Hi! A newcomer to this message board! I have been diagnosed with occipital neuralgia, and it is located pretty much in one spot. Am interested in meeting others who have found some answers. It can be quite painful, at times.

Mieke Taz

Hi Mieke, and welcome to NeuroTalk! There are a lot of informative forums here with lots of friendly and helpful people. I've posted a link below for the Occipital Neuralgia forum.

http://neurotalk.psychcentral.com/forum105.html

Hi Mieke - my husband has this painful condition and has been dealing with it for about five years now. Before he was diagnosed, he spent three months in bed in complete darkness, coming out only to eat and use the bathroom. Finally, we were sent to a pain management doctor who has helped him with this condition. He gets the greater and lesser occipital nerves burnt (radio frequency ablation) on both sides of his head. The first injections lasted three years! What a relief!! He also takes Morephine Sulfate twice daily, which seem to keep things under control. He does have some break-thru episodes, lasting maybe 6-8 hours and he simply has to go to bed to sleep it off.

I hope you find the relief you deserve....this is a very mean disease, and one which takes time not only to diagnose but to get under control for some patients. I wish you well and much luck with your recovery!

Suzy

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

Darlene

welcome to neurotalk ... there are lots of friendly and supportive people here so jump right in and start posting ... should you need help, don't hesitate to ask someone ... we are here to help ... again

Hi Mieke,

Welcome !

I suffer from ON for 10 years now. My own experience is different from many. My ON was caused by Neurosurgery 10 years ago where the Surgeon at the time cut my Greater Occipital Nerve. The Nerve died. Resulting from ON. I have tried all RX single and in cocktail. NOTHING WORKS !...I even tried Occipital Brain Stimulator. This did not work either because the Greater Occipital Nerve is dead. Best formula for me is rest, no light, no noise and taking Hydromorph with Tramacet at a breakthru. Everyone has their own experience and own remedies. What works for one patient doesn't work for the other. RX and other therapies like Massage Therapy, Heat or Cold at the base of the neck, forehead, are some things that work and could possibly provide you with more relief. If you are not getting ahead with your current Dr., go onto the next until you find the one that understands your illness and condition. Their are lots and lots of Pain Doctors out there, but there are only a handfull that really know their stuff. Good Luck and all the best. Wishing you a pain free day. Check out pubmed for more info that comes along in the research of medicine and treatment of this condition. Take care.....Lorne

Hi Mieke, I get this several times a week, and it is very hard to shake off. I find a mixture of pain meds, muscle relaxant and rest is the best.
My pain dr thinks that mine is probably caused by a very tight muscle that runs from the neck to the shoulder. It does all get sore together so I think he's on the right track.
Will be starting a special exercise/ stretching program soon to improve overall muscle tone and see if that does the trick.

Just saw my GP and he says that conventional pain meds are useless for ON. I tend to agree as they hardly make a dent.
He said that epilepsy drugs can be beneficial, but are expensive.
He gace me some neurontin to try.
One good thing when the headache is there-no way to think about depression! Can't hold a thought.

Hi Mieke, and welcome to NeuroTalk!

I have suffered with occipital neuralgia for three years. I am a registered nurse and haven't been able to work for the last two years. It took me about two years to finally get properly diagnosed, once diagnosed i went through countless treatments and medications. As my o.n. progressed to three to four attacks a week and the pain being almost unbearable I decided to do some research on if a tooth could be a main cause of my o.n. Through my research I found that a bad tooth can be a cause. I had a tooth which had a root canal several years ago and the tooth had been bothering me for some time and on occasions i would develop an abcess, the tooth was on my left side and that was the side my o.n was on. I decided to have the tooth pulled and l couldn't believe how much better I felt and as the site healed my o. n. gradually went away! So have your teeth checked, it seems so simple
but you have nerves that branch off your teeth and eventualy connects to the occipital nerve. I feel so much better that I am now looking to go back to work. A med that also helped with the pain was Maxalt XL 10mg also prayer works great too.