Roach

I have a wonderful and supportive husband, two boys aged 6 and 11, a dog, two cats, a snake and a lizard. We live in the woods just outside Salisbury, Wiltshire UK. I hand dye yarns and make accessories for knitting and crochet from my colourful studio in the woods.

I have been ECH since 2006. 

Initially, my CH coincided with a large brain tumour so wasn’t properly diagnosed until the following year when the attacks returned and the tumour hadn’t.  I was diagnosed Verapamil which although it worked in the first few instances, it quickly made the condition worse: the episodes longer, and much more frequent; and by 2013 I was having 3-4 episodes of 8+ weeks each year! By this point I was also on the highest dose and my blood pressure too low so I had to stop. Fortunately I heard about Batch’s vitamin D regimen which I can honestly say saved my life. I managed to get down to 1 episode every 18 months, and then 1 episode every 2 years. However, my last episode in Jan 2020 was the worst to date and despite a GONB and a MCNB I was having 10+ attacks in a 24hr period. O2 caused huge rebounds within 1 hour, and my only respite was suma and zomig which I know made the situation worse. 

I discussed the concept of busting with my neurologist who acknowledged that they do work but obvs could not condone their use. We tried everything, but the episode lasted until the end of April and after 16 weeks (which I know was probably so long due to my dependence on triptans) I vowed to seek an alternative prior to the next episode due in Jan 2022… 

So, here I am. I have been supported by members of this organisation. I am also a moderator on Cluster Headache UK Facebook page, but we have been warned by FB not to talk about mushrooms or busting. However, I have now found a reliable source and I have now done 3 doses. I am desperate to prevent my next cycle so lets see…