Does anyone have burning stinging throbbing through nasal passages and roof of mouth? It’s absolutely horrendous! I have tn on right side of face and jaw aswel. But the nose neuralgia is driving me nuts, I wake up in the morning and I’m totally congested then nose starts pouring then the burning etc all day long it is unbearable…just like to no if anyone else has this and could shed some light on it for me thanks
I have just started this with my fourth episode of TN. I saw the doctor today and asked him why I'm having pain this time in new areas (roof of mouth, sinuses, nose, front teeth, chin) and he said that it will happen anywhere along the face region. I had the test where they send the electric currents into your face and both sides were abnormal in all areas. The rest of my day has been a nightmare because that set off my entire face hurting.
I wondered too about the constant draining. I thought I might start a allergy med just to dry it up, but with everything else he has put me on recently I just have let it go. Let me know what you decide to do. I normally use ice packs, but today swapped over to a heating pad with the sinuses and nose. It seemed to feel better with warmth.
Thanks so much for replying was starting to think I was going mad with these symptoms…they don’t seem as commen do they! I haven’t had the nerve conduction test? Is that what you had? I may ask about that when I see gp monday! My symptoms s have got worse with every attack and am at wits end…I take allergy tablets and sprays not much good tbh my head just feels like I have a cold especially in the mornings! Can I ask what meds your on Sassybelle? I’m on 6 and every attack a med gets added lol this is no life…do you see a neuro? I’m under my local hospital neuro but have asked to see TN specialist in london have appointment next month. Have had this badly for 3years think misdiagnosed as severe migraines and truly had enough! Am so glad I’ve found someone with similar symptoms feels good not to be alone xxx
Yes I have this often and I use ice packs and try and distract myself by watching a DVD or something …but it is the pits and one of the worse aspects of facial pain.Bubble where are you going to in London? Eastman hospital?xx
Hi Eileen, yes the Eastman Hospital appointment next month…are you a patient there? Xx
Yes I am…and I need to go back as the med combo I was put before Christmas needs to be higher.I am in a lot of pain at the moment especially the ghastly nasal one we talked about! They also run a very good pain management programme which is very worthwhile going on .Its run over six weeks and the best bit is meeting face to face people who also have facial pain.Ask at the Eastman when you go.What meds are you on?x
Oh wow Eileen small world! Oh dear am sorry your in so much pain it’s awful isn’t it especially the terrible nasal neuralgia as I call it lol Did they give you a diagnoises and tell you what the sinus pain exactly is? I really can’t wait to be seen pain unbearable! I think well know I’ve been misdiagnosed for last 3years with migraines, I’m seen at queens square headache clinic every 4 months. The pain management programme sounds fab be good to meet other people with similar facial pain issues! Who’s your consultant? I just received my appointment and paper work today, gosh there’s so much info they want before appointment! Am sorry for all the questions Eileen hope you don’t mind xx
Well bubble when I went to the Eastman I wasn’t having the nasal stuff as badly as I have in the last two months so it wasn’t a huge issue.I last went before Christmas. I have read that it’s all part of the facial pain syndrome. I will be very interested in what they say when you go.My doctor there is Dr.Martina Shephard.If you think the paper work is a lot now just wait until you go( ie if you go)on the pain management course …it will be doubled and you even have to see a phychologist before attending .I have also read about people being told they have migraines when it is facial pain.There is a name for your migraine that I can’t remember and its one aspect of facial pain.I get the nasal stuff as well as the “toothache” pain but not the migraines.Please don’t mind asking questions…I’m so sorry you are in awful pain but the Eastman will help you so just hang in there.And yes it is a small world ,great you came on here! Xx
As your probably aware your sinuses are innervated by your trigeminal nerve, and as such is not an unusual presentation.
Research has shown migraine connected to TN and as such a common cause can not initially be ignored.
bubble said:
Oh wow Eileen small world! Oh dear am sorry your in so much pain it's awful isn't it especially the terrible nasal neuralgia as I call it lol Did they give you a diagnoises and tell you what the sinus pain exactly is? I really can't wait to be seen pain unbearable! I think well know I've been misdiagnosed for last 3years with migraines, I'm seen at queens square headache clinic every 4 months. The pain management programme sounds fab be good to meet other people with similar facial pain issues! Who's your consultant? I just received my appointment and paper work today, gosh there's so much info they want before appointment! Am sorry for all the questions Eileen hope you don't mind xx
Bubble, my medicines are as follows:
+I was already taking Topamax for severe migraines before being diagnosed with TN. 100mg a day.
+Metoprolol for irregular heart beats that started two summers ago. I stopped, because it made my BP so slow but when TN started I went back on because the pain made my blood pressure shoot up.
+My doctor first put me on Cymbalta 60mg while I waited 2 months for neurologist appointment. I'm still continuing to take it because it helped me so much.
+The Neurologist put me on Trileptal 300mg. At first I took it once a day for a week, then twice a day until this week when I had another appointment. He put me on 3 a day since I only had three weeks of being pain free this time between episodes where each other time it was 2 or 3 months. I hope this helps.
Also: after the nerve conduction test on my face this week I could not get ahead of the pain. It was my worst day ever. I switched over and used a heating pad and funny thing, my nose and nasal passages have not hurt since then. I'm knocking on wood!!!!
Thanks so much Eileen for answering all my questions absolutely fab to talk with someone! I’m seeing Martina Shephard to apparently I take it she’s good? I’m having a particularly bad day today pain in nasal passages terrible! Thing is whatever this pain is especially the way my nasal passages and roof of mouth are is just getting worse and I’m starting to panic as each relapse or flare meds are upped I’m near the max dose with the main one that’s helped and even thats lost affect! I’m losing hope…feeling negative today! I forgot to ask what meds your on? I’m on 5 I think and still in pain! Its incredibly depressing…can you tell me what happens on your first appointment at the eastman Eileen? Thank you xxx
Hi Bubble,
I have this as well. I have bilateral ATN in all three branches and every few months it likes to switch things up. The sinus, nose, roof of mouth thing is new for me this past winter. It is painful and feels like a sinus infection. I also get a stuffy, runny nose on one side and a teary eye during flare ups.
Look Glossopheryngeal Neuralgia as well. I have some symptoms of that and that nerve controls some of that area.
Jane
Hi just Jane 375mg so sorry you have these symptoms to…funny enough I was diagnosed with tn and glossopharyngeal neuralgia so your right! My meds aren’t working at mo am in agony…what meds do you take? Xx
Its a shot in the dark. BUT you may want to take an OTC antihistamine (one WITHOUT a decongestant) The new generation has exceptional Anti-Inflammatory properties that work by inhibiting inflammation causing hormones. The second generation such as Claritin or Zyrtec seem to me more effective than first generation like Dimetapp and Chlor-Trimeton. Of course always check with your pharmacist and doc for any possible interactions.
Limiting just a bit of inflammation can make a huge difference sometimes.
Hi Modsupport I take an Antihistamine called fenofexadine which I don’t think does much for my symptoms. I’m very worried as to why my nasal passages are so badly affected?? I’ve had allergy testing ct scans and everything is completley normal…I dread to think what I’d be like without meds! Thanks for your input Modsupport x
Hi again bubble,
I try taking antihistamines too and they don't help. I am on Nortriptyline which has helped quite a bit but not lately. I have flare ups that march right through that med.
For now I am just dealing with it and hoping that spring will bring better days.
Jane
First Bubble so sorry you are having one of those days…you wonder just how you can go on…and the pain starts in the am and you know you are just going to have it on and on and on and all you want to do is cry! But you will get the right combination of medication,you really will!
In the beginning I was on Pregabalin,Nortripyline and Clonazepam and the pain disappeared like magic.Bliss…but after awhile the pregabalin dosage was too high and I had to come way down.It was the pregabalin that managed the pain.
Now I am on 25 mg pregabalin and .50 mg of clonazepam and this combination is way too low and the pain is dire sometimes.Hence the reason I need to get back to Eastman …there’s a 7 week waiting time so won’t be seen for awhile.
When you first attend arrive a bit earlier as you need to fill in a longish form,well just ticks,as to how you have been in the that previous week.And then you have a very long session with Martina .Shes good and she will help you.She also writes an almost epistle in the following up letter to your doctor and to you.Ask her about the 6 week course on pain management .
Try not to panic my dear ,take some deep breathes( easier said than done I know) but hold onto the fact that you are almost at the Eastman,there is hope,tell yourself that…have you anyone who can just give you a big hug?
That glossopharyngeal neuralgia is what I must have.
What meds are you on?
Anyway this comes with a big understanding hug!
Hi Eileen aww thank you so much for your lovely hug and message so very sweet! Doing a bit better today am seeing doctor this afternoon he said he may admit me to hospital for a bit to get pain managed? Not sure I want to do it tbh? How are you doing? Am sorry to hear you have to wait 7 weeks to be seen by Eastman…is there anything your gp could do for you? That’s a long wait can they not see you earlier? Thanks for heads up about arriving early at eastman I’ll do that and am glad to hear Martina Shephard is nice and thorough really need a diagnoises. Have you had any surgical treatments offered to you or mri? I think my pain has gone to bad for meds now…I forgot to tell you what meds I take…it’s alot I’m rattling lol I take pregabalin 200mg, carbmazepine 700mg, nortriptyline 50mg, propranolol 80mg, Sertraline 100mg and allergy tablet fenofexadine 100mg so I’m guna be a nightmare to treat lol! I do get lots of lovely hugs from my 5year old which make life worth living…I can deal with normal tn but not the way my nose is affected that the worst part for me and yes your right there’s still hope yet roll on April for appointment! By the way yes you could very well have glossopharyngeal neuralgia just another thing to add to the list lol hope your pain is low and sending you gentle hugs xxx
Hi aiculsamoth, I’ve done a bit more research and yes your right the sinuses are in innervated by the trigeminal nerve…but I don’t see many people present with the symptoms I’ve got…my own gp keeps saying the pain in your sinuses cannot be coming from your trigeminal neuralgia!! It makes me so mad that he says this!! Think he needs to go back to medical school lol xx
He's not entirely incorrect bubble.
IF the pain is coming from one of the branches of your trigeminal nerve the irritation is not what would be considered "TN" something else is haywire and is causing pressure on those (and other nerves) For example if you had a "procedure" (MVD, Cyberknife etc) it would have little or no effect on the pain. That's assuming it isn't referred pain. In which case one would assume some other symptoms.
What does the ENT say?