Your first ever attack

Hi Ollie,

I don't have an answer to the questions, but I was initially diagnosed as having tension headache rather than cluster headache. The reality was that the cluster headaches seemed to cause the tension headache. Once I got treatment that worked for me (I'm currently lucky in that respect), I have few tension headaches. I still get that "eye on the stalk" and eye dryness feeling though. I've found over the counter eye drops relieve the feeling a little, but this is not medical advice I've received. 

Really hope you get answers at the appointment.

Good luck!

Charlotte 

Hi Ollie,

There was no trigger for my CH as far as I can tell. But it took about 4 years before I was finally diagnosed. They started as discomfort around the eye and restlessness for a few minutes. Over several months they intensified and became very painful, I self treated with nurofen and paracetamol but of course they didn't actually work. My GP didn't know what it was, sent me for head xray. 

Eventually my neighbour (who is an artist and has no medical training at all) did some research and said it sounded like CH. I put this to my GP who then referred me to neurology. To cut a long story short I had to ask for a second opinion before I was finally dagnosed and proper treatment started.

When the headaches for started (more as an unpleasant feeling than pain) I thought it was environmental. I worked in a small workshop with strip lights, noise and chemicals. I replaced the lights with daylight bulbs, wore ear defenders and stopped using chemicals, of course none of them made any difference.

I read as much research as I could about triggers for CH but at the time there was very little statistical evidence for anything as a trigger. I've put it down to my bad genetic luck, maybe in a few years they'll identify a virus or a gene.

I hope she gets the medical care she needs, for me the turning point was a huge dose of Verapamil and more importantly Sumapriptan epi pens which took the pain away within minutes of it starting. They don't like to prescribe them though as they are really expensive.

Pete

Hi Oliver,

Sorry I am late to this, how did your wife get on with Dr Lambru?  Don't forget if it would help to speak to someone you can give our Advice Line a call 0800 669 6824

take care

Liz

Welcome, Oli. Sorry you need to be here. In reply to your question re first attacks, mine was an incredible 56 years ago! How did I get this old! I had a young baby and had started to take the pill and I often wonder whether that was the trigger but can't really be sure. It came shockingly and violently out of the blue during the night one night, accompanied by the watering of the eye, etc. I was between the devil and the deep blue sea as far as a diagnosis for my recurring attacks of horrendous pain. The GP said it was my teeth, the dentist said it was not and I was finally driven to get a few perfectly good teeth out- which of course was such a waste and made not a jot of difference. After that it was labelled migraine but nothing I tried worked. I was in my 50s before I discovered OUCH and at the same time, oxygen. That was my first ever relief. During all those years of treatments that never worked, the only kind of ease I got was frozen peas over my eye. The good news is that my remission periods between episodes (or bouts) got gradually longer over the years until after age 60 I was getting 2 year long breaks. That has continued until my current remission which will now have lasted an amazing 7 years next month! 

Things have improved massively so hopefully your wife will get on a good treatment plan.

How did the appointment go?

All the best.

Dorothy

Hi Ollie,

I first suffered my first CH nearly 20 years ago following a fairly serious motorcycle accident. Suffered for about 3 months, and then nothing until Christmas 2022. For no reason at all, they came back with a bang. No trauma, stress or other lifestyle change. Now nearly 4 weeks into this episode, I'm suffering between 4-6 every night, usually with an hours sleep ish in between. The pain as you mentioned is almost indescribable. Like other sufferers, if I lay down for sleep or a rest even during the day, they hit me within the hour. My GP has referred me to the local Neurology Dept, so I'm hoping I may get some additional help or advice from them. One thing I'm glad I did, was to keep a record of the attacks, their severity and whether or not I was able/allowed to take the basic pain relief I have at present. So much easier to be able to produce an actual record of when and where they hit, especially down the line in the weeks or months to come. I'm also actively exploring oxygen treatment, although my GP won't prescribe it until after the Neurolgy appt, but a lot of other groups seem to recommend it as a useful tool in the box. The main advice I would offer is be really persistent with the GP Surgery as to how much of an impact these episodes are having on your wife, and by default, you as well. Unless you've had a CH, you really can't appreciate just how painful they really are. Good luck to you both, and please keep updates coming. Kind regards, Paul.

Hi Ollie,

There was no trigger for my first attack, it was just a normal day, then I had a strange feeling in my right eye, and within a minute I had the pain that Leah described.

I was misdiagnosed for 3 years (tension headaches, Migraines and even sinus infections) it was actually my half brother who suggested CH to me as he suffered with them from his late teens. I am currently working with my doctor at the moment on a new treatment plan as my episodes have increased.

There is one thing that has helped more than anything and that is my partner Bill, he has been amazing. When I'm in an episode I lose myself and can become someone that I'm not (irritable, reclusive and just generally miserable), he is so patient, understanding and will do anything to help me. I'm not super outspoken when it comes to doctors and I tend to just take what they say as law. Bill is the one who pushed me to keep going back to the doctors and to keep fighting for a diagnosis. That is the biggest bit of advice I can give to you and Leah, if you both have to fight for her diagnosis, fight for it.

I don't think that I've been much help to your survey sorry but I hope Leah gets the best treatment for her.

Take care 

Steph 

Hi Oliver.

Well done getting a diagnosis so quickly, the average time was 13 years last I heard.

My first attack was at a Guy Fawkes firework display 1982. Tame by today's standards, but they ramped up in intensity by the following year. Received my first triptan injection 2001.

It definitely sounds like CH to me: Extreme pain in and around one eye; like your eyeball's being ripped apart by rats, background headaches and feeling delicate: 10-rounds-with-Tyson-the-day-before delicate, but I can only base that opinion on my own experience.

There's nothing Leah did to cause her CH, it seems we're born with this hypothalamus thing, the bouts come and go by their own design.

That Neurologist should help a lot with Leah's pain, I think there's a group somewhere for you here, watching a loved one suffer is difficult too.

Good luck.

Hi Oliver,

Sorry to hear about your wife.

I am 38 and have suffered with Cluster Headache attacks since I was about 14. I didn’t even know what they were called until I was about 21. Mine come every 2 years and will last for about 8-12 weeks, before disappearing for a couple of years. Every time I looked into getting serious help, the attacks would stop and so would I in searching for proper medical help – probably down to my age. I vividly remember one attack when I was 14/15 with me punching the side of my head as hard as I could to try and relieve the pain - nothing would stop it. I am 6 ft 4 and the punches were strong. I left myself with bruises and being so young didn’t realise what was happening. The nearest description I find to give to people is that it’s like a constant ice cream headache. You eat that bit of ice cream too fast and you will experience a few secs of sharp pain. CH's will continue like this for a couple of hours. In the old days, it was horrendous, having the attack but once it subsided, you would be mentally and physically drained and only want to sleep so life was tough. Things have improved a lot - mainly since I was prescribed the injections ( about 6 years ago), things are a lot more manageable. They still come, every couple of years, and stay with me for 8-12 weeks before moving off for 2 years. Now when one comes, I inject and within 15 minutes, the pain has gone and I can return to normal activities, they really are the only thing that I have found that fights this.

I wish you both the best.