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Severity worsened - unsure why

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#1 Sat, 11/03/2023 - 11:16
Last seen: 2 weeks 4 days ago
Joined: 20/08/2021 - 11:41

Severity worsened - unsure why

Hello all - this is my first post on Ouch, I've been a silent reader up until now.

I'm 28 and I've been an episodic CH sufferer since I was about 21 years old. I've tried a lot of different medications and sumatriptan injections have been my saving grace.

I've always typically had headaches at the same time every day, for a few weeks, and then they're gone for ages as you'd expect. However, for the last 6 months they've been nonstop and I don't know why.

My headaches became more ferocious, more frequent, more unpredictable. I've gone from 6 years of having 1-2 headaches per day to having 6 headaches per day. I never had a headache at night before and now I'm getting woken up by 3 headaches in a single night, every night. I can only use sumatriptan twice daily so it's really caught me off guard! I'm not getting more than a few weeks off without the headaches coming back.

I feel like I've transitioned into a chronic sufferer for no reason and I don't know why.

It's affecting my work, my daily life, and I'm desperate to try and get a handle on this it because it’s jeopardising some of the most important years of my life but I'm really struggling.

My GP is relatively supportive but also clueless and my neurology appointment's already been delayed by 20 months. I'm welcoming any advice with open arms.

Thank you kindly, Alexander.

Sat, 18/03/2023 - 10:26
Last seen: 1 week 3 days ago
Joined: 26/02/2014 - 17:02

Hi Alexander.

CH bouts can change. My current bout is relatively mild at only 2 attacks per day, but I've managed to squeeze 8 attacks into a day regularly in previous bouts.

Sleep is a trigger during a bout for a lot of us. Each bout severely impacts the quality of our daily lives; it is a disability after all.

Your Doctor may be clueless, but they have computers and books: Cluster headaches are on the headache tree under TAC (Trigeminal Autonomic Cephalagias) not Migraine (where most of them look) and section in their BNF, if I remember correctly.

Hopefully, they can decide to help you while you wait for a Neurologist appointment.

Thu, 30/03/2023 - 11:58
Dorothy's picture
Last seen: 6 hours 38 min ago
Joined: 19/02/2014 - 10:16

Hi Alexander

Sorry for late response but wondered whether your GP has referred you to a headache specialist neurologist and do you have oxygen and a demand valve?  You would benefit from having a chat to someone on our Advice Line team on 0800 6696824. 

Hope by now your head has calmed down!


Thu, 30/03/2023 - 20:34
Last seen: 2 days 7 hours ago
Joined: 01/12/2014 - 09:25

Sorry to hear that Alexander. I posted on 19/10/22 that my last cluster episode had changed also. it went crazy, like nothing I had experienced in some 30 plus years of having this lovely headache! I thought it may be down to changes brought on by Covid ? but thats just a stab in the dark I guess? I am now trying new drug treatment, my GP is doing his best, but like you I still have yet to see a neuro. I'd definately give the the oxygen route a go if you can. Good luck! 


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