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RickEJ"I was diagnosed 8 years ago with Bi-Polar II.
With no support in my area I searched the web for help, after two years I stumbled on to MDJ.
The bi-polar II group has been my life line since 12/26/2009.
dizzyb my friend, you are not forgotten!
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Occipital Neuralgia Support Group
A community of patients, family members and friends dedicated to dealing with Occipital Neuralgia, together.
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05/19/2009 07:15 PM
LAMaizegirl
Posts: 1
New Member

Hi guys,

My name is Shelley and I am new to this forum and ON.

From the docs it looks like I have occipital neuralgia and possibly a secondary trigeminal neuralgia from a viral infection.

Looking to learn as much as I can about ON.

The spasms just feel like that poor C2 nerve is being crushed.

Fiorcet seems to be the only thing that is touching it for me right now.

Looking forward to getting to know all of you and learning.

Cool

Reply

05/20/2009 07:42 AM  Top
brugette
brugette
 
Posts: 941
Senior Member

Shelley, welcome to our small but growing community of people who have this medical condition. Sorry you have to live with this aweful, painful illness but hopefully we can help each other learn new and better was to deal with it. I too am on Fiorcet and find that it does help a little. Tegratol is another med that docs find helps somewhat. Also Lyrica, gabalpenten and neurontin, these are anti-seizure meds but they help with nerve pain, which is what we are dealing with.

What are your symptoms and treatments, if any, that you have tried so far? If you want more info on Occiptial Neuralgia I always recommend going to google's home page, click on images near the top of the google pages and type in Occipital Neuralgia and Trigeminal Neuralgia, you'll be surprised how much info you can find that way.

I'm on my out for another doc appt., hope to hear from you soon and again welcome.

As the group leader I am happy to give you my opinion on issues, but please remember I not a medical profession, just another suferer of ON.

Some days it's not even worth chewing through the restrains.

Same Nightmare, Different Day

06/28/2009 10:12 AM  Top
cmiller
cmiller
 
Posts: 860
Member
I'm an Advocate

Hi Shelley,

Welcome! This is a good place to start because one thing you will find out about occipital neuralgia is that there is little research being done about this disorder. The options I have seen so far seem to be nerve decompression surgery, neuro-stimulation implants, nerve ablation surgery and for TMJ stereotactic radiosurgery/ cyberknife.

Another thing you will notice here is that each one of us seem to have different symptoms and different severities.

Good luck and research well before you decide on surgery.

Chloe

I am not a medical professional. I sufferered Occipital Neuralgia and had right and left occipital nerve release surgery in 2010.
Before surgery I would throw up almost daily from the severe dizziness and had severe light and sound sensitivity. I stayed in bed, curled up in the fetal position wishing I had the courage to kill myself. If I didn't take a cocktail of antiseizure, opiates and muscle relaxers I suffered hundreds of electric shock type pains per day in my head and had a constant migraine type pain 24/7 from july 2008. I lay grieving for my life that once was the friends who once were and the void in my future.
Right surgery 100% relief; left surgery, scarring grabbed a crown nerve and I had surgery again to relieve that june 2011. Surgery really helped but was left with daily migraines triggered by certain sound pitches making living in this noisy world very difficult
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Health Topics: Neuralgia, Viral Infection
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