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14 Oct, 2010 - 7:05 am

Hi all,
I'm trying to decide if what the doctor I saw is correct or not, so i'm hoping I can get some opinions from you
I have very intense headaches behind my left eye since i can remember (i'm now 30). They usually last between 4-6 hours. I usually have about a month of 3-5 headaches per week, then a month where there is nothing at all.
The tend to always be at the same time of day, however it's usually 9am, 2pm or very occasionally 2am.

The doctor said that they dont really fit migraine because i dont get vision disturbances or feel naucious. But also that they dont seem to be cluster headaches as they are most often at night and my eye and nose don't run (although the nosrtril on the headache side does feel a bit blocked during the headache).

I have tried every possible Migraine headache medication with Cafergot and Imigran being the only ones that have any affect on the pain.(I unfortunately react badly to both drugs).

The doctor I saw had never heard of using Oxygen for Cluster Headaches and wouldn't entertain the idea of giving me a CH specific treatment option, and suggested i go to a massage therapist instead >.>

Any thought or opinions here would be greatly appreciated. The pain seems to have really increased of late and i'm really beginning not to cope with this.

Also i'm in Christchurch New Zealand, does anyone know of a good GP over here?

Thanks

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14 Oct, 2010 - 8:50 am

Hello Semaj
Firstly Semaj welcome to our site and our group of sufferers and supporters of Cluster Headaches.
You will find great information about CHs here and whilst it would be very easy for us to chime in and say YES it certainly sounds like you may have CHs to us it is not up to us to take that role. You clearly need to be seen by another doctor who understands our disease and referred on if necessary to a neurologist for further consult.
Oxygen is certainly a great and early diagnostic method as well as treatment for CHs.
Take yourself along to another medical clinic and keep pushing for more help.
Do not be put off.
Sorry can not help with GPs, however, I usually recommend that you contact your big city hospitals and ask who are the specialists in headaches and perhaps even specialise in CHs and then you could ask to be referred to them privately when you see a GP (dependent on your health cover). You do need to be proactive in your health care.
It will only be a good doctor who will be able to help you with the right treatment and medication.
In the intermim, try our home use remedies on the left. But please take care with the Red Bull. Some people find the caffeine hit a little problemsome if they have a heart problem. For me it was a bit much, but if it stops the pain--go for it. Using ice/cold is very helpful. Make sure your family/friends are in the know--they are your support base. Also keep a diary, look for any thing that might bring a head ache on so that you can avoid it eg alcohol or whatever. This is important information for your doctor/neurologist; rather than just fronting up with vague information. They will want to know when, how severe, how long etc.
We are here to support you as you work through your journey.
HeatherThis post was edited on 14/10/2010 at 8:56 am

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14 Oct, 2010 - 9:37 am

G'Day Semaj
Welcome to Clusterland, the link below should take you to the US CH site where the cluster quiz is located.
We did have another form of this quiz on this site but the owner of the US site popped a pooper valve over it & Roger had to remove it.

The quiz will give you a very good idea of if you are CH positive, but remember that there are other headache types that can mimick CH so a proper diagnosis is always esential.

When you have done the qiuz come back & let us know how you went.

http://www.clusterheadaches.com/quiz.htm
Cheers
BarryThis post was edited on 14/10/2010 at 9:38 am

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14 Oct, 2010 - 10:44 am

Hi,
I have just gone through 6 weeks of them, and strangely this time, my eye watered and nose ran only about 3 times, but was always a bit blocked on the side of the headache, which made it difficult to use the uimigran nasal sprays. In previous bouts, it would water every single attack.

So there you go, just because it doesnt make your eye water every time, doesn't mean it isnt CH.

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14 Oct, 2010 - 3:43 pm

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 ShellThis post was edited on 14/10/2010 at 3:47 pm

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