GammaCore Device & a few other questions from a re-joined member

Hi Pete

Welcome back!

I'm sorry to hear you went from being episodic to chronic. You could give our advice line a call on 0800 6696824 and have a chat. Leave your details and they'll ring you back. 

All the best.

Hi Pete

I am an episodic sufferer and was prescribed the Gammacore device three years ago, by my neurologist, Dr Silver (2023 speaker at OUCH conference) When I'm within a bout of attacks I use it three times a day, morning, noon and night together with oxygen as a preventative measure, it's certainly seems to help considerably. I was having attacks daily the worst lasting for seven hours whereas now the pain is ever present but mild. The top-up card lasts for 93 days and I request a further card, when needed, via the neurologist and it arrives in the post with the gel. Since using the Gammacore I have not needed to ask for 'nerve block' injections.

I hope this is of help, all the best - Dave 

Hi Pete I also use Gammacore and you are right about the costs. If you pay for it privately it is £300 to £400 but that is for a 90 day/3 month period. I have not had an adverse reaction to it. It work well in pain relief during an attack but I don't seem to be able to use it preventatively. I therefore have GON Block injections every few months. This has made my condition tolerable. As other commenters I hope this is of help.

Not sure if Celebrating is the right term, but I am now 'Celebrating' dealing with CH for 50 years. Like many, the first 10 years it was mis-diagnosed until I was lucky to move house and a new doctor, who actually had CH. A true understanding. A few years later, an article in the Daily Mail on Oxygen Therapy for CH changed my life. I took it to the doctor, who sent me straight to the local chemist to get both our prescriptions. No rebreather masks in those days, Taped up the holes in a normal mask, but eventually, and still do to this day, I just suck the O2 straight out of the tube.  I was always episodic, with often 6 month remitions, until 3 years ago. I caught a virus whilst at the final crescendo weeks of the CH attack, every 4 hours. The CH attack stopped, whilst I faught the virus. That was nice. Virus cured, CH came back, but with anger ..... now on 3 years of cronic. Every 4 hours. No sleep,,,, No Life... no existence... but I was "Lucky". Oxygen gave me relief and works normally within 5 minutes. The 3am wake up call was harder as it was in full flow by then.

OK. Gamma core. I have been using this for 6 months now. 1 zap in the morning, one at night. Within just two or three days the frequency reduced. The depth of pain reduced. Once the Pain is on, it doesn't really seam to work taking it away. Oxygen is still the best.

6 months on, I am getting just one or two attacks a week, rarely at night, which means I can feel an attack coming on and abate it with Oxygen before it gets into full swing. I stopped using the Gamma Core for three weeks, and thr frequency started to increase again, sadly. Only warning, ... don't put it in your hand luggage when flying, no matter what it said about batteries, as security think you have a tazer and try and take it away..... it takes an hour to prove otherise...   Twice this has occurred. Have an NHS written document and a pamphlet with you.

Try Gamma Core again. Maybe the strength wasn't high enough. Make sure you get the drooping lip symptom when applying so you know its in the right place.  Good luck