[Continues from above]

It's as though someone had removed part of my brain and replaced it with razor wire.

It was only earlier this year – during another cycle of unbearable misery – that my GP referred me to a neurologist. When I saw him recently (I had to wait a few months for the appointment) I explained the symptoms (me still thinking that it was some form of sinusitus) in great detail and he told me that it was cluster headache.

The awful thing is that a couple of years ago on a night-time trip to emergency, a doctor had mentioned cluster headaches but the term was quickly forgotten as both my GP and I still explored the sinus route.

Migraine was more or less ruled out (rightly) at the start.

The thing about cluster headache is that it sounds so innocent. And that's one of our biggest problems, because no-one takes headaches seriously. The final page of Simon Bower's brilliant letter beautifully sums up the “take a tab and go and lie down” approach that most people have to CH.

Cluster headache is almost a “cute” term for something so awful. At least migraine has a special name that gives it a special place in the headache family. Say “migraine” to people and they might say “you poor thing”, but say anything with the word “headache” in it to people and they think you're a workshy layabout looking for an excuse to get out of doing something.

Thankfully, I'm cluster-free at the moment but I know they'll be back. I've had so many false dawns in the past when the cycle has ended and I've had a few months pain-free living. Of course, I'd no idea that that was how cluster headache works because I'd no idea it was cluster headache. I never knew that they would keep coming back.

The strange thing is that even as I'm writing this I have a headache. But it's a “happy headache” because I know it's just an ordinary run-of-the-mill, bog-standard tension headache – probably brought on by the stress of realising that I'm a cluster headache-sufferer.

Hi Hurts & Welcome to Clusterville

  Like Guiseppi said, "we know" . . . and I too cried when my wife found this site for me 2/02, after 13 months of tests, CTs, MRI, non-working meds, mis/or no diagnosis, having 6-8 attacks per day, sometimes 3-5 at night . . . a real basket-case . . . afraid to sleep . . . afraid of the next one.

  This place gave me a name-for-the-pain and the info/ammo to use with my doc to finally get some control over the beast.  Verapamil worked for me as a preventative, and 02 . . . WONDERFUL 02 is my abortive.  I too can kill him in minutes if used early-on in the attack.  I have some artery blockage and high cholesterol, so cannot use triptans (like Imitrex).

  If your neuro sent you here, then he must be aware that we're a bunch of 02 "pushers" and should be expecting a request for a script for same.  Why do we "push" it so hard? . . . because it works for 70% (or more) of us to abort . . . no side effects . . . cheap, even if your insurance won't cover.   You will need a 15 lpm regulator and a non-rebreather mask (the one with the bag).  Most of us use it at 12-15 lpm . . . and you can cut it down when you feel him leaving, breathing a few more minutes til he's absolutely dead.

  You've much to read and will have many questions to ask . . . fire away.  Here, the answers/info/caring/sharing comes from folks who truly know your pain.

  Be Safe,   PFDANs

     Richard

Really Really Really push hard for the oxygen. It's cheap, no side effects and has proven so succesful for so so many people on the board.

I'm episodic, generally 8-12 week cycles with occasional weird cycles that have gone as long as 8 months. I use lithium as my prevent and only take it in cycle. After a month of no CH I start to wean down, when I get to 600 mg a day I'll know for sure if the cycle is over or not. If I start getting hit I ramp back up to 1200 mg.

Good luck with the doc let us know how it goes.

Guiseppi

Hi Hurts,

Welcome to the board! One of the GPs at my surgery didn't have a clue about using o2 so was really hesitant to prescribe it (expense apparently). I've had it for about 8 months now and in those months, I've had 2 calls checking to see if I really need it because it's so expensive apparently. It's worth the fight though!

If you can find a GP who's happy to learn from you as well as help you, you'll be rocking (I did find one!).

Welcome aboard!
Em

Here's the score on my meds.

The neurologist has put me on 40mg Verapamil daily, increasing to 80mg over a three-week period.

I've been given Zomig as an abortive. I don't think I'll push too hard for the O2 quite yet because I'm keen to find out if the meds combination works.

But don't worry - if it looks as though I need O2, I will demand it and show my GP some of the medical papers on CH which clearly indicate its role as a vital tool in the management of the condition.

By the way, I've started showing the Peter Bower letter to family and friends and once they've read it they at least have some understanding of what we go through - the line on it being as painful as childbirth is particularly telling.

Ian

Ditto what Brew said..................... Verapamil didn't do a thing for me till I got up to 360mg a day.    My GP prescribed it for me and didn't want to go over 180 till I BEGGED.  My neuro  had prescribed that much for me at one time and my GP said it was "dangerous".  Well, so is being suicidal due to CH!

Jeannie

Welcome to clusterfamily, Ian!

Sanna

Hi Ian,

You've been given some good advice so I have little to add.

You really should push for the O2.  Oxygen is my main abortive.  The stuff is unbelievable.  10 minutes and I'm pain free with no side effects.

Triptans have way more side effects and can be rough on the system over time.

Verapamil also works to block 90% of my hits.   I had to get up to 400mg before I found my theraputic dose.  You and your Dr should read this info:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

The other thing I'd like to mention is in reference to your post on fear in another thread.  I lived in fear of these attacks for years.  I finally got diagnosed and found this site almost exactly a year ago. 

You can't believe the difference it has made for me and my family.  While I still fear the pain, I don't live in fear of the pain.  Now I live my life between the hits and the hits are dealt with and put behind me quickly by the tools and techniques I learned about here.

Soon you will feel the same.  Trust me on that.  You have found your best weapon.  Knowledge!

Welcome and good luck.  Let us know how we can help.

-Dennis-

hi ian,go to ouch uk and download the part filled hoof,fill in the rest and take it to gp,all they have to do is sign it and fax it off and you should get your tanks in a couple of days,good luck stuart

Hi guys, I've been out of touch for a while - but it wasn't due to cluster headaches!

Thanks again for all the advice, particularly on the 02. I went to my doctor last week to sound him out on the Oxygen availability and he didn't seem particularly keen on prescribing it.

It's ok at the mo, because I'm not in cycle, but if I'd gone down after a succession of all-nighters my reaction might not have been so laid-back.

Stuart, I will check out that OUCH form and present that to my doctor if (I wish!) the situation arises.

And Brett, I've spent a fortune in the past four years buying every kind of nasal spray, decongestant tablet and sinus medication on the market.

I think about the only thing I haven't shoved up my nose is coke!

Identifying the real problem has been a major breakthrough, as has been finding so much support and advice on this site.

Ian