I've had TN for about 3-4 years now, but just found this community. I very recently relapsed after 11 months (!!) pain-free, following a radiofrequency rhizotomy. While my pre-rhizotomy pain was sharp, this new pain seems much closer to TN2--longer episodes, with a burning, lower grade and almost static-like pain.
My question is this: I had the TN1 pretty figured out (in terms of what worked for me), but I'm just getting to know TN2. It seems like a few things work for me, but it's so early on this might just be wishful thinking. I find that if I take a deep breath and hold it, I feel the pressure building against the TN pain (mainly in the roof of my mouth & sinuses). After about 5-10 seconds I release it, and the warmth of the exhalation immediately stops the pain. Additionally, if I ghost my fingers over where the pain is--not quite touching my skin--it seems to offer pain relief. I'm pretty sure the latter is purely psychological...but if it works, it works. Any other tricks like this that people have?
*I should add that when I'm releasing my breath, it's being breathed out through my nose. I feel like unexpected sensations decrease my pain. The warmth of the exhalation stops my TN episode. The fizziness of seltzer water decreases sensitivity in the roof of my mouth, etc.
Welcome Alm528, sorry to hear about your relapse.
Here are some things that work for me.
TN2;
Heat
the Magic Bag ( microwaveable) heated bag.
hot pockets ( for when no microwave is handy)
Emla Cream
(Lidocaine mixed cream applied to my face)
Orajel ( for lower teeth)
TN1
-avoiding cold
-avoiding wind or light breezes
-avoiding sugars
-minimizing excessive chewing ( sometimes no chewing)
-minimizing talking
For TN 1 & 2
Meditation and visualization
Reduced stress
Avoiding any & all cardio at this point ( only short, small amounts)
In terms of visualization, I was given a specific visualization that has truly helped minimize the pain when it’s out of control…
You sit in a quiet place, close your eyes and visualize a lightening bolt (s) entering your trigeminal nerve and follow the light and electricity flow through all the branches several times, imagining it re-charging your nerve and it’s pathways.
Then you picture a continuous waterfall entering the trigeminal nerve in the same location as the lightening. Imagining it is “cleaning/washing” the nerve and it’s pathways.
For me, tn2, the best thing I can do is stay consistent on my medication. When I forget and am late a few hours I often will get some pain and pay for it for a day or two. I'm on Gabapentin and it works pretty well for me. I only take it 3x daily although I have read spreading it over 4x daily is ideal.
As Mimi said, keeping stress down helps as that seems to be a major trigger. Once my tn gets fired up, it takes days or weeks to get back under control.
A doctor once told me about a trick that I have found useful. He described to me that when bang your knee or something and you are in pain, our instinct is to rub the area of the pain and we often feel a reduction in pain. So he told me when my cheeks start aching to gently rub them like you are soothing the pain. It's probably more psychological than anything but it really helps me. Hot water bottles also help to sooth!
For the TN, I have to take meds, plus avoid sharp, loud noise; bright flashes of light, and air conditioning especially.
The ATN is worse, but the heated rice pads help me, as does sleep; yoga/guided meditation; keeping away from alcohol and computers as much as possible; not wearing glasses, plus doing my exercise and having an emergency stash of codeine. But I get flare ups that are totally unpredictable, so I don’t have it all under control.
Most of all, I find that distraction helps with the ATN. I love playing Nintendo and watching interesting documentaries when I cannot bear much company. And the really long tv-series are really good for something!
I have found massaging my painful face to be helpful. I can really dig in, especially in the jaw hinge (?) next to the cheekbone. Taking a muscle relaxant also helps me as the muscles in my face, back of my head, neck and shoulders get so tense and knotted.
I have found massaging my painful face to be helpful. I can really dig in, especially in the jaw hinge (?) next to the cheekbone. Taking a muscle relaxant also helps me as the muscles in my face, back of my head, neck and shoulders get so tense and knotted.
I have found massaging my painful face to be helpful. I can really dig in, especially in the jaw hinge (?) next to the cheekbone. Taking a muscle relaxant also helps me as the muscles in my face, back of my head, neck and shoulders get so tense and knotted.
I am considering changing from Neurontin to Lamictal as the Gabapentin is no longer effective. Is the Lamictal as effective as it was initially? Is this the only medication you take on a regular basis to control the TN?
Sugar, sugar, SUGAR! Avoid it like the plague. Especially anything liquid or with a high liquid content. If it flows into the danger zone, heaven help you. Ice cream is a no-no. Other than that, try and avoid cold winds, especially directly into your mouth or face. It's a good idea, if you can do it, to keep your face muffled up when you make the transition from indoors to out - it acts like a preventative and seems to fool the nerve.
Too funny. I am TN2 and sometimes just eating an ice cream bar will help take the edge off. I learned that one a few years ago. Usually a few bites is enough but I often don't stop there.
Woman with the electric teeth said:
Sugar, sugar, SUGAR! Avoid it like the plague. Especially anything liquid or with a high liquid content. If it flows into the danger zone, heaven help you. Ice cream is a no-no. Other than that, try and avoid cold winds, especially directly into your mouth or face. It's a good idea, if you can do it, to keep your face muffled up when you make the transition from indoors to out - it acts like a preventative and seems to fool the nerve.
Ha! Incredible. If I eat ice cream for more than a couple of days, and often not even that, my mouth will be hyper-sensitive for about two weeks or longer. Last time I had some I actually nearly managed to put myself back to electric shock level, and I haven't been in that horror zone since my TN started. Talk about horses for courses!
shadow2 said:
Too funny. I am TN2 and sometimes just eating an ice cream bar will help take the edge off. I learned that one a few years ago. Usually a few bites is enough but I often don’t stop there.
Woman with the electric teeth said:
Sugar, sugar, SUGAR! Avoid it like the plague. Especially anything liquid or with a high liquid content. If it flows into the danger zone, heaven help you. Ice cream is a no-no. Other than that, try and avoid cold winds, especially directly into your mouth or face. It’s a good idea, if you can do it, to keep your face muffled up when you make the transition from indoors to out - it acts like a preventative and seems to fool the nerve.
Absolutely. There's definitely a crossover, with meds and the like, but sometimes it's like it's two different conditions; they just happen to both be in the face!
shadow2 said:
That’s why I like to clarify that I am TN2, because I suspect that makes a difference.
Six years ago, I was on a vacation in Europe with my late husband. We ate in an Italian restaurant in Toscana. We’ve started my dinner with simple bread and butter. By my first bite, I felt a shocking pain through the right side of my teeth. We decided to cut our trip short and go back to Chicago in order to see my dentist. In my age, this sort of pain is not very rare. The dentist did not know what to do, he said that everything is in order. On the next day I went to see my physician and he told me that I’ve might be suffering from Trigeminal Neuralgia. After a few medical examinations and a visit to several neurologists, I discovered that the physician’s initial guess was correct. I did not know what to do, I’ve heard about this disease and “invisible pain” and it’s terrified me. 3 months after the diagnosis, my husband died from a heart attack, and then I was completely alone…My daughter lived in Germany at that time with her 3 kids, and after my husband’s funeral, she got back to Germany. After approximately year and a half, my condition started to deteriorate…I was unable to chew solid food, talk, laugh and barely move my face. My physician prescribed me an endless of drugs: carbamazepine, oxcarbazepine, topiramat, pregabalin, clonazepam and phenytoin, but nothing helped. I was so desperate. I couldn’t have even surgery because of my age. I’ve started to do a research and together with my neurologist, I found Pain Shield. I was very skeptical about the device, but I was so desperate so I tried it. After about 3 weeks I started to move my face, I could eat and even laugh. My neurologist was in a total shock. I’ve using it for about 3 years and it’s a life savior.
I have only ever had type 2, and in the 10 months I have found a few things that help some (beyond medications that require work with your doctor.)
-Rubbing the area that hurts, My hypothesis is that it sends other signals to the nerve and partially distracts it, I have to be careful though, I have bruised my face when it is really bad, by pressing too hard. I know most TN1 people NEVER want to touch their face, but from the start that has been a natural urge for me, and never made it worse.
-Ice packs, not on the area that hurts but behind my ear on the side that hurts, if nothing else it numbs the muscles that tense there and seems to lessen the pain in my face. Many other people recommend the use of heat the same way. That has made me worse, but it is worth a try.
-keep heat and cold out of my mouth and away from my face. This has been very difficult this summer where "room temperature" has become 95 degrees more days then not, but if I can keep the air and food around 60-80 degrees I feel less pain. (I really miss warm food and cold drinks.) Even though the pain never goes away, these things make it worse for me.
-doing things that feel good in another area, pulling a fluffy or silky blanket through my fingers, getting a foot, or shoulder rub, smelling a pleasant candle smell, relatively loud fun music. Anything to overload my senses and divert attention from my pain.