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..