Hello,
My name is John. I am 53 years old and have had cluster headaches since the age of 18. That's 35 years, so yeah, I have an idea of what all of you are going through.

According to the doctors, 18 is a very young age to suffer from "cluster headaches". About 20 years ago I started to refer to them as a religious experience. That's because the first time anybody saw me during a headache they always said; "Jesus Christ", or "oh my God." I'm sure you're familiar with the Jekyl & Hyde effect. Mine could be particularly grotesque. Bulging red eyes, protruding veins, snot pouring out of my nose etc…etc…

At first, when I was 12, the headaches were on the left side of my head, but when I was 18 they switched to the right side. Yeah, I know I wrote 12. The doctors wouldn't believe me and couldn't explain how they changed from one side of my head to the other. Therefore, it was easier to just say that they started at 18. But hey, who can forget their first one, right? At least I stopped vomiting by the time I was 15. That makes it actually 41 years and counting.

At the age of 30 I finally found a doctor who actually wanted to help. She too was a skeptic at first. On my first visit, "sans" headache, she got called out of the examination room. By the time she returned, the lights were turned off and I was 20 minutes into a real beauty. Turning the lights back on, without asking, she saw me and said: "Oh my God! Are you having a headache? Should I turn the lights off?" Concluding with, "we've got to do something for you."

So I was sent to the neurologist. Back then there weren't any headache specialists in New Hampshire. Following the obligatory CATSCAN, negative of course, I was introduced to the wonderful world of pharmacopeia. Because I was an air traffic controller (more on that later), we decided on the steroid, prednizone. It was really my only option. It was the only drug that I could get a medical waiver for from the F.A.A.

At the onset of a cluster outbreak each spring and fall I was prescribed an 8 week descending dosage starting at 80mgs ending at 5mgs. There was some flexibility. I could start with a higher dosage if needed, and I could take as long as necessary. This went on for 10 years. Hey, it worked, and at first I willingly ignored the side effects. It was my first relief in 18 years. But oh those side effects.

Increased appetite. Are you kidding? I would gain 25-30 pounds every time I took the drug. Every summer and winter I dieted like crazy, but I could never lose all of the weight gain. In ten years I went from 180 pounds to 260! Edginess? Sometimes I just had to leave the house. I would tell my wife back then. "It's nothing that you or the boys are doing, but I have to leave for a few hours. Otherwise I'll get angry and start shouting." Aggressiveness? Sometimes, in crowds, I would bump into people on purpose, HARD, hoping to start a fight. After eight years of that I began to read.

OMG, do you know about the potential side effects of long term prednizone usage? If not, read. It took me two years to work up enough courage to get off the drug. I'm not proud. It was working, and the headaches hurt. Eventually I went cold turkey. Do you know, even today I still occasionally get that "special" prednizone taste in my mouth.

At the age of forty I took the natural route. The doctors assured me that the headaches only "felt like" they were killing me. And that the headaches themselves were not life threatening. I figured the drugs were more dangerous then the headaches. So I started using pure oxygen. And that actually worked, sort of.

Since I was 18 the headaches have always been on my right side. I have two tells when I'm awake that warn me that a headache is coming on. The first is my right nostril. It starts to dry out. We're talking dry as a desert. With the dryness comes pain and discomfort.

The second is an indescribable taste in my mouth. When that comes, a headache is only minutes away. The discomfort progresses from my nostril to my teeth. From my teeth to my right eye. From my right eye to the right side of my face and head. Somewhere along the way, the beast awakens.

When I'm sleeping there aren't any tells. One moment I'm sleeping the next I'm wide awake. The "beast" has a sense of humor. I never wake up with a headache. That takes about a minute. Then comes the pain. It doesn't want me to miss a single second.

Over the years I have developed a few methods to delay the onset of a headache. Mostly they involve keeping my nostril from getting too dry. It sounds good, but the key word is delay. I could never stop them out right, but I could delay them enough to get through a shift at work. In 25 years as an air traffic controller, I only had to ask to be relieved twice because of a headache. I'm quite proud of that actually. Of course I did work through quite a number of ones that were survivable.

Another thing that I learned over the years was that delaying a headache was NEVER a good thing. The more I delayed the worse the eventual headache. And there always was a headache. Delaying also led to more frequent "double headers" (back to back headaches with only a few minutes in between). And the always popular, "triple headers". The only benefit from the latter was that I would eventually pass out from exhaustion. Only to be woken up for another headache, but all of you know the cycle.

Back to oxygen therapy. Since the age of 40, my headaches have decreased in both their frequency and in the duration of the cluster. If they hadn't, I'm not sure that the oxygen would have helped. And oxygen did help, albeit for a few weeks. At home, that's where my oxygen tank was, and at the first hint of trouble, I would strap on my mask and breathe pure oxygen for 10 to 20 minutes. Amazingly the symptoms would disappear. This worked for about the first half of a cluster outbreak. Eventually, it would stop working, and I would just suck it up for the next few weeks, until the headaches went away. It was better then nothing, and drug free.

By now your thinking that, "boy this guy sucks as a writer." Yes, I know that I'm going from present to past tense like a yoyo. Be patient. Now comes the might be of some help part. And why I started mixing in the past tense.

5 1/2 years ago I donated one of my kidneys. After three months of testing, screening, and interviewing we were only 2 weeks away from the operation date and BOOM, along comes a cluster. Shit, shit, shit. But, I wasn't taking any drugs, so…
I also developed a toothache.

The year before my wisdom teeth had been removed. With no warning, they had suddenly become compacted and infected. The dentist had to take out some of my molars as well. This time he decided that a root canal was needed. The transplant team determined that if I had the root canal, the operation would be delayed by at least a month. So I had the tooth removed instead, and the transplant took place as scheduled.

From my nostril, to my teeth, to my eye, to my head. That had always been the progression. And it had always been a specific tooth that hurt the most during a headache. The tooth that needed a root canal, but had been removed instead. And along with the tooth, my headaches!

I know that it sounds crazy. But I haven't had a headache since the transplant. Was it the kidney or the tooth?

I STILL GET CLUSTERS, just no headaches. My nostril still dries out, and then my teeth begin to tingle. But it never progresses to my eye. And it never progresses to the BEAST. I just don't get the headaches. It's as if the sequence has been blocked. The build up and the tells are the same. And the discomfort in my nostril becomes VERY painful. But it does not progress.

The pain and dryness in my nostril are quite bad. And unlike when I had headaches, which lasted for no more than 2 hours at a time, it lasts for hours and hours. But it is manageable. And no more pain in my teeth. Just some tingling and pressure. And for me, the pain in my teeth was bad. More then a few times I had the pliers in my mouth, but lacked the courage or conviction to follow through. In hindsight, I wish I had.

If you have the same type of symptoms and progression to your headaches, please think about what I have written. I am NOT cluster free, but I am free of the beast. If your headaches follow any type of progression, consider how you might be able to halt the progression. The steps in the progression before the break have worsened for me, but it is dramatically better than living with the monster.

What the doctors can never understand is the second worst thing about cluster headaches. The time spent living in fear of the next outbreak. We all have made accommodations in our lives to deal with the pain. But the time lost in anticipation will never be reimbursed.

I decided to take early retirement from the F.A.A. I figured that I would never get the lost years back so I should try to enjoy what I have left. For the past three years I have lived without the beast and the fear. And it is wonderful.

Living proof that every alternative must be considered before a true diagnosis can be made, and even that's subject to change without notice.

Thanks for the post, John. It's a timely reminder to us all.

Hi John,

Altogether fascinating read...fwiw...my comments....

Over many years now at ch.com... removal of tooth(teeth) as a preventive measure has been discussed endlessly....yours is the only time I have heard where it "worked". Not to say it did not, or may not have worked for YOU...just to say it has an abysmally poor success rate..and is a rather permanent gamble...

My own intro to CH is sort of similar...it always started in the tooth...and for a year ONLY the tooth. As it progressed I would visit and revisit my dentist...eventualy getting to the point where i was BEGGING him to TAKE IT OUT! A prince of a man and professional...he refused...."nothing wrong with that tooth...I won't do it" Eventually it bothered him enough that he researched and it was him...a dentist.... who correctly diagnosed cluster headache.

Re kidney donation...boy howdy do you have my admiration for that selfless act...I read stories about this and it almost always makes me cry...and wonder if I would ever have the guts/love/courage to do such? Dunno!

What I do know...or at least theorize..is that most any major "assault" on any of the body's critical
functions or parts MAY have a direct and positive OR negative effect on CH. For instance...in my case a spinal cord injury relieved me of cluster hits (not symptoms...like shadows and such which still occurred...much as you describe) for nearly a year. Several years later a "case of cancer" has done the same. I do not begin to understand what exactly is going on...and certainly "STRESS" may be a large (or ONLY) part...there is SO much we just....do .....not...know.....

PFDAN

Best

Jon