This is my first post in the livingwithTN forums, so please excuse me and correct me if I’ve done something wrong. I’ve searched for something about this and didn’t find anything recent, so I’m going to ask if anyone else has done this/is it normal.
I’ve dealt with TN for about a year and 7 months, I’m only 15 years old (yes, I do know this is uncommon). However, I’ve developed a habit of rubbing my cheek when I have an attack (which occcurs about every 3 minutes during my flare ups). This helps me through my attack with less pain, alongside some awkward massage with my tongue on the inside of my cheek. Sometimes, the rubbing will end the attack, only for another to happen a few minutes later, and sometimes this causes an extremely intense pain where I then rub my face again until it goes away. Honestly, this is my only method of relief currently, but I’m starting to feel like this makes my flare-ups last a lot longer than they should, though I’m not 100% on that. However, this does cause a massive break out of pimples on the right side of my face where I rub, and makes it extremely sensitive skin. My doctors find this abnormal, as other patients haven’t done this I’m assuming. Does anyone else have this habit? Is this normal? Is this bad? Could this make a flare up last longer? Any input would be greatly appreciated. If you have any questions, feel free to ask.
Also, please do not try this. It has made doing any task very inconsistent and time consuming, I would NOT recommend it.
Sorry to hear about the pain, especially at such a young age! I hope you are seeing a doctor, they can work with you to prescribe medicine to help reduce/remove the pain. This is really the first step in feeling better :D
Have you tried putting heat on your face? One of the TN members, Chris K, suggested it and it really helped me during flare ups.
My boyfriend bought me a heating pack called 'Bed Buddy (there are many brands, that's just what he got). They're just long cloth tubes filled with rice/flax, etc. that you put in the microwave for less than 2 minutes and then it stays warm for quite a while.
If you have to touch your face, can you wash it afterwards? Just use warm tap water and hand soap (or whatever you use to wash your face). That will help with the acne. Also, if your skin is sensitive maybe lotion would help.
Thanks for replying Jessica. Yes, I am seeing a neurologist and a pain management doctor. I have taken a few medicines and am currently on Lyrica, just off Neurontin. None of the medications have provided relief so far.
I have tried heat through a heating pad, it doesn’t really do much for me. However, I am glad this provided relief for you. I can’t really wash my face after rubbing it, these attacks happen every 3 minutes or so. I’m just trying to discipline myself to stop rubbing.
You're not the only one. I have my hand to my face off and on all day and night. I started to break out so now I rub my face with the knuckles of my fingers. My jaw was swollen from pain today and every failed (meds). All I could do was rub my face. I know some people can't even have their face touched, and wind and cold air cause me a lot of pain, but for some reason I don't experience an increase in pain when I press on the places that hurt. I've learned that TN is different for everyone, whatever works for us individually is what we need to do. I'm pretty sure I also clench my jaw during sleep and also when I have a lot of stress or pain, which is probably why rubbing my jaw and teeth area makes it feel better.
Jessica's advice is great - try using a heated wet cloth or a microwaveable heat up thing. It works really well for me, but since it's been in the 100's and 90's here lately, I can't do that...too hot.
Hi Thomas, I am so sorry that you have to go through this. It is especially awful that the attacks are occurring so frequently. I find myself rubbing my face sometimes when I get a sensation like a spider crawling across my face or a nerve that seems to be tingling and it does seem to help somewhat, so it makes sense to me that you have made a habit of this. I don’t think that you are abnormal at all; you are simply doing what you can to keep the pain at bay so that you can live your life. That said, it sounds as though you are concerned that it may be causing your flare ups to last longer and that it is interfering with your activities. If you don’t rub your face, does the attack continue until you do?
As Jessica mentioned above, applying heat has been very helpful to me (I first earned about doing that myself here on this site). When I first tried it, it didn’t make any difference whatsoever, but over time, it started to lessen my pain. So, it might be worth a trying again, if you are up for it. There is also wonderful thread on here where many people offered their tips on the little things they do to help get their pain under control. Perhaps there may be some ideas there that might work for you:
You seem like a very brave person to have been through so much already. I am impressed with the effort that you are making to look after yourself and to find answers. I know that your resilience and determination will serve you well as you continue to do whatever you can to feel better. We are all on your side.
Thanks to you all for your replies, empathy, and support.
I’ve been trying a heating pad for a day or two when I get desperate for some relief. Seems as if just the heating pad’s contact to my face is too irritating to even provide relief. It seems to help if I apply it to the back of my head and lower neck, but I’ve only tried it a few times. I’ve been trying not to rub my face, usually just stuffing my face in a pillow until it’s over. For your question, Chris, if I don’t rub my face I’m pretty much cringed and paralyzed in the pain until it’s over, which takes a lot longer to subside, but I’m not sure how long or what happens if I don’t touch my face period, I haven’t been able to make it through an attack without holding my face or rubbing it or something. I’ll read that link and see if anything there can help at all. Thanks again everyone for your input.
I read the book Striking Back is what you might be doing is making all the nerves fire until they tire out and can't trigger for awhile, giving you some relief. If you have insurance I would get any tests done, mri etc before you can no longer use it at a certain age. If it's from a head injury or tumor get it dealt with. I really hopes it goes into remission for you for a long time. I don't think it's bad if it's giving you relief. It's uncommon but it works for some people. Also keep really good care of your teeth so you don't have to deal with so much dental work.
I do have insurance, I’ve had one MRI done which my neurologist had said he was really looking for tumors, (there are none, thank goodness). I’ve just had a second MRI done for my pain management doctor who wanted a specific type for trigeminal neuralgia in a higher resolution. Both MRIs were absolutely hellacious, both done during flare ups, it was some of the worst experiences I’ve had. I was given valium the second time, which had absolutely no effect except on me except being a little bit tired. It’s also not due to head injury, currently we have no idea what this was caused by. My remissions last about as long as the flare ups, however this flare up has been very long and still hasn’t gone into remission. My teeth, I have no idea, I can’t put myself through a dental visit. Can’t.
Hi dear, im sorry to hear about your pain, i deal with this for more than a year as well, first was in kind of control but than was increasing until nothing can stop it, but when the medicine was not enough anymore and the pain comes back soonest than i expect i even feel something strange seconds before, so i know it the pain was coming, for some reason the doctor explain later, if i inclined the head the pain comes faster but if i look up laid down on bed with the part of your cheek on your pillow, and try to relax... the pain don't come anymore or goes faster, i live in China and they always teach you how to deal with the pain with the less medicine possible dont forget is all about nerves so even if you are afraid as i was when the pain comes ..try to think on something different, don't move because that can provokes stronger electrical shocks,
In other hand if you are dealing with pain that means the medicine is not enough ..some of us we take bigger dosage than others.
In my case i was under a big dose of carbamazepine and i take the surgery because the dosage was affecting my organism to much but and i was loosing coordination, suffering of dizziness and keep me at bed most of the time ..was no pain but no life anymore as well :(
Thomas, I was afraid that you would say that. :( I am sorry, too, that applying heat to your face is just irritating your skin even more. You don't need that! I wonder if some kind of healing salve might help your skin? When I massage my face to "confuse" the nerve when I am having an especially terrible episode, I find that I apply direct, deliberate pressure to the area, so I don't have to massage as much. You might want to try that, if you haven't already.
In your profile, you say that you have tried a few medications without any success. Sometimes, it can take a while to find a medication that is a good fit or a combination of a few meds that work well together. Are there plans to switch to a new med or to add one to your regimen? I really hope your doctors can find a way to get your pain under control as soon as possible.
I will keep wracking my brain for ideas of what might help you to deal with this. I feel like there is a solution, but you just haven't found it yet. You just have to hang in there until you figure it out. Easier said than done, I know.
Take care,
Chris
Thomas Ogden said:
For your question, Chris, if I don't rub my face I'm pretty much cringed and paralyzed in the pain until it's over, which takes a lot longer to subside, but I'm not sure how long or what happens if I don't touch my face period, I haven't been able to make it through an attack without holding my face or rubbing it or something.