Please help: Is this trigeminal neuralgia?

Posted , 8 users are following.

I am not sure if this is TN but also not sure what else it could be. It started with pain deep in my ear. This spread to my nose/cheek area, under my eye, around my eyebrow and around my lower jaw. Its an intense deep sort of aching/throbbing pain but no electric jabs so far. The location sounds consistent with TN but since there are no electrical sensations and since its fairly constant Im not sure that fits TN. I have no cold, no sinusitis or other symptoms and it came on fairly suddenly I had soemthing similar a while back which ended up with immense toothache too and  though they couldnt actually find anything wrong with my tooth the pain subsided after tooth treatment so i assumed that was the cause. Now i have the whole thing again but no tooth pain. At the point right of my nose, sort o fbelow my eye its a sort of stabbing pain radiating outwardly and I have such terrible ear pain (deep inside). If this isnt TN, do any of you have any thoughts what this could be considering i have no signs of having a cold at all. Thanks so much for your thoughts :-)

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  • Posted

    Hi Ray.

    Sorry to hear of your discomforts. Everybody starts off with different symptoms of TN but quite a few with the electric current feeling and stinging of the tongue etc, as in my case, is the norm. As your feelings are in the nose, ear, cheek area etc at first I would have said maybe the signs of a cold or infection brewing. I've had similar feelings in the past, which not only turned out to be a stinking cold but I ended up with laryngitis and an ear infection to boot.  I too thought it maybe my tooth at first, right at the lower back, and I too went to the dentist and they couldn't find anything, I was even referred to a dental specialist. My dentist wasn't convinced it was tooth related and my Dr wasn't convinced it was neuralgia. But she had to relent in the end.

    But I'm sure I've read on here people with similar pains as yours and their Dr diagnosed TN. If it continues without ease I would get a check up with your Dr who may refer you to an ENT clinic. Because my TN is really bad at the moment different Dr's at my surgery has suggested either, facial Xray, referral to the ENT clinic and now a pain clinic. I won't know which its going to be until my appointment on Friday. 

    The sooner you get it checked out, especially if it's consistent without any relief, the quicker you'll get a diagnoses and the medication needed.

    Let us know how you get on. Good luck.

     

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    • Posted

      Thank you Gloriana, it does't really feel like something sinusy but i will wait and see. If it persists i will definitely see my GP. Again many thanks for your answer and best wishes, R
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    • Posted

      Thank you Gloriana, it does't really feel like something sinusy but i will wait and see. If it persists i will definitely see my GP. Again many thanks for your answer and best wishes, R
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  • Posted

    sounds a lot like a cluster headache. you might like to google that and see if any of it matches what you are experiencing. just a thought
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    • Posted

      Thank you Valkyrie, reading up, I don't think it's really cluster headache but i can see why you thought of it. I will just wait a bit and see what happens and then visit my doc if it doesn't get better. Best wishes, R
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  • Posted

    It sounds like TN for sure, I have the same issues for 18yrs. Very painful and unbearable.  Your best bet is to try Neural Prolotherapy. It's injections to the face. Gamma knife is another option but I would try my best not to do any surgeries because of terrible side effects. It came to the point where I didn't want to see any of my friends, do any activities and I definitely didn't feel myself because of the effect it had on my self esteem. It can be fixed that's the great news my friend! 
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    • Posted

      Thanks so much for your answer. The pain has imporoved for now so will wait and see what happens. I was going a bit crazy before when I as feeling it full blast. thanks for all the info :-)
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    • Posted

      Hi Nascar1,I'm thinking about having neural prolotherapy for my atypical trigeminal neuralgia.I have been looking for someone who has had it done....now I find you..can you tell me about it,how many sessions you had,how long it took to work etc .Thank you,so glad you are better!
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  • Posted

    Hello ray91776,

    I'm no doctor - so I preface everything I write with that statement. What I am is a sufferer since 2007, incorrectly diagnosed until 2009. Had perfectly good molar root canaled + capped then extracted + Maryland bridge. Sure felt like a years earlier issue solved by root canal + cap. TN comes and goes. It may or may not be related to teeth issues. So many varieties. I know someone who got it from both gold and silver fillings. Went to all silver and solved. Eventually my endodontist was hitting the area with a hammer. He said if you feel nothing now, you need to see a neurologist and get the correct medication. Amen. Defer to a neurologist !

    I've had the electro shocks which are just unbearable. Fortunately my med works right away. Shocks are seconds in length for a few minutes. Staying strictly on medication schedule prevents those. Also is what I call the dull pain, which sounds like what you have at the moment. Those go for a day to 10 days or so, but are minor relatively, more like annoying. Have found no way to eliminate those. Good luck to you.

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    • Posted

      Thanks so much for taking time to answer and fill me in on your "story". i really dont know if i actually had root problems or not but since the pain went away after treatment i assumed that was the cause. this evening the pain has largely subsided so wills ee what happens. thanks again for your words :-)
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  • Posted

    Hi Ray,

    My story is somewhat similar, I was sure I was having tooth pain. Over the last 1-1/2 years I would experience a light throbbing pain in my left upper and lower jaw. My dentest would say it wasn't my teeth (thankfully, no guess-work root canals!). Eventually it would go away. This happened twice before the latest episide which was horrible. Eating anything would bring on 30 minutes of long, aching torture, very much like a dentist was doing surgery without any novicane. I became terrified to eat, and lost 10 pounds in a few days. Other times it would just come on from nowhere to remind me who was boss. I never had the "sharp, electric" jolts of pain normally described with TN.

    I saw a dental specialist who told me to see my general Dr. He felt right away it was TN. This all happened two weeks ago (after having the pain for the previous 3 weeks). He prescribed Carbamazepine (generic Tegretol). 200 MG twice a day.

    This helped A LOT. The side effects for me are a tingly/numbness in my lips and tongue, and I would get tired earlier at night.

    My next step was to see a specialist. I went to Springfield Mass. and met with a very highly regarded, excellent Neurosurgeon named Dr Kalia. He looked at my MRI and explained that I didn't have MS, or a tumor, and that my unusual symptoms weren't that much of a surprize. 

    He recommended that I stay on the med for a couple of weeks, and then experiment with weaning myself off to see if the condition has subsided.

    Just last night I skipped my PM dose, and though I was afraid to eat this morning, I had no pain.

    I'm afraid that based on the progressive nature of this condition there will be a time that I will need to full dose again (and possibly more), but for now in my case I am moving forward this way.

    I am so very sympathetic to anyone suffering with this. It comes on so unexpectedly, and is truly awful. It is such a life changer. In my case I think that if I could somehow maintain where I am now, I would be so happy, but I am not optimistic of that.

    My advice to you is to see your doctor asap, and to stress the suggestion that this is likely Tn. The med I'm on began working after a day or two. It helped me a lot. Before that I wanted to just give up.

    God bless.

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  • Posted

    To add to what i mentioned before, TN has the ability to come back stronger even after signs of improvement on/off of meds. Meds should be a temporary fix until you  find a solution in this case. In the long run, consider strongly what I've mentioned previously. All the best. 
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  • Posted

    I have just spent two days in hopsital with what I thought was a bad ear infection.  It had been going on for six weeks and I had taken three weeks of antibiotics. A heariny test and a pressure test showed no real problem, however the doctpr picked up my numbnesson the right side of my face.  I have to return tomorrow (Sunday) for an MRI  but have started treatment for TN.  Never heard of it before.  At the age of 41 I can see why the GP referreed me to the hopsital for a second opinion.  I just hope the results show nothing more sinister!
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    • Posted

      Yes, you may at last find out what is happening. Numbness is apparently something to do with the (7th?) cranial nerve so wait for your Neurologist to tell you what is going on. Sometimes it can be a benign growth that is just pressing on it a little bit. Please get back to us Christina and let us know how things are after your MRI.
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    • Posted

      Sorry Christina, that was VERY badly phrased which is what i get for watching TV at the same time as i am typing. What i should have said was that i it often is something to do with the 7th cranial nerve as mine is. I have both a vessel against the trigeminal nerve which gives me the electrical pain and a "lesion" leaning agains the 7th cranial nerve which gives me the facial numbness. Neuralogist says these lesions are almost always benign and when he fixes the vessel problem he will fix the other one as well. yours may be something quite different.
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    • Posted

      5 weeks from the onset, and the second type of medication!  I have had two weeks on carbamazepine; my GP took me off these as I had such severe side effects - slurred speech, confusion, tiredness etc.  I then had two weeks without medication, where I was relying on paracetomol.  The MRI was clear and I was discharged from ENT and am now awaiting a NHS referral to neurology (could be 6 months).  I have since started gabapentin which has so far, had no side effects.  I am on 900mg a day.  Can't sat the pain has improved, but not increasing the dose until Christmas Holidays! 

      ray91776, my pain seems very much like yours.  Constant pain, occasional pins and needles down my right arm and leg.  Deep rooted pain in my ear. 

      If anyone has had any good results with this medication I would like to know.  What dose have you been on?

      Thanks

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    • Posted

      When they did your MRI did they use a contrast dye (by injection)? My MRI didnt show anything until they did it with Contrast medium.  I dont know anything about the medical system where you are but can you not ring a Neurologist and ask to be put on a list in case someone cancells their appointment? I did this and was seen in about a week. Maybe different here though. I am on only 600mg of Carbramazapine at present and just starting to get a little breakthrough pain. My neurologist wants to add just a bit of Lyrica (not much he says to avoid side effects) Pain is very little now that summer is here. Anything over 28 degrees is good. Dreading the winter..
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    • Posted

      My MRI was done without contrast dye.  I think once I have an appointment with the neurologist, I could try and bring it forward, but haven't got as far as being allocated yet!  I am finding the cold weather here really bad at present - luckily I am not going skiing this Christmas! 
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    • Posted

      Dye for brain MRI pretty standard I think. 600mg Carbamezapine did me good for 5 years, but I did have to increase to 800mg. 800 has made all the difference.

      Eddie13

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    • Posted

      Hi Christina.

      Alhough this post is over a year ago I want to know if you could help or anyone else. Ive jusy been diafnosed with TN and my symtoms sound just like yours. The docs didnt hink it was TN at first but i jad a general mri (without dye) and dodnt shoe anything. My neuroloist said he thinks its cluster headaches but 6 no ths on i find myself in An E (No let up from the pain in between this time) with the Docs at the hospital saying its TN. I have demanded my Go refer me to a pain clinic and im due for a review wirh my neurologist at the end of the month but i feel so hopeless. im on meds that are taking the edge off but this cannot be a long term measure for me. Can i ask what did you end up doing as a relief measure and did it work? And what are yu elegible for if the MRI shows nothing but tou still have pain?! Im concerned that the docs may limit my options if they see nothing on mris?! I cannot live this way

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