OUCH(UK) Organisation for the Understanding of Cluster Headache


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Need advice

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#1 Fri, 21/05/2021 - 11:01
Last seen: 1 year 7 months ago
Joined: 21/05/2021 - 10:47

Need advice


I am new to this whole writting in forum things but I have been reading them since my diagnosis and they have been really helpful! But I just wanted to ask a few questions and share my experience to see if anyone has had similar issues  and if they found any treatments that work. 
         So I'm 20 years old and had my first attack at 16, I was told for 2 years I was being dramatic and was just trying to avoid school but after two years I got diagnosed with cluster headaches and chronic migraines. I have been on all forms of subtriptiman (injection, nasal spray etc..) but they didn't really help and made me feel incredibly unwell. I have also been on verapamil, steroids and troprimate but none have helped. The only thing that has work has been my oxygen therapy but recently even that hasn't worked to manage the pain and I've been admitted to hospital. I have been told that they want to try treating me with lithium and wondered has anyone been on it before? Are the side effects bad? Or they want me to use the electronic device but I have to wait for referals which take forever.
          My final question is just about anyone who is unable to work with these headaches and what route did you go down as my clusters are becoming so frequent I'm struggling to attend my job. Thank you for any help you guys have 

Sat, 22/05/2021 - 06:09
Dorothy Trustee
Dorothy Trustee's picture
Last seen: 22 min 10 sec ago
Joined: 19/02/2014 - 10:16

Hi Madz
Sorry to hear you have CH as well as migraines. I was 19 when I had my first attacks of CH. I didn't get referred to a headache specialist and it was many years before a GP diagnosed ECH so at least you're on the right track. I haven't tried lithium but you would probably benefit from giving our Advice Line a ring on
0800 6696 824 The advisors are either sufferers or supporters so they know their stuff. Have you been able to try a demand valve with your oxygen? It can cut the abort time right down but it depends where you live as to whether your 02 supplier issues them. Give them a ring to find out. There's a form in downloads for this https://ouchuk.org/downloads

Is the device you mention Gammacore? That's worth a try and has been successful for some but not all treatments work for everyone.

Give the Advice Line a call. They'll check where the nearest headache specialist is in your area. Best of luck and I hope you don't wait too long for a referral.


Dorothy (Trustee)

Sat, 22/05/2021 - 09:26 (Reply to #2)
Last seen: 1 year 7 months ago
Joined: 21/05/2021 - 10:47

Hi Dorothy

Sadly  I've been admitted to hospital this weekend but I'll give them a call when I'm out Smile thank you for the advice xx 



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