I have it in my neck bilaterally, along with my tongue, ears, throat and cheeks. If I had a tail I am sure I would have it there too! Anyone have it in their neck?
Thanks,
Funtsie
Hi Funtsie, Yes, I have had this in my neck, left side of tongue, throat for many years now. After the surgery I woke up with the most terrible pain all through the left side of my scull as well. It is sort of tingly and numb. I have no answers to give you for help. Just nice to know, in a way, that I am not the only one. Take care. WW
Hi Warrier,
I hope your skull pain is gone. My GN is from MS so it is just......there. I was just wondering if others have it. It is in the literature so I guess they do.
Take care.
Funtise
For me, the locations vary constantly, but there is always GPN pain, except when sleeping.
It affects left face, left lips, left teeth, left jaw, left upper pallet, left tongue, left throat, left ear (sometimes inner, sometimes round the outside of the ear itself. Sometimes in & out) It does go bi-lateral on occiasion, but last only moments or minutes when it does.
When pain is at it's worst, it's all of those locations, and also goes down into my left neck, shoulder, arm, and the way out to my thumb.
I also have a cavernous malformation (AVM) deep in my brain that causes all sorts of headaches. Some prolonged, some flash explode and last only a few minutes, and those locations are numerous (front forehead, wraparound at forehead, top of head, and base of scull.
After years of going thru what I do, nothing is a surprise anymore, I know what to expect when it happens.
For me, the thing to do is take my meds, get plenty of rest, excersize, and accept what I'm dealing with. It most definitely is all a challenge, with huge impact on day to day life.
Wishing you the best.
Eddie said:
For me, the locations vary constantly, but there is always GPN pain, except when sleeping.
It affects left face, left lips, left teeth, left jaw, left upper pallet, left tongue, left throat, left ear (sometimes inner, sometimes round the outside of the ear itself. Sometimes in & out) It does go bi-lateral on occiasion, but last only moments or minutes when it does.
When pain is at it's worst, it's all of those locations, and also goes down into my left neck, shoulder, arm, and the way out to my thumb.
I also have a cavernous malformation (AVM) deep in my brain that causes all sorts of headaches. Some prolonged, some flash explode and last only a few minutes, and those locations are numerous (front forehead, wraparound at forehead, top of head, and base of scull.
After years of going thru what I do, nothing is a surprise anymore, I know what to expect when it happens.
For me, the thing to do is take my meds, get plenty of rest, excersize, and accept what I'm dealing with. It most definitely is all a challenge, with huge impact on day to day life.
Wishing you the best.
I handle it that way too! Rest, meds, exercise and accept it. My Dr. said it does not go to your shoulder, that's wrong?
Funtise
I've questioned whether the neck, shoulder, or arm are perhaps something else, but I can tell you that when left side facial pain is really bad, even after taking meds, but the ONLY time I experience neck, shoulder and arm is when the facial pain is out of control. My GP nerve is damaged at the brain stem. I also have severe cervical spondylosis, and the malformation in my brain is just above that. So in my case, the specialists are thinking it's possible that all 3 conditions could be interacting due to close proximity. No definitive explanation has been offered. I'm very tired of it all, tired of explaining it over and over to new specialists, and tied of the looks I get and some of the responses I get. (like we're crazy, or making it up) Everything I have is 100% risk of complication for surgery.
All of this has had significant impact on my life. I've tried every kind of therapy you can imagine, and it's not inexpensive. I feel like an empty shell of a person, and have NO hope, so it can be depressing. I counter that by accepting it all, and just going one day at a time. Doesn't mean I don't experience the "lows", because I sure do.
I'm sorry I don't have something more positive to express, but this is truth, and I live it.