New member, living with CCH
New member, living with CCH
Well where do I start, I have known about OUCH for some time now, my neurologist suggested I join when I was diagnosed by her some 5-6 years ago but I've only just signed up realising the good the charity does.
I'm 32 married to a beautiful wife and together we have an amazing 3 soon to be 4 year old son and I'm a chronic cluster headache sufferer.
I have had 5-6 years of relentless cluster attacks with no sign of it easing or getting easier to deal with. The excruciating pain is like nothing I have ever experienced and there's no way I can describe to friends and family to get them to understand it to the true extent.
My wife is understanding and caring and tries to help guide me through the pain during an attack but truthfully there isn't anything she can do except watch or listen to me during the attacks.
I have had many different treatments to try and combat the CH however none have really done the job. I am currently on a combination of Verapamil (960mg spread over the day) I have GONI injections every three months and use 6mg Sumatriptan injections when attacks occur (at the time of writing this on average 6-8 attacks per day) this is the best combination of treatments I have had so far but it is by no means a cure. Without the Sumatriptan injections I would not be able to work and support my family, I do thankfully have an understanding employer who is aware of the condition and what I need to do when attacks occur.
I've lost employment in the past due to CH because they just didn't understand what I was going through and didn't care either.
I have been prescribed oxygen at home before but it either didn't work or took too long and I couldn't sit still long enough to use it.
Personaly for me the imigran injections are trerrible, they bruise my leg and create patchy areas of damaged tissue in my leg. The mechinism is also awful.
I have found a different manufacturer of injections and they have been a god send, Sun Pharmaceuticals produce a pre-filled single use injection pen which has a window so you can actually see when the Sumatriptan has fully gone in and do not cause the discomfort and bleeding that the imigran ones create. I urge anyone who hasn't used them before to encourage thier g.p/neurologist to swap to them.
I wouldn't wish the pain I experience during attacks and the fatigue afterwards on anyone. Its truly brutal. But I push forward and refuse to let this condition get the better of me.
My neurologist who has been my real saviour through all this (big shout out to Dr.Medcalf) has suggested and has set the wheels in motion, because of being chronic and the amount of attacks I have, I've put forward for a surgical implant where an electrical stimulator will be fitted to my occipital nerve to treat attacks. I'll be honest I'd try anything to stop the pain.
If this is successful and I am accepted for this implant I will of course keep this forum updated on progress.
I understand there are many of us who suffer terribly with this condition. I hope that reading this gives people, even if only one person some comfort to know they are not alone and to keep fighting with medical professionals to find the best solution for your situation.
If your current treatment isn't working don't be afraid to reach out to your g.p/neurologist and ask to try something different.
Your not alone.
Keep pushing! All the best,
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