Hi everyone!!! Im Delia 61 years old…had my MVD 18 months ago…and now after all this time pain free I been feeling little strange things on the other side of my face like tingles…(is not like the electrical shocks or burning) on my forehead and tooth aches…Im very scare and sadto think that this awfull sickness will come back…I’ve crying all day…I know the stress is bad but I can help it… has anyone that had a MVD have feel something odd or strange on the other side …PLEASE HELP Im soooo scare, sad and mad…
I am in my fifth year after my mvd, which was only partially successful. I was able to do alright with meds afterwards, but now, yes, I get those scary feelings like you describe on the other side of my face, but not all the time. I too wonder what is ahead, but - there are so many new discoveries on how to help TN patients with the pain, that I no longer worry about it very much. Worry is, after all stress, and stress is very connected to our TN pain. The more you think about your pain, well, what can I say? Example: try not to think of a tomatoe? See? You can’t get it out of your mind. Now shift to blue sky and clouds. Bye-bye tomatoe. It works the same way with nagging pain. Higher levels of pain need different visualization, or forms of diversion. If mine is really bad, but not excruciating, my best way to combat it is to divert my attention to television. If it’s really bad, I go see my doc. Amazingly, when you have something positive to look forward to, this helps with the pain. I have joined a writer’s group. Wow, whatever floats your boat. Just find what diverts your attention and swim towards it. My best to you Delia. -Laurel
((( Delia ))),
The fear of TN pain never quite leaves us, and although the possibility of TN re-emerging is possible, even on the opposite side, it could very well be something else.
Maybe a visit to your dentist to check your teeth, an X-ray perhaps and then go from there…
Although its hard not to stress, I know, you really must try…it will aggravate all that your currently feeling.
Sending you positive vibes,
(( hugs )) Mimi xx
So sorry Delia, I know what you mean, I get the strange feelings, sometimes on both sides, so I'm very familiar with the terrible fear that you feel. (I had two MVDs, pain free at the moment). I think stress of any kind can make it worse, and I have discovered that when you have those tingling feelings it helps to take some headache medication while consciously relaxing the jaws, (and if possible have a little lie down), as sometimes stress makes us clench our jaws without even realising it, and this stress/tension in the jaws can trigger the strange sensations, which sometimes feels like a bit of a warning of TN pain. Relief of stress is in the mind as well, so make a conscious decision to let go of anything that's worrying you and just try to enjoy each day, one day at a time. Most of the time we find we worry and stress over things we can't change anyway, so it makes no sense at all to waste our health on worrying. All the best.
Good advice by all!
My TN became bilateral when they jerked me on and off 5 different AEDs and 1 antidepressant with in a two month period. Its like the pain jumped over. In about 6 months the tingles did change to once a week short TN attacks. After the MVD they remained the same. So I new I had to get the bad side under control before the other side got as bad.
It really emotionally hit me hard. Grief started all over plus the race to save my face. I count on a couple of spots on my head to lay down. So if both are at it plus my ON (back of my head) O what a pickle.
Stressing makes it all worse. But even thinking about how the heck not to be stress is a challenge.
So I began to look at as a second chance to do this thing different this time. Since I waited 15 years for the one side to get so bad because I had no clue, I figure I have great knowledge now, so how can I make the best of it.
I am so sorry that your are experiencing this new sensation. But maybe it will be classic tn and go into remission for a long time. Maybe the researchers will find a pain cure in our life time. Hope for the future.
It helps sometimes to go revisit "Striking Back" or http://pain-topics.org/pdf/IntractablePainSurvival.pdf
Hang in there, Tree
Thanks everyone…I dont have anyone to talk to about my TN problem only my husband (and u guys ) who is a great help he’s been through so much with me that I dont want to worry him with this I have been very strssed lately we’re taking care of our 3 year old grandson who’s a handfull my son and daughter in law r having a second bb on monday… we’ve taken care of him before but not for days ufff !!!..I will make an appoinment with neuro to talk about it…thanks again for ur words I’ll try to relax… :-). <3.
Before my MVD, I had the pain on my right side, but then my left would twinge once in a while and I would get a lighter form of a lightning shock. My neurosurgeon said that sometimes the other side "mimicks" the other side and we would have to wait and see what happened after surgery, he said there was a compression, but he didnt see it causing anything major on the left side. I had the MVD, right side pain 90% gone, the left side stopped with the strikes, but I still get a little twinge like a pinch once in a while, but so far it hasnt progressed.
I do understand being afraid that its going to get worse, every one of us that has this most likely freaks out every time we have and ache or pain in our face and its completely understandable. It may be that you will have little twinges, but nothing more, I wouldnt worry unless they start getting worse
Wendy
I talked to my neuro today and told me that he does not think there is a problem …he says that is stress I get stressed very easily after the TN before it I was a rock but now I’m a bunddle of nerves, also suffer with my sinnus so that is provably the problem…hope to God everythings gets better…THANS guys for ur comments u r a great help, its nice to hear from people that understand our pain…I’m also here for u…<3. xoxo…
Glad you had a positive report from your Dr…
(((( hugs )))), glad you got to speak to your neuro!
Mimi xx