Hi Semaj,
As you are aware we are not doctors but do have a bit of experience in this area, the info that you have been given above is great and please take advantage of these very wonderful suggestions. Sometimes the best way to find help is to educate those around you even your doctor, Here are some links that may be helpful:
http://www.ojrd.com/content/3/1/20
A very helpful document for anyone who wants a well rounded information library.
http://www.ouchuk.org/html/news/Note%20for%20colleagues.pdf
A great letter for your friends and colleagues so they can understand what your going through if indeed you are suffering from CH.
http://www.chhelp.org/mhni.html
A great doc to take to your doctor to help educate him on the use of high flow Oxygen.
From your post it does seem that you have some symptoms of CH but some of your symptoms are also not usually attributed to CH.
Abstract:Cluster headache: causes and current approaches to treatment
Manjit Matharu BSc, MRCP and Peter Goadsby MD, DSc
Cluster headache (CH) is a unilateral headache that occurs in association with cranial autonomic features. It is an excruciating syndrome and one of the most painful conditions known to humans, with female patients describing each attack as being worse than childbirth. In most patients, it has a striking circannual and circadian periodicity. This disorder has a highly stereotyped clinical phenotype and responds to specific therapies, thereby underlying the importance of distinguishing it from other primary headache syndromes.
Clinical features
It is useful for both clinician and patient to standardise the terminology used in CH. A cluster headache or attack is an individual episode of pain that can last from a few minutes to some hours. A cluster bout or period refers to the duration over which recurrent cluster attacks are occurring; it usually lasts some weeks or months. A remission is the pain-free period between two cluster bouts. CH is a disorder with highly distinctive clinical features; these are dealt with under two major headings: cluster attack and cluster bout.
Cluster attack
The attacks have an abrupt onset and cessation. They are strictly unilateral, though they may alternate sides. The pain is excruciatingly severe and located mainly around the orbital and temporal regions, although any part of the head can be affected. The headache usually lasts 45-90 minutes but can range from 15 minutes to three hours. The signature feature of CH is the association with cranial autonomic symptoms, and it is extremely unusual for these not to be reported. The International Headache Society (IHS) diagnostic criteria3 require the cluster attacks to be accompanied by at least one of the following, which have to be present on the pain side: conjunctival injection, lacrimation, miosis, ptosis, eyelid oedema, rhinorrhoea, restlessness or agitation, nasal blockage and forehead or facial sweating. The autonomic features are transient, lasting only for the duration of the attack, with the exception of partial Horner’s syndrome; ptosis or miosis may rarely persist, especially after frequent attacks. Recently, there have been several descriptions of the full range of typical migrainous symptoms in significant proportions of cluster patients.2, 4 Premonitory symptoms (tiredness, yawning), associated features (nausea, vomiting, photophobia, phonophobia) and aura symptoms have all been described in relation to cluster attacks. However, in contrast to migraine, CH sufferers are usually
restless and irritable, preferring to move about and look for a movement or posture that may relieve the pain. This is such a prominent feature of the CH phenotype that it has recently been incorporated into the revised IHS diagnostic criteria.3 The cluster attack frequency varies between one every alternate day to three daily, although some have up to eight daily. The condition can have a striking circadian rhythmicity, with some patients reporting that the attacks occur at the same time each day.
Please read this whole article and maybe even print it out for your doctor:
http://www.ouchuk.org/html/news/Precriber.pdf
The main thing with any of these types of headache issues is to be correctly diagnosed as some other conditions mimic CH, I would follow Barry's advice to do the CH Quiz then follow Heathers advice to contact a good Neurologist is essential and the best place to find one is at a major hospital Neurological Science Department.
Hope this has been a little helpful. Wishing you all the best and pain free times.
Regards Shell
This post was edited on 14/10/2010 at 3:47 pm