(I am having trouble clicking the right buttons tonight, so if this is a doubled post, I didn’t mean to.)
I’ve been dealing with gradually worsening TN over the past decade or so because of multiple sclerosis. Nearly a year ago I had problems with a flare-up. Here it is again, I am fortunate that my life has been manageable with Trileptal.
I woke up last week and tried to blow my nose, and have not been able to since that time because the action causes great stabbing pain (but not continuous like a TN attack). Even if I could blow my nose I can’t wipe it because I cannot touch even the hair on my nose, the pain is so bad. It’s just been an awful mess, having to let my nose drip. Tonight I bought “Aspercreme with 4% Lidocaine” hoping that a topical might afford some easing of the stabbing pain. I was going to try to put some on my nose somehow, and maybe use a Q-Tip to put some inside, but then I read the directions and they say not to put the cream on mucous membranes.
Has anyone ever used lidocaine cream and had it take away the pain or made it less intense? I doubt would use more than a touch inside my nose if I could even apply the cream without intolerable stabbing.
All I want for Christmas is to blow my nose and wipe it.
I’ve been there. We live in a world with limited solutions. That’s the reality. Beware of your desperations. I speak from experience. Desperate people can do things that are irreversible. Beware of people who offer Quick and absolute solutions. I Don’t know your diagnosis. Lyrica Has helped me. Don’t take nearly as much as prescribed. I have to balance side effects. Sleep and low stress are critical but will not completely resolve pain. Sorry to say that empathy will be in short supply. My wife is considered an extremely empathic person but typically wants to treat me as normal. Almost on a daily basis have to tell her not to expect me to talk to her across rooms. My favorite time of the day is when I retreat to my bed with the support from vaping weed.
I’ve been using a compounded lidocaine cream and I’ve been really happy with it. But definitely only use it as directed and not internally
Sharon from ModSuppport
I have an 8% lidocaine nasal spray compounded for me, which isn’t for my nose but for the actual TN overall. So it’s safe to put that one in your nose. I also have a topical viscous version (2%) that is Rx but not compounded, and that can be put in the mouth or nose. These things have definitely helped me when I’m having a bad time.
Hi. Sorry to hear about your issues with nose. It was also one of my major pain/trigger points. I was convinced that the pain in that area was caused by the sphenopalantine ganglion being wrapped around the nerve. I purchased a compound with lidocaine in it and it provided only minimal relief. Maybe if percentages were higher it might have been more effective. I did also come across what they call the SPG block where they stick a felted tipped probe with some form of anaesthetic in your nostril right up to where the ganglion. It provides immediate relief I have read! I did try putting the lidocaine compound on a cotton swab in my nose and it did work for about 30mins. It didn’t work every time though. I wouldn’t personally recommend it.
Last week I had the MVD op and am finally totally pain free after 8 years. I tried to manage the pain using various methods including acupuncture naturopathic and then since March this year Lyrica. Last few weeks the pain was intense and I don’t want to become a zombie on Lyrica I agreed to the MVD.
As we all know it is different for everyone and I hope you can find a solution to managing this horrible disease.
I have and it did not work for me. Please know that everyone is different. Some things work for others and may not work for you.
I am SO sorry that you suffer, too. I am fortunate that I don’t have to expect empathy if ever I need it; my husband has passed on, and because I am a disabled veteran and receive compensation for that, I don’t have to leave my house if I don’t want to. My diagnosis is multiple sclerosis. Again, I am fortunate that the neurologist I had when this started gave me the medicine that works right off the bat. I, too, must balance side effects, as the Trileptal causes ataxia and I take some nasty falls if I am not paying attention.
About the vaping weed - as soon medical weed became available in this state, I got my card. Too bad, weed, either smoking or eating, hasn’t done a thing for me. I guess it has saved me a lot of money finding that out. I took gabapentin which has similar effects to Lyrica for a different kind of MS pain, and it worked well, but it facked up the rest of my life so I quit it. If it were the only thing that worked on this TN, tho, you know I’d be taking it. I feel for you when you say not to expect to talk across a room. When mine is really irritated, I can’t say words with m, b, or p.
Thanks for the information. I suppose I can ask my Dr. to get some compounded. The OTC cream I bought is 4%.
Years ago I was prescribed some lidocaine cream that did not work at all. But I am thinking the concentration was too low, maybe. If it does not work for anyone then I wouldn’t waste my $ trying it again. If it does work for some, then I will try it again. It hurts worse this time when I touch the hair which Is why I was thinking of numbing.
The zombie world is why I wouldn’t try Lyrica. Gabapentin did it to me so I am sure Lyrica would too. MVD wouldn’t work for me because mine is due to demyelination from MS and the pain might even be coming from inside my skull and not my face. I am SO happy to hear you are pain free! Yes, the pain is intense, and if someone has never experienced it, they just don’t understand.
I know where you’re coming from. I had an attack that lasted for 5 years w/o a break. It went from never ending lazer attacks on the whole right side of my face. During the last year of it, 2022-3, I ended up twice in the er for the most horrific pain, I think, in human history. I just wished to die for a whole year. Considering that I have a pile of different pills for my MS I really could have ended it then and there, but obviously somehow I’m still here to tell the story. During the last year +/- it’s always been there at a higher or lower pain level, but has never once left me alone completely. I wish you better luck. And oh! I haven’t found anything that really helps. Only one pain pill actually for other neurological disorders called /lamotrigine/, probabably an antispasmodic and pain thing that starts working almost immediately.
I use a compound cream that has ketamine, lidocaine and such (not for internal use) and it can be a big help—like if I have to blow my nose, brush my teeth, hair or shower even. I have MS and TN, too…I know this pain. Ask for a couple compound creams, an internally safe one and one for the exterior of your face and scalp…they help!
Lidocaine gel on the outside helps a little sometimes the nerve that runs right near the nostril at the base by the cheek is the place where the nerve connects to inside is where I put lidocaine and along my cheekbone a little ways from there kinda down at an angle toward the corner of my jaw about an inch for only nose pain, but if it’s my whole side of my face do that plus behind my ear on my scalp just a little above the middle before the hairline and in front of my ear up to the top of my cheekbone and a do a dropper full of b12 sublingual liquid.
Thank you for this response. I tried the lidocaine gel. Didn’t help. But I never heard of taking the B12 liquid. Do you take it to treat the pain, or do you take it to prevent the pain? I have been prescribed B12 tablets to take daily because blood work showed low levels. It seems the liquid would get into my body faster. Where can I get it?
What a horrible story! I am so glad lamotrigine has an effect for you. When I have an attack of the constant pain, if I can get 600 mg Trileptal and a Flexeril tablet in my mouth and some water to swallow, that has ended it so far, except the next to last time I had to add 300 mg more Trileptal. This is so hard to do because I can’t open my mouth to get the pills in, and I certainly can’t swallow very well, because both of those actions just add fuel to the fire. I tried the lidocaine I asked about, and it does not work. A lot of Trileptal takes mine away so far, more than prescribed. That’s just the way it is, and I will do what works.
Thanks for the specific information, The VA is good about giving me what
I ask for.
Thanks for the reply. It did not work for me either, sad to say.