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Siegfried

Joined the CCH club !

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Hello Friends,

Yesterday I got my third consultation at the headache center in 3 years to evaluate my CH adventure up to now.

I must say this time I got a really good doctor who was very knowledgeable and  got a considerable experience with CH patients. I brought my CH calendar with me from the last year up to now and after looking at it, he immediately labeled me as chronic. So need some time to let sink that in although that wont change anything to what it already was. But at least I know now what I can expect and not expect. The very good thing is that my migraine attacks (which used to be extremely heavy) have almost disappeared.  What left of them is only a shadow of what they were in the past.

Now most of us think that CCH is hellish with constant attacks all the time but I can say in my case that it isn't all too bad. I am living my life like I want to live it with only moderate to sometimes heavier impact. Or maybe I am not asking too much from life :) , that can also be. Or also possible is that after 40 years with migraines, I am getting used to headaches because I can not imagine how life is without headaches.

Anyway, the biggest reason that makes it reasonable for me is my phenomenal response to oxygen and Zomig. I currently go through life with on average 16 days of moderate CH symptoms a month and only  ~15 5+ KIP attacks per month. I have a pattern of subsequent but very short cycles of maximum 3-4 days and Zomig can actually break them after the first day in 70 % of the cases. Oxygen wont but it brings the pain level down from unbearable to a slight discomfort. For the rest I do not take any other medication - no verapamil, no lithium etc... Only huge amounts of oxygen, around 4 Zomig pills a month and a nasal spray from time to time in case of emergency.

Unfortunately, after many trials and trying out different combinations in the past for my migraines, I do not respond to the Vit D regimen. Batch kindly offered me to see what can be done but for the moment, I want some rest and just manage it like I am now used to manage it. if it would get worse I would be happily to give it another trial.

What also greatly improves on dealing with this condition is this forum. Reading though the message board every day make me feel not being alone dealing with this and it always gives a lot of satisfaction if I can give something back to others. This is a community of very kind, knowledgeable and generous people and that is rare to find these days ! The expertise this group has for CH is phenomenal and it would be difficult to live my condition without the support of this group.

At last, I am sure that every one of us will soon or late be able to deal with this condition even we very often chasing a moving target.

Thank you all and all the best !

siegfried

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Hi Siegfried,

Being Chronic isn't as bad as it sounds, especially as it sounds like you have things mostly under control. I've been Chronic for a long time now. I'm actually unsure what it would be like to be episodic. To go months pain free, and them, WHAM! out of the blue, another cycle. At least I know a cluster attack is never all that far away. it's just something there that I deal with occasionally. 

That said, my clusters are pretty trivial these days. I'm getting 1-4 a month that last a few minutes are top out at a KIP3 most of the time. Once or twice a year I'll get a 30 minute KIP6. But, it's my chronic migraines that are my current Hell. 250 last year, and they're getting worse. 

Hang in there. Life is what happens between headaches.

MG

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