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Help/advice needed

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#1 Tue, 28/04/2015 - 16:08
Last seen: 9 years 4 weeks ago
Joined: 04/04/2015 - 16:35

Help/advice needed

I am new to OUCH, I have suffering with CH’s now for a few years. After a lot of going back and forth with the dr’s it took me about a year to get an appointment with the neurologist. I have tried all sorts of medications, Verapamil, Atenolol,  Topiramate. Alongside these I was given Zomig nasal spray for pain relief. I didn’t get on with any of these. Either I found they made no difference and or had horrid side effects. When seeing the neurologist we went through all of these and we made the joint decision I would not take any daily medication. I would just use pain relief medication as and when I need it. They also mentioned me having an MIR scan to rule anything else out. I am still on the waiting list for this…..
I currently use Oxygen, Imigran injections, Sumatription nasal spray & tablets as and when I need them. I am trying to manage my CH’s myself as whenever I go to the drs they have no knowledge about the headaches and try and suggest it may just be migraine’s and fob me off. They are also very hesitant to prescribe me with any of the sumatriptions or injections. I am currently waiting for my next neurology appointment to which I was told will be at least a year due to long waiting list….. this is not acceptable. I understand the waiting list is long but with no help from my local GP due to no knowledge I believe this in unacceptable. I have been back again and again to my GP who have promised me they will call neurology and try and get me an appointment sooner. I am waiting to hear from them.
I am really struggling to come to terms with the fact I am going to have to deal with this for the rest of my life or however long, I am getting very little support from my GP and just struggling with this in general. I have spent an absolute fortune over the last few years on prescriptions and struggle to pay sometimes even though I really need the pain relief.
I am getting very stressed with this all as I feel I am getting little help/ support. I understand I am going to have to learn to live/ deal with this but could do with some help in coping and managing this illness. From finances to work and managing the headaches.
I am 23 and find this all very stressful. Any advice or help with dealing with this illness would be much appreciated. Sorry if I have rambled on a little bit I have never done anything like this before.
Thanks in advance!

Tue, 28/04/2015 - 18:36
Mr Git
Mr Git's picture
Last seen: 5 years 6 months ago
Joined: 26/02/2014 - 14:34

Hi there!

Welcome to the forum, just sorry you find yourself having to be here.

In the first instance I recommend that you call the Helpline. The number is 01646 651979. Just leave your details and someone will get back to you. The Helpliners are all sufferers or supporters of sufferers and they will be able to offer advice, help and support.

With regard to your neuro dilemma, are you within a reasonable train journey to London? If so, you could consider trying to see our patron, Professor Peter Goadsby who is based at Kings in Denmark Hill, south London.

It does sound like you have tried all sorts of medication. My baseline treatment is Sumatriptan injection (max 2 per 24 hours) and Oxygen administered via a Demand Valve. You will probably find the nasal sprays don't work.

With regard to prescription costs have you got the annual prescription prepayment certificate? It costs £104 for 12 months. I appreciate that is a lot to find but it works out cheaper over the course of the year.

Feel free to ask anything on here, we're a friendly bunch.

Give the Helpline a call and hang on in there!


Warning: This forum may contain nuts

Fri, 01/05/2015 - 08:21
Harrietjt's picture
Last seen: 6 years 6 months ago
Joined: 22/10/2014 - 12:47

So sorry to read all this tough stuff you are dealing with. How right you are that if the GPs don't know what they are doing it is then completely unacceptable to have to wait a year for the neuro!

You are certainly not alone in finding yourself trying to cope with a condition that is either misunderstood or not understood at all, at least you are now linked up to a community who know what that is like. And the issue of GPs not wanting to prescribe the Triptans you need is all too common and also completely unacceptable. This happened to my husband and it drove us nuts, but we did get the GP Surgery to behave in due course. Recently we have ben doing the same thing for a freind with CH. Let me know if you want to know about how we tackled it.

I second what Sean says about the helpline, over the years we have had really good support, very very helpful. And it is such a relief to talk to people who understand completely.

The prescription pre payment certificate saves so much money, we have been very glad of it.

Does your CH come in episodes followed by pain free periods of time? Or do you get it all the time?

Best wishes,


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