[Snailz]

Hi all I could do with your advice please, for a month I have had a constant pain behind my left eye, it never ever goes, I have been to the emergency room as the pain changes frequently from moderate to severe to a point where I feel like I am being stabbed, I get dizzy and feel very sick, then it eases and returns to a dull moderate. Sometimes when I touch my cheek and nose they feel tender but not always, I have had 2 lots of anti-biotics, migraine medication, and today after another visit to emergency I was given extra strong pain killers that don't even touch it. I had a ct which was clear. I am waiting the results of a MRI. My doctor started me on tablets for trigeminal neuralgia, I was on them a week and the pain seemed to ease however after a week I saw my neurologist and he told me to stop taking them as TN does not present with persistent pain? I feel worse after stopping them could he be wrong? One doctor thought I may have optic neuritis but my eye exam showed no inflammation so it was disregarded. I'm really worried as I am in so much pain. Any ideas what this could be? A month is a long time for constant pain thank you

[jjlsongbird]

Originally Posted by Snailz

Hi all I could do with your advice please, for a month I have had a constant pain behind my left eye, it never ever goes, I have been to the emergency room as the pain changes frequently from moderate to severe to a point where I feel like I am being stabbed, I get dizzy and feel very sick, then it eases and returns to a dull moderate. Sometimes when I touch my cheek and nose they feel tender but not always, I have had 2 lots of anti-biotics, migraine medication, and today after another visit to emergency I was given extra strong pain killers that don't even touch it. I had a ct which was clear. I am waiting the results of a MRI. My doctor started me on tablets for trigeminal neuralgia, I was on them a week and the pain seemed to ease however after a week I saw my neurologist and he told me to stop taking them as TN does not present with persistent pain? I feel worse after stopping them could he be wrong? One doctor thought I may have optic neuritis but my eye exam showed no inflammation so it was disregarded. I'm really worried as I am in so much pain. Any ideas what this could be? A month is a long time for constant pain thank you

A month is definitely a long time to be in pain and have no answers! First of all, typical TN unusually doesn't have constant pain (though I did for awhile) but "atypical" TN does. And usually if the meds for TN help that is considered confirmation of the diagnosis. Hang in there. You might want to get a second or even third opinion (seek out other neurologists). I hope you get relief soon!

[Snailz]

Hi thank you for your reply I wish I could get a second neurologist but sadly I can't I live in the UK and here we have to go through a referral system Which takes a long time, I was rushed through But we don't get an option of who we see, Did you get eye pain or was yours something different? Thanks again.

[jjlsongbird]

Originally Posted by Snailz

Hi thank you for your reply I wish I could get a second neurologist but sadly I can't I live in the UK and here we have to go through a referral system Which takes a long time, I was rushed through But we don't get an option of who we see, Did you get eye pain or was yours something different? Thanks again.

Well if you can't get a second opinion, perhaps you can do a lot of reading online and/or get some of the books by experts. Check out the Trigeminal Neuralgia Association website resources. Read the threads at the top of this section of NeuroTalk. The more you learn, the more you will know what questions to ask your doctor and what things to tell your doctor about what you are experiencing.

No, my pain wasn't around the eye. Mine was in the lowest branch of the nerve - around the lower left lip. I had lightning bolt, stabbing, electric shocks. But while waiting to rule out other causes before treatment started, the pain became constant, burning pain so bad I couldn't do anything but lie in bed and breath deeply.

[JVerive]

jjlsongbird is absolutely spot-on! Trigeminal Neuralgia does not typically present with constant pain, but the atypical variety very often does. Also agreed - the positive results from the medication (probably carbamazepine or amitriptyline) are enough to establish at least a working diagnosis of neuralgia of some sort.

Your doctor should continue looking for a cause in order to determine a long-term therapeutic plan, but in the meanwhile is duty-bound to treat your symptoms.