Hi there, I am new to this site - and am not sure quite how to go about asking all these questions that I have regarding TN - but since I am itching to have some answers and am desperate to see if I am the only one out there that suffers this way (I hope not!) I just thought I would take the bull by the horns and get on with it!
I was diagnosed last year as having TN by a Neurologist and the MRI showed I have a vascular loop pressing against my left trigeminal nerve. I have been put on Tegretol, currently am at 1000mg per day, but am still having bolts of pain almost daily and stiffness in side of face as well as a sore eye socket. (just to name a few of the things that like visiting my poor face on the left side still).
Everyday I have been having this awful eye pain, it wraps around and under my eye socket - I have noticed that it is particularly sensitive to light and that this can trigger it off. Going from shadows into bright light is one of the biggest triggers - it becomes very annoying and sore.
I have seen a Neurologist here in New Zealand, but he does not think this particular pain is related to my TN. I have been placed on 75mg of indometacin a day to help the TN blow outs and he is hoping it might help with the eye.
My question is what do other people think and more importantly does anyone else get symptoms like these? I am so frustrated and feel so broken at the moment. It has been 10 months of pain and no sign of it stopping :(…
I have a lot of eye pain/icepick through eyeball, sometimes twitches, sometimes blurred vision with or without pain, but never had something like what you are describing. It could be some kind of cluster headache or migraine? Because of all the eye pain I was having, I also tried a lot of meds like Imitrex, indomethacin (SO hard on the stomach), triptans. I happen to be allergic and didn't find relief, but those would be the ones to try if it were a migraine symptom (the triptan family like imitrex etc)
Eye pain is common, and in general you are sensitive and in pain and on edge and stuff so who knows,I would think maybe the light could be a trigger. If you're in a rainy area, perhaps the barometric pressure plays a role (I find that, personally).
I tried a medication called dolobid, a very strong advil, and it knocked out the stabbing pain. I had tried vicodin, everything under the sun really. I highly suggest trying it if you can't find relief since it is non habit forming and a very old medication. Also hard on the stomach, but it coats your nerves and just feels great.
Best of luck, these are frustrating times but you will get through it! :)
Light sensitivity is more often a characteristic of migraine or cluster headache than of TN, as the poster above has remarked. Indometacin is an anti-inflammatory med, and TN for the most part is not an inflammatory disorder. You probably need to talk with your neurologist about being tried on Tegretol, Trileptal, or Neurontin, as all three are significantly more effective against TN than the NSAIDs medications.
One further note: Dolobid (Diflunisal) is in the class of Non Steroidal Anti Inflammatory Drugs. It is commonly used against osteoarthritis. This class of medications is less often effective against TN pain than the anti-seizure drugs, though it may have a role to play for some patients some of the time. There are also significant precautions to be observed with this medication. The following link from the US National Institutes of Health is authoritative:
Thanks for replying guys. Red, I am already on 1000mg of tegretol daily which seems to have helped to a certain point but am still getting symptoms of TN regularly - I have been told that there is no point bumping this med up anymore as neurologist feels there will be no real benefit to that ( for my other TN symptoms) and I feel I am getting pushed to have balloon compression surgery (which I am not keen on). So wish I was “normal” again!
Balloon compression seems to be less effective than RF Rhizotomy, if you're going to do one of the destructive procedures. If you're a candidate for MVD, it has the best long-term outcomes of any of the surgeries. Likewise, you might get better pain management with the 1000 mg per day of Tegretol that you're already on, by augmenting with a low dose of one of the booster meds: Baclofen, Flexeril, orValium, Lyrica or one of the NSAIDs. This bears talking about with your neurologist.
Sadly it takes up to 6 months here to getting a booking with a Neurologist using our public system, although I just saw one this Tuesday gone and hopefully will be meeting with a Neurosurgeon (once again within a 6 month time period) to discuss options, but Neurologist seems to be sure balloon compression is what they will offer me. I am trialling indometacin for a month as was suggested then apparently have one other form of medicine which he has only disclosed to my GP before I have lucked myself out (as far as they are concerned) forcing me to really think about surgical treatment. Sadly we cannot afford to get private health care for this and are not insured either, so will have to rely on public system.
Mel, I am light sensitive on the side of the TN. I have to be careful of early morning light, opening the curtains on a bright sunny day is a no no. It causes the eye to ache the remainder of the day. I also wear sunglasses on bright days because of this ache in my eye. Sunglasses used to make my ear to eye area ache but I am now able to use them again, although they sometimes heavy on the bridge of my nose , just feel too heavy for my face.
Both eyes pretty bad. So neuro gave me Topomax, cuz migraines started then too.( which I still take ) Now I am on Trileptal. I still have sensitivity just only when it is really bright and sunny and sunglasses work and I don't always have to wear them, just occasionally. Hit and miss, just like everything else with ATN.. Blah
Mel S said:
In both eyes Min or just the side that was causing pain in your head?