With a long history and a doc who as NO experience, I'd start looking fo a headache specialist. Even neurologists, who we would expect to be helpful, have strikingly little education/experience with Cluster.

If you can' find specific listings in your phone book, call the social workers at you local hospitals for leads.

Welcome, Sledge. Here's some tips to get you started:

1. Find a good headache specialist-this is imperative; you want the specialist who has experience in clusters.

I'm currently looking around, I've contacted some local members to see if they have any leads in this department. I have a neurologist that I've seen once, and I'm scheduled to go in for an MRI in the next month or two. (Even though I've read that most of the time, nothing shows up).

2. Start a prednisone taper (starting around 80mg/day) You don't say you tried this but a bunch of us found good relief this way while waiting for a longer term preventative to kick in.

I will have to look this up, it's not a term I'm familiar with. It appears I have a TON of reading to do. Even though I've suffered for as long as I have, it's only been a few days that I have found this site. Most reading I've done so far are from research/medical journal sites etc.

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.

My doctor had suggested a prophylactic type of medication, I'm guessing this is what you're talking about. I actually declined the prescription as I figured that due to my infrequent attacks....usually 12-18 months in between, that it was unnecessary medication to be taking. Maybe I should be rethinking this over?

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.

I've tried oxygen therapy, it didn't seem to work for me. My regulator was set for 15 litres. Maybe I should revisit this also.

5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray, it's an alternative to triptans. I use both.

I can barely watch the doctor inject me, let alone do it myself. The Maxalt RPD wafers (dissolve on tongue) that I take usually work, if I take them soon enough. My problem is I second guess myself having an attack, and wait too long before taking it....if I'm awake. The ones that are the worst are when they catch me asleep.

6. Keep a log or journal of your attacks, and learn to use the KIP scale at left. This may help to identify some triggers for you. Some are fairly common to all of us, like alcohol, but even that isn't universal.

Something I've been negligent in, although I don't seem to correlate anything I'm doing with having an attack. It seems like they hit me at regular intervals, no matter what I'm doing, what I've ate, whether I drank alcohol or not, smoking, stress, seasonal, etc. This goes beyond my current situation as well, but it can't hurt to start. I did look at the KIP scale, and really there's no difference in what I feel. The only difference is whether or not the medication kicks in and makes it bearable or it doesn't and it isn't.

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

Thanks for the advice and the support (to all, not just above poster). It means a lot to me.

A couple of sufferer recommended docs near you:

Alberta

Calgary:
Dr. Werner J. Becker
Dr. Arnolda Eloff

Edmonton:
Dr. Grant K. Campbell (PCP)
British Columbia

Vancouver:
Dr. R. Gordon Robinson
Manitoba

Winnipeg:
Dr. Doug Hobson
New Brunswick


Joe