I just don't know where to begin.  I have suffered for 15 years. And like most of you, had to let my doctor know that, no I do not get migraines, I get cluster headaches.  I guess because I am a women they just assume.  Any way, I have been on Verapamil, Prednisone, Lithium, Depakote, I know I'm not spelling these right sorry.  Nothing has worked.  The only thing that has worked if Prednisone 60 or more mg.  As soon as I tapper down that is it.  Twice in my life I have gone 1 year with no headaches.  That was last year.  Since January all hell broke loose.  Now I am on Topamax.  That is not working.  The other night the Imitrex did not even work and I was praying to die.  And I Just wanted to .  I cry as I type this, because I just don't know what to do any more.  I always read everyone suggestions, I try everything that I can but the other night I just wanted to die.  And I just can't tell any one else that.  Sorry

What Potter said. Oxygen, at a flow rate to support hyper ventilation, will abort in as little as 6 minutes. Has all but eliminated imitrex use for me, and I've been dancing with the beast for 33 years.

Go to the meds section, read the post "123 pain free days and i think I know why." A vitamin/mineral/anti inflammatory regimen, all OTC stuff. Got me thru a high point in my last cycle when even oxygen became ineffective. A long read but worth the effort. It's helping a lot of people on the board.

Then go to our sister site, they use "alternative" methods to treat CH and are turning out some pretty impressive success stories.

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

Joe

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If you can remember, was the verapamil started at the time you began the pred taper, and when the pred taper was done, how much verapamil were you taking daily? 


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Pill, nasal spray, or injection?


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Long cycle, tough to only have Imitrex to use as an abortive without an effective preventative. I'd agree that the oxygen is a good abortive for CH, Imitrex use over a long time had seemed to make my attacks ramp up faster and harder-hitting.


Welcome.

Jodi wrote on Sep 3^rd, 2011 at 10:37pm:


That's a very low end for cluster prevention, especially after the pred taper wears off, however, about right for a gradual increase after a ten day pred taper.  Immediately after the pred ends can be a very hard time, but if the verapamil was tolerated ok and thereafter gradually increased to 480, some preventive effectiveness may have started.

For hard times, I've had to go to 600, 720, and 900 for short durations.  360mg/daily or so has not worked for me also many times.

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Obviously you're being sarcastic, but being on prednisone for 8 months can be not only "fun," it can be downright life-threatening.

If you can't get a doctor to prescribe O2, you need to take your treatment into your own hands and get the O2 yourself. Contact a welding supply house. Don't tell them what you'll be using it for.

Prednisone for 8 months is scary, really, really scary. That stuff is hard on your body on several levels.

Lithium has been a succesful prevent for many when verapamil didn't work or just couldn't be tolerated at higher levels. I use 1200 mg a day while on cycle, blocks 60-70% of my attacks. If i didn't tell you I was tkaing it you'd never know. At those levels it has no noticeable effects. Might be worth talking to your doc.

joe

Oh my, you are running the gamut of usual suspects for CH interventions. As previously mentioned your verapamil dose is low for effectiveness (I understand your dr won't let you go higher) so perhaps the dose levels on the other meds were too low as well? That aside, I also had tried every med you list and then some. Topamax for a year and all it got rid of was my ability to retrieve the right word when I wanted. Please do get high flow O2 even if you must do so on your own. The proper equipment, technique and flow rates are critical to its ability to abort quickly. There are other interventions available (like olanzapine and clusterbusters) that's the good news. The bad news is you are still in the trial and error please. Persist. It is your health, physical and mental, so you must take heart and take control. Blessings. lance

Oxygen is the easiest of all the abortives.  Go buy your own setup.

       Potter

check the oxygen info tab on left in yellow - I've gone the welders o2 route and as long as you don't tell them what you want it for it's not too hard to get. I did have to go to 3 different places before finding the 4th that would rent me the tank.

Joe,  Thank you so much. I can get welding o2 through work.  I work at a clock shop.  I can get it right down the road from me.  I thought there was a difference.  Thank you so very much.