Hi, this is my first post.

I remember getting my first behind-the-right-eye headache when I was 12.  It was the second time I remember ever getting a headache, the first time being when I had the flu, and the very back of my head felt like I had bruised it. 

For years afterwards, I thought that two types of headaches existed.  I thought people got the back-of-the-head pain when they had the flu, and the behind-the-eye pain when they had a headache.  So when other people would say they had a headache, I didn't understand that they were not feeling what I felt.

Because of this lack of perspective about CH v. other headaches, whenever I would get a tension headache, I just always thought I was tired.  I had no idea that a tension headache was a headache.  Those don't really hurt!  They're just uncomfortable.  It was a miracle to me when I realized that Tylenol can make me feel "awake" again if I had a tension headache.  I wish the same were true for my CHs!

I remember that at age 12, the pain came back daily, and lasted between 30-60 minutes, and the cycle lasted a few weeks.  I had "headaches" again, behind the eye, when I was 16, 19 and 22. 

I NEVER thought to see a doctor for them until I was 22.  After all, no one else sees doctors for their headaches unless they had "migraines."  I didn't have auras or light sensitivity, so I knew I wasn't a migraine sufferer. 

When I was 22, in 2000, with the internet at my fingertips for the first time, I looked up my syptoms.  I searched for "behind" "eye" "extreme" "headache."  And one of the first results was a site for "cluster headaches."  It was the first time I had ever heard of the name. 

After realizing the seriousness of my condition, and that it actually HAD A NAME, I went to the doctor for the first time ever.  She said that I DIDN'T have cluster headaches, even though I was naming off all the textbook symptoms, because I was a girl, and according to her textbook, only men get CHs.  She prescribed for me these giant horse-pills of 800mg ibuprofen.  I also tried Excedrin on my own.  I'm not sure whether they actually worked for me because I can't tell if the CH aborted on its own or if it was because of the ibu and Excedrin.  Whether I take the pills, they would last between 60-90 minutes.  In retrospect, knowing what I know now, I suspect that the pills had little or no effect on me.

Even though previously I had cycles ever 3 years, I was in remission for 8 years, until 24 days ago, when the beast reared its ugly head again.  I'm 30 now.  This time I saw a doctor right away.  Again, the diagnosis did not come immediately.  She told me to just take Excedrin while she consulted with neurology.

After suffering daily for TWELVE DAYS, she finally called me back and told me to come in.  She had a diagnosis.  She said, "I believe you have either migraines or Cluster Headaches."  No sh**! I thought to myself.  Did I say that 12 days ago?

She put me on Maxalt 10mg, and verapamil.  She told me that I needed to take verapamil for 8 weeks, and that it was going to make me dizzy and constipated, but that my CHs should start going away after 4 weeks. 

After 4 weeks?!  Dizzy and constipated?  I was already on Day 17 of my cycle when she gave me the prescriptions, so I was reluctant to start the verapamil.  I still have not started on verapamil, hoping that my cycle will naturally end soon, by Day 26 or 28.  I've had 6 hits since, and the Maxalt has worked somewhat for some of them.  I'm lucky in that the most attacks I've had in a day is 2 attacks, and I've had a couple of pain-free days since the beginning of the cycle.

The pain is scaring my husband, and is making me really really really behind on work.  I'm constantly worried that I will lose my job.  I'm an attorney at a law firm, and I'm not sure how sympathetic they are to my needs.  They are not assigning me new projects, and have reassigned a couple to other attorneys.  I still have a lot of stuff to work on that have mid-August deadlines, so I'm working half-time, plugging away at them whenever I can.  After I first sent out my email to my bosses telling them about my diagnosis, no one has sat me down to talk about it.  I told them that in the past, a cycle typically lasts 2 to 3 weeks.  I suppose they are just waiting to see whether I will be able to bounce back, or whether I will become useless to them.

I am just so glad that I have a name for my pain.  Most of my friends and colleagues are internet savvy, so if they find information on Wikipedia or on this site about cluster headaches, I'm hoping that they will understand.

I will keep reading and keep posting.

Maybe if this cycle doesn't go away soon, I will have to start the Verapamil.

Reece,

I hear you and I wish you didn’t have to find us although I’m glad you did.  You’ll find that we’re all different and what works for one person might not work for you. 

From my experience I’d say get on the Verapamil ASAP.  It takes a while for that stuff to kick in, but when it does (at least for me) it extends the ramp up time and decreases the intensity and duration of a hit.  For me it’s pretty mild and I don’t see any real heavy side-effects.  I take 480mg/day.

Maxalt…. Eh, tried it, but I found that a pill isn’t so effective and I use Zomig (or imitrex) nasal spray as an abortive.  Works in around 5-10 minutes and saved my life. 

I can’t speak about O2 yet although I plan to give it a try.  Most people here say it’s the Silver Bullet and for some reason I think they know what they’re talking about.  Even though I’d say I have some control over my hits by using the Verapamil and Zomig, I’m here looking for a better way.

Now that you know what you’ve got, good luck finding your silver bullet.

PF wishes to you!

Ron

Hi and welcome home.  You've found the best source for information and support for our shared condition.

I've had a lot of success with verapamil and I'll 2nd the advice above and say get on it now.  The side effects haven't been that bad for me.  400mg is my magic number.

I use Oxygen right in the office.  People I work with don't even bat an eye when I'm futzing with my tank and regulator.  They know that ole Darth Vader will be back at the keyboard shortly.  Typically I'm only dealing with a hit for 20 minutes total.  Pain is gone 10-15 minutes after the O2 starts flowing. 

It's important that you have a high flow regulator of at least 15lpm and use a non-rebreather mask.

The other option I have for aborting attacks are Imitrex injections.  They never fail to abort a hit and work in 10 minutes or less.  Of course there are side effects to the Imitrex that make Oxygen my 1st choice.

Once you get the beast in a bottle with a preventive like verapamil you'll get your nights sleep back.  Then before you know it you'll be kicking ass at the office again.   Everyone wins.

I hope you find some PF time soon.

-Dennis-

No magic answer about when to stop the prevents. When I go 4 weeks pain free, I start down off the lithium I go from 1200 mg a day and over a period of a week drop down to 600 mg. If I don't get hit for a week i finish weaning off the lithium. If I get bit I ramp back up to 120 again. All under the advice and care of a doctor. Lithium, verapamil, prednisone, all should be monitored while going on and off of them, none should just be stopped cold turkey due to potential reactions from your body.

Guiseppi

Hi Reese,

So has any headache come back since your post from the 29th?
Hope not! 

Stick around Reese, and you'll find that most people here will not be strangers anymore in a short time. 

After all, we're all family here whom you just haven't met lol!

PF vibes from the Netherlands.