I just registered here tonight. My heart goes out to all on the forum, and I thank the creators of this site for doing this.

I'm in remission now. It's been close to two years but I had that weird little sensation above my left ear the other day, and today I've just felt a little "off." Kinda like a sinus condition in the making, but I know myself and realize the chances of that are slim. I may be alright through the night and tomorrow, and I sure hope so. Then again, who knows?

I'm a 42 YO male, who's been experiencing CH for over 20 years. Thankfully I'm not chronic. Thankfully I've never experienced a 2+ hour stint. Usually about 45 minutes to an hour.

My first episode took my breath away, as well as several years off my life. I spent the better part of 20 years as a helicopter mechanic and crewchief in the Army. My first episode was in the back of a Huey descending on approach into Stuttgart, Germany. It felt like someone rammed a spike into my left eye! I was actually clawing at the soundproofing on the bulkheads. My pilots explained it was probably a sinus pressure lock. Made sense to me. Then it came back every day. A trip to the hospital, with an ultrasound revealed a polyp in my L/H Maxillary cavity. I also noticed this went away in regular seasons. The change seasons (Fall/Spring) saw the condition returne. I soldered on. I started keeping myself away from test flights in the "left seat," fearful of an attack that would cause myself to involuntarily grab a flight control. It almost happened once.

A couple years later, back in the U.S., the evil little fart was raising its head again. They finally scraped the polyp out of my sinus cavity, with the "All better now" stamp on my forehead. I was so relieved. Then, 6 months or a year later, "Guess who!!" popped back up. I stayed shut up, and soldiered on. You all know how it feels to be at the peak of an episode with the calm, cool and collected look of a G.I. Joe doll on the outside, but your inner soul is screaming for Mommy. That was me. I loved flying . 100+ degree temps, 75% humidity, running across a flight line with a helmet on your head, bouncing up and down during another round, because a pilot forgot the logbook, and you know it would take longer to get him out of the cockpit (with coercion) than to just run in and get it yourself. You just want to get in the air to cool off. Cool air, yes. You want to grab your face and scream, but know better. You just love your job too much, and the Army doctor might want to try a frontal lobotomy next.

During a stint in Egypt, I finally broke. They grounded me. It tormented me night and day. It distracted me in the aircraft cabin to the point that I was going to assist in the destruction of life and aluminum. A Neurologist in Tel Aviv, Israel diagnosed me with Trigeminal Neuralgia. Made sense. Gave me Tegritol. Worked, believe it or not. Life was better for a while. Resumed flying again. Tormented me again 1-1/2 years later in Germany again. I shut up. Stayed shut up. Endured on the outside, wept like a child on the inside. You all know the details.

1999 and my new (and first and only and current) wife found me laying in the bed one afternoon looking like a corpse. My blood pressure was through the roof from a new attack. All through the years, every CH season, the pain got worse. She took me in to the ER and was given pills for my blood pressure. The pain went away, and so we figured high blood pressure was causing weird headaches. All better now.

They sent me back to Egypt again in 2001. I was doing quite fine. I went to the southern end of the Sinai peninsula, and BOOM!! Overnight it started again. The southern part was where I had them bad 10 years earlier. A climatic correlation? You be the judge. I found out (the hard way) that alcohol worsens it. I figured alcohol would cure anything short of complete torso amputation. We all know better. Once I left, things were all better. For over 15 years, I was thinking to myself, "Man, this trigeminal neuralgia is some weird, wicked stuff. I need to have something done for good here." Finally, I scared my wife half to death a couple years ago. I started having them at work (retired from the Army) really bad. There was no hiding it now. I'm talking about nuclear strength. The headache equivalent of red Tai curry. I was coming home with an episode in full gear. Waking up in the middle of the night with it, kicking at the door like the big bad wolf. My blood pressure was up to 150/125. Back to the doc. MRIs, Neurologists who I could barely understand. Finally one said, "this isn't Trigeminal Neuralgia. Ever heard of cluster headaches?"

I kindly explained that this isn't a "headache." "I have headaches all the time. They make me a little sick and I hate them. But THIS thing I truly FEAR! No, this is no headache. This is a nerve that's rebelling and trying to kick my butt by ramming itself against my inner soul! Headache? You smoke too much funny stuff Doc." Then he explained things. Then I researched things he told me to research. Then it all fell into place.

Here's what goes on 20 years later: Starts with a "twitchy feeling" along the left side of my head, between my ear and eye. Then a rather dull pain creeps up the L/H rear of my neck. My throat starts to burn slightly, but on the left side. Next, above my left eye starts to pulsate with a very light pain. My left jaw starts aching. Next my eye really starts rocking hard with a steady, constant pain that feels like someone's trying to insert an 8 ball , with success! All pain described in the beginning increases substantially, with the cherry on top: All the teeth on my left side feel like they're going to explode! I start tearing on the left eye, stopping up and running at the same time with the left nostril. I don't know what my eye looks like, because by now I'm mashing into it with a cold wet cloth. The cloth doesn't really do anything other than provide something that feels good in a time of complete agony. The time to reach this point is between 5 and 10 minutes, and now the party's started for the next 30 to 50 minutes. Rarely have I had one longer than this. I have a hard time getting air at this point and the walls are "closing in on me." My wife is always there for me, when I'm home. She's so scared I'm going to drop dead from a stroke. Me too. I am on blood pressure pills. In fact, one of them are Verapamil. I haven't had a full-blown episode in about 2 years, as I said earlier, but I've had a close call last week or the week before. All day, I've had that funny feeling on the left side of my head, and down the back of my neck. Maybe the Verapamil's helping to stave it off. But heres the real reason for being here tonight:

My 7 year old son (yes, I did start late) has had bad, school disrupting headaches for the past month. He's had the works done on him. My wife took him to the eye doctor yesterday because he's had serious eye problems, including 2 eye muscle surgeries. We figured the eyes were his problem. The doctor (the same one who performed his surgeries) said his eyes aren't the problem. He said, "I really think he has something called cluster headaches." Looks like dear, ol' Dad here set him up really good for life. I just got him to sleep a little while ago, holding him with a cold washcloth over his head, massaging it in, saying "Daddy knows how you feel son. Trust me, daddy's here and I understand." He has such a distressed look on his face, and I know he's hurting bad. He's so brave. I have my doubts about CH, because the pain moves across his forehead, but there's just too many other similarities to ignore. His mom will be back on the phone tomorrow with doctors, and may have to get him from school again.

I sure hope I can be there for him.

Man, you have a grown man here almost in tears reading your story.  Dude, I seriously
know where you're coming from and with having a 22 month YO son and another on the way, I fear that they NEVER get what dad has.
I feel somewhat lucky because my cycles have been short lately (2-3 weeks), however they come every 6 months.  I am glad you got properly diagnosed.  All I can say my friend is read everything you can on this site and talk to us.  You are now part of the family and we're here to support and be supported. 

I also can't thank you enough for your military service.  Here's a late Happy Veterarn's Day to you. 

I wish you and your son Pain Free days! 

Chad

MPMIII wrote on Nov 19^th, 2008 at 8:32am:


My sentiments exactly.  My heart goes out to you and your son.  You have found the right place.  Many neuros are not properly trained to deal with clusters - knowledge is your friend, and there is a wealth of information here.

All my best and wishing you and your son PFDAN,

Laurie

It kills me every time I hear about a little kid going through the crap we go through.  I think of my own son and hope he never gets these evil headaches.  He has a dad experienced at this.  And that is a blessing.  Take care of your self and your little guy.  Keep us posted as to what the doctor says.  I hope it is something else

Thanks to you all for the heartfelt welcome. Perhaps more than I deserve since I've been in remission for 2 or over years. You guys are on the front lines with the little pecker now. My time will come again to go back in the fight, but it may be a good while. I was in remission once for almost 5 years! But when it showed up, it was a more mature, wiser and vicious beast. Hope he grows feeble by the next time  

Yes, the name "MR Bubble" is a name I've used on other forums for years, so I can remember it. As if I can't remember my real name or something, which is Randy. I always hated that name...

Anyway, my reason for being here tonight is to talk about my son, and in posting on this thread I wanted to let you know my next post will be in the Children's section, titled "My Chucklehead."

Again, thanks for the support and the welcomes. You all keep rockin'.

Charlie,
Thanks for the advice. When I'm in my next cycle, I hope to remember, but we know the pain is bad enough to try anything, so I'm SURE it'll come to me then, and I'll try it. I may need some practice since I haven't attempted anything like that in many years. I used to try to get parts of my body to warm up just thinking about it. It was part of a crash-course to develop skills to bring forth everyone's hidden ability in E.S.P. I believe we all have the ability, but only a fraction are blessed, (or cursed) to be sensitive to it. But anyway, I would do these exercises to get myself able to go into a trance-like state. Part of it was getting your hands and feet to heat up. It involved total relaxation. In fact, during that phase, my eyelids would quiver uncontrollably and bring on a CH! Damned if you do, damned if you don't. But I think I can do this without going so far overboard with it.

Oh, I never could get that "out of body experience" I was hoping for. That's a good thing, as my soul would probably get hit by a car, as I was on my way to stick a wet pinky in some Major's ear at a command and staff (shaft) meeting, or something else sociably unacceptable.

Thanks again Charlie! Will remember.