OUCH(UK) Organisation for the Understanding of Cluster Headache

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#1 Sat, 06/01/2024 - 20:53
edmundsd
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Last seen: 3 weeks 2 days ago
Joined: 20/07/2022 - 17:12

Treatment

My partner is in his sixth cycle approximately of cluster headaches and they tend to occur twice a year. He was getting periods of remisison of 2 years plus but no longer unfortunately.  This cycle started off unusually for him as he was only experiencing the odd headache and they have gradually increased so they are now occurring up to 7 over a 24 hour period mostly at night. They tend to start approximately an hour after he goes to bed. We are now into our sixth month. Fortunately he now has a neurologist and has just had an MRI and CT scan and has a pending appointment. he has been using a supitrapan spray and sometimes they give temporary relief. He has had steroids but did not like how they made him feel and he has had indometacin which we initially thought had worked but in hindsight he was at the end of a cycle and apart from the first time they have not worked. He is now trying topimrate but i am going to get him to talk to his GP about verapamil and sumatripan epi pens based on what i have been reading on here. His Consultant is also going to prescribe oxygen for him. She has also talked to him about a nerve block. He is very sleep deprived and his quality of life is seriously impacted. There do not appear to be any triggers but he has given up sugars, is not drinking, reduced caffeine but they are worse than when he was eating chocolate, drinking and having caffeine. Has anyone got any other ideas/comments. 

 

Sat, 06/01/2024 - 21:43
edmundsd
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Last seen: 3 weeks 2 days ago
Joined: 20/07/2022 - 17:12

does topimrate work for anyone?

 

Mon, 08/01/2024 - 18:47
Dorothy Trustee
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Last seen: 2 days 15 hours ago
Joined: 19/02/2014 - 10:16

Hi Edmund

Why not give our advice line a ring on 08006696824 and have a chat. It's always helpful to speak to someone who knows what it's like. It's good that your consultant is organising oxygen for him and a nerve block can often help. I haven't personally tried topiramate so can't comment on that. 

Good luck and i hope he finds the oxygen helpful.

Dorothy (Trustee)

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