OUCH(UK) Organisation for the Understanding of Cluster Headache

Donate

Advice Line

0800 6696 824

overseas +44 1646 651 979

Advice/help please

5 posts / 0 new
Last post
#1 Mon, 15/02/2021 - 16:31
Feist10
Offline
Last seen: 5 months 1 week ago
Joined: 15/02/2021 - 16:12

Advice/help please

Hi everyone 

I've been a sufferer of ECH for approximately 7 years now. Had all sorts of grief getting a referral to a neurologist including being accused of taking steroids and being advised to 'just drink more water' by my gp. 

Finally 4 years ago was referred and properly diagnosed and put on to amitriptyline 10mg x 1 per day, and sumatriptan 6mg injections. The amitriptyline doesn't seem to have any effect but the injections are a life saver. 
 

Subject to an ECG tomorrow I am hoping to move over to verapamil. Interested in anyones views on amitriptyline vs verapamil?

Also for anyone who also gets the injections, what is considered a fair number to be prescribed in one prescription? I have just managed to get mine up to 4 but suffering with multiple CH per day these only last 2 days and regardless of if I go direct to gp or order online from pharmacy2u the turnaround for this repeat prescription is very slow and I'm left for days without medication. Anyone else experience this?

Thanks in advance

Mon, 15/02/2021 - 19:30
DavidH 7
Offline
Last seen: 2 days 6 hours ago
Joined: 26/02/2014 - 15:13

Hello.  Sorry that you've had difficulty accessing the appropriate treatment - that sounds grim.

If it's any re-assurance, I think it's incredibly usual for Cluster Headaches to be mis-dignosed or undiagnosed for a long period of time though I'd hoped that was changing.

I haven't used  amitriptyline and didn't get on with verapamil but I know lots of people here have appreciated the latter.

I'm prescribed five boxes of Sumatriptan injections at a time (so ten injections).  I use this alongside Oxygen and at the moment am using the maximum dose of two injections per day.  Anything less than this would be a chore ... and I think there's an argument not to be making multiple trips to the chemist, at the moment, due to Covid-19.  That said, I'm lucky to have had access to a consultant and have a sympathetic/interested GP.

Good luck. 

Mon, 15/02/2021 - 20:24 (Reply to #2)
Feist10
Offline
Last seen: 5 months 1 week ago
Joined: 15/02/2021 - 16:12

Hi David

Thank you for the response. I agree cluster headaches do seem to be a bit of an unknown for a lot of people. I feel lucky that I have now been diagnosed correctly and can to some extent be medicated accordingly. I definitely do not expect a gp to know every single possible ailment/condition that ever exhisted but it is frustrating when you are the one suffering from one so severe.
It is good to know that potentially I could have my quantity of injections up'd. I assumed it could've been a 'worry of overdose' or 'cost' factor? They work so well I'd happily pay the £9odd prescription for every single injection I just wish I could collect 10 at a time. I find myself not using at night and therefore not sleeping so I can save the injection for the day just to be able to keep working. 
I am going to try and have a discussion during the ECG tomorrow as it is at the gp surgery and see what they say. I know from previous they practically laughed at my suggestion of oxygen therapy. 
maybe it is time to switch gp's!? 
Thanks again. 

Mon, 15/02/2021 - 22:06
DavidH 7
Offline
Last seen: 2 days 6 hours ago
Joined: 26/02/2014 - 15:13

I know it can be difficult to argue/articulate needs when you're unwell but the NICE guidelines are very clear on the recommended treatment:

Your healthcare professional should offer you oxygen and/or a triptan to help relieve your cluster headache. The oxygen comes in a cylinder and you breathe it in through a mask. The mask should not have any holes in the sides and should be connected to a reservoir bag. The triptan comes either as an injection that you can give yourself or in a nasal spray. Your healthcare professional should arrange for you to have oxygen cylinders for use at home and cylinders that you can carry with you to use wherever you are. They should also make sure you are offered enough triptan for your needs. You should not be offered paracetamol, an NSAID, an opioid, an ergot or a triptan in tablet or capsule form to help relieve cluster headache.

I always go for the three month Prescription Pre-Payment Certicate during an episode - it pays for itself many times over. 

 

Sun, 21/02/2021 - 11:32
Emma S
Offline
Last seen: 4 months 1 week ago
Joined: 21/02/2021 - 11:08

Hi everyone, I've just joined and so it's interesting (and somewhat reassuring) to hear other people's experiences. 
I've had ECH for 12 years now which always come back in the autumn and have just started again oddly. 
I tried amitriptyline but it didn't seem to help and I couldn't have verapamil based on my ECG results.  I tried oxygen but it just seemed to postpone the headache until I stopped breathing through the mask. 
Sumatriptan injections have been my saviour and I can get 12 per prescription (6 boxes) but that could some convincing my GP (I can also get them from my neurologist). If you're struggling to get hold of enough, you can also buy two packs of the sumatriptan tablets over the counter in the UK - they obviously don't work as quickly but are still far better than any other painkillers etc. 

Does anyone else with ECH recognise a pattern in when theirs start in the year? I think the days shortening / lengthening definitely seems to be a trigger for me.

Many thanks and hope you're feeling better.

Emma

Login to add comments

Share This

© OUCH(uk) 2021 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368