Forgive me for taking up so much space, but I hope you can take the time to read my cluster headache experience – I've maxed out on space, but I really had to get it all “out there”.

After four years of indescribable misery, I've been diagnosed with cluster headaches and found this site from a link on my absolutely excellent neurologist's blog.

What a relief to discover that I'm not alone and that there are others who can take my headaches seriously.

For years, I was in the dark, relying on my GP to prescribe an array of drugs (none of which worked), based on the mistaken belief that my headaches were sinus-related. If only I'd discovered your site earlier I'd have known straight away that it was cluster.

My pattern (one-sided headache, agony beyond belief, tearing eye, nasal drip, blocked nose and so on) follows almost perfectly many of the encounters with cluster described by others on this site.

I've been through the cluster grinder alright, but never seriously thought that CH was to blame. I always believed it was sinusitis. I even spent two weeks in hospital but once a tumour was ruled out the doctors didn't want to know.

So back to the endless cycle of cluster headaches and ineffective treatments.

Mine started when I was doing my PhD at university. I'd been working pretty hard, with a lot of teaching hours and became unable to cope. I lost so much time with the headaches that when that cluster (I didn't know it was CH, of course) ended I had to give up teaching and just concentrate on my studies. I thought it was just stress.

When a headache hit, I would go to the fridge and find anything cold to try and ease the pain. I found that eggs fitted my eye-socket perfectly and pressed them into my face so hard that I'm surprised they never smashed.

Another coping strategy was the cold facecloth clamped to my face and head, me wandering from one room to another or rocking back and forward in time to the pulses of pain.

[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.

[continues from above]

If only all headaches were like this one, my world would be a much happier place...

Anyway, apologies for such a long post, but I'm so delighted that I've found a community which really understands. I've so many questions about CH and dealing with it, but they'll come later (auto-injection is just one!).

I'm so grateful to my neurologist for directing me to this site and I'm so pleased you're all there. Reading your stories and experiences has been brilliant.

That's enough for now...I'm away to stock up on Red Bull.

Ian

Hi Ian - Welcome.
As you've already figured out, your story is a lot like many of ours. Kinda strange after feeling alone in this for so long, isn't it? I totally agree with you about the name cluster headache. The name should sound as sinister as it feels and maybe people won't be so dismissive when you tell them you have CH. You're totally right, I'd get more sympathy if I told people it was a migraine.

You said your not in cycle right now, but I'm hoping you and your neurologist have a plan for when and if the beast returns.

~Kris

And so happy you found us, great first post, absolutely no need to apologize. many of us, (myself included) cried when we found this place. A sanctuary where you don't have to explain or justify a damned thng about your headache, we know.

Now your work starts. You have much reading to do to educate yourself on CH. You will soon know far more then your doctors about ch and will have far more success "helping" them to manage your care, then you will sitting back hoping they help you.

Let us know what your current regimen is. You are episodic like me, meaning you get breaks between your cycles, chronics never get the off time.

The best approach for us episodics sems to be the 2 pronged approacg

1: a good preventative medication. This is a med you take while on cycle, that is getting headaches, to reduce the frequency and intensity of your atacks. I use lithium, other popular prevents are topomax and verapamil. many more for you to read about and discuss with your doctor.

2: a good abortive med. A headache starts, now what. Your first line abort should be oxygen. I can abort a headache, that is be completely pain free in less then 10 minutes, usually closer to 6. Pure 02, at a high flow rate, 15 lpm or better, using a non re breather mask. Read the oxygen link on the left and DEMAND  it from your doc. Other popular aborts are imitrex injectables and nasal sprays, pills tend to take too long to absorb.

Please let us know what you tried and what;s currently working. This board works because everyone shares information, we all learn from each other. So glad you found us, hope we can help! :)

Guiseppi

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

Thanks guys. Nice to be on board.

I'm just about to start medication. My neurologist gave me a letter to pass on to my doctor and I go to collect it tomorrow.

He mentioned three of the above - Verapamil, Imitrex and high-flow oxygen, but I won't know until I go to the chemist tomorrow if he's prescribed them all.

I know I'll definitely be on the first two but, from reading around the site, I'm hoping I'll get O2 as well.

He said I should start on the Verapamil straight away and take it continuously, but maybe give it a rest if I'm CH-free for six months to see what happens.

Is taking it continuously - even off-cycle - the normal procedure, or would most of you take it only on-cycle?

And, if I don't get O2, should I insist on it? Thankfully, where I live we have the National Health Service and expense does not come into the equation.

Looking forward to hearing from you all.

Ian

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

No fear, Guiseppi, I'll be back on to let you know how it's working out.

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

I'm curious why O2 is considered expensive.

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

hurts_so_good wrote on May 30^th, 2008 at 12:47pm:

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

That ain't very much. Most don't find relief from verapamil until they are at upwards of 360mg per day. Personally, it didn't work for me until I was at 480mg per day.

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

Hi Ian,
I have to be honest, my eyes welled up with "good tears" when I recently found this board.  I am glad you found your way here as well.  I hope you feel as welcome as I have.  

When I first heard about O2, I thought it was the craziest thing.  Now, it is my best line of defense when in cycle.  I know having confidence in your meds is important, but something you might unfortunately find out is what works during this cycle might not for the next.  I honestly hate having to take the meds, and having the O2 helps to drastically reduce the frequency I have to take the triptans.   :)  

Something I used to do before O2, and still do occasionally when the monster starts to bite down really hard, is to take a bag of crushed ice and apply it directly to my head/neck.  It burns a little but helps.  Just some food for thought.  Good luck.

Thomas

Welcome to clusterfamily, Ian! :)

Sanna

Hi folks, thanks for the big welcomes from you all. Looks like I've come to the right place.

Bit of clarification on the meds: I should have said that I'm on 40mg of Verapamil three times a day, bringing it up to something a little more reasonable.

That'll double when I go onto the 80mg tabs. Even so, 240mg does seem a bit miserly compared to what seems to be a much higher minimum viable dose.

I suppose, in a way, that there's a touch of the unknown as I've never actually sat down to work out what the pattern of my cycles is - so I don't know when the next lot's due.

Not knowing it was CH, there never seemed any need to see if it was a random pattern or some arcadian rhythm. I know better now, of course, so I'll start noting down when they occur in future.

The site has already given me tremendous help and encouragment and I'm delighted to be a member of the "clusterfamily". Well, not delighted because I've got CH, but...ach, sure you know what I mean.

When - or if (wishful thinking, perhaps) - the cycle returns, I'll be sure to demand something stronger if the Zomig doesn't work...

Anyway, thanks for listening.

Ian

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:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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-

DennisM1045 wrote on Jun 3^rd, 2008 at 10:26pm:

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!

Well said 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 Ian, it almost blew me away the way you said for years you thought it was your sinuses!  I just introduced myself and talked of the same thing.  I know exactly how you feel.  One thing I noticed, I was way more frustrated thinking along the sinus line.  Nothing worked and there seemed to be no hope.  But once I discovered it was CHs, at least I knew the name of the beast and learned a bit how to tame it.

I've wasted a bunch of tax dollars (I work for the US Federal Government) exploring this site, but I don't regret it.  You won't regret exploring this site either.  There's tonnes of good info here.

Good Luck and PF days to you,

Brett

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