I was diagnosed as having occular headaches. I was diagnosed as having occular migraines. I was diagnosed with occipital neuralgia. And, I have been diagnosed with juvenille onset epilepsy (but not until I was 30.) I don't have seizures all the time even when off medication. Usually, I'll have some symptoms indicating a flare up of my occipital neuralgia and occular headache or sometimes it's been called a cluster headache. Most of my EEG's have been normal with only a few abnormal ones. Once during a cluster of headaches and seizures, I saw an opthamologist who saw that my eye pressure was off, but couldn't see a cause from the pics she took.I've had the nerve block shots and they worked GREAT at first, but gradually became ineffective faster. The first shots lasted for 6 months, then around 4, and finally less than a month. I had Severe bad reactions to Neurotin and Topamax; but was successful on Depakote ER. Then I got pregnant and went off it. My seizures got worse, so they put me on Keppra which actually increased my seizure activity although making each episode less aggressive. Now my neurolgist wants to do an extended stay eeg, but there's No Way we can afford it, and he doesn't appear willing to try anything else OR agree there could be a link between it all. I've had 2 children (now toddlers) and after last nights cluster of myoclonic seizures it looks like I'm going to have to go back on meds. I don't want to do Depakote because of possible birth defects if we were to get pregnant (not trying, but we use natural planning because of religious reasons.) Is all this unheard of? It makes me crazy.

I was dignosed with ON in 2008. I have had nerve blocks in the past but dont seem to do or much or last any more. I have had nerve decompression surgery that seems to have helped but only a little. My headaches are throughout the day and become unbearable as soon as I lye down. So I am getting very little sleep. I am on gabapenton 1800mg per day and butalbital tabs. Dr wants to do nerve stimulators but insurace co. is fighting stating it is experimental. Just wondering if anyone has had this kind of problem.

Looking for help

Hi I have just been told that I have o n 5 weeks ago' can any one tell me if they have heard of any one who has been exposed to cold air' my problem started when I sat in a draft for a couple of weeks ? Had awful pain in my neck and a couple of days later really bad head pain which hasn't gone away. Anyone every heard of this pls help.

Hi baily,

Welcome to the NeuroTalk Support Groups.

You may also like to repost on the Occipital Neuralgia Forum here.

Link is below.

Occipital Neuralgia and other Cranial Neuralgias

For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia.

There's also a New Members Forum where you post/questions may be viewed by more people.

New Members Forum

Hi Jaime
My name is cynthia im not the petient its my sister she was diagnosed with oc 3 years ago and the pain is horrible she is in agony. Has ur oc caused seizure? She has also been diagnosed with epilepsy and has severe learning disability. Shes only 32. Her pcp she might have trigeminal pain as well. Have u ever heard a case like my sister's?

I got that same injection on the right and they want to do the left, I just can't get over the anxiety. and the Girl at Pain Management said I was a baby, I've had every injection there is. Wish there was a way to go back home, you know before the accident, excuse me got to go get a Kleenex.

I do not admit to the anxiety but I do worry that I will be stuck with this for life. Had the nerve blocks several times which helped for a while then no relief anymore and recently a steroid shot which made my neck very painful. I did not get pain relief from the steroid shot. I take Naproxen, Baclofen and Lyrica. What is next?