I've had  bad headaches since I was very little. Whether/when they were cluster headaches, I can't be sure how far back, but I definitely remember the exact 'flavour' of pain from age 7 and up, the sleepless nights, and think that these were. 

I had heard of cluster headaches before but never researched into the full range of symptoms or even imagined they were what I had. Because of my back and spinal cord problems (which I developed later in childhood) I was easily convinced by people telling me they were just tension headaches. As a result, in the last couple years, any time I saw them I told doctors how I got horrible tension headaches, and that I had a back problem and muscle spasms, etc. and given history of my spine, they were happy to take my word for it.
So they never really asked for any further symptoms or description. Which I think they should have, but that's besides the point.
Also, migraines run in the family, so I assumed that whatever I got was either tension, migraine, or some variation/hybrid involving both lol. Case closed....live with it, take drugs, go to physio, eat properly, do what I can as I go along.

But today I woke up and this time my eyes were swollen almost completely shut. And suddenly something clicked. That same feeling in my eyes had always been there before alongside the headaches to some degree, though without the noticeable swelling, but I never really thought to find out if it was linked. And if anything, assumed it was a migraine symptom. But actual swelling, this was new.
  So I did some research and was astounded to find out that cluster headaches describes everything (including the swollen eyelids, and MUCH more) that I've experienced FAR better than my previous assumptions.  As for causes, or why I'm getting them, or if it is perhaps related to my spine problems still somehow, or whatever, I will still see a doctor about. But the actual headaches themselves regardless of anything else; well,  if they aren't cluster headaches, then I dare you to find something that fits better. I sorted through so many possibilities.
  So I just want to learn more, and not just rely on seeing a doctor for this, but actually find a place where lots of information is shared regularly, and this one looks good :)

SB,

Have you taken the Cluster Quiz 3rd down in the menu at the left?

Although the members here at CH.com bring thousands of years collective experience with cluster headaches and we can share our personal experiences, we don't diagnose reported symptoms.  You need a physician for that, preferably a neurologist who specializes in headache disorders.

The journey to a diagnosis can be long for some and short for the fortunate.  Taking the right path in the beginning can save a lot of time and needless pain.  Bob and a few others will come along shortly with sound suggestions for you.

Take care and keep reading through the info tabs at the left.

V/R, Batch

Welcome to the board, Batch has given you some spot on advice. Locate a neurologist, that specializes in headaches, and start down the diagnostic path. An accurate diagnosis is critical to an effective treatment regimen. GP's get about 4 hours training...on ALL headache types, in doctor school. Garden variety neuros don't get much more. You really want to try and see a headache specialist.

If you are not already doing so, keep a headache diary. When they start, how fast they build, how high in pain level they get, how long they stay at peak pain, how fast the dissipate. Describe the pain, boring, stabbing, throbbing etc., identify any triggers, food, smells, activities, the more details the better. Record the side symptoms, the eye issue, any nasal issues, any associated pain in the head, neck and shoulders.

What you've described bears a lot of resemblance to CH, but self diagnosis in matters of the brain is a risky proposition, especially given what sounds like a somewhat complicated medical history like yours.

So take the cluster quiz on your left, and record the results, along with your headache diary and hopefully a competent headache specialist neuro, you can get on a decent treatment path. headache pain, no matter what the title, sucks. We'll help you any way we can.

Joe

When you are dealing with body systems which are so interconnected (re. functions) it  becomes difficult to sort out the interactions & consequences. What suggests Cluster may be another disorder, quite unrelated to any headache disorder, which is mimicking the Cluster symptoms.

Bottom line: essential that you work with a headache specialist on this one. It's striking how little education/experience most neurologists have in headache. Situation likely worse when you look at other specialities.
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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.

Hi Snurp, just piling on here to reiterate how important it is to see a headache specialist for proper diagnosis, NOT a garden variety neuro.

Plus your forum name is AWESOME.  8-) ;D

Thanks guys. I didn't mean I want a diagnosis from people here, I meant that I want to educate myself, which is part of the reason I'm here, and not rely solely on doctors and the short amount of time u get with them, lol....sorry if I gave that impression. A headache specialist does sound like the way I need to go, I have not seen any specialists in years, and then the focus was my spinal problems. Let alone actually seeing a headache specialist....

And yes, I've been reading all over this site, which is why I decided it looked like a good place to join.  ;)

Thanks for the idea of a headache diary, that is brilliant, I could see how that would be very useful. I was reading about cycles, and realized I know what time of year my headaches are horrid and I know certain things will almost certainly bring about the headaches during certain times of year,  but I didn't realize that cycles could be identified with these. I will definitely look outto see whether that feature is present or not. That's just getting me started :)

Bob, I'm in Canada. Do any of those resources help for searching for a doc up here? Well I can sort through myself anyway, but hello from a Canadian gal! :)


Bejeeber...I have never seen a headache specialist for anything, but I saw a neurosurgeon when I was going to sick kids hospital for the spinal stuff, who was supposed to try and figure out why I was getting the severe headaches. He spent all of 10 minutes talking about ibuprofen like it was a wonder drug, and telling me it must be migraines since that runs in my family. My mother did most of the talking and that was that. Pffft....ibuprofen....geesh if that did ANYTHING I wouldn't bother asking you for help dude.....sometimes I don't think they LISTEN

Um. I am sort of scattered right now trying to sneak in this post rapidly while I'm at work, so hopefully I'm making sense with all this rambling. Glad to see this forum isn't dead....just cuz so many times I've found forums to join for some other interests/things etc and you post and nobody replies for 5 months lolol...so this is looking really good :)

We're not dead yet...tip of the hat to Monty Python.  And this is a terrific site. Glad you're here. Wondering one thing. You said "both eyes" swell? And it sounds as if the pain is in/behind both eyes? That's a little curious and because CHs mostly tend to be ipsilateral, very worth mentioning to your headache specialist when you find one. I know about the lacrimating eye and running nose and all behind my favorite right eye target, but not both eyes. It may be not be unheard of, I just don't experience it that way. But then again, women don't get CHs either as the many fine ladies on this site will attest. Let us know how you make out. Blessings. lance

One of the more attractive traits to this site, there's ALWAYS someone home! The trials of being a woman with CH, or any head issue.....because you're a woman with a headache, you will first be diagnosed with migrains....cuz women get migrains and not CH...right Linda?? ;D...another reason we push for the headache specialists....no guarantee of a good diagnosis, but it increases the odds. You have a great attitude, keep your sense of humor, keep digging for info, stay pro-active. We'll help you any way we can.

Joe

Lance- yeah both my eyes were swelling and running but this was also the first time they have actually swelled. Unusual to start with there for me.  In the past the pain has been almost always in one eye however. Usually running at least the one, but sometimes both are watery. Ive felt droopy eyes before but never the swollen stuff til the other day.
I will get the headaches with the pain in the left side for a while, each time I get the headaches. Be good for awhile and the next time around it could be the other eye. I am going to keep a diary to see if one is more frequent than the other. There have definitely been times when both eyes hurt in a general way, like deep and into the temples and stuff but then when this stabbing jabbing strong pain hits it will be in just one over and over.  And often times I will end up with swelling in that side of my neck. The other day I just had like an oval of swelling in the back of my neck that was impossible to miss, but it was perfectly centered and really freaked me out. I have had neck problems before but actual noticeable swelling like that was also new.  Anyway. I could go on forever about stuff I notice lol this is why I need to start making a point of journalling ASAP lolol

I forgot to respond to Joe... Thankyou for your supportive post. The neurosurgeon I saw years ago diagnosed me with migraines. Good call lol
But yeah years ago..... Not a good sign I've been looking at this close enough....
I had been curious at times since when I saw my dad and grandmother during their migraines they would sit or lie around telling everyone to shuttup and keep their eyes covered and somehow manage to fall asleep after taking painkillers that.... That.... somewhat WORKED!??!  I on the other hand actually moved into a different dormitory at school for instance where I could have a room to myself because jumping up in down and kicking sh*t would often be a nightly specialty. Hiding in the bathroom from my roommate wasn't working out. I accidentally put a hole in the bathroom door on the inside lololol cheap thing.....
So I dunno. I could see how maybe I do get migraines but something else is coming into play. Anyway. Once again. Gotta write this stuff down in my journal lol

that is one of the more glaring differences between migrains and CH. Migrainers want quiet, dark places to hide, no stimulus, no movement.....CH'ers "do the dance!" And lord knows it aint the happy dance.... :-/

Joe