Occipital Neuralgia Online Support Group

would it be like a constant, non-stop migraine that sends electric shocks from the base of your skull, up to behind your eye causing lots of eye pain and in many cases vomit and nausea?

how would you describe it?

The reason I ask is because I feel that I need to educate people around me....

When I mention ON pain and how devastating headaches can be.... they reply... OH MY GOD ME TOO!!! I HAVE THIS CONSTANT TENSION ON MY SHOULDER AND I GET THESE TENSION HEADACHES LIKE ONCE A MONTH WHERE I NEED TO MASSAGE MY NECK AND THEN I AM OK!!!

So what I want to know, is how would u describe ON..... in a way people can understand the pain better!!!!

OCCIPITAL NEURALGIA IS NOT LIKE A TENSION HEADACHE....... NOT AT ALL!!! people don't seem to get that!

I SO understand you. I to this day have this problem, "oh I have headaches too..." or "oh I get miagranes too". UGH! CMiller on here said it the best...it's a neurological problem...not a "headache"...I also say "head pain" instead of head ache and then I desribe that it is nerve pain kind of like siatica nerve pain would be for someone in their hip and legs but it's in our head...

I get the same reactions! It is SO frustrating. I have started saying siatica but in my head. THAT gets people's attention. I learned it from Chloe.

It did all change for me when my husband and I explained it as a debilitating neurological disorder. When people want to know more, I explain that we have like two large trees of nerves coming out of the spine which the greater occipital nerve being the trunk. The nerve has large branches like the lesser occipital nerve and all the branches are connected to the thousands of smaller nerves over the head right down to the nerves at the hair follicles and any of these thousands of nerves can cause pain and often all of them cause pain at once. I add that because of the severity of the pain there is also dizziness nausea diarrhea and light and sound sensitivity... that usually gets them to understand THIS IS NO SIMPLE HEADACHE/MIGRAINE. lol

I typically explain it as if someone was stabbing an ice pick through the right side of my head. With bad episodes, the ice pick is replaced by a molten crowbar and has Bobo the Elephant leaning on it.

I've also found a little education helps to explain this is not just a headache. (I love the times when I have "just a headache" because I can still function.) I was told that there are approximately 14 different nerve clusters surrounding the brain stem and branch out through the head. When one of those nerves gets compressed or damaged it starts misfiring and sending bad signals. Mainly pain. To add insult to injury, the brain stem also gets these signals and it tends to create all sorts of neurological problems. Kind of like the cheap scifi special effects for when an electrical charge shorts out a robot. And if anyone remembers their junior high science labs with the frogs you'll recall what happens when an electrical current is applied to a muscle. It contracts, right? There goes the traps, scalp, SCM, etc. More pain. Ativan take me away!

That's my version, but I'm not a doctor; just a bitter, sarcastic shell of a person that's endured a lot but thankful to know that there are many more people that have it worse.

Great descriptions you guys!!!

especially I'll use them to educate many around me who think they have ON too.... because they get a tension headache here and there that goes away with a nice bath or a walk around the park!!!

trust me!!! OCCIPITAL NEURALGIA HEAD PAIN IS NOT ANYWHERE NEAR A TENSION HEADACHE!

Vbiker, I agree with your description 100%. My pain at it's worst is the feeling of an ice pick jammed in the top left side of my head, along with the back often feeling as though I've been shot by a bee bee gun! The ice pick pain is also made worst by the fact that not only is the feeling like it's jammed in there, but then it feels as if the nerves are twisting themselves around the ice pick! I am thankful that that feeling is not always there, but enough to make you feel a bit crazy. I don't know how much longer I'll be able to work and be productive because having this condition and getting up in the morning can take all the strength you have some days, but having to go to a job and deal with the stress and chaos of a busy office environment adds a whole new element to ON pain. Man, I miss those days when I actually only had a bad headache! ON pain is in a whole other category and I wouldn't wish it on anyone!!!

i have no electric shocks never have...my headache is over cheeks and behind eyes i have itching in my hairline and eyes,sinus and neck and on top of head i have pain around and in ears ears dont pop right. they say my occipital is due to muscle spasms of the trapizious and sternomastoid muscle in neck.i do have a bulge at 3 and 4 cervical discs and 4 bone spurs in neck. but they say no pinched nerves. nothing seems to help me and my sinus seems to be involved. i hear bubbling in my ears and they itch and hurt i also get ear squeezes. i am suprised that i dont get shocks with ON but glad i dont! i would like to have surgury but they wont even discuss it with me. my nuroligist isnt the kindest man in the world. and certainly not compassionate! i wanted them to fix my neck because the cervical disc 3 i readcan afect the ears but they wont.i am at my wits end! i just cant seem to find a doc who cares!

Lori, you may have to switch to one of the drs who is actually doing the surgery, or a neurologist who works together with one of the surgeons. I have ON, but have nothing wrong with my neck or back, per the drs... I get the shock feelings in the teeth, primarliy. I have been told that's trigeminal neuralgia... GL You'll find lots of support and info here, and we also have a FB group, and Cmiller has started a web page for ON, too.

Lori, I also have the issue with my ears, in terms of the popping. My ears stop uo for days at a time, and it comprises my hearing, a lot. I have never heard of ear sneezesp- can you elaborate?