So, at my last NL appt I was finally given a clear cut dx for Occipital Neuralgia and am in the process of being authorized by insurance for Botox treatments. I never thought to aks WHY I have it. I know I may never get an answer, but I am someone who likes to know what everything is caused by. I worked in healthcare and for some reason, I have a need to know everything. It is almost an obsessive thing. I was just curious if anyone was ever given a reason as to why they have it. I had issues prior to surgery so I can't say for sure that I think it was caused by the surgery itself. I was always told that I had Trigeminal Neuralgia, so the ON is sort of a new dx for me and I don't quite understand it all yet. There isn't a whole lot of information online and personal experience is always more informative to me anyway. Thanks in advance. Hope everyone has a good day!
I don’t have an answer for you, but I’m curious as to what your symptoms are with ON?
Terrible pain in the back of my head, neck, shoulders and down my arms to my hands, migraines (which are really tension type headaches), ice pick stabbing pain in my left ear and left eye, stabbing pains in my head, tender/sore scalp, shooting pain/burning pain in my face, really tight neck muscles and constant spasms in all the affected muscles including my face. The pain is unimaginable and unbearable at times!
That sounds horrible. Since some of the symptoms are like Chiari symptoms, how do they differentiate between the two? Is there are specific test you had for that?
LOL, I am like you and want to know why and how and what...it really sucks when they don't have clear answers and solutions.
Hopefully someone here will have some personal experiences to share.
Wendy,
The things is....I have NO idea if it is what they say it is or if I may have reherniated. No specific tests etc, just medical opinion. I had decompression in December of 2011, so I would think things are still ok, but with Chiari....ya never know. The only thing that would ease my mind would be an MRI, but I had one in October and don't see my NS again until Feb. So, I guess I will wait and see what she has to say. My surgery was a "success" in medical terms. It opened up the flow etc, but by no means has the surgery been a success for the relief of many of my symptoms. It has actually caused more things to pop up post op. I would not recommend surgery for anyone UNLESS it is absolutely neccessary!!! I see so many people want surgery. It isn't a "fix all" and it isn't a cure!
Wendy said:
That sounds horrible. Since some of the symptoms are like Chiari symptoms, how do they differentiate between the two? Is there are specific test you had for that?
LOL, I am like you and want to know why and how and what...it really sucks when they don't have clear answers and solutions.
Hopefully someone here will have some personal experiences to share.
Sydney,
Thanks hunny! Pain meds never helped me either. My NL says that typical pain meds usually don't relieve nerve pain. I did have some relief from Fiorcet, but it can cause rebound headaches. Sometimes I take it anyway just for a little break from the pain. I had this pain before surgery and after, but this pain has gotten much worse. I am just not sure what is going on. I see my NS in Feb. So, maybe she will have some input. It seems like I get these type of "flares" though. This one just seems much worse than any of the others. I hope you get some help soon! Did you check out that website? They are back up now. The patient handbook it great and explains a lot.
Sydney. said:
I have the same thing, pain in the back of the neck. :/ it's super bad.
I hope you are okay.
I am on so many pain medd and none of them really take my pain away.
I got diagnosed with that BEFORE they knew it was Chiari. They have since ruled that out.
I'm sorry you have to go through that, and I get it. I'm have am having the same pains right now. I've had them before, but this time I know the cause. I hope you are feeling better now. Did you find anything that helped with the symptoms? I have to make myself stretch and walk a good amount or all my muscles will sieze up and sometimes I can't turn my neck or to move my hand for periods of time. Holding it with heat helps some too. I used to take prescription drugs like Lyrica and Cymbalta when they thought it was Fibromylagia, but they didn't help at all and the side effects were terrible. Now I use medical marijuana sometimes, but I think heat, pressure, and movement help the most.
nicole said:
Terrible pain in the back of my head, neck, shoulders and down my arms to my hands, migraines (which are really tension type headaches), ice pick stabbing pain in my left ear and left eye, stabbing pains in my head, tender/sore scalp, shooting pain/burning pain in my face, really tight neck muscles and constant spasms in all the affected muscles including my face. The pain is unimaginable and unbearable at times!
I identify with all of you.. the pain in the neck and all the knots that start accumulating from all the strange positions you have to put yourself in to allow a bit of relief and before you know it THAT remedy now makes it worse. I used to find that If I stood against a wall and put my head down in between my legs.. the HUGE throbbing in the head that makes you scream for mercy kind of lets up a little.. then I slowly stand up. VERY SLOWLY to adjust to the pressure and altitude i guess? Then my family members help me get all cocooned up with blankets and pillows on the couch.. in a strange position that I like im laying in a hospital bed that is Folded up in sitting position and i have to put a heating pad rolled up with a rolled up towel behind it.One for the warmth to loosen things up and Two some reason squeezing the area that my scar from my decompression is.
Another strange remedy.. I lay on a bed flat on my back with my head hanging off. then a friend or family member stands behind me and holds my head with there hands in the position of holding a foot ball with two hands. the four fingers are lined with my decompression scar and sometimes i need them to be lower in the dimple of my neck with thumbs sort of around back of my ears lined with my jaw bone and that bone behind my ear. they have there thumbs anchored there and I ask them to pull gently but end up a stern stretching of the neck by pulling my head. sometimes someone doing this will feel weary that they will hurt you or pop your head off lol but I just assure them that them putting pressure on my neck with the four fingers and pulling my skull it feels like relieves the pressure build up in the neck that leads to that unbearable throbbing feeling. slowly they release and i have to slowly roll onto my stomach. slowly pull my head onto the bed and ill see if i can with stand sitting up.. but usually takes a couple minutes and then im headache free. This condition is so unpredictable tho that sometimes being touched or hearing even the sound of a fridge door closing is excrutiating.
im wondering what are other ppls strange remedies? or if mine are anything similar.. if even understandable(sorry? lol)