I have been a member of this Cluster family for just over 12 months (about the time I was diagnosed) and was reflecting on my journey that has got me to where I am now.
I am just finishing off an extended cycle but this time was different. Through a combination of D3 and verapamil, my hits rarely poked above a five but when they did, I had either 02 or imigran injections to knock them off quickly. It was very erratic and unpredictable but I will put that down to a very stressful last 3 months. Pain free is probably a bit of a stretch for me but thats ok.
My previous cycle was full of extreme pain and that constant fear of the next hit.

I now have a neurologist who understands clusters and doesn't do too bad a job on controlling my migraines as well. I also have a GP who suffers from clusters himself which helps to cut through a lot of explanation. Our doctors appointments tend to be an exchange of ideas and stories rather than the standard doctors appointment (I actually got him on the D3 regime) I consider myself to be extremely fortunate.

Most of what I have just listed is because of this forum. Either through reading and reading and reading or from relationship I have developed and the wise advice that has been offered. Things like 'find a headache specialist, get O2 and start the D3 now !

The result of all this is that I no longer fear clusters. Don't get me wrong, they still hurt like hell and I wish I didn't have them but they no longer control my life, they are just one aspect of it. Also life has a habit of teaching you to keep things in perspective, clusters won't kill you but there are plenty of things out there that will.

For those of you that have just joined this site and life looks pretty bleak, there is a whole arsenal of responses and information to help you battle it. It is just a matter of finding what works for you and keep an open mind to all possibilities.

I have a healthy respect of clusters, I just don't fear them anymore.

All the best

Alan

Beautifully written, from the heart, and truly speaking for so many of us here.

I no longer fear CH, either.

Thank you ch.com.

Me too. Now that I have accepted that I have CH, and will always have it, it seems easier to deal with. Most of the fear I felt was not knowing what it was or why I got it.

I still dread the beast coming of course, but now I know I can control it , it's no longer my first thought every morning. I know it's coming, so I wait, and when it comes I deal with it. I no longer live in constant fear. I do believe there are far worse things that some people have to live (or die) with.

Compassion and wisdeom add to the foundation of our growing group!   Many thanks.

Allen,

Thanks for the great post...  Well said...  Another helpful hint and tool to add to your collection of control measures for your CH should include a week's worth of a first generation antihistamine like benedryl.  25 mg four times a day can make a big difference in reducing the frequency of your CH.

Allergies result in a flood of histamines that can easily overload the vitamin D3 capacity to prevent CH.  The insidious nature of many allergies is many are sub-clinical, i.e., no obvious symptoms.  On top of that, pollen can collect anywhere inside the house even after the major pollen fall has ended.

The spring pollen bloom is an obvious source of allergens, but leaf mold spores which are heavy in the fall and winter months can hit at almost any time of the year as can mildew spores that can be with you year round.  Dust mites that inhabit pillows and mattresses are also in constant supply.

Hope this helps.  Take care and thanks again for the wonderful post.

V/R, Batch

What's the phobia word for Fear of Clusters. I hope it is something that sounds serious and impressive. Not 'clusterphobia'.....that sounds dumb and sissy.

Volcraniophobia?

maybe