I thought it was a sinus headache (but surely nothing like I'd had before). My family Dr sent me to an ENT who did a cat scan, found I had a deviated septum but also said he thought I had cluster headaches and told me to see a Neuro. I think I was extremely lucky my ENT picked up on it! The Neuro confirmed it and started me on verapamil which broke the cycle in 2 weeks. I don't think they were that bad that 1st cycle but the next time they hit....I thought I would die! Then I found this site and found I was not alone. Tears of joy! This was in 2006 and I am now 65. So I'm an oddball all the way...female and they started late.

Hi Lani,

Welcome, i have read many stories like yours and Maz on
this site and i find it amazing that in this day and age some
doctor's are still clueless when it comes to diagnosing CH.
Mine started back in 1969. I went to see my GP who put
me in hospital for tests, and in three days i was diagnosed
as suffering from CH's.No waiting to see a neuro or given
the runaround. So what's with these so called doctor's
today.

Hoppy.

I had a concussion. Although that gave me a background headache, a few days later I started getting what were pretty intense headaches. Over the next few weeks they got stronger and stronger, evolving towards classic CH symptomes. It took a few months of doctors scratching their heads trying to work out what the problem was before I saw another neuro who figured everything out very quickly.

Looking back, those initial "really painful" headaches were actually pretty mild in CH terms, but at the time I was used to perhaps a headache every 5 years.

At first I thought it was a sinus infection and then after several doses of antibiotics and one killer prescription of antibiotics I thought I was good to go.  Thought wrong obviously.  I finally started to realize that they were coming at certain times of the day or night, the pain so intense I thought I was dying, or at least wished I would.  I went on like this for almost 4 years before I broke down at one of my son's Neuro visits of all the times lol. His doc was kind and understanding scheduled me for an MRI and Bob's your uncle...well maybe not but you get my point.  Before I broke down at the doctors office I was doing some research online when I happened across this wonderful site with information and understanding and some symptom checking  , later I realized I found my other family   

Hello, Lani-
I am a 23+ year cluster sufferer/survivor. My clusters began in the summer of 1990 at the age of 27 (male). I smoked and enjoyed an overindulgence of beer...it didn't take me long to realize that beer would trigger a headache when amidst a cluster, but I could actually get a headache over-with and then go to bed...worked like charm!!!  Typical clusters would be 3-4 months, with 3 headaches/day, sometimes I'd get a treat and have 4 , 6-7 days/week, at regular intervals (mid-day/late morning/early afternoon, evening/night, mid-night/early morning), headache durations of 3-4 hours, and generally 4-6 months of remission between clusters. I could tell what time it was, generally +/- 5 minutes with the onset of a headache...hmm, it's 10:00 am...yep, right on que!!! I have had 3 clusters in one year with shorter remissions than relapses. Somewhere around 2007, my headache duration began to shorten, a lot, (to as little as 40 min) and the cluster durations decreased from several months to several weeks, then to just a week or two. Remission would last for anywhere from 12 months to nearly 24 months. I noticed these trends immediately, and realized that I may soon be walking out the door, into brighter, more cheerful and enjoyable days, and more restful nights...and have a LIFE again!!!

I had no idea throughout most of this time what these headaches were caused from, and until 2008 when I was talking to my BIL, who has them as well, I was in the dark. When I discovered what they were, I felt pretty helpless in this whole ordeal because Meds and procedures to reduce the pain had such low success rates that I didn't even consider them as an option, but then, I was already 18 years into this ordeal, so I figured why worry about medical intervention. I only once visited a family practitioner in 1994, and we both suspected sinus infection (which I've read is a common mistake) due to the obvious reasons of runny/stuffy nose during a headache...of course, the antibiotics I was prescribed did nothing, and the doctor did not order any blood work for white blood cell count, etc, before making a diagnosis. I'm currently in a relapse, and have had 4 nightly headaches out of 6 nights,  around an hour or less. Very little for day-time headaches, except for today @ noon...was more like an elevated back-ground headache more than a true cluster, then several days ago I had one mid-day for 45 minutes, then another that afternoon very briefly for less than 5 minutes.

I have worked while having headaches for this entire time since the onset, and had to fight the total exhaustion and desire to sleep until I was home from work. I have been awakened by them at 2:00 am and just got up and went to work because I knew I wouldn't get back to sleep (I set my own work hours for the most part). I have gone to sleep at night in the middle of a cluster headache...whether or not that sleep did much good for me is yet to be determined, because I would wake up exhausted, wondering why I was even awake. Through it all, I have found there are ways I can reduce the pain, either by massage, direct pressure, or, through mind control...not so much meditation as it is tricking the mind into thinking it is not pain I'm feeling. I still don't know how I ever did that, because my relapses have been too short and far between now to make it work anymore. If I figure it out, I'll surely be back and write about it. And yes, I went through the head-banging scene, among other things, when I simply could not get control of the pain, and didn't know how I could take it any longer. In the earlier years, I could take Naproxen Sodium and get fast results, with a lot of relief, as long as I took them at the onset of a headache, and only on an empty stomach, with water...that first twinge...then after a few years, nothing...same thing with Ibuprofen/acetaminophen, only they were far less effective. Then came migraine meds like Excedrin or Migraine-X...they helped some, too, but I use little if anything for the past 8 years or so...just doesn't help much at all anymore. I can't carry oxygen equipment with me at work, which I learned recently can knock a cluster into submission for many...to have O2 at home now would be nice, sure, but I wouldn't use much now days...and so it goes.

I may be one who will have long-lived lingering effects. After what I've already been through compared to what I'm dealing with now?? Piece of cake...I'll take it with stride and go on with my life. For now, I also am extremely grateful for the relief of shorter clusters, shorter headaches and far less pronounced back-ground headaches, which, by the way, are unnoticeable to me in recent years, at least 90% of the time during a cluster relapse.

I wrote my story to offer a sliver of hope to anyone in need. My situation may be similar for others, in respect to not living with full-blown clusters for the rest of your life. If you've put some time in with it already, you may be nearing the end of the really bad stuff, and coming closer to a better quality of life...better days at work..more enjoyable time with your family...instead of going into hiding or just becoming a vegetable with every headache that cropped up. My life was a shambles for the better part of 17 or 18 years, but that is now changing. The last statistics I read (5 or 6 yrs ago) stated that once you have clusters, you will have them for 20+ years...I fell a little short of that mark with the all-out skull-exploding, eye-ball piercing, brain-grinding headaches, and am now hopefully on the downhill side of the mountain, heading to a better quality of life. Some of you may be close to reaching this stage yourself...never know to it happens. Hold your chin high and DO NOT GIVE UP. There is hope, and I'm living proof of that. My best wishes to all!!!

***Not to high-jack this thread, but I was in the middle of a short headache when I decide to just copy paste/modify this from what I submitted in my guest-book posting a few days ago (not reviewed/posted yet at this time)...carry on.