New here, looking for advice

06 Feb, 2015 - 8:56 am

Hi, I am 42 and I believe I have suffered cluster headaches since I was 17. Despite seeing several doctors over the years, describing my symptoms, I have only ever really been prescribed analgesics.

I have been researching and my symptoms seem classic for this type of headache:

- pain behind one eye, eye watering, blocked sinus, sometimes it radiated down the side of my face. I will have them for several days or a week but it can come and go in that time. Sometimes I wake up with it.

So I was wondering, is there a specialist in North East Victoria/Riverina region? Or Melbourne?

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22 May, 2015 - 8:58 pm

Christina Sun-Edelsten at St Vincent's in Melbourne.

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25 May, 2015 - 10:44 pm

You definitely need a definitive diagnosis. One question I always ask people who have these types of symptoms with their headaches is this: "When you get one, are you able to lie perfectly still?" If the answer is yes then you probably don't have clusters. Agitation/restlessness is a hallmark symptom of cluster as the pain is so intense it is impossbile to be motionless. Whether it be rocking back and forth, rubbing your hands on your thighs or walking around, some form of inability to remain perfectly calm is universal to cluster sufferers.

You say you been given analgesics in past for your headaches. Have they ever worked? Until such time you see a specialist in your region, have your doctor prescribe a medication called indomethacin. If that lessens or gets rid of the headaches, then you are having headaches called Paroxysmal Hemicrania. The symptoms mimic those of clusters, but there are differences.

Good luck to you and please get a definitive diagnosis as soon as possible. You may be one of the "lucky" ones who responds to therapy(s) found to be effective on lessening/aborting attacks.

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26 May, 2015 - 11:16 am

Hi Bigred,
Check out the practitioners page on this website for a start. Another thing that you can try is printing out some information on CH's from this or the Headaches Australia website and taking it along with you to your GP. If they still don't take you seriously you may need to be a bit more demanding and ask for a referral to a specialist.

CH's generally only last about 90 mins but you can have a few in one day. You mention your headaches last from a few days to a week which is more typical of migranes or some other cause, in any case wise to get them checked out.

One of the best things to do to help your GP/specialist is keep an accurate diary of each headache i.e. date, time, symptoms, intensity, any medications, when you took them and did they work etc. You can use the CH Diary on this website or alternatively there is a good one on the www.nps.org.au website - search "headache diary" that you can print out.

Cheers,
Bruce

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02 Jun, 2015 - 7:14 pm

Bru said:

"Hi Bigred,
Check out the practitioners page on this website for a start. Another thing that you can try is printing out some information on CH's from this or the Headaches Australia website and taking it along with you to your GP. If they still don't take you seriously you may need to be a bit more demanding and ask for a referral to a specialist.

CH's generally only last about 90 mins but you can have a few in one day. You mention your headaches last from a few days to a week which is more typical of migranes or some other cause, in any case wise to get them checked out.

One of the best things to do to help your GP/specialist is keep an accurate diary of each headache i.e. date, time, symptoms, intensity, any medications, when you took them and did they work etc. You can use the CH Diary on this website or alternatively there is a good one on the www.nps.org.au website - search "headache diary" that you can print out.

Cheers,
Bruce"

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02 Jun, 2015 - 7:21 pm

Hey Bigred, if the pain is contained to one side of the face and it feels like your eyeball is being squeezed and poked with sharp needles the chances are that you are suffering from clusters.

My clusters start with the stiffening of the muscles in the right side of my neck and then moving up the right side of my face. It goes numb and the nose start watering and then into my eyeball..

My clusters lasts up to three hours and I get them up to three times a day for several weeks at a time.

I by chance tried imigran nasal spray and at the onset (neck stiffening) use two sprays 0f 20mg. It is no cure but it does stop the cluster from happening.

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