I am a new user to this group but have read everyone’s comments regarding Occipital Neuralgia and very interested to read that everyone has right sided head pain, as I do too.Almost 13 years ago I collapsed and hit my head and have been living with constant head pain which has been diagnosed as ON and it is really miserable and changes your life. I have seen 2 Neurologists and had numerous MRI scans over the years all of which have, thankfully been normal. I am fortunate in being under the care of an excellent pain management Dr who,over the years,has tried numerous nerve block injections in my head and neck which have only helped short term. I also have arthritis in my neck and degeneration in my spine which, I have been told contribute to the pain as does stress. Over the years I have become very sensitive to most medication but have been taking a very low dose of Pregabalin. Other than that I take Panadol Xtra daily for the pain but nothing really touches the sometimes excruciating pain. Like most of you my pain starts across the back of my head in the occipital area on the right side, then the pain moves up to the top of my head above my right ear and when really bad I experience severe pain behind my eyes. I also suffer from TMJ (teeth clenching) which, again aggravates all the pain. This is my story in a nutshell and I hope others will relate to some of this and know you are not alone. Persevere as it has taken years for me to actually get a diagnosis and help.
I have had Occipital Neuralgia (also right side) ever since brain surgery that went wrong. Mine is due to damage from cutting through the Greater Occipital Nerve when performing a craniotomy.
I have tried every possible painkiller, and am currently on Carbamazepine 600mg, Pregabalin 300mg, Morphine 1500 mg, and a Ketamine nasal spray for when the pain is really bad. I also take medical strength CDC daily as needed.
I have also tried Botox and Lidocaine block injections with limited success. Would work for a couple of days, and that was it.
I had RFAs (Radio Frequency Ablation) 4 times in the US. The last one was performed by a good Doctor, but ended up burning a nerve in my head, giving 10/10 pain. I was on a very high-strength Ketamine drip for a few days in the hospital, which helped to calm things down. It is my feeling that this procedure should be banned in the US and replaced with the Pulsed RFA at a lower temperature. I have just had this in the UK and had no bad side effects. This was done by Dr Murli Krishna at the Pain Spa in Bristol. I can’t say enough good things about this Doctor and how he took care of me. Highly recommended. https://www.painspa.co.uk
Where in the world are you based? This will change the type of pain block and RFA you are offered.
I am so sorry to hear what you have been through and the pain really takes over your life. In my case I can’t plan anything as I never know from one day to the next when I’m going to get horrendous head pain. Having said that I had my last nerve blocks in April and this time my Pain Dr tried something slightly different and also did nerve blocks in my neck under general anaesthetic and I have to say for the first time I’ve had better relief and for a longer period (3 months so far) and have managed to reduce my daily painkillers. I too have had pulsed radio frequency a couple of times with little success. Thanks for recommending your Pain Specialist but I am living near Heathrow Airport however I have been seeing an excellent Consultant for several years now. It’s interesting when you hear just how common this seems to be. I have recently been referred to a Pain Management course which teaches you how to cope with chronic pain. I am unable to attend the course as I care for my husband but recently had a one to one appointment with one of the Pain Physiotherapists who pointed me in the direction of some very good reading.I must admit to being very sceptical but I actually found it very interesting and useful. Thanks for contacting me and I wish you well.
I highly recommend talking to Dr Murli Krishna (you can say Oliver recommended him) and asking for advice. It might be that you are having the same procedure he offers, but he will have good insights in any case.
Thanks Oliver I will keep this in mind. Best wishes Helen