Tuesday, December 02, 2008
does anyone out there also have occipatacal nero. with the nerves in head,neck,and face?
have occipitacal neuro. nerve pain in the face ,neck and head
OCCIPITAL NEURALIGIA
12/11/08 12:56pm
I also have occipital neuralgia. I know what you are talking about, the pain is so intense that it's like child birth. One of my MD's said that face pain isn't a symptom of it. I thought he is crazy. He hasn't had enough experience with this particular condition to say that. I have had the injections in the back of my head, they are so painful. I have also had the nevre severd, but that only worked on one side of my head. I also have fibromyalgia and all the other conditions that go with it, so as with everything else the occipital neuralgia comes and goes. But, when it comes I do not function at all. This condition was the first to present itself when I first knew that there was something wrong with me. Then all the other symptoms of fibromyalgia started to come along. It was then a full year to get diagnosis. The diagnosies just keep coming. I have been this way for six years. It seems like something comes along every six months to a year so far.
I would tell you to find a very good pain management MD, one who can sympathize with the inensity of this kind of pain.
If you would like to talk, I'm on this site alot.
12/11/08 8:56pm
HELLO I JUST GOT YOUR MESSAGE. DOES THE SHOTS HELP ? ME A LITTLE BUT I KNOW WHEN MINE IS STARTING IT HURTS TO TOUCH MY HAIR ON THE LEFT SIDE AND I ALSO HAVE SOME PAIN ON THE LEFT. TODAY I WENT TO MY PAIN MANAGEMENT AND HE TOLD ME TO GET A SECOND OPION WHO KNOWS WHY I THINK CAUSE I TOLD HIM THE SHOTS ONLY WORK FOR A LITTLE TIIME AND THEN I NEED ANOTHER ALSO I ASKED WHAT CAUSES OCC. NEURALGIA AND HE SAID HE HAD NO IDEA ? DO YOU HAPPEN TO KNOW WHAT CAUSE IT TO FLARE UP LIKE THAT ? ALL I KNOW IT HURTS. WHERE ABOUTS ARE YOU FROM ? I LIVE HERE IN ATLANTA , GEORGIA WRITE BACK THANKS FOR THE COMMENT. DEBBIE
12/12/08 11:26am
Hi Debbie40,
I live in a very small town called Bryson City,NC, It's close to Cherokee, NC. Great to hear from you. I know how frustrating it can be to try tell the MD's about the pain. When I first started having the pain, they tried every migraine medication know to man. I kept telling them that it wasn't a migraine. I have migraines, several different kinds, and this isn't one. I have never had pain that intense. In the begining, it only lasted 3 months and then one day it just went away. Well, it came back will a vengence and lasted for 2 years. It would vary in intensity, usually it would be the worst when I had been without sleep for 2 or 3 days. People thought I was faking it, especially when I told how long I had it. That was frustrating in itself. Most people and MD's just don't get it. I guess it's because they can go home and forget about you. They don't realize that it's an ongoing pain for me, day in and day out. It took about 6 MD's to finally get a diagnosis, and then came the injections in the head. You are exactly right when you say that it's painful.
I don't know about getting a second opinion unless you could find a MD that specializes in the condition and that actually will do something to help you. Maybe, you should ask about getting the nevre severed or maybe getting a nevre stimulator implanted. I may get the nevre stimulator myself, right now I not having a problem with head pain, I mean, I'm dealing with it on my own. But, when it gets bad, I"ll get it. I'm kind of scared of them messing anywhere near my spine. But, when you are in terrible pain, you will do just about anything to stop it.
As in the message before, I here if you want to talk.
Shauna
12/12/08 6:04pm
1/24/09 5:18pm
Hello Everyone,
I also suffer from occipital neuralgia. Unfortunately, I have an extreme case and on MArch 9th I am scheduled to have both occipital nerves severed. Although part of me is apprehensive, the other part of me cannot even imagine life without the chronic pain that this condition causes. I am a brain tumor survivor and have had five brain surgeries over the past 2 years...so the surgery itself does not scare me...I am just a bit apprehensive about not being able to feel my head. I have had several nerve blocks and received only mere hours of relief from them. But it was the best hours I had had in years. Emotionally I have begun to feel beat down and stomped on...this condition just makes you want to crawl under a rock and die somedays. I am tired of taking pain killers, phenergan, and nerve inhibitors! Anyone out there have any input on the procedure I am about to undergo?
Bruised, but not broken,
DeAnna Lynn
By debbieb40— Last Modified: 12/10/11, First Published: 12/02/08
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The only thing is that I have had experimental surgery at Johns Hopkins Hospital in Baltimore MD. They severed the left occipital nerve. It worked about 10 months, then the pain returned and is slowly becoming worse over time. My surgery was in 2001, and now I have lived with this pain for about 12 years. The surgery made the muscles in my neck shorter and there is scar tissue that causes additional pain. There are times when I wish I could stop it anyway possible... I am sure that it's a normal reaction to the pain. I have a strong desire to live however and I refuse to give up & die. I know it's not life threatening and I meditate and am into reiki and am trying to find alternate methods to deal with the pain. It does help some, especially with my mental stability and in trying to not concentrate on it. It is always with me, but there is some relief each day. My best advice is to have a support system of friends and family, if possible. And to find a way for you to deal with your pain on another level. It may be spiritual, physical or emotional. You can't give up because there are ways to deal with it. I know it sounds like bull, but it's true. You need to find your reason to keep going and to deal with it.
I wish you luck in your quest for this. I will pray for you to find your way.
Blessings
RhiannonKurena
WERE ABOUTS ARE YOU FROM MD. IM HERE IN ATLANTA GEORGIA. MY PAIN IS STARTING TO HURT ON BOTH SIDES AND GIVING ME A LITTLE PAIN IN MY RIGHT EYE ALSO. I'VE HAD MANY NERVE BLOCKS BUT MY PROBLEM IS I HAVE A HERNIACTED DISC IN MY NECK AND NOT HEALTHY ENOUGH TO HAVE SURGERY ON IT.SO I DEAL WITH THE PAIN. SOME TIMES I EVEN GET DIZZY.AND JUST CRY WITH PAIN. BUT I TRUELY BELIEVE IN GOD ABOVE AND I KNOW HE CAN ALWAYS GIVE ME STRENGHT JUST KEEP IN TOUCH AND LET ME KNOW HOW YOUR DOING . GOD BLESS AND HOPE TO TALK AGAIN SOON.