Hi there, I have followed the website on and off over the years. And as in some ways it offers some (weird) form of comfort to read about others experiencing the same sorts of misery I thought I’d sign up as well. I’m however new to the message board and as I didn’t find a dedicated introduction thread, I started my own to introduce myself a bit. Hope that’s ok.
I’m 33, male, living in the Netherlands, and have had episodic CH since I was about 18. It was diagnosed in 2000 by my general practitioner as I sat in his office having a attack with all the typical symptoms. In 2006 - during a particularly bad cluster - I was sent to a neurologist for further ‘study’ and discussing (the rather meagre) options for pain relieve and cluster prevention.
Since 2000, I have used the Imigran injection and nasal spray as my main weapons to counter the attacks – with variable results (and of course with a max of two per 24h, which was often not enough). Ever since the visit to the neurologist, I have used verapamil as a permanent (low doses) prophylaxis medicine. The Verapamil seems to have worked pretty good for me so far, as I have gone without a cluster for three years – with only very brief periods of the vague ‘heavy head’ signs (shadows). Remarkable, since it used to be an annual thing starting every autumn (October/November), every year, over and over again.
Unfortunately, this year it’s back. Halfway into October it started with ‘heavy head’ signs and over the last weeks the actual headaches started again, slowly increasing in number and intensity. At the moment, with two attacks per day, one around 6:00 in the morning and one at 21:00 in the evening, it is not too bad. Both attacks last up to 2 hours, depending on how and if the imigran works. I’m starting to look paler and a bit worn-out, but at least I still get sleep, can still do my work (sort of), and socialize to some extent  during the day.
Last cluster, autumn and winter 2006/2007, was the longest I’ve ever had with almost four months of heavy attacks, up to five per day. Right now I try to stay optimistic – with the thought that perhaps the verapamil will help shorten the cluster (I got the doses drastically up to 120 retard twice a day), hoping that perhaps this time it won’t be so bad, keep all fingers, toes, arms and legs crossed, and begging to the gods that make heads explode – but I’m kind of dreading the period to come.
Enduring the extreme and total pain again and again is a complete and utter – insert random curse words here.  But I mostly fear the moment I’ll have to say goodbye again to all things positive for an indefinite period of time; work, social life, love, hobbies, beers, happy thoughts, sports, making music, spontaneous trips, vacations, sex and just relaxing, while being forced to ‘welcome’ the pain, hopelessness, despair and loneliness into my head. Feelings that grow when week after week and month after month get stolen from you. After a while, all thoughts and hope on recovery and getting back to normal every-day life become totally obscured and any possible meaning of life becomes a completely absurd idea.
Thankfully, it goes away in my case. First in the form of a decreasing number of attacks per day, then a day/night without, and then, oh joy, it just stops and my head gets clear again. At least, so far it always did. And after the cluster ends, I know I’ll forget about the many extremes within no time at all. What remains are mostly vague and distant images of a nightmarish period. For a while I live the happiest weeks ever, catching up, getting back into the normal system, enjoying the stuff I’m lucky enough to do and above all like to do. And I know it could be worse… What if... Chronic... or… Not the slightest relieve from any medicine ever… Argh… But Man, am I looking forward to those future better days. Such a bloody, bloody shame I’ll have to sit it out first.
All the best!

Hi Joe,
Thanks for the reply. I didn’t write too much on all the medical processes and treatment stuff I went through so far. At the moment, we (my doctor and me) are experimenting with slowly raising the dose Verapamil. Right now the 240 is higher then I’ve ever had, and it's a bit of testing for results, side effects (there goes my clockwork-like digestion system…), blood pressure consequences (so far so good) with the goal of course to come to an optimum. But it’s interesting and somewhat reassuring to hear to what dose some people actually use it. 

For the O2, I used it in the past and will get a new supply this week. Unfortunately, it never worked that well for me. Especially during the nights, it is rather useless as the attacks are already too far advanced when I wake up. The benefit from the oxygen is mostly found in the early stage / during the first signs of the attack. During the day, or rather when I could actually use it in time, are somewhat better. However, the O2 seems to have more of a postponing effect then actually preventing/stopping the attacks.

As I try to drink water and herbal tea as much as I can I’m also having the sort of food supplements you suggest, in the form of general vitamin/mineral tablets. Drinking a lot means you lose them quicker as well. I’m interested though in what percentages of the daily suggested requirements/intake you take them. And any special reason why you take them with lemonade - quicker/better absorption with sugar?
All the best!

Ah I misunderstood. Lemonade here is basically the name used for any sorts of water with an additive, ranging from watery fruit juice to sodas. Your talking about actual LEMON-ade. With the acidic fruit, i can understand that affecting the PH levels alright  I'll have a further read in the topic, thanks!

My 9 pm appointment with the CH was an hour early today, but i'm back. As i recall i tried anywhere between 6 and 12 lpm o2 with a proper nose/mouth covering mask with breathing membrane. But I will have a further talk with my doctor, i read both here and elsewhere that some people take higher levels as well.

Energy drinks (and quadruple extra-strong esspresso, which i like more) seems to work (sometimes) indeed. I have a stash in the fridge I'll buy some melatonine tomorrow. Never tried it but had it recommended now by more people also for having better sleep in general.
Thanks and all the best

Guiseppi wrote on Nov 15^th, 2010 at 3:52pm:

You're perhaps not a techno, but you do seem to be a walking CH.com encyclopedia I read the thread on Verapamil and Taurine Caution and the one on the foodsups & PH/CH relation. Interesting stuff, i'll discuss both with my docter. Thanks!