From 10/2015 to 08/2017, a total of 1327 cluster headache patients were recruited. According to inclusion criteria, final analysis included data from 631 respondents (episodic cluster headache: 64% [n: 406/631], chronic cluster headache: 36% [n: 225/631]). The cCH to eCH ratio was 1:1.8. The female (42%, n: 267/631) to male (58%, n: 364/631) ratio was 1:1.36.
Median age at onset of CH symptoms was 25 years (SD ± 11.37, range: 4–62, n: 622/631) and the median age of first diagnosis (by a physician) was 33 years (SD ± 10.38, range: 8–63, n: 631/631). In 89% (n: 559/631) of the patients, the diagnosis was made by a neurologist, in 11% (n: 72/631) by an unspecified type of physician, whereby 44% (n: 279/631) self-diagnosed before the diagnosis was made by a physician.
Pain characteristics and accompanying symptoms
Sensory quality: The five most frequently reported pain qualities during cluster headache were sharp (24%, n: 160/631), piercing (18%, n: 120/631) pressing (12.5%, n: 84/631), burning (11%, n: 74/631) and pulsating (10%, n: 65/631).
Accompanying vegetative symptoms: Most respondents (86% n: 544/631) reported vegetative symptoms during CH attacks. The five most common symptoms were lacrimation (71% n: 448/631), stuffy nose (59%, n: 369/631), red eyes (58%, n: 36/631), ptosis (122%, n: 408) and runny nose (46%, n: 293/631). Miosis was reported by 19% (n: 122/631) of respondents. Restlessness was reported by 85% (n: 533/628, missings: 3).
Treatment
Pharmacotherapy: In 89% (n: 563/631) of respondents, CH was treated with medication including oxygen for acute or prophylactic purpose.
Acute treatment: 87% (n: 540/631) of respondents received acute treatment, consisting of triptans in various applications (nasal spray [38%, n: 238/631], sumatriptan injections [32%, n: 205/631], tablets [23%, n: 144/631]) and oxygen inhalation [71%, n: 384/543, missings: 88]).
Prophylactic treatment: Prophylactic treatment was received by 54% (n: 344/564, missings: 67) of respondents: Verapamil (75%, n: 262/349, missings: 282), topimarate (429%, n: 38/346, missings: 285), lithium (9%, n: 33/346, missings: 285).
The median satisfaction (NRS: 0 = no effect, 10 = complete absence of pain) with drug treatment (prophylactic and acute) was rated at 6 (n: 564/631, missings: 167, SD ± 2.6, IQR 4).
Non-pharmaceutical treatment: 32% of respondents (n: 202/627, missings: 4) received non-pharmaceutical treatment for CH: occipital nerve stimulation (7%, n: 16/234, missings: 297), stimulation of the pterygopalatine ganglion (7%, n: 16/231, missings: 400), percutaneous direct current stimulation (11%, n: 25/227, missings: 404), non-invasive transcutaneous vagal nerve stimulation (20%, n: 45/226, missings: 405) and acupuncture (50%, n: 111/226, missings: 405).
The median satisfaction (NRS: 0 = no effect, 10 = complete absence of pain) with non-drug treatment was rated at 3 (n: 99/631, missings: 532, SD ± 3.4, IQR 6).
Pain localization during stages of CH attacks
For pain location, patients could select up to 5 points; however, mean responses per phase (onset:peak:radiation) were 3:3:2.2. Lateralization: 49% (n: 310/631) reported only right-sided pain, 41% (n: 250/631) only left-sided pain and 10% (n: 63/631) ) reported side changes between attacks. Pain location varied during the course of a CH attack. (Fig. 3)
Table 1:
Comparison of pain location [1-44] frequencies for onset. peak and radiation
Loc.
|
Onset
|
Peak
|
Radiation
|
Onset vs. peak
|
Onset vs. radiation
|
Peak vs. radiation
|
|
n
|
%
|
n
|
%
|
n
|
%
|
p
|
p
|
p
|
1
|
12
|
1.9%
|
13
|
2.06%
|
12
|
1.9%
|
3.0000
|
3.0000
|
3.0000
|
2
|
6
|
0.95%
|
8
|
1.27%
|
17
|
2.69%
|
2.3220
|
0.0810
|
0.2790
|
3
|
7
|
1.11%
|
11
|
1.74%
|
11
|
1.74%
|
1.0320
|
1.4430
|
3.0000
|
4
|
27
|
4.28%
|
30
|
4.75%
|
17
|
2.69%
|
2.0340
|
0.5250
|
0.2400
|
5
|
56
|
8.87%
|
61
|
9.67%
|
16
|
2.54%
|
1.6530
|
p < 0.001
|
p < 0.001
|
6
|
27
|
4.28%
|
16
|
2.54%
|
28
|
4.44%
|
0.1890
|
3.0000
|
0.2460
|
7
|
26
|
4.12%
|
12
|
1.9%
|
32
|
5.07%
|
0.0090
|
1.5120
|
0.0090
|
8
|
9
|
1.43%
|
9
|
1.43%
|
21
|
3.33%
|
3.0000
|
0.1140
|
0.1140
|
9
|
20
|
3.17%
|
26
|
4.12%
|
22
|
3.49%
|
0.7140
|
2.6040
|
1.9530
|
10
|
79
|
12.52%
|
101
|
16.01%
|
32
|
5.07%
|
0.0480
|
p < 0.001
|
p < 0.001
|
11
|
144
|
22.82%
|
157
|
24.88%
|
51
|
8.08%
|
0.8610
|
p < 0.001
|
p < 0.001
|
12
|
242
|
38.35%
|
322
|
51.03%
|
54
|
8.56%
|
p < 0.001
|
p < 0.001
|
p < 0.001
|
13
|
45
|
7.13%
|
48
|
7.61%
|
35
|
5.55%
|
2.2650
|
0.8460
|
0.5130
|
14
|
26
|
4.12%
|
20
|
3.17%
|
30
|
4.75%
|
0.9810
|
2.0310
|
0.6090
|
15
|
5
|
0.79%
|
6
|
0.95%
|
11
|
1.74%
|
3.0000
|
0.6300
|
0.9960
|
16
|
39
|
6.18%
|
43
|
6.81%
|
41
|
6.5%
|
1.9050
|
2.7300
|
2.7300
|
17
|
89
|
14.1%
|
105
|
16.64%
|
46
|
7.29%
|
0.2430
|
p < 0.001
|
p < 0.001
|
18
|
193
|
30.59%
|
214
|
33.91%
|
46
|
7.29%
|
0.2970
|
p < 0.001
|
p < 0.001
|
19
|
153
|
24.25%
|
190
|
30.11%
|
47
|
7.45%
|
p < 0.001
|
p < 0.001
|
p < 0.001
|
20
|
49
|
7.77%
|
60
|
9.51%
|
41
|
6.5%
|
0.5340
|
1.3020
|
0.1860
|
21
|
41
|
6.5%
|
35
|
5.55%
|
74
|
11.73%
|
1.2510
|
p < 0.001
|
p < 0.001
|
22
|
8
|
1.27%
|
9
|
1.43%
|
30
|
4.75%
|
3.0000
|
p < 0.001
|
p < 0.001
|
23
|
8
|
1.27%
|
17
|
2.69%
|
29
|
4.6%
|
0.1470
|
p < 0.001
|
0.2220
|
24
|
80
|
12.68%
|
74
|
11.73%
|
59
|
9.35%
|
1.7430
|
0.2220
|
0.6090
|
25
|
129
|
20.44%
|
135
|
21.39%
|
57
|
9.03%
|
1.9440
|
p < 0.001
|
p < 0.001
|
26
|
36
|
5.71%
|
25
|
3.96%
|
67
|
10.62%
|
0.2730
|
0.0030
|
p < 0.001
|
27
|
15
|
2.38%
|
12
|
1.9%
|
32
|
5.07%
|
1.9920
|
0.0600
|
0.0090
|
28
|
12
|
1.9%
|
13
|
2.06%
|
17
|
2.69%
|
3.0000
|
1.3230
|
1.6680
|
29
|
32
|
5.07%
|
28
|
4.44%
|
58
|
9.19%
|
1.8510
|
0.0120
|
0.0030
|
30
|
19
|
3.01%
|
21
|
3.33%
|
55
|
8.72%
|
2.5170
|
p < 0.001
|
p < 0.001
|
31
|
6
|
0.95%
|
7
|
1.11%
|
16
|
2.54%
|
3.0000
|
0.1230
|
0.2340
|
32
|
11
|
1.74%
|
8
|
1.27%
|
13
|
2.06%
|
1.6470
|
2.5170
|
1.1490
|
33
|
9
|
1.43%
|
10
|
1.58%
|
14
|
2.22%
|
3.0000
|
1.0770
|
1.5690
|
34
|
40
|
6.34%
|
25
|
3.96%
|
25
|
3.96%
|
0.0750
|
0.2040
|
3.0000
|
35
|
42
|
6.66%
|
19
|
3.01%
|
45
|
7.13%
|
p < 0.001
|
2.4600
|
0.0030
|
36
|
15
|
2.38%
|
4
|
0.63%
|
31
|
4.91%
|
0.0570
|
0.0720
|
p < 0.001
|
37
|
4
|
0.63%
|
0
|
0%
|
15
|
2.38%
|
0.3750
|
0.0570
|
p < 0.001
|
38
|
10
|
1.58%
|
5
|
0.79%
|
21
|
3.33%
|
0.6810
|
0.2160
|
0.0030
|
39
|
18
|
2.85%
|
10
|
1.58%
|
23
|
3.65%
|
0.4020
|
1.5660
|
0.1110
|
40
|
44
|
6.97%
|
24
|
3.8%
|
36
|
5.71%
|
0.0090
|
1.1220
|
0.3810
|
41
|
6
|
0.95%
|
1
|
0.16%
|
14
|
2.22%
|
0.1890
|
0.3450
|
0.0030
|
42
|
15
|
2.38%
|
6
|
0.95%
|
22
|
3.49%
|
0.0660
|
0.8880
|
0.0090
|
43
|
20
|
3.17%
|
4
|
0.63%
|
25
|
3.96%
|
0.0030
|
1.5660
|
p < 0.001
|
44
|
19
|
3.01%
|
5
|
0.79%
|
30
|
4.75%
|
0.0090
|
0.3810
|
p < 0.001
|
Onset
The top 10 frequencies for ventral points are: 12, 18, 19, 11, 25, 17, 24, 10, 5, 20. The top 10 frequencies for dorsal points are: 40, 35, 34, 43, 44, 39, 36, 43, 32, 38.
Most pain locations at onset (as well as in peak pain) are reported periorbital. However, during onset, occipital (point 40) and nuchal (point 35) pain locations differ significantly in frequency compared to during peak pain and radiation. (Fig. 4).
Peak
The top 10 frequencies for ventral points are: 12, 18, 19, 11, 25, 17, 10, 24, 5, 20. The top 10 frequencies for dorsal points are: 34, 40, 35, 39, 33, 32, 42, 44 ,38, 43.
Pain location frequency is mainly congruent with onset (in and around the eye), except for dorsal points. Significant differences compared to radiation are reported for: (peri) orbital (5, 11, 12, 18, 19), frontal (10) and temporal (25) pain locations. (Fig. 5).
Radiation
The top 10 ventral points are: 21, 26, 24, 29, 25, 30, 12, 11, 19, 18. The top 10 dorsal points are: 35, 40, 36, 44, 34, 43, 39, 42, 38, 37.
For onset and peak pain, the most frequent pain locations are located peri-orbitally. However, for pain radiation, the most frequent pain locations are significantly different (Fig. 6). Pain is less often reported in and around the eye and is more frequently reported in the following locations: maxillary (21, 26) mandibular (27,22), temporal (29) (pre- and post-) auricular (30, 42), parietal (23), occipital ( 38), nuchal (35), wing of nose (7), regio-suprascapularis (36, 44), regio-interscapularis (37) regio-scapularis (41).
General observations on pain location
Retroorbital pain is reported by 86% (n: 545/631) of patients. Periorbital pain localization can be further discriminated into the medial (5) and lateral (19) corners of the eye as well as supra- (11, 18) and infraorbital (13, 20) regions.
Patients reported fewer locations and less peri-orbital involvement during pain radiation (n: 1418) (Fig. 7) compared to onset (n: 1893) and peak pain (n: 1949), but dorsal pain locations (points 32–44) were reported more frequently during pain radiation and onset versus peak pain.
Comparison of dorsal pain locations (32–44) for:
Peak pain (6%, n: 121/1949) vs. onset (13%, n: 253/1893), p < 0,001.
Pain radiation (22%, n: 314/1418) vs. onset (13%, n: 253/1893), p = 0,552.
Pain radiation (22%, n: 314/1418) vs. peak pain (6%, n: 121/1949), p < 0,001.