Hello all you fellow suffers. A newbie to this site here, don't know what to say about myself apart from in immense pain most of the time as I have been diagnosed with CCH so no let up. Pills and oxygen don't seem to work so don't know if a lobotomy would work.......

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Glad you found us!

Would be helpful if you gave us some basic data: what kind of doc are you seeing to treat your Cluster?

Please outline the meds you are taking now and those you have used but dropped (note which is curent and past). Include dosing on each.

Do you have any specific issues/quesstions which need attention now?

So glad to have found this large family. Really thought I was alone with this demon and sometimes it felt like he was calling me. Ive been suffering with clusters for over 30 years...im 57 now....and no one seemed to know back in the 80s what to do so I just took loads of whatever pill I could get from the chemist with out much affect.  So many very painful years later after seeing a number of local GPs I started to get the most unbearable pain around my left eye and as my other half says that being a typical man  self diagnosis revealed that I had some sort of nasal problem. Luckily a new Dr at my surgery sent me to see the Ear, Nose and Throat specialist who after giving me a CT scan said there was nothing wrong with my nasal passage but he would like me to see the neurologist at the local hospital .......Great Western, Swindon. After seeing two of the junior docs I saw the big boss himself. Don't know if being rushed to hospital in the ambulance after passing out helped or not. Was on oxygen for 2hrs,had liquid morphine, liquid paracetamol and diclofenac all at the same time.   
I have had many a severe attack and passing out since then but unable to recall everything.
At the moment I am taking 1400mg of lithium carbonate at night, 200mg verapamil 3 times a day plus 10mg rizatriptan whenever I have an attack as well as paracetamol and which is around 8 to 10 times a day as well as oxygen which I have 6 cylinders. Looking back in the diary in March I did have 47 attacks in 72 hrs, that was a few days I want to forget. The lithium comes with its own problems.....I have to have weekly blood tests.
I think I have tried most of the triptans by now in one form or the other as well as high doses of steroids.....wont go on them again as they gave me really bad withdrawal symptoms.....I think I was better of with the clusters.
           Today hasn't been too bad, only two attacks. One short one but the other has been about 7hrs and 2 cylinders of oxygen.  Hope its not another trip to hospital tonight.
To all my fellow suffers I really hope one day soon someone finds so respite for us.
     In case you haven't gathered I am a cronic sufferer, I try not to let it ruin my life and my poor partner is the one who has to suffer as well watching me crawling around the floor screaming.
    Take care.

Hey Bakerman,

Check your PM Inbox...  The link is located in the upper left corner of this screen under the date.  Just click on "1 new message" it's in bold.

Take care and please keep us posted.

V/R, Batch

Hi and welcome

You really are part of the CH family now and it's one where people understand just what you go through so you're no longer alone.

Looking at the medication you're on, I'm surprised by the paracetamol as it won't touch the pain of CH plus having some every CH when you have as many as you do is highly likely to result in medication rebound headaches plus it won't be doing your liver any good at all. Have you considered skipping this and if so, what effect did it have?

Have you tried using vitamin D3? A lot of us here have found it to work well with over 80% success. I've gone almost 2.5 years pain free using it. Read up about it at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

How are you using oxygen? Have you got a high flow rate, 15lpm+, and a non-rebreather mask as both are needed to get quick aborts. You can read up about how we use it at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. This method allows me to kill off a CH in about 5 minutes.

Keep reading and ask all the questions you can think of.

Now you can understand why we ask you to post where you live. Second message gets you across the pond and changes the picture.

You have an excellent support group which you should contact. They can advise you on finding good medical care from your health care system. We understnad that you have, by law, the right to by-pass local medical providers and move to a headache specialty clinic.

We have had a steady stream of posts from GB making it clear that local docs have poor education/experience in treating complex headache disorders. So, important to get moved to a good clilnic.

See:   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE