I went back to the begininning of these discussions and I didn't see anything about pain with singing, talking, yelling, etc. Stef mentioned a lot of pain associated with eating mac n cheese. (was that from chewing?)
All my pains escalate when I speak. Is there anyone else in the group like me? When I hear someone yell I cringe just imagining what that would do to me if I tried it. This has, of course, led to much social isolation. If my friends can't text/e-mail or won't take the time to do so, I am lost to them. One neurologist explained that the inflamation in my 5th cranial nerve also affected the nerve to the vocal chords. For several months I had pain in my throat near the vocal chord, felt like a badly swollen gland. Not so much now. Social situations are tough, I usually can't stop myself from talking a bit, then I really pay for it an hour later.
Can anyone else relate to this? Or found a way to solve it besides going mute??
yes, mine started with a sore throat and I kept going to the dr, thinking I had an infection but both times I never did and then I went back saying ..look in my ear as the pain felt like an ear infection but no infection, I thought by then he must be thinking I am making all this up as I had real pain. Then I felt like I had a lump in my throat so they sent me twice for x rays of my glands etc...nothing. Since then I have been passed around to the dentist who sent me to the oral specialist but I went back to my neurologist that was treating me for migraines for years. He knew straight away what was going on and put me on Tegretol which I have just started this week.
I don't talk much anyway being on the ASD line and only communicate by computer as I cannot use my mobile phone cause it is too hard with my eyesight. I have bright letter stickers on my keyboard so I can see.
I don't notice it in my vocal chords so much, but I am like you in that I can't do a lot of socializing. My jaw gets tight and hurts into my ear when I laugh and talk too much. It's a bummer:(
Hi Christina -- I do a lot of public speaking, and have noticed that my jaw gets tight when I'm speaking. I certainly hope that it doesn't get worse since this is component of my professional position. Interestingly, I've noticed increased TN activity on Sunday's after church. The only thing I can put my finger on is the fact that we sing alot in our services. I'm hoping it's not God's way of muting me because of my inability to carry a tune.......
I can certainly relate to this. If I instigate a conversation, I'm generally OK (I must subconsciously choose to speak when the pain isn't as bad) but if I need to answer questions, it can really aggravate things. If I raise my voice, in particular, a good day can turn into a terrible one pretty quickly. I learned the hard way that if someone shouts a question to me from another room, that I need to go to where they are to answer.
I haven't found a way to resolve this entirely, I'm afraid. At home, if the pain is bad, I just do a lot of nodding or shaking my head or pointing at things, which generally gets the point across. At work, I keep my fingers crossed that my phone doesn't ring (the phone is the worst for me) and try to answer questions as succinctly as possible. It can be maddening, especially when you're basically fine one day but then can barely speak a word the next.
I'm sorry that you are going through this. It sounds really miserable. Could you make plans to meet friends for a movie or something fun like that that doesn't require a lot of talking? That might take some of the pressure off.
Brian, you must have posted your reply while I was writing mine, because I just saw it. Since you mentioned singing, there's something more I can add. When I was at the endodontist ruling out dental issues as a cause of my pain, I asked him if he had ever come across someone with my exact symptoms. He said they usually have a few patients with suspected classic TN each year, but no one else with a situation like mine (migrating bilateral burning pain). He said the closest was one other person with atypical TN. She was a singer and when she would sing, the pain would hit. How cruel! I asked if she was OK now and he said yes, but that's all I know.
One other thing I just thought of: drinking warm herbal teas usually helps me with jaw tightness, perhaps because the heat helps to loosen up the muscles. A heat pack sometimes helps as well.
I think that Steph has a point about Mac-n-Cheese. By cruising my profile you should see that I’m a strong advocate of watching one’s diet. Scrutinizing processed food is one of the the first things I recommend, then I’d consider other things like dairy, chocolate, beer, meats (i.e. fish/poultry vs red meat), veggys (organic) etc.
My TN is complicated by MS and chronic respiratory problems. However I’m sure enough about diet affecting my TN pain level and overall well-being, that next to exercise I consider it central to my therapy.
I too, have pain when I talk. However, most of that pain is confined to when I talk on the phone. In most cases, if I am already in pain talking in general is not an option. I experience a lot of pain in the 2 upper branches of my TN nerve. I also clench my job quite a bit without even knowing it and that seems to really aggravate my pain too. I haven't found anything that really helps with this, except for trying to relax my jaw and face as much as possible and to take a break from talking.
I don't experience all of what you are writing about. Perhaps, what I have written won't be too comforting to you as I don't experience pain in my vocal chords. I limited my talking on the phone to short periods of time and simply have to not talk, like you, when I am in a lot of pain.
I cannot remember when I mentioned the Mac-N-Cheese, but if I eat enough of almost anything, pain is sure to follow.
However, whenever I am in the midst of a flair-up, it hurts to talk, and I avoid doing so. A lot of talking, when unmedicated, or between medications can definitely bring on a flair-up, but it has not of yet affected my actual vocal chords, I don't think. Before medications, I would just point to my face with my hands, sometimes, and my daughter would explain "her face hurts", or if I really knew the person well, they would say, "oh, your face hurts", and I would nod. I mostly kept to myself and people who knew me well for awhile.
However, for me, it did not originate from the vocal chords, but rather from seemingly the sides of my face, surrounding muscles and soft tissues. It is like the sides of my face are being crushed. My teeth will start to throb. My inner cheeks and back of tongue will burn. It is like a cluster of pain in my V2 and V3 branches.
Eating ANYTHING is my biggest trigger. Talking is probably 2nd, followed by smiling. However, sometimes, it can come on without any trigger.
I wonder if your doctor has considered "glossopharyngeal neuralgia".
Best wishes to you. I hope you find better relief soon.
Hi Christina, still poking around the website and i can't find your recent request on the ATN storm..I don't know what causes The Storm. Most of the time there is some discomfort in talking,walking,running for the bus. Gabapentin and Lamectil manage the pain most of the time. Sometimes the quick turn of the head to speak to someone beside me plucks the nerve like a violin string but I move around my face and jaw until it goes away. But every few months, The Storm rolls in and all the symptoms light up like a pinball machine. That's when the oxycodone helps. Usually, it lasts a few days but last week it was longer. I know you sent me a comment but I can't find it. Just as I was rereading this reply I moved my head up quickly and a mild zap is running along the nerve. Fun eh? I've been telling friends that I've found this support group and they're all very happy for me. Please get back to me if I haven't answered all your questions. SF Bill Creighton
Before I started the gabapentin/lamectil treatment I shared just about all of your problems mentioned above except for the vocal chord pain.
I still have bouts with all those problems but they are usually less severe but not always. I can't figure out a pattern for all this. The uncertainties of this disorder or nerve-racking (bad pun?).
Check the resourc section of our site. Look under Facial Pain Society. There will be a TN conference,in Irvine Ca in September. I'm thinking about attending. More ideas on this later.