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My experience

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#1 Thu, 22/03/2018 - 15:13
SamW's picture
Last seen: 2 months 2 weeks ago
Joined: 26/02/2014 - 15:13

My experience

Yet again, nature has astounded me as the onset of spring gives rise to bright sunshine, blooming flowers and a curtain call for my latest bout of thoroughly unwelcome cluster headaches. I’m not sure how many years into this seasonal sequence I was before I started to recognise the pattern, but never the less, here I am again in the opening act, wondering what plans I’ll have to re-think over the next few weeks as this latest episode runs it’s course. There certainly won’t be any alcoholic refreshments over the next few weekends, which is painful in itself, but perhaps I was due a good detox anyway…

Although I’ve suffered for a few years now, I’ve never taken the time to really write anything down or share my experiences with anyone outside of my immediate friends and family. Whilst I’m not sure anyone will be all that interested in my story, I thought I would take some time to reflect whilst the issue is (quite literally) fresh in my head. If nothing else, it’s a welcome distraction.

I was 20 when I had my first attack of cluster headaches. At the time, I was working away from home as travelling salesman (health insurance, if you can stomach the irony). I remember it was a sunny spring afternoon around March/April and I was travelling in my car somewhere in the south of the England. Driving along in my old Ford Fiesta, I remember becoming aware of a rapidly increasing pain around my left eye and a sensation of increasing pressure in my head. Eventually, the pain became intense enough that I was forced to pull the car over in a layby, close my eyes and mutter casual expletives to myself whilst waiting for it to subside. Subside it did and 20 minutes later I was back on the road, calling my regional manager to report that I was running a little late for my next sales call, (“I think I’ve had a migraine or something, Boss!”). My very next memory is of being in the Holiday Inn Express in Southampton, just a few hours later. I don’t have any memory of checking into that hotel, or eating dinner, or what I watched on television that evening – but I will never forget the sheer and sudden agony, which woke me up in the early hours of the morning. Whilst my experience earlier that afternoon had caused me to curse mildly under my breath, this time around I was screaming out profanity at the top of my lungs. Clutching and squeezing my skull, I paced the room, doubled over, rolled on the floor, pressed my head to the cold window, jumped around on the spot – anything to try to distract myself from the fact something inside my head had clearly just exploded. Being just 20 years old, hundreds of miles away from home and never having experienced anything remotely like this before, it’s fair to say I was in a state of total panic. I remember tearing through my overnight bag, desperately looking for any painkillers I could find. I remember vomiting violently (the only time I’ve ever been sick during an attack incidentally). I remember sobbing in the corner of the room and I remember dialling 999.

Now, I can understand why calling the emergency services over “a headache” might sound utterly ridiculous. I imagine at the time I thought it was pretty ridiculous myself too. But as embarrassing and dramatic as it now sounds, the honest truth of the matter is that I thought I was going to die in that hotel room. Of course, by the time the ambulance had arrived and delivered me to Southampton General Hospital, the pain had completely dissipated and I was acutely aware of how crazy my behaviour must have seemed whilst try to ratonalise a miraculous vanishing agony to the suspicious hospital staff. If cluster headaches are little-heard of 2018, the general awareness amongst medical professionals in the mid-noughties was far less. The rest of the details of that incident are a little sketchier, but I remember being given a CT scan, a small pack of paracetamol and told to contact my GP if the pain retuned. Of course, return it did. On many occasions around that time. I remember my parent’s looks of deep concern as a writhed around, screaming and pressing my head against the cold kitchen tiles in tears. 

My early trips to the doctor’s surgery were of little help in the first instances. I was prescribed Voltorol and Co-Codamol, neither of which had any real effect, other than to make me feel sick and docile. I felt something of a hypochondriac as I made repeated calls to my local surgery and I had a really tough time trying to explain to my employers what recurring agony I was in, without sounding like a bit of a lightweight making a big fuss over a little headache. Reminiscing about these times and thinking about just how much relief and reassurance I now get from my medications, it’s actually quite difficult to imagine just how awful a period this must have been for a younger and much less well informed me. The first real breakthrough in terms of diagnosis came as I started to identify a distinct pattern with my attacks. It became apparent that the slightest drop of alcohol was almost a guarantee for an hour of misery, but even when I abstained from that small pleasure, the recurrence and regular timing of my headaches was as predictable as it was bizarre. It was only after reporting these strange observations to my GP, that I first heard the term “Cluster Headaches”.

Over the years, one of the condition’s notable annoyances has been just how difficult it is to test any particular medical solution over time. My first referral to a consultant neurologist came a week or so into my second or third bout of attacks, and by the time the appointment came around, that particular episode had passed. Whilst that was a welcome relief, it also meant that I had no immediate use for the list of suggested medications recommended to me at that time. It would be another six to twelve months before I had the chance to “test” anything out and it’s been a process of trial and error for the long term to try and find a solution which works effectively. Invariably, just when you think you might have found something which is doing the trick – the episode ends. Now in my 11th year, I feel I’m really starting to make some progress, but there’s still some way to go.

Another significant annoyance I’ve found over the past decade, has been my condition’s uncanny ability to interfere with a well-earned holiday! The first time this happened I’d just landed in Mexico for a long three week break in the sun. Woefully unprepared and hopelessly cut off from much in the way of Western medicine, what should have been a trip of a lifetime turned into a holiday nightmare and one of the worst experiences I can remember. If you think a cluster headache is bad under normal circumstances, pray that you never experience one in 40-degree heat in close proximity of a drunken Mariachi band. Needless to say, the extra I’d forked out for an all-inclusive bar had been a complete waste of money. It was only after a third trip to sunnier climates was ruined, that I started to notice the pattern. On reflection, I’m not sure how many of these episodes were due to the time I’d chosen to travel (Rome in October, Egypt in April), or if there genuinely is some effect of the sudden change of temperature, climate and/or time zone. I’ve travelled dozens of times and have only been affected on a handful of those, but for a condition notable for its predictability, I’ve found cluster headaches can sometimes be as unpredictable as the weather itself.

These days of course, I am much better prepared, and I never leave the house (let alone the country) for any extended period of time without an appropriate stockpile of medication. Better that my luggage allowance suffers than my holiday.

The final frustration, which I’m sure any sufferer will attest to, is the difficulty in trying to describe the nature of cluster headaches to friends, family, loved ones and colleagues. Even some medical professionals remain very much unaware of the nuances of the situation. Much like the first time I tried to explain things to the nurses in Southampton hospital, or my GP in those initial years,  I still feel a sense of foolishness now when I talk about an awful pain which comes back to haunt me every year or so, usually in tune with the seasons – but not always – and occasionally when I’m on holiday – or at home - or at exactly the same time of day – except the times it’s at a different time of the day… it even seems ridiculous writing it. That’s not to say people aren’t sympathetic of course, but it’s taken me a while to learn not to become irritated when people tell me I’m probably not getting enough sleep, or I must be stressed (“that can’t be helping”), or I should drink some water and try to rest. They all mean well of course, and I’m very grateful for that; but I’ve come to realise that unless someone has experienced the pain of the condition, its bizarre schedule, or the inherent nervousness of the next attack which it brings with it, they can never truly understand. Frankly, that’s a good thing - the less people who understand the better, because it’s not something I’d wish it on anyone.

So that brings me to the here and now. After more than year of being headache free, I’m five days into the latest cycle. With 11 years of experience under my belt, I feel reasonably prepared this time around. I have a war-chest full of Sumatriptan injections ready-to-hand (hugely effective at stopping an attack and my first recommendation to anyone who might be suffering and hasn’t tried them. They are truly a Godsend – don’t waste your time with the nasal sprays). I’m also experimenting with a prescription of Verapimil as a supposed preventative. So far so good actually – I’ve worked up to 2 x 120mg doses of slow release tablets per day and whilst they’re not entirely effective at stopping the headaches, they do seem to be reducing the intensity level (let’s call it “a fair amount of pain”, vs the usual “period of utter agony”). They are however making the attacks less predictable. Reading up on the experiences of others, it seems like different doses work for different people and some report the slow release variety aren’t as effective as the “instant” type. The trial and error continues. I’ve spoken to my GP about trialling Oxygen Therapy. She seemed somewhat reluctant, but I’ve pressed for her to refer the query to my consultant. I don’t expect a resolution on that this time around, but hopefully I can have something set up and ready for the next bout – whenever that may be. I’ve also decided to start a pain diary. As I alluded to before, one of the biggest challenges I’ve found has been remembering specific details over a period of many years, with long gaps in between episodes. Hopefully keeping a long-term record of dates, times, triggers etc, will help me to manage things better in the future. I’ve come to accept that I’m probably going to always suffer with cluster headaches, so I’ve resolved myself to treating it as a bit of a personal scientific experiment – gathering data, timing attacks and looking for patterns. Perhaps it’s a fool’s errand, but it certainly can’t hurt any more than the headache itself!

To anyone who managed to stay with this until the end, thank you for taking the time to read my little story. If nothing else, it’s been a cathartic hour writing it. I hope that anyone else suffering might gleam some reassurance from my experiences. You’re certainly not alone and if you’re at the beginning of the journey, I hope it helps to know that it can become more manageable, once you start to work-out what works best for you. Don’t be embarrassed to talk about things. Read up on treatments and challenge your doctor if you don’t feel like you’re getting the right attention. Always be prepared (don’t leave the country without appropriate medicine!). Most importantly, stay positive and don’t let things get you down – the problem might be in your head, but most of the solutions are in there too.


Mon, 26/03/2018 - 12:50
Last seen: 1 year 7 months ago
Joined: 26/02/2014 - 14:04

Hi Sam,

It's been really interesting to read your history because I can relate to quite a lot of it.  Bear with me.  I want to reply properly but can't until I have a bit of spare time.

Mon, 26/03/2018 - 20:17
Last seen: 2 months 5 days ago
Joined: 26/03/2018 - 12:19


I've just joined OUCH to try and reach people who understand how this feels and hopefully get some advice.

I'm nearly 20, diagnosed about 2 years ago and suffer irregular but very intense bouts.

Referred to neuroligist a couple of months ago, he's booked me another MRI, (had one about a year ago which was clear) he wants another to double chek and also Angiogram I think it was.

In recent weeks I've had a bad attack immediately following a night with a couple of drinks, one of which I am 2 days into and in agony. Been to AE last 2 days to get O2 relief with the usual 4 hour wait in agony. Oxygen really helps not completely but eases it. Sumatraptin injections prescribed too but when really svsere like now have little effect altough Over last 2 days have had about 2 injections a day to try and help.

Tonight I have a strange feeling over and around my left eye and upper check, slighlty numb, bit tingly but only other way to describe it is feeling 'tight' in that part of my face / head.

Has anyone else felt this? Wonder if it's side effect as I have had several Sumatraptin??

Going to see if it settles but seeing GP tomorrow to try and push for oxygen at home again. She refused last time even after Neurolgist sent letter recommending it for me. Going to print stuff of from here to take.



Thu, 29/03/2018 - 18:12 (Reply to #3)
SamW's picture
Last seen: 2 months 2 weeks ago
Joined: 26/02/2014 - 15:13

Hello Mary,

I think you've certainly come to the right place to find people who know what you're going through. I've had a pretty rough few days since writing my original post, so if it's any comfort to you at all, you're definitely not on your own!

It sounds like you're following the right process with the doctors and neurologists. In my experience the scans are all standard practice (I had several), so don’t worry too much about those. How irregular are your bouts / attacks?

I'm having exactly the same battle with the home oxygen right now. I asked for it when I went to the doctor to re-order my sumatriptan supply and I was told “it’s not something we do” and that it was “fringe science!”. Infuriated, I did exactly the same as you’re doing – went home, researched and printed off as much information as I could find (most crucially the NICE pathways, which clearly highlight home oxygen as a primary treatment). I also took a copy of my original neurologist’s recommendation, which like yours, mentioned oxygen therapy. I booked a second emergency appointment yesterday, presented my case and I’ve just received a phone-call from the surgery to tell me that they are referring me back to a neurologist, as my previous appointment was 10 years ago. Needless to say, I’m not best impressed (why it’s OK to prescribe a whole cocktail of chemicals, but not a bottle of pure air is quite beyond me!). I’ll be writing up a formal letter of complaint this evening and I will report back to you with how I get on. Do let me know how you get on tomorrow.

Regarding the Sumitriptan, I obviously don’t know your medical history, but a maximum two doses of 6mg  injections per day (with a least an hour in between) is what I’ve always been told. I think I pushed it to three inside 24 hours once – I lived to tell the tale, but I’d generally recommend you stick to maximum of two. It makes me feel like I’ve been hit by a train immediately after taking it, but the effects generally pass after about 5 minutes. I’ve not noticed any long term sensations which I’ve put down to the injections, but the headaches do have a tendency to surprise me even now with their varying symptoms and after effects. What your describing doesn’t sound out of the ordinary at all, but bring it up with your doctor tomorrow (and with the neurologist if you get the chance).

Again, I don’t know your medical history or how suitable it is for you, but when you see your doctor tomorrow, be sure to talk about Verapamil if you haven’t already. It really seems to be helping me in reducing the intensity of the attacks and is extremely well documented for helping with Cluster Headaches. I’ve also just been prescribed both Topirmate and Gabapentin to try, but to be honest, reading reviews and the list of side effects of them both, I think I’ll steer clear (again, another example of doctors preferring to pump people full of drugs, rather than prescribe a bottle of air!).

Whatever you do, avoid alcohol! As much as a mouthful of beer is enough to bring on a headache for me (and wine is even worse). I’ve also noticed a pattern between headaches and milk chocolate lately – but I might need to experiment with that a bit more before I’m sure.

Good luck with the doctor tomorrow – do report back on how you get on. And try not to worry or panic. The headaches are awful, but they can’t kill you. Don’t give your doctor’s an easy time – keep pushing and demanding until you get what you want and don’t be tempted to stop ojust because your headaches pass. They will almost certainly come back, so be ready for them. Get yourself tooled up and ahead of the game!   


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