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Living With Facial Pain

Any wisdom to share for relief from Occipital Neuralgia?

I’m having a bear of an Occipital neuralgia flare. Fun too, on vacation. Quick background, I’ve got TN, type 1&2, on both sides. Had an MVD 2 years ago (successful) on my left side.
I also get botox for migraines, double Occipital nerve blocks, and Trigger point injections. Plus, various opiods, tegretol,neuron tin.
Due to kidney issues, I cannot take ibuprofen and indomethacin.
That’s that with the background.
I’m pretty new to the OC . I’ve had it a long time, just figured that my scalp hurt from my hair, and i had a migraine with it. It’s gotten really bad over the last few weeks. Today being the worst.
Just got botox last week, and get nerve blocks and Tp inj. In 3 weeks.
I’m desperate for anything that may help. Trying to rest is hard, cuz i can’t put my head down, cuz it hurts, and feels like it’s on fire!

Hi there I’m new to this group but as you have occipital neuralgia ,believe me my head get bombarded by terrific pain like thunderbolts and lasts for nearly three weeks so I know what it’s like sometimes it feels like it being stirred up ,i have started on Tegretol then dose increased it made me like a zombie dose decreased but now two weeks without headaches very anxious as I usually pain free for a few weeks so I’m waiting for a few more weeks pain free then I will continue on Tegretol low dose I’ve given up all my sport but just getting my confidence back,l was knocked off my moped several years ago so it’s a ? ? if this caused it as my head was under a car I only have this extremely painful top of head pain.lm sorry to read about yours…let me know how you get on

I will keep you posted. Had physical therapy this morning, and he worked some magic on my neck and scalp. Hoping it will help…

Hi blueeyedgirl,

I have bilateral ATN in all three branches and have been suffering from Occipital pain on and off for about a year and a half. I also get migraine and cluster symptoms with flare ups around my eye.
I just wanted to let you know that physio and acupuncture weekly help me immensely. There seems to be a connection to my pain with my occipitals and cervical spine. Gentle hands on manipulation in this area tend to keep things under control.

Jane

Hi well if any physic helps I will try it,but as my neck is fine. I’m not sure what they will do,occipital pain gets out of hand at times which makes me feel I’ve had enough of it,medication knocks me out and doctor keeps telling me I will get use to it in time so still waiting

Hello all. This is the first time I have seen anything about neck involvement (I lurk around and am somewhat new to the site). I have a menningioma in my cervical spine at my brainstem. I also had 2 strokes in 2012 and that is how they found the meningioma. No doctor has expressed much concern about it, but it is the thing that worries me most. I recently had a horrific pain that began in my neck and consumed my entire head. Left eye stab and water, many similar things I have seen here. My TN began a year after the strokes and still flares after MVD. Anyone else have a meningioma?

Hello you have lots of discomfort and I can understand how bad Tn feels my left eye waters and painful beside the eye my pains are mainly occipital and also like someone gripping my neck but you have so much more ,your specialist should be helping you with treatments have you told him how your feeling and what your thinking ,I feel I’m not much help,but would like to hear from you again.

Hello Jane,
Thanks for your response. I did talk with my neuro last week and told my
episode was probably BPPV (benign paroxysmal positional vertigo). It did
not explain the terrible headache, but it did resolve and has not not
happened since. Will return to them if that returns to me! So far so
good. I just wondered if the menningioma is something that others have as
well. I am having a pretty good 2 day run right now. My last trigger of
face shocks was 4 days ago when I opened my mouth to eat an ear of
corn…apparently too wide! The oxcarbazapine and neurontin help keep the
attacks at bay, but I do dread the winter and wind! Hope all is well with
you.
Boots

Hi Boots glad you feel easier after your visit to specialist,although you know and hope no pain will come I think to myself I just hope that suddenly it will disappear ,but then again it could ,did you have any accidents at any time,I was knocked off my moped so there has always been a ? over if it did cause me this problem. I have been away for a week and my head pain returned so I dosed up became weak felt sleepy spent 10days flat,then pains go,I’m fed up with it so trying to keep to regular dose and time ,but remain anxious,this week I’m going swimming so fingers crossed as I want to get my life back.
Do you have any exercise to do for your vertigo ? I have no menningioma were you born with it ,are you sure you had no injury to your back at anytime doing sport?
I hope you remain pain free Boots .
Jane

Here I am again after these lighting bolts coming again in my head,any way after some thought I decided to go and find out about my results ,guess what after a long talk to PALS at the hospital they managed to get through to manager of department and they informed PALs that neurologist has left and a new one is starting soon but my appointment will be sometime in December ,they very kindly gave me a letter for my GP and a copy for myself ,which I see I should have had ESR done so I’m beginning to feel let down, Tegretol I don’t feel is working for me my letter says I have Atypical Neuralgia so I do need ESR done but I’m just off to see GP soon and hope sorry to bore everyone ,I just need to talk ok

Hello Boots
I haven’t heard or read anything from you lately,so I hope you are alright .
I had news that my neurologist has left,so waiting for new one to start,so wait and see situation.
Jane7

I developed occipital neuralgia after having MVD for right sided TN, in the top branch (my right eye and the bridge if my nose on the right side are the areas affected). I go for occipital nerve blocks every 3-4 months. I end up in worse pain for a week after the injections, then I get some partial relief for 4-6 weeks. I also have prescription lidocaine cream that numbs the area when it gets really bad. I have been left with a lot of extreme pain on and around the MVD incision, and I get bursts of sharp, stabbing pain up the back and on to the top of my head. I can’t put pressure on my head and don’t lay on my right side.