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"

Hi Sarah and welcome.

Tell us a bit more about what medication you have to treat your CHs, both to prevent them and to abort any that get through. We'll be able to give you some suggestions to help.

It's not easy to explain to someone who doesn't get CH or has seen someone have one at close hand.

What a lot of people have found effective is a letter someone wrote for employers and colleagues, which you can read about in this topic - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The letter can be downloaded from START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

For myself, I'm very lucky in that one of the directors of the company I work for has experienced CH. For other people I work with, I've explained a lot about CHs.

The result is that if a CH hits whilst I'm at work people know that I'll just leave whatever I'm doing, grab my oxygen and head somewhere quiet and private. I'll kill off my CH and be back working in about 10 minutes.

When I'm working away from the office, I'll keep an eye out on places where I can escape to deal with a CH, so that if one hits I know where to go.

It just takes planning, preparation and it helps a lot to have understanding colleagues and managers.

You mentioned getting CHs around life-changing decisions. Some people find that stress can bring on CHs, others like me find that stress keeps CHs away, so I get most of my CHs in the evenings or weekends.

CH seems to impact people in different ways and often morphs between cycles.

Keep reading, asking questions and you'll soon learn a lot about CHs.

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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


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

Hi sarahballoon,
I'm new myself on this board. I just posted my first post, minutes ago.

Certainly there are more organized people than me on this board to help you (see my post a new head? lol), but I can tell you in 32 some years living with the monster, only a few times did it keep me from going to work or school. I have worked days, I have worked evenings, and nights also a little.

Basically, it's not when I'm stressed that a CH crisis hits me, but mostly, on the contrary, when stress relieves out... after a big meal... when I sleep... when I finish my shift...

As for life-changing decisions... I'd say it's the same. It would hit me after the move is trough, or after any big shift in my life (and I had a few) is done. The stress brought by the upcoming change keeps me well stressed and usually away from any CH episode.

I'm not a chronic CH. they come by... clusters, last from 3 to 8 weeks every 6 to 24 months, and I actually never could link them to any particular time of the season or to any other event or... they just come, unannounced.

I think in the past 10-15 years, they have mostly came during winter, but then again, no... summer also. I don't keep track and actually try to forget all about CH when the monster leaves me alone a few months.

My neurologist relieved my anxiety about this and that everyone was telling me over the years, like avoid coffee, avoid sugar, sleep good nights... According to her, a cluster headache episode comes for unknown to science reasons... but she also says it's the easiest migraine to ease with the right medication.

I know oxygen is a good way, but I never got to that, myself.

As Guiseppi said, it's important to first diagnose precisely that you are a CH, for there are many types of migraines and to each type its very own way to fight it.

And the only way to do that I think is to see a specialist, a neurologist I guess in most cases.
:)   

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

Hello
I am new here too but have been suffering for over 10 years with what seems to be a rarity but chronic CH. Working with these have been a challenge and it really depends on when they hit and the severity for me. I've explained my condition to my boss and he required an doctors note for any exceptions that would give me time off for medical reasons. I've had to accept a migraine excuse because that is all they cold diagnose me with. Work is hard to come by these days and I will do anything to keep it. If I get an attack before work I will call in late. At work, I have to remove myself from the project until it goes away. Most of the time I will work until I just can't bear it any longer.
  I find the biggest issue in the workplace is that medical conditions that are not visible to others are seen as a rouse and not taken as seriously as say someone with a knee brace on. All you can do is educate those around you by printing out CH information and let them read about your condition. Hang in there.