It is my understanding that neuralgia is kind of a blanket a term used to describe nerve pain. Most of the folks I know who have suffered with it have had a very difficult time determining the cause, making it nearly impossible to cure. Mostly their treatment plan has consisted of pain management. On a positive note, my sister lived with occipital neuralgia pain for several years before finally finding a doctor who performed what at this point is an experimental procedure. It took care of the horrible pain once and for all. So there is some hope for your sister. Be there for her, support her, and don’t give up.

Has she ever had a neck injury? Some of the pain you’re describing is exactly what I get from pinched nerves in my neck. My pain is exactly the same except for the feeling of strangulation. I’ve never had that. The sore eye bone and pain in the teeth and behind the eye sounds horribly familiar. I’ve always called them ‘migraines’ but they’re not proper migraines… but when they’re bad, the pain makes me vomit.

I would see someone that specialises in nerve and surrounding soft tissue damage. I got lucky and had an Osteopath who had roots in physiotherapy.

I thought the pain was coming from my teeth or sinuses so I went to a dentist and an ENT specialist and they found nothing. It wasn’t until my doctor saw me rubbing my neck and asked me some questions that we realised where the pain was coming from.

@cazzie was your osteopath able to alleviate the pain?

Oh, yes… my barfing headaches went away. Now… over 10 years later, they’re coming back and I want to import my Paulie to come save me again, but I have learned tricks now that I know what causes the pain. Ibuporfin is my friend, but I have to watch what I do, and be careful how I sleep, so that I don’t fall asleep with my head in an awkward position. No stirring cookie dough by hand, for example.

My neck ‘clicks’.... I’m hyper mobile, so all my joints move a tad too much. Traditional physios don’t like working on me. When Paul was working on me, my neck stopped clicking. It was incredible. No pain, everything back in place and properly supported.

Are the symptoms continuous or intermittent?

I assume from your history it seems rather continuous or nearly continuous. Although she is tortured by her symptoms but at least it doesn’t seem she has any serious pathology like tumor since she has this for about 10 years.

If massive pressure like feeling is there behing the eye then an imaging study of retro orbital space (behing the eye) is a consideration. There might be some local non tumorous pathology causing these symptoms. CT head may not always pick retro-orbital pathology.

If she had sinus CT it might have picked retro-orbital pathology (not guarantee but chances are high).

All the best!

Regards,

Neurologist

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hey thanks for that @Neurologist – how do you get a Retro orbital space done?
can she go to her doctor – nothing has been found at all and it’s really becoming quite disturbing for her as she would rather know what’s causing it than not… but thank you for your insights…. The sinus CT scan came back clear.

Her Family Dr or Neurologist can order this. Even her Eye Dr can get this done.

It is CT without and with contrast.

But before getting this done better to talk to the Dr who ordered the sinus CT and ask them, or the radiologist who read it, whether it covered retro-orbital (RO) space or not. If they think it was covered and normal then not to order CT again. If they think sinus CT did’t help much on RO space then only to get it done.

Has glaucoma been ruled out? (I guess so since this is going on for about a decade now).

Regards,

Neurologist

I’m so sorry that your sister is going through this. Please post if you find an answer. I am going through something similar. If I find an answer, I will post for you. Take care, and thanks for being there for your sister.