OUCH(UK) Organisation for the Understanding of Cluster Headache


Advice Line

0800 6696 824

Chronic diagnosis

2 posts / 0 new
Last post
#1 Thu, 04/07/2019 - 21:07
Last seen: 5 years 2 weeks ago
Joined: 28/06/2018 - 19:19

Chronic diagnosis

Not been on here for ages due to my eldest son struggling with recent diagnosis of epilepsy.

I got my official chronic diagnosis today. I'm going to start on topiramate as preventative I had been on verapamil but due to not having a consistent neurologist as I'd been seen privately via nhs for original diagnosis there was no follow up after care and it didn't help and it made me feel awful. Which I just couldn't have with the way my son has been so I've managed with 02 sumatriptan injections and nasal and using cold energy drinks since.

The dr I saw today has said I will be getting nerve blocks but it will be few injections in different parts of head. Has anyone any experience of them? She also showed me the gammacore as last resort due to cost but basically if these didn't work and preventative then that would be my next step.


Wed, 31/07/2019 - 09:29
Dorothy Trustee
Dorothy Trustee's picture
Last seen: 2 days 14 hours ago
Joined: 19/02/2014 - 10:16

Sorry for the late reply, Sarah! You could have a chat to one of our helpliners about treatments but the nerve blocks do seem to work well for a lot of people so good luck with that. The gammacore also helps a lot of sufferers. I'm sorry to hear about your son, I hope everything settles down for you soon.


Dorothy (Trustee)

Login to add comments

Share This

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