Hi. I was just wondering if anyone has any suggestions for pain that’s in the nostril? My pain lately has been in my right nostril. It’s a burning pain and it’s aggravated when I eat or drink anything.
Thanks for your input,
MJ
I forgot to add when I get the pain it also radiates to my right ear. Has anyone else have this happen?
Thanks,
MJ
Hi mj12 , I have been getting that same pain so bad it hurts just to breath through my nose . I just started using a compound cream that has gabapentin clonadine and lidocaine in it . It helps pretty good but very greasy . I use it when I’m home and apply as needed . I apply every where I have pain my ear cheek forehead And around my eye. Hope you feel better!
Hi Liz6,
Thank you for your response. I’m glad the cream is helping you. My Dr. ordered something similar for me. I’ve been using it but I don’t think it’s that helpful for me. I’m still having a lot of pain. I’ll keep trying!
Hmmm, have you tried a nerve block? I get one for the eye forehead and scalp area, it cuts the pain by about 30% .doesnt sound like a lot but multiplied by 24/7 , I’ll take it! Good luck.
Thanks Liz 6,
I have had 2 nerve blocks. The first one gave me relief for 1 day. The second one didn’t me any relief. The Dr. said to give it 2 weeks. Today is 2 weeks. There is a little relief at times, but unfortunately I’m still getting that burning pain. I see the Dr. in 2 weeks. He said at that point we can decide if we should do another nerve block. The one will the steroid or one which pulsates radiation. I don’t really care for radiation, so I’m thinking about it. Have you ever had a nerve block? Thanks for all of your information. I really appreciate it.
MJ
Yes, and despite my experience with having TN but thinking I had a dental problem for quite a while only to eventually have the problem become so severe that I sought medical attention, I still confused these nose/ear pain symptoms as something related to a sinus infection and saw my doctor a few times. Just like my dentist had during my initial TN stages, the doctor kept looking in my ears, nose and throat and telling me that I didn’t have an infection. Then, finally, just as with my initial ramping up of TN symptoms, the nose/ear pain got so bad that I couldn’t speak without triggering excruciating pain. I saw a neurologist (finally) who said that these new symptoms probably were, in fact, related to my TN (my initial pain was localized to my top teeth) and prescribed an additional medication.
Unfortunately I didn’t like any of the new medications he attempted to treat my TN with and ended up just returning to Gabapentin. The kicker, though, is that I am also back down to the dose of Gabapentin I was taking before the ear/nose pain started and that pain has not returned. In fact I am trying to reduce my dose of Gabapentin now to see if maybe all of my TN symptoms are in remission. I’d love to be meds and pain free.
Hi Jeff,
It sounds like the gabapentin has helped you. I’m happy for you and hope you continue to have good relief. I took it a while ago and if it helped it was only for a short time. I’m hoping the nerve block will help. I’ve taken all of the anti seizure meds , so I think that’s my best option right now
Yes same thing with me 1st nerve block worked good 2nd not so much . My nostril is burning so bad at the moment , it sucks . Just took my gabapentin and baclofen I’ll wash my makeup off and put on compound cream and hope it calms down. I think at times its hit or miss . I’ll let you know if I find anything that works better than what we’ve been trying.
Hi Liz 6,
I’m sorry you’re having that terrible burning pain. I know it sucks. I hope that cream calms it down. I’m still doing it and hoping it helps. It so good to have this site to be able to talk to people who totally get it because most people don’t.
It’s so true, I have type 1 and 2 T N, failed MVD a year ago .my pain is constant unless I can fall asleep… People can’t understand the pain and after a while I think they don’t believe that it could go on and on. That’s why it’s so nice to connect with others here who completely get it. Stay strong !
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I truly understand how you feel. The TN pain is constant and I can’t believe the number of people who doubt it. The pain in my nose started after a last ditch effort to end the pain. A 1 and 1/2 hour MVD lasted 6 and 1/2 hours, 7 weeks in a coma and 2 months in a Rehab facility. I attributed the nose pain to a “nicked sinus” during the surgery. I’m at my wits end and am going for “Scrambler Therapy” this morning. God bless all of us who live with this hellish pain.
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Hi Ellen 2, I’m sorry you had such a terrible experience when you had a MVD. You sure went through a lot. TN pain is so tough we try things that we try things to get rid of the pain. What is scrambler therapy?
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Had a patient with occipital neuralgia, treatment to neck helped both nasal and occiptital pain. Anatomy backs up the connection, he didn’t mention the nasal problem on initial consult, but both were relieved.
Hi aiculsamoth,
I’m not sure what treatment you’re referring to. Is it a nerve block or chiropractic?
Thanks for responding.
Hi Ellen2 , I hope that your scrambler therapy treatment went well for you and gave you some relief from pain. I’ve heard some good things about this treatment. Where do you go for treatments? Is it local for you? You have been through so much , you are incredible ! Sometimes I feel all I do is go to Dr appointments searching for answers to this pain. It’s exausting and I understand your journey . God bless.
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Ellen- how did the scrambler go? My wife had the procedure done twice. The first time was two weeks, and the effects were incredibly positive. She was in remission for 3 months or so (we’ll take it!). After coming out of remission again she went back. Results were great while in treatment, but this time were not long lasting.
Also, for consideration, pain that ‘migrates’ from one spot to another is worth considering if it might be viral.
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Hi Sean,
What is scrambler therapy? I’m not sure what it is. Glad it helped your wife.
Thanks
Scrambler therapy works on the principle of reprogramming how your brain interprets pain signals from the nerve. Nerves send a certain pattern of electrical signals to your brain which are interpreted as “something’s wrong”. Upon receiving that signal, the brain reacts by creating the perception of pain. Scrambler therapy retrains the brain to instead interpret that signal as “everything’s fine”, and so the brain never creates that pain perception.
The nerve does not stop sending the same signals which it thinks means something’s wrong, the brain just now thinks that signal means all is good.
When scrambler therapy works it is astonishing. It doesn’t always work though. There can be a number of reasons why. Some brains are just stubborn, and resistant to reprogramming. Sometimes there is a very good reason the nerve is sending the pain signal, and eventually, sometimes sooner rather than later, the brain figures that out, and again starts interpreting the signal as pain.
For my wife, she went for two weeks. When she started the therapy it was during a severe break through pain period, one of the worst she has ever experienced. The first few days we were not sure it was doing anything. However, by the third day they almost zeroed her pain out during the session. A few hours later the pain was back, by each day the results lasted longer. After two weeks her pain was at a two or three. A few days after she returned home she was in remission. They said that typically, after the first time, results last three months or so, and then the the brain starts to “go back”. That was exactly the case for my wife. She returned again for “tune ups”. During those second sessions they could zero her out almost immediately, but each time the effects did not last as long. Within a few hours the pain was back. Having said that, it never got as bad again as it had in the past for the months that followed. That was a few months ago, and it looks like she is going back into remission. We don’t think that’s because of the scrambler therapy, but scrambler therapy may have helped the pain be overall more subdued. She is also working on several other approaches as well, and we suspect that one of those has more to do with her going into remission this time.
This is getting lengthy, but a couple of final thoughts regarding scrambler therapy; the upside is when it works it is spectacular, and there are zero negative side effects. If you do it, please go to a very qualified doctor. We used Dr D’amato. He is a pioneer. The downside, it is expensive and insurance probably doesn’t cover it, and results are not 100%, which can be discouraging.
Sorry so long winded, but hope that helps.
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Thanks Sean,
I appreciate your explanation. Where did your wife had it done? Also I was wondering how much it costs?
Thanks