My Nonprofit Reviews

CHSG changed my life. I had been misdiagnosed for 6 years with migraines and sinus headaches and after many failed medications I had turned my back on doctors and on hope itself. Finding CHSG gave me the information and support I needed to find a specialist neurologist and finally get an appropriate treatment plan. I now have assess to the best known treatment for clusters. Life is still difficult, there is no cure, my condition has deteriorated and I spend a good part of each day in pain. BUT I never feel alone and always know that if things get really bad I can reach out to those who truly understand. The admin team are outstanding and devote so much time to supporting the group and sharing information and the group members must be the most compassionate, caring, good humoured and strong individuals I have ever had the pleasure of encountering. No judgement, no pseudoscience, just pure love, support and excellent advice.

I have suffered from CH for six years and have been a member of CHSG for around 3 months. The pain of CH is totally debilitating and the anxiety and depression which accompany this condition can be equally as crippling. For 6 months of the year I am a perfectly healthy, positive, driven person and for the other 6 months I am anxious, depressed and exhausted and spend around 3-8 hours a day writhing in agony. CHSG were a life line for me during my latest cycle which coincided with my final semester at university. With all of the stress and the constant pain, I was questioning my capacity to cope with it all much longer and fear that my mental state was rapidly deteriorating to a dangerous low. CHSG welcomed me with so much warmth and a level of understanding that can not be found amongst non-sufferers. On an emotional level, the group were like a backbone to me, holding me up when I felt at my weakest, encouraging me to hang on for better days. However, CHSG also provide outstanding practical advice. After seeing endless doctors and being misdiagnosed with a whole host of other condition, I had given up on medical help but with the advice and support of CHSG I was finally able to get a referral to a neurologist who specialises in headaches and facial pain. After 6 years of suffering alone, with no form of effective treatment, I am now a member of an amazing support network and am able to reach out to those who understand to offer care and be cared for, I am under a neurologist who is the first of many many doctors I have met to understand this condition and I am armed with a with arsenal of effective medications for when the next cycle hits me.

Coping with the pain and psychological impacts, trying to get a proper diagnosis, to see a good doctor and to get the right medication for CH is a bit like an uphill battle and until I found CHSG I felt that it was a battle I could not win. Now with a small army of clusterheads behind me, willing me on and offering brilliant advice and support, I feel strong enough to face this condition and to take the steps necessary to reduce my pain. CHSG consists of some of the most compassionate, loving and genuinely kind hearted individuals I have ever had the pleasure of encountering and I am very grateful and proud to be a part of the CHSG family.