Hi, I'm new to the forum and reading everything I can speed-read my way through to understand and hopefully treat and deal with these headaches the best I can. I know this is potentially a long read but I've never before had anyone to talk to about these headaches, and just recently discovering that there is such a thing as Cluster Headaches, has astonished me but given me hope.

My problem is I've had these all my adult life, my GP, hospital, and other health advisors has said it's just migraines but I've spoken to many people with migraines, ocular or otherwise and traditionally they all tend to say what I get is way beyond what they experience. That always unsettled me. For a long time I believed there were two kinds of migraines; what I refer to as a 'normal migraine' which I get from time to time across the front of my head with weird light flashes and squiggles. And the other, much worse, that I called 'hyper migraine' which don't really have associated light issues but the pain is confined in totality to the left eye and temple, with an ache somewhere in between that shoots backwards inside my head.

It's worse because the usual anti-migraine medications don't work, it's much a matter of happenstance that the pain subsides by itself or I'm in a pain-free phase anyway.

These headaches I take, I typify as a searing spike through the back of my left eye – and gets to the point where it feels it is about to rupture. It is acute, sudden, and awfully sharp – and is unlike a usual migraine where it is slightly slower with often warning 'senses' preceding the onset of migraine type pain. Each time I get these headaches, they are regular as clockwork, usually early hours in the morning, which follow regularly same day each week for weeks – sometimes I am abruptly awakened from sleep with a crucifying pain in the left side of my skull, back of my eye, and my skin is 'burning' – but, usually on a build-up to these headaches I feel restless, agitated, and feel like I'm overheating. It's the overheating sensation that really tells me I'm in for a bad hit but trying to tell anyone else makes it sound weird or ridiculous. My last GP said to just drink more water and not to watch TV before I went to bed, so it put me off telling anyone else.

I've used bags of ice and tried cold showers but nothing prevents it coming on full blast. But I do currently keep chemical cold packs beside my bed that I press against the side of my head and eye to try manage it because those things don't cool down as fast as regular ice. I've tried an assortment of painkillers, all of which are useless in my opinion, but I'm at my wits end now as I'm reaching a fairly tough patch again.

Ultimately, I'm stuck sitting in a chair through the small hours, because I cannot tolerate lying down, or I need to pace the room for the next few hours while feeling I'm going insane as if I want to claw out of my own skull. I'm a little ashamed to admit it but the pain is so intense I'm in tears the whole time, it's hard to talk or communicate that part in person but I find it utterly difficult to contain the pain because it simply increases in intensity as if there's no upper limit to the pain a person can consciously tolerate or escape.

I've been repeatedly to the eye clinic, my eyes check out fine, I've been rushed to hospital twice; once thinking I had meningitis and the second was with the worry I had a tumour or aneurism. Of course I didn't have any of that … but it was still stressful! On each occasion was told it was a migraine and when it eventually ran its course was allowed to go home. My current GP runs a practice of zero medication except in extreme cases or patients with terminal illness, so telling him what I experience a few days after the episodes is a "tough luck deal with it" scenario.

How I found out about cluster headaches was through a chance response by a physician to a post I made on my blog about how I deal with and experience ocular migraines. She said the details with which I described it was much more descriptive of a cluster headache and that I should seek out a neurologist. She added a bunch of links and that's how I found this place. I had no clue there were treatments let alone ways to abort an episode, and that I did not have to endure these headaches in silence anymore.

So please if anyone has any advice please let me know. Also if anyone is from the UK and has anything NHS related avenues of support or treatment, please I'd love to hear it.

Above everything else, thank you.

Hi DarkKnight

We're not medical doctors, so we can't give you a diagnosis. However many of your symptoms seem to be consistent with CH. However you really need to see a neurologist, preferably one who specializes in headaches, to do the required tests and to make the appropriate diagnosis.

If you do have CHs, we can give you a lot of advice and suggestions on how to deal effectively with them.

What I would do is to start a headache diary where you record information about your headaches. Note things like the date, time, pain intensity, duration and anything else you feel may be linked to them.

Let us know how you get on.

Sure sounds like CH to me too. Mike is right, a headache specialist neuro is your best bet at developing an effective treatment ptogrm. Here's your problem in a nutshell. CH is damned rare. Your typical GP gets about 4 hours total doctor school time on ALL headache types. Your garden variety neuro gets little more then that. Headache treatment is incredibly specialized. Relying on your GP to help you is like asking the 16 year old at the Lube-N-Tune to re build your tranny. There's a miniscuule chance he can pull it off...but not likely. :-/

Now the good news. Start educating yourself on these boards. There are numerous, effective treatments now available for CH. Meds to redcue the number and intensity of your attacks, Oxygen which will abort an attack in minutes. Imitrex injectables and nasal sprays that will have you pain free quickly. The days of rocking and crying for an hour straight can be put in your past. (And all of us have been there....crying and begging God to make it stop.)

For now:

Go to the medications section of this board, read the link "123 pain free days and I think I know why." It's a long link, worth the read. A simple vitamin,mineral and fish oil daily supplement that's providing a tremendous amount of relief to many.

Go buy a four pack of energy drinks. Rock Star, Monster, any containing the combo of caffiene and taurine. Chug one down at the first sign of an attack. Many can abort or really reduce an attacks intensity this way.

And get going on that referral to a headache specialist neurologist. CH is often a lifetime deal, a little time spent on getting to a specialist really pays off in your quality of life. Welcome home.

Joe

Contact your excellent support group and post the same message which you have written to us:

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I understand that you have the right to ask for a direct referral to any headache clinic you wish, by-passing the usual long referral process. (Got this info from your support group--but confirm with them.)

It's possible that you have elements of both Cluster and Migraine. This is not widely reflected in medical literature but it's a recognized disorder. Given the complexity of your situation, suggest you put your energy into finding a headache clinic.

(Your experience reinforces my impression: many of your GPs have very limted knowledge about complex headache disorders and his present stance is a notch away from malpractice, in my book.)