Don't know if this is the right board, but I couldn't find anywhere else to ask...
I was diagnosed with Occipital Neuralgia late last year, after almost 12 months of tests and scans, and waiting in frustration and pain, to find answers!
The Occipital Neuralgia was caused, it seems, by damage to the nerves from surgery on my neck, to remove an Arachnoid Cyst. That op was 10 years ago, so no one saw the connection at first, because it was so long ago, and I had had many pain-free years in between. Seemed strange to me, anyway!
I'm still yet to find the right treatment. I have tried a couple of meds, but they had too many bad side-effects. So, I would like to find out what other treatments there are that hopefully work.
Is there anyone else here who has Occipital Neuralgia?

~Jaime~

Hi Jamie,

I also was diagnosed with Occipital Neuralgia this year.. Have been having numbness and scalp tenderness issues for the last couple of years. They thought it was MS but..
I had an episode of extreme stabbing pain and tenderness. that confirmed the ON .. good to have a diagnosis at least.

The only thing that knocked down the pain was an opiad based drug. I am off that now and taking Neuontin (200mg at morn, lunch, bedtime) and Aleve. It seems to reduce pain and sensitivity. Still have some stabbing flashes but they are not as intense.
Neuontin makes me sleepy and foggy.. Reactions a bit slower.. daydreaming more. Seems to get better as my body tolerates the drug more.
My Neurologist wants me to work up to a higher dosage of Neuontin eventually.

I have tried cymbalta, nortriptylin and I did not like the side effects and did not feel they were helping me.

The best thing I started to do was to keep a health log documenting how I feel and how the medication is effecting me. It is very nice to go back and see trends from that info.

Good luck

Thanks for the reply,

I haven't tried that many meds yet, but the neurologist always seems to want to try anti-depressants, and one I tried recently was Amitriptyline. It has so many horrible side-effects, and didn't really help the pain much anyway! I couldn't stand it after nearly 2 months, so, stopped taking it.
Don't know what he will try next, I'm still waiting for my appointment!
But I wish there was something that would help, but not make me so drowsy/sleepy all the time. But it seems like every strong med for chronic pain, makes you sleepy!


~Jaime~

I'm still trying to find the right meds. Now I've been prescribed Topamax, which is usually for epilepsy, and now migraines. I wonder if it will work for Occipital Neurlagia? I haven't started it yet, but I hope it helps, but the long list of possible side-effects scares the hell out of me!

~Jaime~

I've been trying to understand variety of symptoms manifesting since traumatic head injurys; most pervasive -Constant headaches w/ photophobia, focused in back of head, w/ severe neck pain. Movement is difficult, & generates electric shocks. Pain radiates thu out head, up into temporal area. Throbbing behind eyes. Head so sensitive hurts to brush my hair.

I felt were several types of headaches -Long history of migraines, since childhood; sinus & "tension" headaches; and bouts of excrutitating headaches that seemed to be cluster< I've been to ER twice w/ this in past 3 months; IM toradol helped.

Neuro Dx "atypical" migraine & wanted to do botox injections (require insurance approval) Previously he'd used injections of ?? [don't recall names now --memory issues from last concussion] but was a combo that did help, for varying periods of time when injected into most painful areas.
However, I did not fully agree w/ Dx of "atypical" migraines--did not cover all Sx I'd presented. Also, I know too well when I have migraine--for me incapacitating w/ nausea & sensitivities which result in heading to dark quiet bedroom ( i can't use triptans)

These headaches do have components of migraine & other headaches. Recently while researching TBi found a name that encompasses all symtoms: Occipital Neuralgia.

Yesterday I mentioned this to Physiatrist- DR of physical med & rehab I've begun to see for TBi/PCS; he just nodded, said, "Yes, Occipital headache" and wanted me to continue w/ Topamax, which i've used before w/ no major problems but did experience adverse affects this time; do NOT want to use now. He wants me to try Cymbalta again, but at lower dose-20mg. I'm so apprehensive about antidepressants coz of Hx of allergic & adverse reactions to many. But will again try Cymbalta- is indicated for other symptoms , esp. "nerve" pain .
Neuropathies are body wide now, but neck -cervical area is unique for "electric" zaps. Also Lumps at base of skulls that are painful to touch.
I've learned that presenting too many Sx to Drs "overwhelms" them; I have to focus on the "worst" & hope for the Best...

Thanks for sharing your stories RE: these "headaches"--wish you all Best.
Blessings.

Hi
I am being treated for occipital neuralgia i have a tumour in occipital region
there is pressure on the nerves.
At the present time i am having nerve blocks into the back of head i have had 6 & will be having another in 2 wks time, these seem to help more than anything. i am also on anti epileptic meds & pain meds.
I have also had stellete ganglion blocks, but they made my b/p go up also caused seizures soon after i had them done.
The nerve blocks i have every 2-3 months, don`t feel very well for a couple of days, but then i`m not a young chick, they really do help the pain though
They say it`s only successful if it`s true " occipital neuralgia "
So worth a try.
hope this helps.
sophia

I have yet to try a nerve block, but it was suggested by my neurologist to try next time if the Topamax doesn't help. I have been on the Topamax just over a week now, and haven't felt much improvement yet, I just increased the dose 2 days ago as recommended, and all I feel is dizzy and so nauseous. I hope I don't get too many other side-effects, and hope they don't last too long.
I guess they cannot remove your tumour? Luckily I only had a cyst that was removed, but the nerves were damaged in the the operation.

~Jaime~

Hi guys,

I was diagnosed with ON about two months ago. My ON started the day after a car accident I was in back in July 2008. It usually consists of pain in my upper neck, which then is felt all the way around to my forhead. It can be a shooting pain, a throbbing pain, a steady pain. Any kind of headache pain you can imagine, I've felt it.

I have been seeing a neurologist and a pain specialist for this. I am in my 2nd set of Facet Blocks. My pain specialist says after the first set, he usually see's a 30%-50% improvement, and a 70%-80% improvement by the 2nd set. This is not the case for me. I only feel minor relief from the headaches for the first couple days, but my neck is in so much pain from the injections, that it's almost like no relief at all.

The only other treatment I've had is a nerve block, but that only made my neck unbearably sore for about a week.

Has anyone else had these same affects from these procedures? Did you find anything that worked? I am at my wits end with all this pain. I'm only 27 and feel like I can't even function a normal active day to day life anymore.

Just looking for some support. So sad to see there are so many other people out there with the same condition, but glad to see a forum about it with everyones experiences. I can't imagine living with these for years like some of you have.

Has anyone tried the botox injections? I've heard about these, but wondered if there was any success with them.

Thanks,
Lisa

i'm in the same boat

I am new to NT and had injections at the trigger points at the back of my head. I didn't find immediate relief but its worth a try. I 've been told I had hyperexcitability of the upper cervical dorsal rami nerve roots to unraveling of the myelin sheath to occipital neuralgia. I honestly don't know for sure what is wrong with me . I guess its just hard to diagnosis. I wish you the world of luck and I hope and pray you will find relief. a word of advice, STAY POSITIVE.