I will keep at it....I really think the anti-inflammatory regimen is helping me....so I'll see what happens.

........."always men".   Er.. I don't think so. Another doctor who, just like mine, thinks women don't have clusters. And "almost never" doesn't mean never. It is rarer in women, but there are thousands of us.

Hi Colin, yes it makes me so mad. After my GP couldn't help me I saw a consultant at the pain clinic and he thought I had trigeminal neuralgia and treated me for that.Years of useless pills and 2 nerve blocks later I was at rock bottom and asked for surgery. I was referred to the neuro surgeon and as soon as I told him my symptoms - the droopy eyelid in particular - he said I had clusters and should see a neurologist. All these appointments were months apart and by this time five years had gone by. I was so relieved to finally have a diagnosis. So I got a referral to a neurologist and he said women don't get clusters. I was devastated to be back at square one with another round of meds that didn't work. I mean, surely he can read up on it. If I can, he can. There are better doctors than him who KNOW women DO have clusters.

I did my own research and read every word on these boards and asked for help here. Armed with my new knowledge I went to my GP who is fortunately very open minded and was trying hard to help me. I asked for sumatriptan injections, and later oxygen and she gave me the prescriptions.

I just don't understand the mentality of my neuro. He has suggested all the other headache types and treated me for them, to no avail. I have all the symptoms of CH and the CH meds work but he still insists it's not. But he can't tell me what it is.

I don't profess to know more than a qualified doctor, but what else does he need. To be perfectly honest he's so arrogant I think he just won't back down now. He's also EXTREMELY rude.

I have an appointment with him on 2nd April - this is a follow up to my last appointment 14 months ago to find out how  indomethicin worked. 14 months for a follow up..... need I say more. Can't say I'm looking forward to it.

I am in cycle at the moment, but not more than K6 up till now, and managing well with the Suma and 02. The main problem is lack of sleep as they all come at night. Had 4 last night.
Other than that, yes all is well with me, thanks for asking. How about you?
Maz.

Hi Peter
Your neuro was watching the clock - mine actually got up and walked behind me and opened the door to see me out. I was in mid sentence and I had stuff I wanted to ask, but he almost pushed me out of the door. Perhaps he was embarassed because he was wrong and I was right.

My GP is not really ahead of the curve as you put it, but she is open to suggestion. She openly admits that I know more about the condition than she does and provided there are no contraindications she gives me what I ask for. She was also agreeable to the D3, and I've been taking it for over a year now, but sadly it hasn't worked as well as I'd hoped. However, my hits ARE milder than they used to be - K6 or less as apposed to 5-7 hits per day of K9 or 10. So maybe that can be attributed to the D3.

My GP also said this forum was a great idea, for support and to learn from others. The neuro told me not to take any notice of rubbish I found on the internet as I would be severely misled.

I also considered not turning up for my appointment, but I'm determined to stick to my guns. He cannot keep denying that my symptoms and meds point to CH. We've already gone through all the other headache types, so if he insists it's not CH, I'm going to insist that he tells me what it is.

If he comes up with any new meds to experiment with, I will try them, but I'll always keep my Suma and 02 because I know they work.

I'm so glad the D3 is working for you. If my milder hits are down to it too then I guess it's working for me too, up to a point. Either way, I'm far better off now than I was before, with consistant K9s and 10s and no meds. Keep it up.
Maz.

I find it amazing that I'm still reading posts on here,
it can't be CH's, women don't get them, when research
has proven the opposite, I have to wonder where these
dickheads come from. The same applies! 5yrs to be
diagnosed, what a joke. I remember my first attack
vividly, and going too see my GP back in 1969, straight
away he thought they could possibly be CH's, he popped
me into hospital for the normal tests, Xrays and a lumber
puncture, three days later I was diagnosed as suffering
from CH's, and sent home with Migral tablets (Ergots),
and spent the next thirty six years swallowing them down
until 2005, when Imigran hit the scene. I've been CH free
since 2012, after starting the vitamin D3 regiment.

Hoppy.