"Electric Shock" type pain in my scalp!

I have autonomic neuropathy from stage three kidney failure. It first started in my small intestine, then my large intestine. Next it went to my stomach and bladder. Now it's in my esophagus, causing several difficult problems. About 3-4 months ago I started getting a pain in one spot, going up the left side of my neck. About one month ago, that same pain continued up the side of my head to just over the top of it. That pain, is like an electric shock. It only lasts maybe five seconds, but the pain it leaves behind is very painful and probably lasts 6-7 minutes. It doesn't help me but when that happens, I bend my head a little and bring my hand up to it and hold that spot until the worst is over. I always have them during daytime, never during the night. Well, yesterday at church it changed again. The electric shock type pain came, but instead of going in a straight line just over the top of my head, at the base of my head it started, then exploded like the fireworks you watch in the sky. This happened for a steady forty five minutes, without stopping at all.
A while back I saw a spine specialist and after an x ray, said it's just arthritis. I said, do you think it could be neuropathy that came from my esophagus? He said, no. I said, how do you know? He said, because I do. During the past weeks, I've been having trouble with my thinking while writing on my kindle. I've started to spell words wrong that I've know for fifty years, sound out the words to help me spell them but still make mistakes, and never put in the silent letter, I think because I don't hear it when sounding it out. I spell sentences wrong and put the words where they don't belong. And some sentences don't even make sense because I've left out words. When I'm talking, I do almost those same things. I don't understand things or what some are anymore. And, I have what I call, brain fog. When I do have it, I will wake up with it and it will last maybe 5 hours. Is this how neuropathy in the brain feels like and does to you?

Hi Deby
You probably have Occipital Neuralgia. Make sure by getting MRI's, if you have Occipital Neuralgia it will not show up on pictures. My name is Julie, I have had it also since 2013. John Hopkins has a Synopsis on Diagnosing it and the Symptoms, treatments but they do not know everything about it, It feels like it will kill you but it is not fatal just miserable as you know.
Some of the things that work for me..when you have an episode. First, I am sorry for you.❤. It is a rare autoimmune disease that one in one hundred thousand people have, no one will understand at first even neurologists can misdiagnosis you. No cure as of yet but better than it was in 2013. People are more aware now..they have a clothing line for your scalp due too sensitivity too sound, light. Some can't read or watch much TV. Try smaller scenes wear sunglasses, nerve endings could be worn down..wear clean head covering (scarf, hat, whatever works when it hurts..Soft Neck Cushion helps me a lot takes pressure off cervical that headache s go up from C2 to too of scalp .
What works..for the headaches or nerve headaches (neuralgia) that can come up too seven at a time simultaneously. These headaches that come are Ice Pick, Tension, Migraine, Burning, burrowing, icing, regular headache, cold spots, crawling, inflammation headaches feels like a city lives in your head, swimming, stabbing, cutting, squeezing, etc..regular headache migraine medicine generally does not work...Caffeine however will bring down the inflammation helps a lot, Blending Celery and berries for juice for the burning headaches, the ice pic headaches cureall eat Chili hot, Jalapenos, yogurt for tummy, avocados are wonderful..your diet has too change anti inflammatory..What Occipital Neuralgia damage to your Cervical Spine Neck and the nerve causes numerous sensations that are very scarey. The shocks are nerves misfiring. The itching is blood getting through the pinched places actually good.
What works..❤ Massage, Muscle Relaxers, Organic Vitamins( D3, Alpha Omega) B12, ) preferably powdered organic vitamin..Good Neurologist preference also updated works at University Professor, Controlled Substance too sleep over through sensations and for anxiety..Clonazepam, Ativan..Neurosimulator look into..
What is bad for Occipital Neuralgia..I
Internet
Electric Light
Movies
Loud Noise
Odd Noise
Intense People or Pressure
Too much TV
Reading
Keep room dark like Migraine
No concerts
No loud church
But pray anyway trust God he will help you..Psalm 🙏91..
Extra note..Food that helps cont..Salmon, almonds, lime, chili, Blending a juice 3x week celery berry lime, organic while milk yogurt plain, no salt, less surgar, dark chocolate..
You will learn as you go what works for you. You will adjust too the pain..very scary always, some will think you have lost your mind but you have not, this autoimmune used nerves too lie to brain..ughh..support group online, God, Good mate, Good friend or relative.probably will have too stop working..
Love ya..

Hello @juliediane222 Welcome to Connect. I stumbled upon your post and it peeked my interest. I notice you recently joined Connect, yet, you haven't posted much. I'm curious what brings you? You definitely had alot to contribute in this post, thank you for that.

The information you've provided on occipital neuralgia hits home with me. I was diagnosed with it, cervical neuralgia and arthritis in 2017 by a pain management Dr. who suggested both occipital and cervical radio frequency ablations. As I researched the diagnosis of occipital neuralgia, I was never completely sold due to the fact that my scalp wasn't so delicate to the touch and the doc never got too deep explaination beyond that. Still, I went forward and received several rounds of nerve blocks and ablations. During this time I was having electric, stabbing shocks in the sides of my head, temples, brow area and behind eyes. Not pleasant.

I was diagnosed with neuritis after a cervical ablation which felt like sparklers in my neck. Gabepentin and now Lyrica remain for me. For the most part, these shocking pains have subsided except for occasional revisits that still literally shock me and come as a surprise.

I also was experiencing intense pressure inside my head with sensitivity to light and sound. A neurologist diagnosed me with chronic migraine and prescribed botox along with monthly migraine injections. The pressure was like a vice and brought me to tears with debilitation.

2019 I was finally diagnosed with progressive small fiber polyneuropathy which I believe had existed long before the diagnosis.

Rewinding to 2013,, I was diagnosed with Fuchs corneal dystrophy and cataracts. I had double corneal transplant and cataract surgeries. My severe light sensitivity was supposed to have ceased after surgeries but didnt and became a great mystery to my cornea Dr.

The reason I explain it all is because I have always felt like I'm a mixed bag of neurological defects and I've never truly known if I was coming or going. What caused what?

I wanted MAYO to piece it all together for me as I have mitigating circumstances. Quite honestly, I do not have 100% confidence in my health care professionals as they are not a team that works together for me. Unfortunately, I was not accepted at Mayo. I continue to wonder...is it my eyes, head, neuralgia, neuropathy?

You mention John Hopkins diagnosed you and you seem to have a solid handle on occipital neuralgia. I appreciate your in depth detail and advice.

I depend on ear plugs, low volumes, smaller Tv's with brightness turned down, minimal chaos via noise and light. Controlled light and sound. I wear hats, sunglasses, blind folds. My family walks on egg shells around me and I can't participate in much socially...no movies, concerts, fireworks, sporting events, no more family gatherings. It's a very isolating and an unpleasant way to live.

Thank you for reading and I look forward to hearing from you. I hope you are doing well given your circumstances.
Regards,
Rachel

I've been dealing with chronic nerve pain for yrs. I was diagnosed with TN 8 yrs ago. Over the last few days, my scalp, at the top of my head, feels like I have an electric shock hitting me every few minutes. I can feel exactly where the trigger spot is. I am unable to even touch my hair by the spot or the pain is excruciating. I've also had a trigger spot by my right temple at the hairline for over a year and cannot even lay my head on a pillow on that side or the pain is awful. Has anyone else had a nerve block and does it help? The electric shock pain also often triggers a migraine. Thanks.

I too have TN for about 10 years, it is controlled by medicine. Two days ago, out of the blue, I started getting an intense sharp pain on my scalp a couple inches behind my right ear. Sometimes it is every 4-5 seconds and other times it has more minutes in between! I don’t know what’s going on! It is like my TN has turned around and is going away from my jaw. Any suggestions as to what is going on would be appreciated!

I too have TN for about 10 years, it is controlled by medicine. Two days ago, out of the blue, I started getting an intense sharp pain on my scalp a couple inches behind my right ear. Sometimes it is every 4-5 seconds and other times it has more minutes in between! I don’t know what’s going on! It is like my TN has turned around and is going away from my jaw. Any suggestions as to what is going on would be appreciated!

Thanks, I haven't had more than 2 or 3 zaps all day...I don't know why it's only a day or two for me,.. but I will look at the site you recommended and I really appreciate your concern...my husband reminded me that I had an even weirder episode a few months ago but it was a patch on my arm. It wasn't red and it didn't shock me like the head ones do but it would just cause me a similar type of pain on the skin itself. The oddest part was that you couldn't see anything at all on my arm. Anyway, thanks for your concern and I will check out that site. Deby