Hi there, I'm Melanie, I'm 39 and I live in Sydney, Australia.

After 2 months of pain and being angry at my neurologist, I was told by another doctor today that I could have cluster headaches. What to do? I know, I'll find a chat room! So here I am.

My headaches don't really fit the "cluster headache" bill entirely, but they are a misfit for everything else too.

I'll keep it brief (unusual for me!)

• Headaches started early November, out of the blue.
  The first one was really intense stabbing pain over my right eye which came on suddenly, then disappeared about an hour later, just as quickly
  The next day, I had about 5 attacks - coming and going suddenly, about 45 min to an hour. They were different this time - pain above the eye still, but more consistently at the back of my head. Right side at first, but now just as much the left or both at once.
  The doctor said it could be migraines, and gave me elitriptan to try - it did nothing.
  He suggested occipital neuralgia and said to try physio - if anything, that made it worse.
  Panadeine forte - nothing
  Tramadol gave me some relief.
  The neuro (who I am seeing about something else) said it was migraines - even though I have none of the nausea, light/sound sensitivity blah blah blah. He put me on propranolol
  The pattern continued, but finally after about 7 weeks, I had my first day without painkillers.
  Cool - the neuro was right, and the propranolol was working.... Until.....
  After 3 weeks, they suddenly came back.

I never bought the migraine thing anyway, I could find nothing anywhere to say you could get migraines 4-6 times a day, every day, for nearly 2 months. So when this other doctor said it was maybe CH, off I went to google....

Some of it fits, and it certainly fits better than anything else I've come across. But:

• The pain has only ever once woken me up at night
  It only gets to about a 5 or 6 on the "kip" scale
  It's often bilateral at the back of the head. (But the sinus-type pain and the pain over my eye is always the right side)
  I have never had that "hot poker" feeling in my eye. The pain is around my eye, not in it.
  I don't get a droopy eye - or not that I or anyone else has noticed!

So I'm really not sure. I'd love to get any opinions or experiences of CH that don't quite fit the bill?

I should also add that I had a neck X-ray and a contrast CT scan after the headaches started. There was nothing unusual there. I had an MRI in June after my vision started going weird, and it turned out I had Optic Neuritis, which has a very high association with multiple sclerosis. Hence the neurologist.

I'm seeing my own doctor again on Tuesday, and I'm going to ask for a referral to a different neurologist to get a second opinion.

I'm not going to guess either. There are many conditions which imitate or clone CH symptoms, some of them quite serious, so you really need to stay involved with your neuro. Is he/she a headache specialist? If not, then that would be a consideration. Having said that, we also are clear each one of us presents differently. While some of what you describe is common to CHs, some is not. CHs are almost always ipsilateral, not bilateral, even though they may switch sides from time to time. Your condition sounds complicated. Stay with it and keep us informed. God bless! lance

Well the good news is you've had the scans to rule out the really scary stuff! Not that it's a relief to find out you may have CH, a lifetime of annoyance, but it beats the heck outta the ugly thing growing in your brain, CH hurts but doesn't kill ya!

Bob make a couple of great points, it takes a while for some of us to develop a semi predictable pattern of CH. It's also possible you're one of the unfortunates with a dual diagnosis, CH and migrains, or any other number of  headache disorders. Sadly, that means patience and working with a decent headache specialist will be the order of the day.

For now, try chugging an energy drink at the start of an attack, many can abort or really reduce a hit that way. Success of this type might help the doc in his diagnosis. Try and get 02 prescribed, read the oxygen info link on the left for details. I can abort an attack in 6-8 minutes by huffing 02. That'll be a real good indicator of CH.

Good luck on the "diagnostic journey", hope you get some solid answers, and some relief real soon.

Joe

Hi there Brian, you sound like a cheeky one! No point sending beer to Qld at the moment - they need MONEY not STUFF is what we keep hearing

Thanks everyone for your input. I bought some energy drinks today to keep on hand. How long do they normally take to kick in? I get lots of "shadow" headaches (is that the term?) so it can be hard to know when the big one will hit. So far today I'm doing ok. I have my kids here for the weekend, and I hate it when they are around - I get cranky much more easily, and I feel slack for telling them to go away all the time

I think we have a neurologist or two in Sydney that specialise in headaches - I found their names when I was first cranky with my neuro for diagnosing migraines but I'll have to dig the names up again. My main purpose in seeing the GP on Tues is to get a new referral, so if I have someone in mind he'll go along with that.

I know that diagnosis has to be made by a doc, but so far none of you have told me it DOESN'T sound like CH. I'm sure you can all relate to the seemingly illogical feeling of preferring to be told that it IS CH than not knowing and still suffering. If it's there, it's there, right? Having the doc tell you that it is definitely CH doesn't change the pain. I've taken the same approach with my "maybe multiple sclerosis" situation - might as well do all the tests you can, if it's there I'd rather know now.

Anyway... I'd better get back to my kids. Have a great weekend all, and thanks for making me feel welcome

Melby29 wrote on Jan 21^st, 2011 at 8:38pm:


Certainly it could be CH, and there's a lot to suggest it is, but please understand there's a reason behind our reasoning - if it's not CH then the drugs we use will be poisoning you while another, perhaps far more serious malady goes untreated.

The good news is that once we know for sure what it is, we've a wealth of knowledge and experience in helping you manage things and continue a wonderfully fulfilling and beer-giving life without bashing the kids up too often.

Phone now on 0406 068 295 and we'll even throw in a free set of steak knives,

Brian (wet inside and out).