Hey everyone, I just made my account today and haven't even had the chance to browse the forum, so I don't know how typical -- or atypical -- my story will be. I thought I would just give a brief background of my experiences with cluster headaches.

Three years ago, while I was a junior in college, I had a week-long spell of the most excruciating headaches around Thanksgiving. Since I didn't know what they were, I was deeply shaken, thinking I had a brain tumor or an aneurysm or whatever. But, they disappeared as quickly as they appeared and, until two weeks ago, they were a distant memory.

That changed two weeks ago, when I woke up at 2:00 AM feeling like the right side of my face -- especially my upper jaw, and behind and above my eye -- was in a vice-grip of doom. I jumped out of bed and my girlfriend too woke up as I staggered around the apartment, desperately searching for medicine. Soon after, I was clutching my phone, on the verge of calling an ambulance.

Since then, I've had 1-3 of these headaches a day, the most predictable being the 2:00 AM one. It's driving me nuts and I'm praying they will subside after a relatively short time period -- just like what happened three years ago -- but I'm not much of an optimist. One of my biggest fears is that I'll be starting a new job in January, as well as law school in the fall, so I wouldn't want to contend with a bunch of work in this condition. The past two weeks I've been on vacation, so it hasn't disrupted my professional or academic life.

Anyway, I found out about these headaches through some online research a few days ago. My symptoms match exactly. It's not much consolation knowing they are classic cluster headaches, but at least I can have some comfort knowing others are out there like me and that I'm not dying.

Hope I can help out here and just letting you all know that there's one more standing in solidarity with you!

Have you seen a headache specialist?

              Potter

Potter is right. Sudden onset head pain is never to be taken lightly. Your symptoms do sound very CH like, but there are so many types of headaches, a med for one is useless for another, and of course a small percentage of people have pain which can mask a more sinister ailment.

Your best bet is a Headache Specialist Neurologist. It's your best chance at an accurate diagnosis and an effective treatment regimen. Be prepared, if it is CH, very few doctors are up to date on treatment. Once everything else has been eliminated, and you have a confirmed CH diagnosis, the real education begins!  For the time being....

When an attack starts, chug an energy drink, I prefer sugar free Red Bull, but any containing caffeine and taurine will work. Many can abort or reduce an attack that way. Strong coffee helps too in a pinch.

Melatonin is an OTC sleep aid available at health and vitamin stores. Read the label carefully and make sure it says it contains pure melatonin. Take 9 mg 30 minutes before bedtime. Many can avoid the night time hits this way. May have to adjust dosing up or down, give it several days before you give up on it.

Avoid alcohol while on cycle, a very common trigger, also marijuana, a vaso-dialator, can trigger mega hits while on cycle.

Good luck on the diagnostic journey, it can be long and at times frustrating, but if it is CH, it lasts your whole life. A little time and effort put in now can pay big dividends over a life span! ;)

Joe

As important as it is to get diagnosed by a headache specialist (NOT a run of the mill neurologist - they know nothing and only do harm), the typical headache specialist makes you wait months for an appointment.  :( Yes doctors are complete a-holes.  >:(

Soooo you're self diagnosed like I was for years before getting an official MD diagnosis. Well meantime while you await your official diagnosis and you have this job and school immediately looming, some people in this type of situation will try to get a reliable diagnosis from a GP even though odds are slim, and try to get an O2 prescription, or just bypass the doc and get O2 without prescription from a welding supply place and administer it as outlined at the oxygen info link to the left.

You see, if you do indeed have CH, O2 can abort the attacks very effectively. Also, in a pinch - if you live in a cold area - going outside and deeply breathing freezing cold air through the nose can abort an attack for some of us some of the time if caught at onset, or if you're not in a cold area, putting your nose up to the blasting car air conditioner vent can do the same thing.

As you continue to research CH, you'll likely come across mention of "busting". Here's aNewsweek article that's a good synopsis of how some are knocking out their CH cycles:
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(it would be irresponsible for me to suggest you consider this approach until you get that pesky dx).

Could be you'll get lucky.  My first diagnosis at age sixteen was by a very perceptive GP. 

Of course, at that time, there were no truly effective treatments.  Nevertheless...   :-/

Best,

George

You've been given great advice. The only thing I would add is keep a headache diary (time, place, precursors that sort of thing) and bring it with you to your appointment. There are ways to deal with this, and while life is changed, it is definitely not ended. God bless. lance

[smiley=headbanger.gif]   TRY not to panic and stress your self out. life is managable if you have Cluster headaches and you can go to school and work or do what you want BUT you will have to alter you life style to some degree in order to make thing easier on yourself. I mean avoid triggers when you discover what they may be, learn as much as you can about them, books, this site, and seek out a good dr, do not settle for one that has very little experience with Cluster Headaches. Good luck!

First thing First. HEADACHE SPECIALIST you need to make sure what your dealing with.

Don't be a one and done. You gotta come back for advice.

            Potter

Hey thanks for the quick and meaningful responses! I have an appointment on Wednesday with a GP. Oddly enough, when I called my parents today to tell them about these headache plights, I discovered on my Mom's side headaches are endemic (mostly migraine, but I doubt it's total coincidence that I have ended up with clusters). My aunt on my mom's side has all sorts of headache woes and her husband -- my uncle -- is also GP, so when I talked to him today he was pretty familiar with what I was talking about. But, as at least one of you mentioned, that doesn't translate into being a guru of how to tackle the problem.

I realize the danger of self-diagnosing, but the match between the "classic" cluster symptoms and my own make it probably 99.9 percent sure I have it. Wednesday will tell for sure though...

Thanks for all the tips otherwise. I've already been forced to recognize some of these -- like not drinking alcohol (that triggered two before I quit my otherwise pretty regular habit), and getting as much cold, winter air as possible. I've been more uncertain as to whether over the counter drugs are doing me any good; sometimes they seem to, sometimes not.

The biggest thing that worries me now it the longer-term prospects. If I had a magic eight ball that could tell me "you'll be OK in a week and you'll have another remission for this many months or years", it would be a lot easier to just bite the bullet in the meantime. But, with the uncertainty of it all -- compounded by the fact I'll have a lot more stresses inevitably coming up, like school and a job -- makes it especially treacherous.

Yesterday, for example, I had no serious headache -- not even the "alarm clock", middle of the night one, which is one of the most annoying/painful. This morning and early afternoon I felt great too. So this made me think that I had turned the corner and was going to be OK again. Then sure enough, out of nowhere this afternoon, I was blasted with the worst one yet :-/ I'm not one for crying, but I had tears going down my face and was once again about to call the ambulance, hoping they'd just give me something to literally knock me out so I wouldn't have to feel anything.

Now...I feel quite fine. And so goes the depressing cycle...

Anyway, thanks again everyone.

Keep in mind too that the eye on the cluster side typically tears during an attack.

Just bringing this up because in my early years with CH I remember during an attack my wife saying "why are you crying??!" and I just said "because it hurts!" while thinking "hmmm I didn't know I was crying!", only to find out later that the tearing was a CH symptom.  :D

Then there's times when it hurts so damned bad you just give up and start crying. :'(

The uncertainty, unpredicatable cycles, worrying about vacation plans, etc.....those are just some of the annoying side effects of this condition. A decent treatment program helps a lot, but doesn't "cure" anything.

Sure sounds like CH to me, we worry a lot about diagnosing people on the board, even obvious cases like yours, because there are more sinister things that could be going on. Always best to have evreything checked out just to be safe! ;)

Then start educating yourself. Even when you find something that works, you always want a plan B, C and D ready, just in case. An educated CH'er hurts a lot less. :)

Joe