels, but all together day by day – rather than listing 3 completely separate episodes.)

One reviewer on the app store noticed the same thing from a different standpoint. If a migraine attack lasts for more than one day, there’s only a "dot" on the chart for the first day. Hey, some people would only get dot per year! 🙁

For some, this may make the app unusable. But for many, this won’t be an issue at all.

Still, I think that the designers of this app should be able to make the change to make this app ~~perfect~~ almost perfect for everyone. 😉

Summary

For many migraineurs, this will be just what you need to really take control of your treatment. That may seem like a strong statement, but simple tracking of our treatments, triggers and symptoms is the weakest link for many of us.

For most, it will simply be a matter of preference. Some prefer paper, others prefer to track using their favourite gadget. Whatever makes you actually do it – use that thing!

Thanks to Jacqueline Thong and her team at Ubiqi Health for putting together an easy to use – and still very useful – app.

Try it today! It’s free!

6 May 2011

New Survey: Doctor-patient Communication

James Discoveries & Stats, News 0

A new survey conducted online this past November suggests that doctors and patients need to communicate more. No surprise there. But how?

1218 diagnosed migraine patients taking prescription medication participated in the study. 533 doctors also participated, doctors who treat 5-10 migraineurs each week.

One of the interesting things the survey shows is that doctors and patients are not always focused on the same things (no surprise) – in fact, maybe they could be more focused in general. Most of the time migrainuers are coming to see their doctors with health concerns other than migraine – and then they end up talking about migraine too. Could it be that this leads to less focus on the important issues?

For example, what are some of the key things talked about? Doctors say:

the frequency of migraine attacks
the timing of when patients take medication(s)
personal migraine triggers
the proper use of over-the-counter medications

A majority of doctors reported having these discussions. But a minority of patients said they talked about these things with their doctors!

How could communication be better? Both doctors and patients have some suggestions:

Many patients and doctors wanted to have more discussion about the patient’s satisfaction with prescription medications.
Doctors and patients were concerned that more pressing health issues were interfering with the migraine conversation. Sounds like it’s time to schedule regular appointments to talk primarily about migraine!
Doctors were frustrated by how often their patients couldn’t give a clear picture of how bad/frequent migraine attacks were, or how well medications were working. Sounds like it’s time for a migraine diary to me…

We’ve talked about many of these issues before. If you’re a patient, don’t miss the HeadWay article How to talk to your doctor. If you’re a doctor, take the time to read How to be a better Headache or Migraine Doctor.