Hi there! I just wanted to introduce myself. My name is Martyn and i am 39 years of age. I have been suffering with cluster headaches for over 12 years on a daily basis. They started of just a few every month and ended up after time on a daily basis. I have between 3 and 8 every day for the last 6 months now. They are investigating what has made them go so bad, and I now have a small swollen lump on the left hand side of my head. I never know anything could be so painful until I experienced my first attack. I don't know if its just me but they always seem to be just as bad or like they are getting worst. Anyway i have been searching the net ages for info on my condition and i am so glad i have found this site. I am currently undergoing oxygen treatment, daily injections and strong pain killers and nuthing seems to stop the really bad ones but it does help shorten the length on the attacks so the treatment must be working. If there is anyone else on this kind of treatment i would be very interested to hear how you are getting on. Thank  you for accepting my memebership ;D

You have an excellent support group; suggest you make contact with them.

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It is important that you have a good diagnostic examination to determine whether you have Cluster or any one of a number of other conditions which mimic Cluster.

If your local doctors keep using pain medications this suggests that they are not educated about Cluster. Pain meds are not effective for Cluster. Your support group can advise you on how to get care from a headache clinic if your local docs are not being helpful.

I think i made that sound like I haven't be diagnosed, yet I have been diagnosed with "CH" and they have started me on Pregabalin and sumatriptan injections (max 2 per day) also Pure Oxygen treatment when the attacks start.
You are right when you say the doctors know nothing, the doctor had wrongfully diagnosed me for 10 years before they found out what it is so he has now been removed from practice (I am not the only patient he screwed up) and now have a new doctor that is learning all this from scratch. My specialist at neurology is the one that spotted the condition. Thank you so much for the information and the links to different sites, this is the first support group i have been able to find up till now that isn't trying to con money out of you for treatments that don't exist.   :-/

Hi Martyn - welcome!  You said you now have a lump on your head on the left side.  Was this always the case or is it new?  Is it the same side as the headache?  What do the docs think the lump is?

the lump on the left had side of the face ( same side i get the attacks) is on the scar where i had my head split open (the trauma that started it all) yes the lump is new only started swelling up at the start of the year. the doctor just thinks it is swelling around the scar or damage where the head was cut (just like arthritis) she also thinks the swelling could be causing pressure and making the attacks more frequent. When i went to the specialist they wasn't really interested in the swelling to be honest and that shocked me but he did confirm his diagnosis of CH, but he did say they will be calling me back in for another CT scan just to be on the safe side. I have now been waiting since Jan for the call in. Thank you so much for the warm welcome to the group. you don't realise the change it has made in me to know there are others that are out there suffering along with me and i am not alone.

Thee has been some suggestion that head trauma can lead to Cluster, even many years after the injury. However, there has been no reliable evidence that this is, in fact, true.

so what are you saying bob? because i had my head split open i dont suffer with CH? so the specialists are all wrong then? please educate me..... :-/ what else is it then, and what can i do if i think they are wrong?

There isn't a proven link between a head injury and CH starting. However for many people there is often a head injury and CH starts later, including myself where I had a concussion and my CHs started a few weeks later.

So nobody is saying you don't have CH.

I know that mike and thank you all for such a warm welcome to the group as well. :) It is really nice to know you are not alone in all this. I have suffered for years but only recently been diagnosed so all this information is new and an awful lot to take in. Another sleepless night :'( has helped me a bit giving me a chance to read up on things. Thank you Mike for the information you sent it brill. ;D i am interested to know if anyone else has been trying "PREGABALIN" and how they got on? Thanks again! ;D

Pregabalin is in a class of meds which are being tried to treat Cluster. The results, so far, are mixed.

Since your docs are still in the process of trying to diagnose you (it appears the "cluster" label is a temporary one until more other testing is completed) it will be more difficult to find the ideal treatment for you.

Trying to be patient until the final round of testing is completed is difficult--but no real choice.