Cluster Headaches - does anyone have them and is there a community site on here for just Headache pain please?

[micksal]

[Beckygeorge]

Hi there,

big sympathy. I suffer too and it's absolutely rotten.

There's a brilliant site called OUCH UK and the members forum is fantastic, you can ask people for advice and check you're getting the right treatment. They know more than the doctors.

If you want any advice on what to do,you can ask me (I've been under a neurologist for 4 years now and am getting some effective treatment) or ask on the site.

Best wishes

Becky

[micksal]

Hello Becky - what are your symptoms?

I have pain down only one side of my face into my eye socket cheek and teeth and on top of my head - it usually starts under my skull bone at the back and works its way up and over top of head - its bearable at this point but if left it then gets unbearable and the only thing which stops the pain is Sumatriptan tablet. Doctor is not 100% sure if its cluster or migraine but I don't feel nauseous with thank God!!! I have now had this for a whole month with only approx 7 days without any pain - its awful and scary - have to do a two week diary for doctor now then see him again

~Thanks SAL

[Beckygeorge in reply to micksal]

Hello again,

sorry for the delay in replying, was poorly with a horrible head.

Yes, always down one side of my face. Mine starts at the back too and spreads over one side. I get quite a numb face. It lasts around 50 minutes but after I feel ropey for ages after and before. The pain is horrific - you think you're going to die and it's really frightening.

At my worst, I had them five times a day for two years. this is unusual - please don't fret. People usually have them for a couple of months a year. Your doc sounds like he/she is doing the right thing with a diary to assess whether they are clusters or not. the pattern is that they last from a half hour to two hours and they can come several times a day or just once but usually around the same time (often evening/night).

They can cause mood changes too, they send you slightly crazy. I often lose my temper before a cluster.

If your doc is good, he'll refer you to a neurologist wh should be able to help. Often a combination of medication and oxygen (from a supply in your home) helps patients.

I have a treatment every couple of months called PENS therapy which helps me but only because the meds didn't work.

You need to find the right treatment for you.

I wish you lots of luck. Let me know how you are getting on and if you feel at the end of your tether, call the OUCH UK helpline as they are really good.

Best wishes

Becky

[Beckygeorge in reply to Beckygeorge]

migrainetrust.org/factsheet...

check out this factsheet

[BobJ]

Hi Micksal,

This site not a site solely for headaches however here is article on using electrical stimulation for shorter duration, less frequent cluster headaches. This on an implanted device but implantation is not necessary. Hope helps.

medfaxxinc.com/index.php?/A...

[teadrinker]

I am also a member of the National Migraine Centre forum on healthunlocked. You might find some advice on there.

I've had severe headaches & facial pain & migraines for a long time but thankfully things are going well at the moment. Headaches are an unpleasnt and weird condition that don't get taken seriously enough by most of the population. I'm sure you will find some support on here.

[Bluenose]

Hi I've got cluster headaches starts at the back of my head on my right side and works up to my ear temple to my teeth then my jaw it hurts like hell get the every 3mouths and last for 6to 8weeks I take a injection call sumatriptan. I think the doctor thinks I'm taking the piss when I describe what pain

[micksal in reply to Bluenose]

This seems exactly my systems except its the left eye - when mine travels up from under my skull up back of head i can bear the pain but once it gets near my eye if I don;t take sumatriptan tablet I want to die!!!!!! I have never experienced anything like this before and it only came on a month ago - they don't want to go away at the moment but they are less severe but doesn;t help how I feel as just had a major back operation as well so feel lousy. I have wondered though if these have started because I have been diagnosed with a Over active PARAthyroid which am waiting for operation - it seemed to coincide at same time - Doctors don't think so though - at least my doctor knows its a cluster headache as his wife gets then so theres hope for me - he has suggested oxygen also. I would suggest if your doctor doesn't take this seriously you should call 999 when you next get an attack - I ALSO find my jaw clicks before I have an attach?????

[Bluenose]

I take oxygen but it takes to long to work my doctor say yin cost the nhs a fortune for my injection he not very help full

[Beckygeorge in reply to Bluenose]

It sounds like you need to see another doctor who takes you seriously. I am really sorry. You could show him this fact sheet:

migrainetrust.org/factsheet...

this explains the pain and the symptoms for people that don't understand the pain and horror we go through.

The best thing would be for you to be referred to a neurologist who could treat you properly.

Please try to get the help you need. this is a terrible illness and ruins lives. You are entitled to the best treatment.

good luck

Becky