Occipital Neuralgia Online Support Group

What a relief to find a place where people understand the pain we deal with on a daily basis. Im 30 yrs old old and just had my first anniversary with O/N. I woke up one morning with a headache and had no idea of the change in my life it would soon make. It took five months before a Dr would actually listen to me and decide that it wasnt a migrain. I was taking Gabapentin (3600mg/day)had cortosone injections, and botox all with little to no effect. I currently take lyrica and nortryptalyn daily and was finally givin some pain killers (hydromorphone)to deal with it when it really gets bad. nothing has ever taken the pain away completly and am starting to think its going to be like this forever. Im not working now, im a welder witch is probably the worst job on earth to have with this condition and dont know when ill be returning. Im starting to think a more invasive plan of attack might be neccesary but have been told that the pain can come back and be even worse. Just looking for advice becase im just so sick of it all. My wife wants her husband back, my kids want there dad back, and i dont want the first thing people to say to me each day is HOWS YOUR HEAD? Just soo sick of it!

Have you tried nerve block with a local anastethic ? Like Marcain etc. the long lasting ones ?

I also read up on a cocktail for nerve block with local anesthetic (such as lidocaine) with epinephrine, a steroid (corticosteroid), and/or opioids.

Going to be my next try since regular blocks stopped working a few months ago, doc thinks it might be because of nerves increasing the signal input as they were blocked for 4 months with sucessfull nerve blocks.

Definetly know what yer going through, i've had the headaches for a year and half now. Still kinda undiagnosed, specialist stamped me with NDPH , local GP and neurologist with O.N. , and semi atypical trygemal neuralgia.

No success with any kind of meds nor painkillers here yet, apart from the 4 months of relife from successfull nerve blocks (tho still had frontal headache, hence atypical trygemal neuralgia)

Not working anymore either, headache and random shakes/dizziness dont go well as a builder.

Before a invasive procedure I would definetly go for a nerve block with local anastetic (some places they do them while using ultrasound etc. to make sure they hit the nerve) so you are definetly sure its O.N.

Also they got O.N. Stimulators. Electrodes they put on the nerves to make the signal "normal" rather than pain signals. Which are less invase than destroying the nervers or decompression (clearing tissue/vessels around the nerve to make less pressure on it)

Man I feel with you on the "hows your head" thing , everytime i meet someone they ask that question , every time its the same answer ...

On a side note:

Could you post yer symptoms , ranking pain , worse with activity / not etc.

Either here or in a PM ? Im still learning about O.N. as well and would be nice to compare things.

Before the Dr gave me the cortesone he did freeze it which did give me immediat relief. I felt anisthetic move from behind my right ear where the injection was all the way up the side of my face and behind my right eye. We were both very optimistic at that point and he continued with the cortisone. My head was frozen for about 2hrs but when that wore off i felt like i had been hit with a bat on the back of my head. Within a couple days my "regular" headache was back. Alot of pain for a few hrs of relief.

A few weeks ago i spent the weekend at the hospital with my GP. He asked if i was willing to be admittted for 48hrs so he could load me up on a cocktail of drugs to try and get rid of the pain perminently. every hr all weekend i was givin something else. Buscapan, maxopan i believe, imatrex, fentonal and maybe a few others, i kinda lost track. He hoped this would just "kill" it off and i would be ok for a least a few months. Needless to say it didnt work.

Generally on a good day my pain is at a 3/10 all the time. Being a welder it doesnt take much work to really kick it off and make it jump up to a 8 or 9/10 pretty quickly. The back of my head has become extremly sensitive in the past few mts and even the slightest pressure can trigger it to run up my head and into the back of my eye.

Tommorrow im actually going to get some accupunture for the first time. Ill post what if any the results are. Thank god for free health care i swear id be bankrupt after all the procdures and drugs ive tried in the last year.

Was it regular anastethic he gave you ? If that gave you relief , you should try one of the long lasting ones , Marcain or similar lasts for 3-12 days. Since it gave a few hours relief you should try a long lasting one , unless you already have.

I got the feeling like I was struck with a bat on the back of my head when the doc tried cortisone on me as well (being really sore for a while is a common side-effect , hence they usually always put it with anastethic). It helps relieve the headache for some , and for some it dont. Didnt work for me.

You say the back of your head is getting more sensitive, mine is as well.

Have you tried pressing on various points at the back of your skull ? I have 2 very small spots where if I press its reallly sore (Approx where the Occipital nerve arrises from the skull.

Thats where I had my nerve blocks and Marcain took pretty much all of my pain away for up to 12 days. Gradually going down to 3-5 days and finally stopped working at all.

Hi,

If you read the past posts a few of us have had great success with nerve decompression surgery. After following forum members in the past who have had stim implants, I believe that the nerve decompression surgery is far less invasive than the implants. Implants seem to move, get infected and need the trial first and then surgery for the battery, wires and then the plates across the nerves for the stim to work and it is pain relief not a possible cure.

I may be biased but after spending three years in bed barely able to function and then deciding on the surgery I haven't read of any other procedure that can give a cure.

I would have the decompression surgery again in a heartbeat.

My ON was 24/7 for the three years. The gabapentin does help with the massive electric shock type pain and a muscle relaxer helped by stopping musclular spasms a little. Private message me if you want to know more than is on this forum.

Chloe

hi chloe, i forgot who did your surgery? thanks