First time poster here.  Well, where to start.  Basically, I went to the doctors earlier this week and was diagnosed with cluster headaches.  He basically had to look it up on his I-Phone to figure it out.  Anyway, I was relieved to find he didn't think I had a brain tumor or meningitis (have a stiff neck as well...but probably due to something else)...until I looked up online at what cluster headaches were...now I'm a bit bummed.  But, after reading several websites on this topic...I'm not so sure this is what I have.  There are lots of things that sound correct, but there are some that sound not correct.  The things that sound correct are...

The headaches occured about 2 hours after I went to sleep.

They were all on the same side of the head

They were all quite painful

My right eyelid did droop while the headache was going on.

Here are some of the things that don't click as much.

The pain hasn't started under the eye.  It usually starts in the temple above the eye and moves down to the eye.

I've only had two headaches like this.  One two weeks ago Tuesday and one this past Monday.  All the websites are telling me that it has to happen at least once a day and usually lasts for weeks or even a few months.

I don't have headaches typically (take maybe a tylenol once or twice a year because of headaches)...these were the two most painful headaches I've had...but it didn't feel like an icepick going into my eye.  It did hurt like hell though.

Also, I was able to lie in bed and rub my temples which seemed more calming that pacing around.  The aleve seemed to work after about 45 minutes...either that or they didn't and that's just when the headache ended.

Just a little stumped here.  Just for the fact I have only had two of them over two weeks rather than a whole bunch of them makes me skeptical.....but then having these headaches exactly two hours waking me from a dead sleep makes me think I do.  I can't ever remember being woken up during the night because of a headache.  I don't smoke, but I do usually have a beer or two each night.  During those two weeks I had a beer every night and only had two headaches. 

Thoughts...any input would be helpful.

Thanks!

A risky diagnosis after only a few attacks. It's not unusual to not fit every bit of the criteria for CH, I'm not a pacer or a dancer, I roll on the bed with my arms wrapped around my head. Are you working with a headache specialist neurologist? GP's get about 4 hours TOTAL education on all types of headaches in doctor school. Your garden variety neuro doesn't get much more then that. There are hundreds of headache types, as well as more serious maladies that can mask themselves as common headaches.

If the option is available to you, I'd get a workup done with a headache specialist neurologist. Start a headache diary, when they start, how fast they build, how high they build how long they stay at peak, how fast they go away. Pain location, type, stabbing vs. throbbing etc. Most headache diagnosis will be in the details.

Continue your education on the board here, but do pursue a more intensive diagnosis for yourself. Hoping you don't have CH, but if you do, don't lose this website! ;)

Joe

Diagnosis came from a GP...he literally based it on looking it up on his phone.  Yes...only two headaches so far.  Hoping that's it.  If I get some more over the next few weeks I'll see if I can see a neuro.  The past two headaches came on 2 hours after I fell asleep, reached the full intensity after a few minutes.  One lasted 45 minutes and the other an hour.  I took advil for the first one and tylenol for the second one...not sure if it helped or just went away on it's own.  Haven't had any alcohol since Monday...no more attacks since...but then again there were 6 out of 7 days last week and into this where I didn't have one either ahfter having beer and or wine each night right before bed.

Yeah, be careful with alcohol, a very common trigger for CH'ers when in cycle. If the night time hits continue, try using melatonin, an OTC sleep aid, start with 9 mg about 30 minutes before bedtime. Many can avoid the wake up hits that way.

Pick up a couple of energy drinks, rock star, monster, I prefer sugar free red bull but any containing the combo of caffiene and taurine will do the trick. Chug it down at the first sign of an attack, many can abort or really reduce a hit that way.

Hoping these were isolated hits and your done. ;)

Joe

Yeah, I'm probably going to avoid the beer for another day and then see what happens if I have one.  I'll take you up on the melatonin idea.  I can't do the caffiene though...it kills my stomach.  Hoping these were just some fluke random thing.  Thanks for the replies

I thought it might be helpful to add.... my hubby sometimes get's very painful icepick type headaches, we believe them to be bloodpressure related.  I'm a ch'er and from the look on his face and his demeaner he's suffering pretty freakin bad, but they are less often then mine, and much much shorter. 

As Guisseppi said, keep educating yourself and definately see a headache doc.  You need tests and such.

In total agreement with Guiseppi here.

I would not rely on the diagnosis of a GP who had to look stuff up on an iPhone. You really do need to see a headache specialist for something like this as headaches can be pretty complex an area.

I also agree with the others that a GP that had to look it up on his phone doesn't know enough to diagnose, also ...only 2 headaches in 2 weeks does not sound like clusters at all ... neither does the ability to lie in bed during an attack. (Unless your rolling around in bed squeezing your head, putting pressure on your eye, and cursing a bit).

With only 2 headaches in 2 weeks, it's too early to diagnose anyone with clusters. They're called "Clusters" because they come in groups. Most would have at least 1 attack per day (or night) and up to 8 (Or more) in a 24 hour period.

Good Luck and I hope you don't get anymore of those painful headaches, whatever type they may be.

Ya know, I'm reaching way back here...over 30 years...to the start of my CHs. I'm pretty sure I would get one here and there at first. It was so scattershot I thought I was just having a severe allergic reaction. That's why I tried taking increasing doses of antihistamines. They did settle in and become regular and seasonal, then chronic. I don't think just because they haven't become more cluster-like that they aren't CHs, but then again like the rest I'm skeptical with a diagnosis from an i-phone. Blessings. lance

Hi. Haven't been here for some time as am chronic and Dopeymax usually prevents those little visits from the Devil. I found Monster Hitman shots knocked off the oncoming headache if I started getting an eye-flutter during the daytime. Monster stopped making this, and when I talked to them, they suggested a new product they were bringing out called Worx Energy - available only at Walgreens stores right now.

Havent had another episode since my last which was almost two weeks ago.  Thinking it was just a couple of freak really bad headaches that happended to appear 2 hours after I fell alseep.. Hoping at least.  So far so good.  Thanks for all your replies!

That's great news! Hoping it's a done deal. But as I mentuoned before, I'd bookmark this site just in case! ;)

Joe

This area of medicine is far more complex than your simple "aspirin" headache.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.