OUCH(UK) Organisation for the Understanding of Cluster Headache


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#1 Sun, 11/07/2021 - 17:59
Last seen: 1 year 2 weeks ago
Joined: 18/06/2020 - 12:40


I was diagnosed with CH by a neurologist last year.  I have oxygen but it doesn't seem to be as effective as sumatriptan. However, my GP only gives me 6 tablets per month on repeat prescription.   Is this normal?  I understand the medication is expensive.  I am having at least two bouts of headaches a day and have done so since May, so require more.  Any advice gratefully received.

Sun, 11/07/2021 - 21:35
DavidH 7
Last seen: 2 months 3 days ago
Joined: 26/02/2014 - 15:13


With my always important disclaimer that I'm not a GP  or similar ... that doesn't seem okay to me, on a number of levels.

I'd go back to your neurologist, perhaps after speaking to someone at OUCH.

Sumatriptan is more effective as an injection (generally, at the maximum of two per day) - tablets just take too long to work.  Assuming no underlying health issues, it doesn't seem unreasonable to request this.

Off the top of my head (not a GP etc ... ), you could plausibly take four tablets per day, relatively safely.  I had a few years after diagnosis where I was taking tablets rather than injections and I thought they were amazing ... but, then, I was also often crying myself to sleep in pain. 



Mon, 12/07/2021 - 09:36 (Reply to #2)
Last seen: 1 year 2 weeks ago
Joined: 18/06/2020 - 12:40

Thank you.  I am hoping to pick up some Sumatriptan injections today but my GP has only given me 10.  I will go back to my neurologist.

Sat, 31/07/2021 - 11:11
Last seen: 6 months 2 weeks ago
Joined: 31/07/2021 - 11:01

I think sometimes you have to insist. Not during this episode, but my last episode, at first my GP was only willing to give me 3 or 4 Sumatriptan injections, until I was insisting on more, because I was getting 2-3 heaaches a day and was working out of the house 5 days a week, so I'd have been going back for new pescriptions like 3 times a week. 

If you need more, you need to make your doctor understand that. 

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