OUCH(UK) Organisation for the Understanding of Cluster Headache


Advice Line

0800 6696 824

Help needed

7 posts / 0 new
Last post
#1 Sat, 25/01/2020 - 13:39
Globaldavelewin's picture
Last seen: 4 years 5 months ago
Joined: 13/09/2019 - 10:01

Help needed

I'm sure this post has been covered on many occasions, I have been to the doctors more times in the last 12 months than I care to imagine. Finally a few months ago they put me on a repeat prescription of verapamil and the sumatriptan injections which are amazing, unlike most my attacks occur about 3 times a day so nothing like some sufferers on here although still excruciatingly painful. 

now I know the injections can only be taken twice in 24 hours but I never have enough and they won't let me have a small stockpile of them. I have to go all weekend now without them and have nothing knowing that tonight I will get more attacks. 

has anyone got any advice on what I can do to try and persuade the doctor whom I might say had to look into clusters at first. I have a neurologist appointment in February and hoping he will help. 




Wed, 29/01/2020 - 12:53
Last seen: 23 hours 7 min ago
Joined: 26/02/2014 - 14:26

There is a link on this site somewhere to the NICE Guidelines which sets out the treatments for CH and that you need 2 injections per day.  GP's may not like this due to cost, but the injections should not be withheld due to cost.  A letter from your Neuro could help, or, a word with your Practice Manager, and if no joy at that point a word with the Prescriptions advisor at your Local CCG (Clinical Commissioning Group) can bear fruit!.

Have you got oxygen?

Fri, 31/01/2020 - 09:50
Last seen: 2 years 8 months ago
Joined: 12/11/2019 - 09:20

I'd Definitely print off NICE Guidelines for Cluster headaches, as I did after 3 yrs of split head Agony, then hand to your GP for referral to Neurologist to get Oxygen prescribed. Oxygen.. It Is an absolute Godsend for attacks. Good luck x

Thu, 06/02/2020 - 11:30
Last seen: 2 years 5 months ago
Joined: 26/06/2019 - 15:45

Hi Dave. I think most neurologists are aware of issues with GPs not prescribing adequate treatment. In the letter from my neurologist to my GP, he included some fairly strong wording along the lines of "It is considered unethical to withhold treatment, please ensure an adequate supply of sumatriptan". 

I suggest you mention to your neurologist that you haven't been given enough medication to last over weekends, and ask them to specifiy a larger number of injections. 

Daniel - Episodic CH

Sun, 29/03/2020 - 02:37
Last seen: 4 months 5 days ago
Joined: 28/10/2019 - 01:36

Hi Dave,

I was using sumatriptan sub cut quite often during episode but the duration of the episode began to increase. My neuro looked at my attacks and treatments diary and said she had often seen episodic move to chronic with excess use of sumatriptan injections. I was devastated thinking I was making it worse by using the injections so much. Who knows if this resulted in becoming chronic but since then I do rely on oxygen use up to 3 hours a day, but it does mean catching it before an attack as it's useless when you're full blown into one. This obviously means being close to it and knowing the signs of when one starts/ time of day it is due. 
Rhe whole thing is such a nightmare but I wanted to pass on the information I've been given and how I (try) to manage episodes now. I think I now have a drug that is effective for me (lamotrigine) which is a GODSEND but I have to titrate up and then down to get the best results. It is all so exhausting, this last episode has been going since mid October but I'm coming out of it now. I didn't get my nerve injection in time and I didn't titrate drug up soon enough. You do have to learn your cycles it's just so hard when you're in the thick of it. 
wishing you the very best of luck, becky 

Thu, 02/04/2020 - 21:29
Last seen: 3 years 4 months ago
Joined: 15/09/2019 - 17:36

Can you speak to your nurse specialist about nerve block injections or a referral to the consultant for a gammacore machine?

I am prescribed verapamil, O2, sumatriptan nasal sprays and injections, you can only use 10 per month of the latter. In Jan & Feb I had to have nerve block injections each month, and also a course of steroids due to unmanageable pain, in addition to the aforementioned drugs.

My nurse specialist re-referred me for a gammacore and it has been a game changer for me.


Sat, 19/12/2020 - 02:35
briggsmarkj@hotmail.co.uk's picture
Last seen: 3 years 7 months ago
Joined: 10/10/2020 - 02:28

Unfortunately this is a common thing amongst GP's. I've never quite understood if it's ignorance or monetary. Either way it's wrong. Surely the idea is to help someone in pain? Good luck, I got mine sorted... eventually!

Login to add comments

Share This

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