Thank you, all. Today I bought my mom a journal, so she can keep track of all her meds, and how they affect her, and just keep track of everything, eating, certain movements (chewing bothers her). She's up there in age, so she forgets details, plus her meds aide in that too. As we learn, we'll share with you all - but I'm sure we won't discover anything you guys don't already know and haven't shared in group. I've learned a lot coming here and understand it's because of your shared experiences and stories. Strangely, the doctors don't really share much (at least hers aren't)-which is why I'm grateful for all of your candor. Today, she woke up with pain, but manageable. She said it's not as intense, and we attribute that to the meds. She sounded good, so I believe her morning drugs still needed to kick in somewhat. She's been home for two months, and it's so unlike her to be on 'lock down'. She's extremely active, but this TN forced her to chill out. It's so strange to see her like that. I suggested I take her out of the house this weekend, she wants to so badly, as she's going a little stir crazy, but she sounded a little apprehensive. I told her, it's okay mom, we can live day by day, we don't have to plan anything. Thank you for your thoughts and strength. You are such a nice group of people. I hate that you guys have this. Stay strong.
It's in her left lower jaw (mandible part of the nerve). It's more of a shocking feeling, like electrocution. She sometimes describes it as little sharp needles piercing like the roots in her teeth. She's used the word "tingling". She says she feels this type of thing before things get really bad.
Oh Keepin...your poor mom! i can relate exceptionally well! My pain is in my lower right jaw area and most of my trigger points are inside my mouth. Tell your mom i know exactly how that tingling/electrocution feels..and how it is sometimes a precursor to worse.
If her trigger areas are inside her mouth...be sure to ask (demand if you have to) for some "magic mouthwash"..it includes viscous lidocaine and it numbs pretty good for a little while. I actually got my doc to just give me a prescription for the lidocaine itself so that i could make my own mouthwash stuff at home.
If you are interested or need it...here is a at home batch you can make until you can get the lidocaine.
it's just childrens liquid benedryl, some maalox, and liquid benzocaine (the stuff for toothaches). It can be handy in a pinch when you need to take meds while in pain. or just for a few moments of relief.
I was thinking of your mom today...hope she gets to go on that outing. It sucks to be imprisoned because of pain, or the fear of it.
Wishing you peace,
~Mistee
1. How long have you been living with TN?
I have had it for four months.
2. Have the meds helped the pain go away?
I had a bad reaction to the meds but in the beginning, tegretol was a miracle!
3. If the meds do help, how long does the pain go away for?
Different for every person, i am off meds so my pain isn't away at the moment.
4. How often do your spiky waves come?
Mine come too many times to count in one day.
5. When your spiky waves come, how long do they last?
I never know. Its always different, but avoiding triggers has helped!
6. Do you ever get long breaks from your spikes(weeks, months, days without)?
Not since dropping meds . . .
7. Do you honestly believe meds will make this go away?
Yes! They probably wont keep it away for good but tegretol helped me tremendously until I had a bad reaction!
Every case is different, there is no cookie cutter version of TN. The best advice I can give is to figure out the triggers and avoid them if possible. Also, try heat or ice packs. For some people, that is a help. Stay Strong :D
I was first diagnosed with TN in 1994 and finally had an MVD in 1998. I was pain free for almost 9 years and then it came back. I had another MVD but ony got pain relief for about 9 month. After that I had stereotactic radiosurgery but with no relief. for the last 6 years I have tried various medications to get control of the pain, but the side effects have been intolerabe for me and they never helped the pain. Right now i am on chronic pain management with opioids. The pain never goes away for me. I am always at a level 2-3 and have frequent spikes throughout the day shooting to level 8-9. I take breakthrough meds if the bursts last too long. I have never had pain-free breaks. TN will never go away by itself. Medications can get the pain under control, but it seems each person is different as to what helps them. Tegretol (or it's newer version trileptal, I think it's called) are the usual first line meds and a positive response is usually definitive of a TN type-I diagnosis. It's a complicated disease and you should definitely see a neurologist who is well versed in taking care of the disease. I have found that many Dr.s are not that familiar with the disease. I strongly advise getting the book about TN from the facial pain association (formerly TN association). There is also a lot of good information on the OHSU facial pain page. There are helpful links on this site.. Best of luck to your Mom.
Hi,
I'm sitting here with my mom, and we went to lunch for the first time in over a month. She ate chicken pie, and she's doing very well. She read your comments and thanks you all. She's like wide eyed at the similarities of your stories and how it directly relates to her. She even bought a slice of lemon meringue pie, she's hoping it's not too sour which might hurt, lol, her words. Good night folks. Talk to ya later.