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OUCH(UK) Organisation for the Understanding of Cluster Headache

New and looking for advice

4 posts / 0 new
Last post
#1 Sun, 16/04/2017 - 23:05
Last seen: 1 week 1 day ago
Joined: 16/04/2017 - 22:26

New and looking for advice

Hi all, 

I'm a 25 year old male otherwise healthy apart from being diagnosed with CH in October. After a lot of faffing from my GP (I get the feeling they don't have a clue what to do with me!) I was prescribed Sumatriptan and Verapamil. My current dose of Verapamil is 240mg but I am still having frequent attacks. I had an ECG in preperation of increasing the dosage but my GP was unhappy with how low my resting heart rate is and reffered the results to a Cardiologist. Nearly 2 months on (!) and I still haven't had any word back from the Cardiologist. If this dose cannot be increased, what other medication is available in order to prevent attacks? I feel I need to tell my GP what needs to happen as he does not seem to know what to do with this condition. 

As for the Sumatriptan, I am taking this in tablet form when I have an attack and feel that it is taking too long to have an effect. I am also suffering from some pretty intense side effects: severe nausia, sore muscles particularly in my jaw and throat, and increased urination. These side effects last from between 4-8 hours and have made me question whether I really want to be taking this stuff However, I have found the pain of a CH to be very persuasive. Does anyone else have experience of side effects from Sumatriptan? Will switching to a subcutanious injection reduce side effects? Is there any other abortive medication that I can try that may not make me feel so bloody ill afterwards? 

I have read in a few places that CH sufferers are usually reffered to a Neurologist with a specialty in headache disorders. Is that through my GP? How easy are they to find? I live in the North West of England, can anyone recomend someone? 


I'm sorry about being full of questions but I am currently getting no where with my GP leading on this and feel that I need to start taking control of this before it takes control of me. 



Mon, 17/04/2017 - 10:17
Last seen: 17 hours 50 min ago
Joined: 21/03/2012 - 15:16

Hi Cragrat [interesting forum name!]

I suggest two things, first of all click on the 'Cluster Headache' on the blue bar at the top of the page, and from the dropdown menu select 'The Bascis', which gives yo ufull information on how to get a referral to a headache neuro, which is important, as they will see you at regular intervals and monitor your condition and adjust your treatments accordingly.  Second, on the same drop down menu, select 'Treatments' and you will see there the current abortive and preventive treatments available. 

Then I suggest you call the helpline to discuss any questions or queries you have, call 01646 651979 leave your name and number and one of our volunteers - all of whom are sufferers or supporters of sufferers - will call you back between 10.00 am and 2.00 pm, or at a time you state is convenient to you.  Please note all calls are returned from a withheld number.

Hope t his helps and welcome aboard! 



Mon, 17/04/2017 - 14:50
Last seen: 1 week 1 day ago
Joined: 16/04/2017 - 22:26

Thanks for the advice and welcome Val. 

As for the forum name, I used to be an avid climber and aquired the nickname "Crag Rat", which seems to have stuck around. Smile

Mon, 17/04/2017 - 17:39
Last seen: 7 hours 30 min ago
Joined: 26/02/2014 - 14:26

Welcome from me too!  You do need to get a confirmed diagnosis from a Neurologist preferably one who is a Headache Specialist, and as Val has said a chat with the Helpline will help with this.