Post by Guiseppi on May 3rd, 2012 at 7:54pm
Welcome to the board Ranger. Is that neuro you're working with a headache specialist neuro? We have seen the best results from doing so. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:
1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attacks. Verapamil is the most common first line prevent, You've already tried Topomax, not at all unusual for a med to work for one and not for another. Always keep an open mind and be willing to keep trying until you find the med or combo of meds that works for you. Some have to combine lithium and verapamil together to get relief.
2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.
3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work. Many who said oxygen didn't work for them found by changing HOW they used it made it an effective abortive.
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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. I've never injected it in my head...OUCH!!! The pill form generally works too slow to be effective for CH’ers.
Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.
For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.
Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.
clusterbusters.com
For CH'ers, knowledge is your best ally, we'll help allw e can.
Joe
1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attacks. Verapamil is the most common first line prevent, You've already tried Topomax, not at all unusual for a med to work for one and not for another. Always keep an open mind and be willing to keep trying until you find the med or combo of meds that works for you. Some have to combine lithium and verapamil together to get relief.
2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.
3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work. Many who said oxygen didn't work for them found by changing HOW they used it made it an effective abortive.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or END PRINTPAGEImitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. I've never injected it in my head...OUCH!!! The pill form generally works too slow to be effective for CH’ers.
Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.
For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.
Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.
clusterbusters.com
For CH'ers, knowledge is your best ally, we'll help allw e can.
Joe