OUCH(UK) Organisation for the Understanding of Cluster Headache


Advice Line

0800 6696 824

Feeling lost

7 posts / 0 new
Last post
#1 Wed, 18/10/2023 - 11:37
David Mckenzie
Last seen: 2 months 2 weeks ago
Joined: 28/09/2023 - 11:45

Feeling lost

Hello everyone. 

I was diagnosed with Cluster headaches last year after my attacks had finished by my neurologist. The previous two years I'd had 2 week long episodes around late August early September time. At the time I didn't know what the pain was or what was happening, I just put it down as dehydration or being over tired from work. These attacks lasted around 1.5 hours and whilst the pain was intense I was able to handle it.

This year my attacks started at the beginning of September and haven't stopped. I'm getting around 8 a day and I haven't had a day off. It's always on the left side of my head, starting behind my eye. My eye waters and my left nostril gets stuffy so I know it's coming. The pain then spreads to around my ear area and the pain is indescribable, I'm pretty much incapacitated. It's like nothing I've ever experienced.

My GP put me on Verapamil 3 weeks ago, 240mg daily. Whilst it's helped, I'm still getting pain coming through. Normally around 6 - 8 on the pain scale, which I can Normally handle but sometimes I need to get on the oxygen.

I have Sumatriptan injections but I tend to save these for when I can't handle the pain anymore or just need a break. This and oxygen is the only thing that stops the pain for me.

I'm on a course of Prednisolone steroids which don't seem to have done anything.  In fact since starting taken them I've started to have neck pain/stiffness during an attacks on my left side.

I guess I wrote this because no-one I speak to really understands what I'm going through or how it feels. Calling them headaches isn't right, this is something more. I've realised I need to learn to live with this. I have 2 young children which need caring for and I need to work to support them. 

So I guess my questions are.... Would it be better for me to be under the care of a neurologist consultant rather than my GP? I never see the same GP twice so I find myself having to explain everything repeatedly. 

Is there anything I can do? I've cut out alcohol and have stopped exercising. I'm trying to get good sleep but it's pretty much impossible when I'm woken up in agony after being asleep for a bit and every morning at 0430. 

Is it normal to have neck pain/stiffness? It doesn't happen that often but when it does, its another level of pain I didn't know existed.

What are shadows? I've come across the phrase but I'm not sure what they are. Is it the dull ache/throbbing I feel behind my eye but doesn't develop into an attack?

Can lighting, head position and looking at screens trigger an attack? I feel that if I'm sat down with my head to the left or looking down it can bring an attack on, although I could be imagining this! 

Thanks for taking the time reading through all this. I'm trying to understand Cluster headaches and there isn't too much information out there! 

Wed, 18/10/2023 - 12:11
Colin Allen Vic...
Last seen: 2 weeks 4 days ago
Joined: 21/03/2012 - 15:19

Hi David,and sorry you are suffering so badly at the moment. There are many things I could discuss with you,but it would be far better if you contacted our advice line on 0800 6696 824.They will take you through all of your concerns and offer the best possible advice. They will give you the name of one of our expert neurologists near to your area.

Please make the call - it will benefit you greatly. Good luck!

Colin Allen

Vice Chairman

Wed, 18/10/2023 - 12:36 (Reply to #2)
David Mckenzie
Last seen: 2 months 2 weeks ago
Joined: 28/09/2023 - 11:45

Thank you for taking the time to reply. I will call the advice line as soon as possible. 

Wed, 01/11/2023 - 19:53
DavidH 7
Last seen: 5 months 2 weeks ago
Joined: 26/02/2014 - 15:13

Hello.  I'd echo the suggestion to speak to the advice line and I'd also speak to your GP about referral to a consultant (It might be worth starting to keep a headache diary, ahead of this).

Like many here, my headaches were undiagnosed for years and resulted in trips to the opticians, the dentist and lots and lots of antibiotics for sinusitis until a locum GP recognised my symptoms.  I was prescribed Sumatriptan tablets for a while (too slow) and eventually oxygen.  I must admit I went through some episodes trying to save Sumatriptan injections for the worst pain and using Oxygen whenever possible.  I do tend to inject now, at a point that I recognise that I can't "ride this one out", though obviously you can only do this twice per day unless advised otherwise by a medical professional.  I've sometimes thought that the attacks have come back quicker in the day when using Oxygen though I may be wrong in this.  I also find a heated wheat cushion or similar is quite  useful/comforting (though wouldn't actually stop the pain).  

I'd strongly recommend cutting out alcohol (during an episode, rather than generally), as you are doing.  This just ramps up the pain (for me).  I'd probably have a plan around "odd thoughts" when in severe pain - I've definitely had irrational thoughts like "I must have done something terrible to deserve this" when experiencing the 10/10 pain.  I'm quite open that the pain can reduce me to tears. 

There's a point in my episodes when I stop most driving - partly due to tiredness but also partly due to the pain of having had to abandon my car when I've not been fit to drive.

Depending on your work, you might want to create a risk assessment (I stop making work decisions for a couple of hours after injecting or while in pain).  I've also found it useful to share some information with my colleagues albeit largely with the intention of saying "If I look in pain just leave me alone", as I can't tolerate being fussed, particularly towards the top of the pain scale.

I've always understood shadows as a low level pain, in the same place as I would experience the more full-on pain.  

Hope that helps.  Should add, not a doctor and my experiences won't match everyone's.  

Tue, 07/11/2023 - 11:13
Dorothy Trustee
Dorothy Trustee's picture
Last seen: 2 days 14 hours ago
Joined: 19/02/2014 - 10:16

Hi David 

Did you ring the advice line? I was wondering how you were getting on and hope you aren't still feeling lost. I'm sure you won't be if you rang the advice line and they'll have advised a referral to a headache specialist neurologist.  Hope you're on the right path now.

All the best.

Dorothy (Trustee)

Wed, 22/11/2023 - 05:42
Last seen: 8 months 2 days ago
Joined: 31/10/2018 - 00:05

Hi David,

Hope things have started to improve for you. It feels like I could have written your initial post as I went through exactly the same thing several years ago. I'm sure the advice line is better informed than me, but for me seeing a neurologist was a turning point. GPs I saw readily admitted that they didn't know what to do beyond what the book said. My neurologist however, immediately changed my drugs (took me off verapamil), will normally see me pretty quickly and whenever I've been in a real emergency has made time for a call and given me various options to try in the medication front. 
I still suffer and have to use oxygen and injections (mainly at night) but in general my day is now manageable. 
Good luck!


Fri, 01/12/2023 - 17:34
Last seen: 1 month 4 days ago
Joined: 10/11/2023 - 22:14

Hi David

I'm a Chronic CH sufferer and I understand how you feel, as do all who post here. 

Scott's comments above struck a chord with me. Seeing a neurologist was, for me, a turning point that effectively changed my life - and believe me I'm not being dramatic. My advice to anyone in your position is to see a neurologist as early as possible. There are long delays in the NHS but if necessary, and if you can afford the fee (approx £250), you can see a neuro in a week or so. Just make sure you see a neuro who has expertise in headaches. He/she will have knowledge of a range of treaments and should be able to identify a regime to suit your particular requirements. Once this has been identified the treatments can, for the most part, be delivered via the NHS.

Good luck!


Login to add comments

Share This

© OUCH(uk) 2024 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368