OUCH(UK) Organisation for the Understanding of Cluster Headache


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#1 Fri, 05/03/2021 - 23:03
Last seen: 3 years 3 months ago
Joined: 18/04/2020 - 19:22


How has your life changed since being diagnosed with cluster headaches ?

I have episodic cluster headaches  which seem to come alternate years. I also juggle chronic migraines, primary stabbing headaches and allodynia. I can't tolerate Various meds such as verapamil, candasartan or toperimate. I was having GON blocks but they didn't work so moved over to Botox which now isn't working so having a mixture of GON, SON and Botox. Oxygen was okay but made me nauseous,  I also tried gammacore but it didn't really work for me. Next week I'll be meeting the hospital to possibly start the antibody treatment. 

so my question is: How has your life changed since being diagnosed with cluster headaches ?

mines constant uncontrolled nausea, constant photophobia so I wear sunglasses most of the time, recurrent falls and numerous abscences from work. I'm taking more time for self care to reduce stress etc. Just wondered if anyone else in the same boat and how they have managed through self help. Etc




Cluster headache, Primary stabbing headache and Chronic migraine sufferer, ME/CFS and Fibromyalgia sufferer

Thu, 11/03/2021 - 21:14
Lay444's picture
Last seen: 2 years 1 week ago
Joined: 30/01/2021 - 21:34

Hi Kelley, 

I hope you are well Smile I often wonder the same. I wonder how people 'cope'. I try too keep my life as 'normal' as I can. Only a handful of people know I am diagnosed, I find this helps me as I can go for support when I need it but also don't have people asking me if I am okay all the time. I always plan if I am going out, including routes and I never go out in the evening as my attacks are pretty much like clock work. I used to get nervous about going out at all but 5 years in I've chose not to let it rule me like that. I am currently in month 8 of my cluster and have 3 on average per night, i am waiting for another neurology appointment on the 23rd. Some days I feel deflated and like everything is a battle and some days I feel I could take on the world! Self care is so important and I try not to be hard on myself Smile

Hope this gives you a little glimpse into how my life has changed Smile

Layla xx



Sat, 13/03/2021 - 10:03
Dorothy Trustee
Dorothy Trustee's picture
Last seen: 2 hours 1 min ago
Joined: 19/02/2014 - 10:16

Hi Kelley and Layla

I thought you might be interested to know from a veteran CH sufferer that i have been episodic since age 19 and I'm 73 now. When i first started having the attacks i had a hard time convincing my GP about how severe the pain was but i was advised to just take my painkiller of choice, which of course did nothing. After more than a decade of annual bouts with no treatment, a new GP arrived, diagnosed me with CH and did try to help but to no avail. I was in my early 50s before I discovered OUCH (UK) and high flow oxygen therapy - my first experience of being able to get some relief from the torture. By that time my bouts were every other year until i was over 60 then it changed to every two years. My last bout was five years ago and counting. I'm hoping this continues but who knows... I did manage, in between bouts, to have a pretty amazing and happy life and brought up a great family with my super supportive husband. The best defence is keeping yourself up to date with available treatments. OUCH is lucky to have Professor Peter Goadsby as Patron/Chairman and as members you'll have received an email re a YouTube question and answer session with the experts. I hope you'll be able to register for that and join the session.

Dorothy (Trustee)

Dorothy (Trustee)

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