I appreciate everyone who responds back to me when I have a new question or comment. You guys are lifesavers as no one can possibly understand this distress unless they also experience it.
Along with the sudden and extremely intense electrical jolts on the right side of my face, thanking God that they have been infrequent this week, there are the times that it feels like I have a mouth full of hornets stinging me in the mouth and that can last for hours at a time......sorry I digressed....
today, while I was taking my break, and I kid you not, I noticed a little 'buzz' on the LEFT side of my face, almost mirror image of where the jolt ends on the right side. This was not at all painful and each 'pulse' lasted for just a second, but now I'm wondering if anyone else has experienced this same thing??
Is it possible that TN can be felt on both sides of the face;
does it change sides and
does anyone else experience night time pain starting at or near the same time each night?
I sometimes get mirror pain on the other side, I know it is highly unlikely to get tn on both sides, after a few minutes it usually stops.In the evening I put on a Lidocaine patch which helps with breakthrough pain. Everyone is different, take care.
I have TN on both sides, and have the mri that shows my right side is worse, which is where the most pain is, the left side is more of an annoyance, there are more people with bilateral than originally thought and my neurosurgeon stated the same. I get a weird quivering in both my checks and inside of my mouth and if I run my finger down my face I can actually make the quivering move along with my finger, its weird, so I dont discount that you are having a similar reaction.
The buzz is the word I was looking for to describe some of the things I feel as well.
I was driving down the street other day when I realized my face was really hurting and it was getting strong enough to notice. Then I realized that it is my left side. My TN is on my right side. I know that it is not common to have TN on both sides so I have decided to ignore it until it becomes a regular occurence.
I think 1 in 5 have both sides. You can get an Rx of Lidocaine mouthwash too! Almost any weird senations of the face/mouth/ear/eye/head/cheek/teeth/jaw can be part of TN. I hope you have a good doctor who will listen.
My pain does get worse at about the same time each night, 5pm. I figure I need to switch up my meds time. I also have stinging in the roof of my mouth tonight.
Only one of my doctors has even reluctantly conceded that bi-lateral TN is real. I don't focus on it because it seems to upset them; it goes against what they've been trained to believe. It doesn't matter too much to me whether they think they're treating one or both sides of my face. They'll catch up with the patients one day.
Most of my TN is set off from activity, so by the end of the day it's almost always worse than when I wake up. After a day of talking, chewing, clenching, wind, A/C, etc I can feel it progressing by afternoon and by night it's very painful. When I'm in a flare up though, it hurts all day and all night and nothing makes it better. I can always seem to make it worse though, so I isolate myself and put something over my face and minimize all sensory intake. I get the pulsing sensation you described, but usually on my official TN side. The other side will experience the shock jolt now and then, and tooth pain/pressure. This could be cause by my sinuses though, I'm not exactly sure.
You are all so wonderful in your responses and I thank you for your imput and your kind thoughts. I've been 'jolt free' for 4 days and am holding my breath for a few more good days. The 'hornet nest stings' have also been mild and I understand that there are days, weeks, months or reprieve from the jolts. I'll take any amount of time I can get and say a big thank you to God for His help in dealing with this. I pray for you and your journey. You all inspire me to keep hoping.
Taking certain meds at the right time of the day helps, especially those meds that are supposed to be taken two or three times per day. Make sure they are taken at even intevals.
Jess said
My pain does get worse at about the same time each night, 5pm. I figure I need to switch up my meds time. I also have stinging in the roof of my mouth tonight.
Colleen, I got a chuckle out of when you said they'll catch up one day... HAHA. You're right it really doesn't matter as long as they treat the pain. @ Nannie ~ I do get that buzz on my upper lip every morning, it's a craZy feeling and if you were to tell anyone else other than us.. they would look at you and go HUH??? And I am bilateral.
No, you aren't. But I am sure you thought you were...as did I. LOL. The first time it happened I thought I was losing it. Now it is just a mild buzz every morning. But it's there.......unfortunately. (btw I am still not sure if I didn't lose it back then and am trying to find my way back??) It felt like a light show was going off in my upper lip area. This happened as a result of treatment with Effexor and it only happened the first day I took the 37.5 dose and then again at the 50 dose and then again at the 75 dose. Which is where I am at now. It is wild, I tell you. But after the light show, then it settled to the Buzz and then calmed down. Now I just get it in the morning. But the effexor cured the intense burning pain on my eye tooth area which is wonderful, so I'll take it.
Effexor is so far the best med I've found. Tegretol was amazing but I was allergic and had to stop. I'm taking 225mg of Effexor for about a month now and most of the annoying minor symptoms like numbness, zinging, buzzing and burning have mostly disappeared. It has gotten rid of a big chunk of the pain too. I still have to supplement with oxycodone or clonazepam at night, and I'm very sleepy during the day, but it's worth it. I get this weird thing when I yawn, my jaw kind of locks up and shakes when I try to close my mouth after yawning. But overall, effexor has given me less side effects than anything else I've tried. I'm crossing my fingers that it keeps working this well. I started out at 37.5 and slowly worked up to 225.
If you ever have to come off Effexor, DO IT SLOWLY! I went off of it too fast and had a migraine that lasted a week and didn't stop until I started back on it then tapered off of it very slowly. It's a nasty drug to come off of. Other wise I never had any side effects.
Mine has been both sides! My first MVD surgery was 2008 on right very successful! Pain started next year in left side. They tried meds until I said I am ready for surgery. So MVD surgery on left side May 2012 was doing great weaned off all meds and now pain came back with a vengeance and what was more ironic was the right side pain came back after all these years last week! I have no idea what is going on with me and all that suffer from TN??? Lisa
I had TN on my right side for several years and had discussed surgery. I kept putting it off because I was scared to go through with it. Then all of a sudden my pain moved to the left side. When I went back to see my neurologist, he said it's a good think you didn't have the surgery. It has stayed on the left side for about 5 years. It has never been on both sides at the same time.
I can usually tell when my pain is going to come back. I will start having a feeling on my face that feels like when you walk into a spider web. I will rub my face trying to get it off and when there is nothing there, I realize the pain is going to follow in a day or two.