Six women and four men between the ages of 18 and 65, diagnosed with chronic migraine according to the 2nd revised edition of the International Headache Society Diagnostic Criteria [21], were included in the study. The duration of chronic migraine averaged 11 years. All participants had some form of preventive medicinal treatment: 4 medicated with triptans during the typical migraine attack, 3 medicated step-wise, often starting with a non-prescription drug before proceeding to any form of Triptan, and 3 medicated with a non-prescription drug during the attack.
Table 1.
Demographic characteristics of participants (N = 10)
Age, median (min–max)
|
49 years (28–65)
|
Gender
Women (n = 6)
Men (n = 4)
|
49 years (28–65)
50 years (29–65)
|
Use of emergency medicine
Triptan
Prescription-free
Both (staircase model*)
|
4
3
3
|
Relationship status
Married
Live-in partner
Divorced
Single
|
4
3
2
1
|
Children at home
No children at home
|
5
5
|
Highest education
Upper-secondary
College/university
|
4
6
|
Employment
Employed
Unemployed
On sick leave/pension
|
4
1
5
|
Occupation
Teacher
Professional in health or social sector
Artist
Blue collar worker
|
2
5
1
2
|
Live in urban area
Live in rural area
|
7
3
|
*In the staircase model, participants are medicated step-by-step, often starting with a non-prescription drug before going on to some form of Triptan if the first measure proves insufficient.
Main categories
The participants’ experience and pain management strategies were assigned to one or more of four concepts: Migraine pain signal, Hope of false alarm, Guiding assumption, and Delayed medical management.
Migraine pain signal
Participants first experienced the migraine pain signal as either a progressive development during the day or acute pain upon waking early in the morning. Pain behind the eye, on the temple, or on the side of the head was generally interpreted as a signal that ‘now the migraine begins’. However, participants had difficulty distinguishing between migraine pain signal and other types of head or neck pain.
But when I tell someone, it’s very much like this, ‘Ah, but take the medicine when you feel it coming on’. But I find that really hard to do. I find it really hard to know... even though I’ve had migraine for so many years. But knowing that, ‘Ah, now is the time to take medication’, or ‘I can get through the day without medication’ I find really difficult... Participant (P) 5
What is it that makes you wait until you have [...] intense pain? Interviewer (I)
I didn’t think it was a migraine. (P8)
It’s that hard to differentiate? (I)
Mmhm. [Crying]. You know. I haven’t gotten so much help with it [Crying]. (P8)
Hope of a false alarm
A common pattern arose in which participants dismissed migraine pain signals until they could no longer be ignored. When the participants interpreted the migraine signal, they hoped it was a false alarm, and decided to wait and try non-medical treatment first. However, when they woke up with migraines, they were more likely to take their medication immediately.
I [...] denied it, but was aware it was there, but felt this did not affect me at the moment. (P5)
... little ignorance that I had... Especially now, when I think back on it, I had a, you know. I had, you know, a headache long before I took the medicine. But it was […] in any case quite a while, certainly a few hours that, I sat with... a headache, and probably could have taken, taken it seriously, and taken medicine at that time. (P4)
Guiding assumption
A guiding assumption in this context refers to an idea or rule that guides behavioural pain management during a migraine attack. The guiding assumption in the actual situation of emerging pain seemed to be ‘If I wait and try something else first, maybe I won’t need to take migraine medication’.
There were three reasons why the participants refrained as long as possible from taking emergency medication at the beginning of the migraine attack. The first, a health perspective, includes fear of addiction and/or of taking too much migraine medication, avoiding medication-induced migraine pain or avoid unwanted side effects associated with medication including memory loss and hallucinations. The second, a low-function perspective, comprises thoughts about not being able to drive or work while taking medication, and the third reason were, a popular tradition and internal rules perspective, includes to avoid unnecessary medicine, or first have extreme pain before taking medicine.
I also feel a little like, I don’t want to take Imigran like this. It’s rather ridiculous to know that you’re putting a lot of medicine inside yourself. I wait for it to pass, but that happens perhaps only one time in twenty. (P1)
I’m a little afraid of drug abuse. I willingly wait before I take a tablet even when [I’m] in so much pain. (P10)
Delayed medical management
The guiding assumption, ‘If I wait and try something else first, I may not need to take migraine medication’, led to delay in medication up to several hours after the first migraine pain signal.
Participants described a variety of inner (mental) strategies to manage pain during the migraine attack: ‘trying to put up with it’, trying to find a connection or cause, criticizing themselves, and trying to stay calm. The participants’ external behaviours during the attack (e.g., drinking water, meditating, or getting some fresh air) were determined by the participant’s interpretation of the cause of the migraine attack.
The negative consequences of migraine pain included poor sleep, slow recovery, and much lost time. These consequences impacted participants’ families and themselves physically, emotionally, socially, and at work. Participants felt sad and angry about the frequent attacks and the suffering they caused and hopeless about their inability to manage their illness. Some said that during severe attacks the thought they would prefer to die. The stronger the pain, however, the greater its effect on participants’ functioning.
How long was it [before taking acute medication] after you felt tightness around the eye? (I)
[Short pause] Four, five hours. About four or five hours. Because then I thought, ‘I can manage [the dog], so I can go out’. (P2)
Did you try to wait out the pain itself? (I)
Yes, I tried it; yes, before I took the injection. And it’s very stupid. But I do it. Do it very often, and especially when taking too much medicine, I think, ‘Yes, it’ll be fine, I’ll have a cup of coffee’. (P2)
So, I’ve had many occasions where the headache has gotten worse because I didn’t bother... to take my medicine. When I really should have taken it. If I feel I need medication, and I don’t take the medicine, the headache becomes worse. And then I become much more affected by it. (P3)