OUCH(UK) Organisation for the Understanding of Cluster Headache

Donate

Advice Line

0800 6696 824

Your first ever attack

6 posts / 0 new
Last post
#1 Tue, 10/01/2023 - 22:19
Oliver
Offline
Last seen: 3 weeks 2 days ago
Joined: 10/01/2023 - 21:59

Your first ever attack

Hi all,

New member here. My wife has suspected CH, we have our initial consultation with Dr G. Lambru this Friday. 

We are very new to this, the first attack was just under a week ago. We are about 7 attacks in now. My wife (Leah, 36) describes them as the most painful experience - like have knives slice into her brain whilst feeling like her eyeballs will explode and nose pain too. 

One thing she is really struggling with at the moment is that there doesn't seem to be much relief between attacks. She feels heady, delicate and usually with a headache (2-5 / 10) throughout the day. 

I wondered if people could share the story of their first attack? Did something trigger it? Was it random?

For Leah it actually came after a panic attack. This seemed to confuse our doc/neurologist when we went to a&e after attack 3 - as it made them consider it as Tension Headaches. But since then everything else seems to be pointing towards CH. Taken the survey on this site and it leads to CH too. 

Thanks,

Ollie

Oli.

Wed, 11/01/2023 - 10:16
Lotte
Offline
Last seen: 20 hours 17 min ago
Joined: 09/11/2022 - 11:44

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 

 

Thu, 12/01/2023 - 12:58
Pete
Offline
Last seen: 2 weeks 3 days ago
Joined: 21/12/2015 - 07:21

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

 

 

Mon, 16/01/2023 - 13:00
ElizabethK
Offline
Last seen: 6 days 2 hours ago
Joined: 26/02/2014 - 14:26

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

Mon, 16/01/2023 - 14:08
Dorothy
Dorothy's picture
Offline
Last seen: 15 hours 23 min ago
Joined: 19/02/2014 - 10:16

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

 

 

Fri, 20/01/2023 - 16:29
Peejay07
Offline
Last seen: 2 weeks 4 days ago
Joined: 20/01/2023 - 16:06

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.

Login to add comments

Share This

© OUCH(uk) 2023 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368