OUCH(UK) Organisation for the Understanding of Cluster Headache


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#1 Wed, 28/03/2018 - 17:54
Last seen: 9 months 2 weeks ago
Joined: 24/03/2018 - 21:13


I have previously been a member of OUCH, many years ago when I was first diagnosed and received an amazing amount of support.

I've been a chronic sufferer for nearly 11 and a half years now and had many different treatments over that time that have worked to varying degrees of success. Although I must admit, oxygen has been a life saver throughout this time and for that alone I will be eternally thankful to OUCH. My GP only prescribed oxygen after I attended an oxygen trial with Peter Goadsby's team in London, which I only knew about because of OUCH.


I now find myself back at square one (except I have oxygen). After the production of Methysergide ceased, I was prescribed Sodium Valproate, this seemed for sometime to make life bearable, however as last year progressed, the attacks became stronger and more frequent. I was taking more and more time off work and eventually was signed of work completely on the 30th November 2017. I was taken off the Sodium Valproate as this was no longer providing any benefit. My GP prescribed Naproxen and co-codamol, which as you are all aware, are about as much use as a chocolate teapot.


I finally saw the neurologist last week and I now feel more deflated and disheartened than before. I've seen this neurologist before (not sure if posting a neurologists name is ok?) and he's always been really good, until now. I was examined by 2 medical students before seeing him, which I have no problem with. But when he arrived he just seemed to want to get rid of me. He offered me a choice of an injection in the back of the head (greater occipital nerve block I believe) or Lithium. I said that of the 2 I would prefer lithium, having already seen a video of the nerve block and read about it, the lithium sounded more appealing. There was no mention of the side effects that go with the lithium. I asked him about gammacore, but he refused to prescribe this unless I had the nerve block and it worked. I was then advised to wait in the waiting area and he would check if I needed a blood test done. He came back to me in the waiting area and advised I needed a blood test to check my thyroid and I needed to come back to him in 4 months. He would contact my GP and get him to prescribe lithium. Much to my amazement he has left me on the Naproxen, despite asking if it was helping at all.


Having now done research into lithium, i'm not too happy about taking it, I would much rather try the gammacore and I am considering asking my GP to refer me to a different neurologist, but know this will again take a long time. I barely leave the house as I'm so worried and scared of when the next one will strike and having to deal with it in public. I've not driven since I've been signed off work in November.


I must also say I couldn't have coped without my friends, family and most importantly my amazing wife. I know for the last 6 months I've been a complete nightmare and hell to live with, but she's done everything she can.


I'm sorry I've gone on a lot in my first post, but I'd been clinging on to the hope that something would change when I saw the neurologist, but now I just feel lost and really needed to get everything off my chest. I'm so tired of it all, fighting the pain and constantly beeing fobbed off.  I would like to just finish with one other point though, regarding PIP.


I made a claim for PIP and my wife took me to the assessment centre, there response came fairly quickly, scoring zero for each activity. But what annoyed me most was the number of errors. It started by saying I was observed to be of average build, now I have no problem in admitting I am hugely over weight and infact fall into the morbidly obese category. It also stated I was not on any painkillers. Most of the report was either twisted to meet their needs or just a complete fabrication. They did manage to get my name and address right though, so I guess that is a start.

Thu, 29/03/2018 - 21:27
Last seen: 4 days 5 hours ago
Joined: 26/02/2014 - 14:26

Hi Andrew,

So sorry to hear about what you have been going through. Why don’t you call the Helpline 01646 651979 and we can go through a few things and find a Headache Specialist Neuro nearest to you as it seems the one you have seen is not helping you as you need.

take care


Wed, 04/04/2018 - 14:03 (Reply to #2)
Last seen: 9 months 2 weeks ago
Joined: 24/03/2018 - 21:13

Hi Elizabeth, thanks for the reply.

I saw my GP today and had a very long and very productive conversation. He is referring me to Dr Wojtek Rakowicz and I am now feeling a lot more hopefully of getting some help. My GP was also extremely interested in Gammacore. He had never heard of it, but took everthing I had printed out, so that he could look into it for me.

On a side note, I was diagnosed with sleep apnoea yesterday, I was just wondering if there are many CH sufferers with sleep apnoea?

Wed, 04/04/2018 - 23:53 (Reply to #3)
darren h
darren h's picture
Last seen: 4 years 5 months ago
Joined: 20/03/2015 - 11:43

hi andrew how long ago did you claim pip? you have a month from the date on the letter to appeal, this i can help with, if its less than a month ask the dwp for a copy of te assesment report, its what the dwp base the decission on waht you will be fighting, sounds like youve got a good case so fight on, let me know when you get copy of the report and i help you much as i can,,  sorry to hear what youve been going through, its ruff, i refused to take lithium, so just got o2 and suma jabs, all the best darren

Thu, 05/04/2018 - 09:21 (Reply to #4)
Last seen: 9 months 2 weeks ago
Joined: 24/03/2018 - 21:13

Hi Darren, thanks but appeal went back on the 8th March, so just waiting to hear back again. Will let you know what they say.

Fortunately I have a great GP, he has limited knowledge of CH, but is extremely helpful. I always try to think, there's people out there that have it worse. I couldn't imagine life without the oxygen. I also feel have support from friends and family is vital, i'm always getting calls and texts from work colleagues, checking how i'm doing.

Fri, 04/05/2018 - 12:08
Last seen: 9 months 2 weeks ago
Joined: 24/03/2018 - 21:13

I've just received my mandatory reconcideration from DWP, who have decided I still score zero in all cases.

The part that annoys me more than anything else is the following section:

'The level of input you are receiving for your condition, and your account of the frequency and length of your headaches indicates that it is unlikely you will experience restrictions for the majority of the time. This is consistent with the nature of Cluster Headache flare ups and remission periods. Therefore while I accept that your Cluster Headaches are severely debilitating and impact upon your quality of life, for the purposes of PIP, the evidence indicates that you have no functional restrictions preventing you from completing all aspects of daily living, planning and following journeys and moving around safely, repeatedly, reliably, to an acceptable standard and within a reasonable time period unaided, most of the time.'

Any help anyone can offer regarding the tribunal process would be greatly appreciated. I had hoped it wouldn't have to go this far, but the way they have twisted the facts, lied and ignored what I have said has made me very annoyed and made me more determined to fight on and succeed.

Wed, 16/05/2018 - 09:57
Last seen: 5 days 8 hours ago
Joined: 21/03/2012 - 15:16

Appeal and talk to Darren H again. 


Wed, 27/06/2018 - 17:10
hyattmc's picture
Last seen: 3 years 5 months ago
Joined: 07/11/2017 - 11:15

I have also been offered the nerve block today and am not happy to put more drugs especially steroids into my system - long term suffer and tired of all the drugs not working - I’m requesting Gammacore and if Neuro refuses I think I will ask GP for alternative Headach specialist - where is the one you have been referred to? Is she very keen on Gammacore ? 

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