It is far from uncommon for it to take several years and several neurologists before getting a definitive and correct diagnosis of CH.
I'd ask your GP about having both oxygen and zolmitriptan. You can use oxygen as often as you like, so great for when at night when you say you get most of your CHs, then using the zolmitriptan for when out and about during the day when it isn't as easy to lug oxygen around. It is also better to have multiple methods of aborting CHs available so that if one fails, runs out, etc. then you can still abort a CH.
Having both migraine and CH will complicate things as far as finding an effective preventive. Propanolol works pretty well for migraines but it isn't a mainstream CH preventive and it obviously has limited preventive functionality for you since you're already taking it at a high dose and still getting CHs, although you don't know how many you might be getting if you didn't take it.
Topiramate (Topomax) has a mixed following here, with some doing well on it and others either finding it didn't work well or the cognitive effects were too significant (it is often called dopeymax).
For candesartan I found very limited data via Google Scholar (Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
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) with a recent trial finding that although it gave better results than a placebo they were not statistically significant.
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Cephalalgia September 2013 vol. 33 no. 12 1026-1034 - Randomised trial on episodic cluster headache with an angiotensin II receptor blocker
Quote:Results The number of cluster headache attacks (primary efficacy variable) during the three-week treatment period was reduced from 14.3 ± 9.2 attacks in week 1 to 5.6 ± 7.0 attacks in week 3 (−61%) in the candesartan group and from 16.8 ± 14.1 attacks in week 1 to 10.5 ± 11.3 attacks in week 3 (−38%) in the placebo group. The difference between the candesartan and placebo group was not significant with the pre-planned non-parametric ranking test, but a post-hoc exact Poisson test, which takes into account the temporal properties of the data, revealed a significant result (p < 0.0001).
Conclusions This was a negative trial. Post-hoc statistics suitable to describe the temporal changes in cluster headache indicate that conduction of future larger studies may be justified.
Searching on the forums here the only mention of candesartan is from people quoting scientific papers, with no reports of people using it.
For migraine prevention there are multiple results, e.g. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
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, where trials have indicated a positive result.
Was there any reason given as to why you can't use two different preventives, one that works well for migraine, e.g. propanolol, and one that works well for CH, e.g. verapamil?
I'd also strongly consider using vitamin D3 as a CH preventive. It has positive results for over 80% of people who have tried it here and I've gone over 2 years CH pain free using it. Although it doesn't help with my migraines given a choice of CH and migraines or just migraines I'm more than happy to not have the CHs.
Botox has some positive results in migraine prevention, with at least one person here finding that it helped them, however scientific results from trials with CH show little in the way of positive results:
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Treatment of headache with botulinum toxin A—a review according to evidence-based medicine criteria - Cephalalgia Volume 22, Issue 9, pages 699–710, November 2002
Quote:The aim of this review is to evaluate the studies available from reference systems and published congress contributions on the prophylactic treatment of idiopathic and cervicogenic headache with botulinum toxin A, and to classify these studies according to evidence-based medicine (EBM) criteria. The studies were analysed with respect to the study design, the number of patients enrolled, the efficacy parameters, and the significance of results. We used the following classification of EBM. I: randomized, controlled study with sufficient number of patients; II: well-designed, controlled study (or randomized, controlled study with insufficient number of patients, no exact diagnosis, missing data of botulinum toxin A dose); III: well-designed, descriptive study; IV: case reports, opinions of experts. For tension-type headache, two studies were found with negative evidence of I with respect to the primary endpoint. There are about as many positive as negative studies with evidence of II or III. For the therapy of migraine, one study with both negative and positive evidence of I, one in part positive study of II, and three positive studies classified as III are available. Two studies on cervicogenic headache with evidence of II and III are contradictory. In addition, we found several positive case reports. For patients with cluster headache, there are positive and negative case reports. We found one positive case report for the treatment of chronic paroxysmal hemicrania. As a result of this analysis, we consider no sufficient positive evidence for a general treatment of idiopathic and cervicogenic headaches with botulinum toxin A to date. Further studies are needed for a definite evaluation of subgroups with benefit from such treatment.
Working out the motives of your headache specialist is not simple as they will have a fully detailed medical history, test results plus training and experience that we simply do not have. They are the experts at the medical side, we're just experts about what we've found works for us.
It is possible that they are trying out new, exciting options, however if I was you, especially with your exams just around the corner, I'd be looking for things that are tried and tested with positive results. Then perhaps later trying out other options.
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Surviving life with CH (Read 2907 times)
