Hi there. My name is Alison. I can't imagine dealing with ON for 10 years! I have had horrific headaches for 2 years. I sat in a chair at work with no hydraulics and had an immediate head ache! Workman's comp has tried to make light of my condition. I had another fall (we have terrible chairs at work) in Jan of 09. I just had an mri because my left arm and hand is numb now as well. Because we have nerve problems there will always be normal mri's I knew when I had it it would be, but Scott and White in Temple request them for new patients. I hope to be going before June. Let me know what your symptoms are. I am on 80 mg's of Norco 10 (hydrocodone ) per day. I am working on 5 hours a day because I am an info operator at verizon and wear a headset and talk all day under bright lights and the noise of 100 other operators! I am miserabl every day and pray that this will be the final chapter when I go to Temple. I have all the classic symptoms for severe ON and it is on both sides as well. I'm sure you have looked up all the surgeries and stimulators that are used fo ON. Medication is just not going to do for the rest of our lives. It's not good for our vital organs ethier. Take care and thanks for joining. I had forgot that I started a group. I live in Texas, how bout you? Let me know how things are going for you!

I have bilateral pain as well. It was misdiagnosed as migraine for years, it wasn't until the last year that my neuro suggested ON, and it seemed to fit for me. I had a nerve block, and the injection site pain was just as bad as the ON pain, so that didn't do much. My current neuro is back to ignoring the ON and talking about migraines. Its all very frustrating for me. At this point I haven't been able to talk to a doc about neuro stimulators or nerve ablation or other surgeries. I think botox might work because my ON was not caused by an injury. The muscles that cross over the occipital nerves on the back of my skull are abnormally tense, and sometimes get so hard as to be compared by one masseuse to bone. If they can parylize those muscles then maybe the ON will resolve, or at least I hope it will, now I just have to find a neuro willing to do it.
Your on a lot of norco, how is your functioning on it? I take 2 5mg hydros daily, sometimes I have to take more than 1 dose, but the most I take daily is 30 mg of hydro. Luckily thats able to control it 90% of the time. I'm glad you did start this group, I hope other people join. I'm in the migraine support group qand the trigeminal neuralgia support group, but the issues are just different with ON than anything else. I live in Washington.

This is the first active Occipital Neuralgia Support group I've been able to find and even with just a few people I'm happy to see it. I was diagnosed with ON 3 years ago after a saggital sinus thrombosis was found. Luckily that part of my life has been taken care of, but I have yet to find any sort of relief for my ON. It's only on the left side of my head, but affects both my eyes. They've put me on Lyrica 100mg 3x a day and Morphine 30mg when I have an episode (which has been every day the past 2 months). I'm also on nerve blocks, but unfortunately even those are losing their effect. My last one only lasted 10 hours.
It has been very frustrating for me with just getting by with daily life. I try to keep a positive attitude about it, but once in a while being in constant pain just gets to me.
Thanks for listening and thank you for starting this group.

Man. I have been dealing with what they think is ON for 3 months now--I cannot imagine living like this for years. It is MISErABLE, as you all know... I just got a nerve block today--hoping it works, obviously. I also recently started gabapentin, which is helping some. It's a seizure drug that's also used for nerve pain (I don't have seizures or anything like that). Tricyclic antidepressants are also supposed to help. Maybe ask your doctor about those? I haven't tried morphine--can you function at all on it, or does it just knock you out?

Hi..I have had this for 5 years....I'm really sick of it...Gabapentin and prozac main treatment (and also pain killer if needed)....Also, My neurologist had me on sleeping pills if I need..I hate this...I'm so happy there is a board I just really tired..

Hi, I'm not sure that this group is active but I'll still share my ON story. I have had ON for over 10 years (stopped counting). Nerve blocks every three months worked pretty well for several years then started to stop working. My last one worked less than a day. I have not had a single pain free day in the last three years. I have been home on disability since September because I could no longer teach this way. My insurance denied me twice for a nerve stimulator but that decision was recently overturned and I am waiting to hear when my surgery will be! I have taken everything over the years and nothing really works. I don't even bother with pain pills now because I have to take 2 Oxy every 2 hours to keep on top of the pain and you can't do that so I take nothing and don't have to deal with those drug side effects as well. I also have fibro and chronic migraines so I do take meds for those but they don't seem to touch the ON. My biggest problem right now is I can't sleep.

hi im kathryn I to have occipital neuralgia on both sides of my head, it first started on the right then got a nerve block the doctor gave it to me on the left and now i have on both sides you can imagine how i feel now he made it worse. I am too on nuerontin for nerve pain that does seem to help. I know how your feeling i think sometimes i want to run out and have surgery but because of my experience with the injection im so scared but definetly thinking about something i really get sad thinking i have to deal with this for the rest of my life. Thanks for listening to my frustrations.Kathryn