I have had clusters for 14 years and was properly diagnosed about 5 years ago.  When I was first diagnosed I tried several meds and found that Verapamil was what worked for me.  Started at 240mg and that's all it would take.  I would be fine med free for a few months and then the clusters would be back.  The last cluster I was in I started at 240mg and was good for a few weeks and then went to 360mg for 7 months.  I thought that I would just stay on the Verapamil and I wouldn't get the clusters anymore.  I was wrong.  In December, the clusters returned and I went up to 480mg and can't seem to get them to leave.  Today the doc prescribed me with Nortriptyline along with the 480mg.  Please help!  I need relief and not sure what else to try.

I feel for you mate, sorry you're having a shabby time. There is nothing worse than when a reliable med stops working. For my part I have found that Verapamil loses its effectiveness after prolonged usage, for me this is about 18 months of continuous use. there are two ways of addressing this that I have found effective. The first, if you are in the middle of a savage cycle and don't want to abandon your prevent, is to add Lithium carbonate to your Verapamil. This is known here as the Chronic cocktail and has been a silver bullet for many. The other option is to wean yourself off verapamil and stay off it for a while, somewhere between 2 and 4 weeks seems to work. You will notice that when you start back on the Verapamil it will be just as effective as it was previously and you'll be fine for the next 18 months. The disadvantage here is that, obviously, you are prevent free during the time that you need it most so will need a work around like O2 to get you through. FYI I think that this is a fairly common problem with chronics who take Verapamil for extended periods. You do need to consult with your doctor before doing anything though. Hope this helps.

Wayne

Consider working with a headache specialist. Complex situations call for as much knowledge/skill as you can muster.
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LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Print out the PDF file, below, and share with you doc.

I have tried oxygen several times and it didn't work for me.  Does anyone use Nortriptyline with Verapamil for a preventative?  This is what the doc prescribed and I am praying this works.  We leave for vacation next week and I really want to enjoy myself.  I got one at 1pm this afternoon and slammed a Red Bull and that worked.

When I have a period of time I CAN'T get hit...a short vacation, daughters wedding, I go on a short prednisone taper. For me pred is a 100% block from beasty. Not a med you wanna use long term as it's really hard on the system but a great short term fix to get caught back up on rest or for a vacation like you're planning.

As to upping the verapamil dosing, that requires a really close watch on your BP so oit doesn't get dangerously low. Definitely something you work with the doc on. I haven't heard opf verap with that med, usually it's verapamil and lithium, something we used to call the "chronic cocktail" used when either by itself didn't help.

Joe

bradish wrote on Mar 14^th, 2013 at 5:55pm:

Have you used it the proper way for aborting a CH attack?

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

bradish wrote on Mar 14^th, 2013 at 9:25pm:

With a non-rebreather mask? At flow rates of 25 lpm and up? Hyperventilating?

With oxygen it's a trial and error thing. For many, the best way is to start out with heavy hyper-ventilating breaths for the first few minutes...untiul the old lips are really tingling, then back off as the pain level goes down. I do the exhale, cough to completely empty the lungs, then a deep inhale, and hold for 30-45 seconds. I've also found chugging a sugar free red bull while I abort with the 02, speeds the abort and pushes the come backer attack several hours down the road. Might be worth a shot, I know Lance has posted the same breathing and red bull technique and has had good results with it.

Joe

Where do you get your oxygen? How much?  I don't have insurance and have to drive an hour an half to get oxygen.  Its quite pricey from Apria so just looking for some options.  One tank will last me 37 minutes...

Don't volunteer any information.

If they ask, you're either learning how to weld or you have a live bait tank with some expensive bait that you'd like to keep alive.

No headaches is awesome, even better on vacation too so you get to really enjoy it.

There is definitely someting to the D-3 regimen, too many people like me, have been pain free for too long, with no other changes in their lifestyle/medication regimen, for it to be coincidence. I don't think we can bang the drum loudly enough on getting EVERYONE to at least give it a shot. So happy it's working for you.

Joe