Hi, I am new to this site and thought I would take some time to introduce myself. Having suffered from CH for about 25 years and been mistakenly treated for everthing from migraine to sinus infections, I was only diagnosed in January this year. I have been very lucky and had almost a 7 year remission. But when they returned and I took myself of to the (new) GP  she recognised CH straight away, much to my protestation. " You don't understand, this is nothing like a headache etc." She gave me Imigran told me to  go home and read about CH and come back the next day. Despite being in agony and exhausted, I can't begin to tell you how delighted I was to have a diagnosis and find that I was not alone in my suffering. I really don't know how I would have got through that 6 weeks without a GP that understood CH and was prepared to support me and offer any of the available treatments. I was refered to a neurologist who confirmed the diagnosis as "Classic CH." He said I could go another 7 years or more without an episode..... or it could come back anytime. Sorry this is a bit of a ramble but telling my story helps my sanity.

Holy cow...that was the best the neuro could do? You need a new doctor. And you need to educate yourself so you can educate your doc. Yeah, they could be gone, but probably aren't. I'd suggest the following as a checklist to get started:

1. Find a good headache specialist-this is imperative
2. Start a prednisone taper (starting around 80mg/day)
3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective.
4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask.
5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray
6. Keep a log or journal of your attacks, and learn to use the KIP scale at left

It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance

Reassuring to know that you feel so comfortable with the medical care you're receiving.

Are there any specific questions/issues where we can help you?

You last comment about medical skill in this area is yet another drop in the bucket from folks in your land...(sigh)

Number of us have tried to print out good medical literature on treating Cluster and give to your doc. Of course, it requires someone whose ego will allows them to receive--but when it works, it benefits both patient and doctor. For many years, my primary care came from a rheumatologist. He trusted me and, with some supportive medical information from me, give me whatever I asked for.  I suspect that's about as deep as we can get in trying to reform a system which doesn't educate/train well enough in med school.

We can feed you material, if interested, and if there are specific topics you wish to have, ask. For example, the PDF file, below, is a direct way to introduce the range of treatments/dosing/effectiveness of meds for our benefit.

If your doctors really knew all you say they do, they would not have let you refuse oxygen for the reason of a pain it will relieve. I find it soothing with every breath.
Good luck.