I was just watching some videos where people taped their TN attacks and their experiences and triggers. They published it for their doctors, to help educate and in a couple cases to ask for the right to use medical marijuana to ease their pain. And in every video, people grabbed their face or had some sort of ice bag on it. Now I know everyone experiences it differently but I thought primarily people COULD NOT touch their face. I mean I thought I was lucky because I don’t always get attacks if I put makeup on, take a shower or scratch my face. But mostly, I stay away from it and I do not like people to touch it because it may only happen one or two out of ten I don’t want the attack if I can control it by leaving my face alone. So made me curious, can you touch your face? Do you ever find comfort from massaging it?
I can always touch my face. In fact, I often find ice packs along my jaw a comfort during a flare.
Along the same lines, though, brushing my teeth on the ATN side can be a challenge as is chewing during a flare, in fact, I tend to chew on the other side out of habit. It seems my touch trigger is inside my mouth rather than on my face.
Just curious, do you get random shocks or stabs with your ATN along with the aches?
I never seem to get shocks for no reason, during a flare if I touch a “bad” spot I’ll get a jolt. For example, brushing my teeth, or eating or drinking something too cold or too hot will spark a shock.
My flares are typically deep buring aches. But then again I have gone days in a row when it feels like a hot tack is lodge in the upper corner of my eye or on the edge of my chin. But again, it’s not shocks or stabs, it’s more constant in nature. Hence the ATN diagnois.
Interesting. I have been diagnosed with both typical and atypical which I often wonder about because I read how ATN patients also gets stabs and shocks so I wonder how they are sure I have both.
Right now I’m having a flare and I’m getting deep stabbing, pull your teeth out with out pliers feeling lasting for two-three minutes about 10-15 times an hour which is a lot more than my usual “TN1 pain.” Normally it’s more like 20-70 times in a full day. All located in my upper right jaw, rarely in my lower right.
And my “TN2 Pain” is a constant burning aching feeling also in the same location.
But recently I started trying medical marijuana and was very apprehensive. I have gone very slowly with it and have found that it is the only thing that has given me relief for my “TN2 pain.”
I’m going to stop putting them in quotes. I was just doing it because as I said I still don’t know how they’ve made the distinction and quite honestly if it is correct. But my TN1 pain responded wonderfully to carbamazepine and if I could be at a higher dose I might not be in such agony right now. I rarely get side effects but I got hyponeutremia from the carbamazepine, low sodium and had to be hospitalized twice for 10 total. I had to beg them to keep me on the dosage I’m on now and I can only drink 43 ounces of water a day and have to take 6 huge sodium chloride (salt) tablets to make sure it stays ok.
So I guess what I’m saying asking is how did they determine your jolts weren’t TN1? And just part of TN2?
I can’t touch my face or my hair without setting off a shock. To make it really strange, my face has been permanently numb since 1991 with surgery and then gamma knife in 2014. The fact that my nerve is so damaged that it can feel a trigger when I am supposed to have no feeling is baffling. It’s called anesthesia dolorosa and I pray you never experience it. I have both types of TN so my face also constantly burns and it shocks with or without touch. Take care!
Mine was determined because of percentage, the vast majority my pain is burning aching with shocks within the ache. I never get just shocks. And, once I was on daily meds that controlled it overall my flare up pain responds to lidocaine and narcotics, which is rare for TN but seen with ATN.
I’m so sorry you experienced AD. One of the reasons I’m treading lightly about MVD and the fact that it doesn’t work as well on MS patients or ATN.
Well if it was based on percentages then mine would be atypical as well because my burning, aching is constant. But I thought that was pretty “typical” for ATN. On the other hand, they tried dilaudid and fentanyl when I was being diagnosed and it didn’t do anything, nor did the Vicodin So many opiates don’t work on me either. But, methadone and Nucynta are opiates and work well on neuropathic pain and I’m currently switching from methadone to Nucynta. It worked to an extent anyway.
Keep in mind that everyone responds differently to meds, a narcotic that works wonders for me and my AT N may do nothing for you. It’s all trial and error. And frustrating!
Is there a clear compression of the nerve? If not I would never even entertain MVD. The stats on that procedure are hideous. While 90 some percent are immediately pain free 50 some percent have pain within a year and 90 some within five years. And as Skippy mentioned there can be brutal problems as well. Do your research carefully!
I’ve had TWO mvd procedures … I had severe compression of the Vagus nerve and nervus intermedius as well as all along the Glossopharyngeal nerve (resulting in debilitating constant deep earache, jawache, eye socket ache and all manner of burning searing pain in between, although my face was not touch sensitive, the pain is all inside my head/brain)
After the first MVD in October 2014, I was relatively pain free for nearly eight months, then the pain returned with a vengeance (probably because the first surgery was only to insert Teflon fledget between artery and GPnerve) and I had the second MVD in March 2017 … the pain returned by November 2017 and has got steadily worse … I rarely have any hours let alone days that are completely zero pain, it’s always hovering between 3 and 6 out of 10 and spikes up to full blown (take my head off NOW) severely debilitating cannot think straight P-A-I-N … three to four times in a 24 hour cycle.
This really does deserve it’s nickname “suicide disease” and I’m pretty sure that even the doctors and pain specialists who treat us have no cooking clue about what it remotely feels like to be invaded by TN, be it ATN or GPN … they’re all hectic and make us feel soooooo bad … you guys all have my sincere empathy as a fellow sufferer … I started with occasional earache in 2005 and it gradually took up more and more space in my consciousness, now I am often enslaved to the point of wanting to be a victim of the Queen of Hearts “off with her head!” … haha … seriously though, it’s hectic and I’m determined that I will NOT succumb … so opiates are my friends on the bad days.
I don’t get electric shocks but the deep boring pain that feels like someone is driving a hot metal spike into the right side of my face. I often cover the whole side with my hand. I feel like I have to provide support or everything will shatter inside. I often massage my face as well, really digging in because it begins to feel like my muscles and joints are seizing up. Thankfully I don’t often get episodes like these.
Karen have you tried a head/neck/shoulder massage? I scuffed at it for years but when I finally did give it a try it was amazing how much it helped, even when not in an active flare.
I cannot massage my face but I discovered a couple of days ago that when it triggers, placing my hand on that cheek seems to lessen the pain and allow it to release. Usually I cannot talk when I have an episode. This one has been going on for 3 weeks I was getting pretty depressed. Yesterday I stopped by a friend’ house just to say hi. Well, the coffee went on and one thing led to another. I found that the more I talked, the better it became. By the time I left, I was doing pretty good. I say to the radio on the way home and even stopped to by something to eat other than yogurt or pudding! Today I am walking around the house singing to keep things from tensing up again. Everyone is different, I just find this exciting that it seems to help me.
Yes, I can touch my face. In fact, I discovered form trial and error that one of the ways, at least in theory, to stop an electric shock is to press the reacting area with my fingertips so hard it hurts, and hold it there till the ‘throb’ dies away. It seems to avert electric shocks if I get in fast enough. I assume it’s somehow fooling the nerve.
That said, when my TN was very bad the slightest breeze blowing on my skin, and sometimes the shower, would trigger pain. Also putting a splint over my teeth at night was monstrous, although it was the barest touch. In fact, I think that was why it was a problem. So, in short, for me, rough handling can stop a trigger hurting, while light touch will bring it on.
Woman, that’s very interesting. It’s rather along the same lines as people who chew gum every waking minute to force the nerve to constantly fire which stops the shocks.
I can’t speak to it myself as I found chewing gum to be a nightmare with my ATN and have given it up complete but I have heard it gum chewing thing enough that I thought I’d pass it along as something to try.
That’s funny you should say that River59 about it being better when you kept talking because at times, when eating brings on an attack, the more I chew the quicker it goes away! My pain is on the right side of my face so when I start to feel the pain I will learn my head to the left and it helps the pain to subside. I must say though that I’m on three different medications for TN this time around which aren’t working all the time. They have finally found the blood vessel that is on the nerve and if these meds start to not work I will be looking at MVD as my next step. I have had this since 2007 and when it first started touching my face was impossible, but this time around it’s talking and chewing. It seem to always come back different.
I have same thing. Chewing is excruciating. Brushing teeth can be excruciating (though on some days, it’s fine). Sometimes under my lip or above my ear hurt to touch even super lightly, but I find ice can be helpful. I do try to chew on the other side, but it is the movement of chewing at all that is painful. Speaking is very painful sometimes too (my tongue hurts). You’d think this would be a great weight loss skill, but I somehow manage to eat too much anyway. LOL.
I too have found chewing fast and hard is sometimes easier, though utterly counterintuitive. I am not sure why this works. Maybe cause there really is nothing wrong and the nerve is misfiring, so when you force it hard, it eases up a bit. I am glad to find someone else in that odd situation. Thought I was nuts when I would chew faster and harder to make it hurt less! As I posted elsewhere, I just scheduled MVD for July… Scared to death, but going to do it.