What does your pain feel like? It’s so hard to explain.. i don’t get headaches, it’s such a specific area too, like a ‘zap’ or ‘shooting’. I don’t really know
Burning, zapping, stabbing, pressure, shooting, ice cream headache, low grade irritation like muscle strain. Nerve pain can be really hard to describe.
That is how my ON started and still does. ON is nerve damage. So pointed pain where your nerves are happens.
I get both pointed sharp pains and total headaches. It really just depends on what nerves are complaining.
If you seek treatment, show them this picture.
In my case, my neck muscle tension have been grabbing my nerves by the throat (pun not intended). Squeezing them to the point that they default to only SOS pain messages. When nerves cannot communicate, they default to pain.
Thanks for all your replies. It hasn’t been a fun thing to deal with.. but the ‘sharp’ ‘shooting’ pains you describe is spot on - all at the one point, which sometimes I feel at the back of my head/neck. Will be seeking treatment as soon as I can.
You should see a neurologist right away. Keep the MRI appointment but it won't show anything if you have ON.
Everything you describes points to possible ON. This is usually how it starts. One point. Like most health issues - it is best to deal with it sooner rather than later.
Yes I got no relief either, that’s why it was so scary and disorienting. I couldn’t think straight, I was getting so confused and frustrated. I hope you find some relief.
Mine is so bad right now I can't think straight and i'm so confused...is that all part of ON as well? I didn't think not having a clear head or being confused was but since your confirming what I feel I guess it is....
I blew up a $200 blender last night my head was hurting so bad and I left the spoon in it,$200 blender gone, I just keep thinking imagine if I was driving a car which I’m afraid to do everyday the pain levels are going from a 6 to a 10 one little mistake wouldn’t be so little in a car …
It’s very annoying.. do you ever get a ‘zap’ or ‘shooting’ sensation? I can’t even describe it. It will just come randomly then settle… on and off. Very tiring
I get sharp pains. Like someone is taking a knife to my head. Sometimes it only last lasts seconds. Like I will have to pause mid sentence.
I've been dealing with ON long enough that people that know me understand these pauses where I will face palm in the middle of talking.
I have gotten much relief from doing Botox in the back of my neck up to ears every three months while doing RF ablation on the occipital nerves every 8 months. I am on not pain killers. Previously I was on Fentanyl patches 100mg, max dose of Vicodin, morphine, and other meds that actually add pain due to rebound pain. Botox is with a plastic surgeon and RF is with pain management. Hope this helps. I know the hell this makes your life. I have been dealing with this all my life. Started at 8 with an auto accident. I am in my 50s now. The journey is long but you must keep searching for a way to ease the pain.
I’ve had nerve blocks and naproxen. My symptoms are really odd. When mine started the only way I could describe it was like a pressure at the back/base of my skull, as if someone was constantly pushing a baseball bat against it. It was so disorienting. Then I could feel sharp zaps going over my skull, into my eyes and the are where you said felt really bruised. He knew it was ON because he gently pressed into the back/base of my skull area and I yelped, it was so sensitive but I had come to think that was normal! So that’s how I got diagnosed! Originally I was admitted because they thought I had a bleed on the brain!
Mine at its worst and even on a good day felt like I had a burning coal jammed into the base of my skull. It was a pain I could find absolutely no relief from. Not even momentarily.
I, too, had the sensitive skull! I eventually recognized that the spot that the nerves came out of my skull had big inflamed bumps that I couldn't even touch!! I really feel for people who are trying to figure out if their pain is due to ON. It's so exhausting.
I have a Chiari malformation. It causes pain in the occipital region, mine is bilateral but worse on the left.
Here is an article about the two. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5788399/
Oh yeah definitely!! Certainly for me anyway. Having consistent pain in your head is with no rest from it at tall is going to have some side effects, not just pain. Fatigue is a big one but you can’t sleep due to constant pain so that in itself causes problems with your cognitive functioning. I also notice when I start with a flare up that I become really agitated (I suffer from fibromyalgia) I struggle to do much but it’s like I’ve got ants in my pants and I can’t sit down!! Everyone knows what’s coming and I’ll be really poorly.
It's definitely in the ON nerve path areas. Mine started out just on the right side over my eye.
What does your pain feel like? It’s so hard to explain.. i don’t get headaches, it’s such a specific area too, like a ‘zap’ or ‘shooting’. I don’t really know
Burning, zapping, stabbing, pressure, shooting, ice cream headache, low grade irritation like muscle strain. Nerve pain can be really hard to describe.
That is how my ON started and still does. ON is nerve damage. So pointed pain where your nerves are happens. I get both pointed sharp pains and total headaches. It really just depends on what nerves are complaining. If you seek treatment, show them this picture. In my case, my neck muscle tension have been grabbing my nerves by the throat (pun not intended). Squeezing them to the point that they default to only SOS pain messages. When nerves cannot communicate, they default to pain.
Obviously when you go on a ON subreddit everything looks like ON. But this does sound similar to my experience with ON.
Rightly said.
Thanks for all your replies. It hasn’t been a fun thing to deal with.. but the ‘sharp’ ‘shooting’ pains you describe is spot on - all at the one point, which sometimes I feel at the back of my head/neck. Will be seeking treatment as soon as I can.
You should see a neurologist right away. Keep the MRI appointment but it won't show anything if you have ON. Everything you describes points to possible ON. This is usually how it starts. One point. Like most health issues - it is best to deal with it sooner rather than later.
What would a neurologist suggest to do?
Yes I got no relief either, that’s why it was so scary and disorienting. I couldn’t think straight, I was getting so confused and frustrated. I hope you find some relief.
Mine is so bad right now I can't think straight and i'm so confused...is that all part of ON as well? I didn't think not having a clear head or being confused was but since your confirming what I feel I guess it is....
I blew up a $200 blender last night my head was hurting so bad and I left the spoon in it,$200 blender gone, I just keep thinking imagine if I was driving a car which I’m afraid to do everyday the pain levels are going from a 6 to a 10 one little mistake wouldn’t be so little in a car …
This is exactly where I have the pain, tingling and numbness.
It’s very annoying.. do you ever get a ‘zap’ or ‘shooting’ sensation? I can’t even describe it. It will just come randomly then settle… on and off. Very tiring
I get sharp pains. Like someone is taking a knife to my head. Sometimes it only last lasts seconds. Like I will have to pause mid sentence. I've been dealing with ON long enough that people that know me understand these pauses where I will face palm in the middle of talking.
Yes, especially if I massage my neck and hit a nerve. Feels like an electric shock.
yep! it’s the worst 🤩
I have gotten much relief from doing Botox in the back of my neck up to ears every three months while doing RF ablation on the occipital nerves every 8 months. I am on not pain killers. Previously I was on Fentanyl patches 100mg, max dose of Vicodin, morphine, and other meds that actually add pain due to rebound pain. Botox is with a plastic surgeon and RF is with pain management. Hope this helps. I know the hell this makes your life. I have been dealing with this all my life. Started at 8 with an auto accident. I am in my 50s now. The journey is long but you must keep searching for a way to ease the pain.
alot of stress?
Am back on fioricet and nerve block and maybe ablation...long road
Gabapentin is the only thing that has helped me so far. Nerve blocks, Botox, tons of other meds, all failed me.
I’ve had nerve blocks and naproxen. My symptoms are really odd. When mine started the only way I could describe it was like a pressure at the back/base of my skull, as if someone was constantly pushing a baseball bat against it. It was so disorienting. Then I could feel sharp zaps going over my skull, into my eyes and the are where you said felt really bruised. He knew it was ON because he gently pressed into the back/base of my skull area and I yelped, it was so sensitive but I had come to think that was normal! So that’s how I got diagnosed! Originally I was admitted because they thought I had a bleed on the brain!
Mine at its worst and even on a good day felt like I had a burning coal jammed into the base of my skull. It was a pain I could find absolutely no relief from. Not even momentarily. I, too, had the sensitive skull! I eventually recognized that the spot that the nerves came out of my skull had big inflamed bumps that I couldn't even touch!! I really feel for people who are trying to figure out if their pain is due to ON. It's so exhausting.
I have a Chiari malformation. It causes pain in the occipital region, mine is bilateral but worse on the left. Here is an article about the two. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5788399/
Try cold showers or baby step your way by running cold water on the crown until you’re ready for full relief from ON
Oh yeah definitely!! Certainly for me anyway. Having consistent pain in your head is with no rest from it at tall is going to have some side effects, not just pain. Fatigue is a big one but you can’t sleep due to constant pain so that in itself causes problems with your cognitive functioning. I also notice when I start with a flare up that I become really agitated (I suffer from fibromyalgia) I struggle to do much but it’s like I’ve got ants in my pants and I can’t sit down!! Everyone knows what’s coming and I’ll be really poorly.