This is my first post as a cluster headache aficionado, and I'm sure you've seen so many posts like this before. From what I can remember, I've been getting these headaches since I was in my single digits. I've gotten cat scans, MRIs, been prescribed to numerous steroids, tried massage and acupuncture all to relieve even just an ounce of the pain during attack-clusters. I've never met anyone that is a sufferer, so just finding this website made me teary-eyed. I've noticed that around the time of me making life-changing decisions (ie: moving, going back to school, leaving the country) that I'll get a cluster. Does anyone else notice that?

My question is: When you get a headache and have to be somewhere (lets say, work or class) what do you do? I've had a hard time getting my co-workers to understand the severity of these attacks, so I don't know how to relay the message that they are "suicidally painful"

Welcome to the board Sarah. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis.  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 attack. Verapamil is the most common first line prevent, topomax also has a loyal following. 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. I was a cop for 30 years and on cycle I kept an E-Tank in the trunk of my cruiser. The familiar pain and tension starts, I'd pull over, start sucking 02, 10 minutes later I'm good to go again. Read this link as it must be used correctly or it will not work

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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. 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


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Check out a thread titled "Missing Work", found under the
"Cluster Specific" section. 

Several posts on this thread should give you a bit of personal insight as to how others respond to this subject.


-Gregg in Las Vegas