Occipital Neuralgia.

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Regular Member

Date Joined Sep 2010
Total Posts : 26
   Posted 10/2/2010 4:56 AM (GMT -6)   
Hi all,

I'm new to all this posting and chat so feel as though I am walking in the dark here.

I have had headaches for 30 years and finally was diagnosed with Occipital Neuralgia a few months ago. Last year a dentist said I had Myofacial Pain Syndrome from TMJ.
My headaches are 24/7 and so debilitating. Just recently my doctor injected the base of my skull with
cortisone and anesthetic. I had my fingers crossed but reality has hit and the jury is in. I still have this crazy pain.
I am taking Rivotril at night which I have to say is helping me sleep, which is wonderful. From the minute I get out of bed
the pain just works it's way up to a level where I want to be sick. I think someone has hit me at the base of the neck with a cricket bat or I've been hit by a truck. My head feels inflamed with shooting pains. My eyes feel as though I have elastic bands pulling from the inside. My face and temples ache and my jaw goes clickety clack. The pain travels to my shoulders, my lower back and even my heels. I'm not here to whine. I'm over that. I'm here to see if I can get some answers re effective treatments.

I take Neurofen Plus (Ibuprofen + codeine) & Rivotril. Mag Phos 6x
I'm concerned my liver is going to suffer and my stomach due to the anti inflamatory's.
Would really appreciate any help available.

New Member
Incredible as it seems, my life is based on a true story :+)

Post Edited (Shrub) : 10/2/2010 4:29:42 AM (GMT-6)

New Member

Date Joined Dec 2010
Total Posts : 1
   Posted 12/9/2010 11:06 PM (GMT -6)   
I am new to this forum.  Not sure if this is the correct place to chat. I am testing. I have had occipital neuralgia for years, diagnosed 2 years ago.  I have been through a lot.  I am still working and still married.  Sernny

New Member

Date Joined Feb 2011
Total Posts : 1
   Posted 2/25/2011 8:39 PM (GMT -6)   
Hi my name is lolita and ive been to 5 diffrent docs and thay all say the same thing stress or anxiety ive been on to many meds to count and now im on ataivain or vals and thay seem to help a lil. But thanks to your letters and explanations of how you feel and what your going through its the same as mine the rubber band feeling behind my eyes,the feeling like someone has hit me on the top of my head, and the stabbing pain that seems to start from the bass of my neck to my shouldres to my jaw line,my temple them right to my head. Some time there so bad that i cant help but sit and cry. My relationship is suffering and my home life as well cuz when thay hit it makes me cranky,angry, scared and confused cuz im not getting any answers as to whats going on with me. It seems like my docs are playing a guessing game. So anyone else who is going through this i feel for you and i realy hope your meds are working. I wrote the name of this down and gonna take it to my doc in march so maby he will look into it for me. So thank you all for sharing yous stories and symptons now i under stand where i need to starty looking. Good luck and god bless you all. Lolita smilewinkgrin

New Member

Date Joined Feb 2018
Total Posts : 2
   Posted 2/2/2018 6:21 PM (GMT -6)   
Hello, there is information around using Botox (https://www.healingwell.com/community/default.aspx?f=31&m=2632461). It has been a game changer for me!

I had suffered 24/7 with excruciating head pain. I felt like I had a hot sword pushed into my head from the top to where my neck meets my shoulders, a vice that is pushing my ears together, a giant pair of hands at the base of my skull and tearing my head in two. Horrid horrid horrid.

Air that moved my hair hurt. I washed my hair once a week, water from the shower hurt too much. My rheumatologist send me to a neurologist who started me on Botox. Thank goodness!
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