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Diagnosed... At last!!

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#1 Wed, 10/06/2020 - 14:15
Last seen: 1 year 5 months ago
Joined: 02/06/2020 - 20:57

Diagnosed... At last!!

Hi Everyone,
New member here, although not new to these horrible headaches.

6 long years ago, I started getting piercing headaches on the left side of my face, temple and eye on a daily basis for a while. As we all do, I started researching what it may be on the internet and came across a description on the NHS website for these things called Cluster Headaches and I thought, Bingo! That’s exactly what it is. So, I went to see my GP and explained that I believed they were CH, only to be told to go and get my eyes tested and sent packing. So, after being £130 down with glasses I didn’t need and still suffering from the most unbearable headaches I had ever felt, I was no further forward.

They disappeared after around 4-5 weeks and I forgot all about it, putting it down to stress at work. 2 years later, these headaches decide to come and have another go. Back to the GP I go, again explaining I had the same symptoms 2 years previous and if I wasn’t convinced they were CH before, I certainly was now… However, I didn’t feel there was any real intent to find a proper solution from the GP again and was sent on my way with a prescription of Beta Blockers, which did not help at all.

This pattern has continued even up until recently. I am currently experiencing my worst ever bout of Cluster Headaches and the pain got to a point a few Sundays ago that I had to call NHS 24 and go to the Out of Hours hospital appointment, to again be told it wasn’t CH but Trigeminal Neuralgia and sent home with Ibuprofen. Absolutely furious with this, I called my new GP (Recently moved practices) and on the call back, I somehow manged to get the most understanding, caring and sympathetic GP ever. She had looked over my previous notes and told me as soon as I answered the phone, this has to be Cluster Headaches!!!

Don’t get me wrong, I absolutely wish it wasn’t CH, but to be told that you do have what you’ve been telling numerous GP’s over the years was actually quite a relief. This lovely GP currently has me on Zolmitriptan nose sprays and whilst it doesn’t prevent the headaches, it relieves them so much faster than my normal 1.5-2 hours of absolute agony. I have also been referred to a Neurologist and have an appointment this week so hopefully they can take it further still and discuss other possible treatments.

At this point, I am willing to try anything. I am now on week 4 of having this constant dull feeling, I think it’s also referred to as shadows, in between each excruciating attack.

I am not sure what my whole point to this is, I guess its just good to get everything out that other people reading this may be able to relate to and if you have these symptoms and haven’t been diagnosed, stick to your guns because I was sent away without a solution too many times.

Thu, 18/06/2020 - 16:25
Last seen: 1 year 2 months ago
Joined: 18/06/2020 - 12:40

Does anyone use high flowing oxygen with a non breathing mask and if so can you recommend a supplier?

Fri, 31/07/2020 - 16:30 (Reply to #2)
Last seen: 2 hours 27 min ago
Joined: 26/02/2014 - 14:26

Oxygen can abort attacks but needs to be ordered by your GP.  If you have a look under the downloads section on this website you will find a HOOF (Home Oxygen Order Form) that is clinically completed for CH, if you send this to your GP he can use it as a guide to fill in the form on his portal.

There is also a lot of information about oxygen on the website too, have a good read.

Sun, 02/08/2020 - 21:30
Last seen: 1 year 7 months ago
Joined: 19/05/2020 - 21:41

Hi David, or as we would call you here, Dai..

As awful as CHs are, I found that actually being diagnosed with something some 8 years ago now, was dare I say a releif in so many ways. As for the clinical awareness generally when facing these symptoms, unless your being assesed by someone versed in CHs and its many kwirks, the natural process is one of checking for known conditions first. This can and was for me certaianly, a worrying and of course painful process, made even longer by the little knowledge available back then. 

What I have learned in 8 years, is that sufferers have all the information about CH, its sharing this knowledge with the medical profession thats essential. Until that golden sunny day when CH are a treatable and manageable annoyance, something like Wales winning the RWC...There is no better place to go for advice, assurance and knowledge, than this website. For the first 4 of thoses 8 years I must admit to feeling a bit abormal, everyone saying whats wrong with him etc....I am now reassured knowing that there are so many other slightly "abnormal" blushpeople like me.....Good luck my friend and welcome.....Rgds, Jon

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