Sad and very afraid

Hi everybody !! Its been 20 months since my MVD and lately I’ve been feeling little shocks and pinches in my head ( that is where I had it before ) and a continuously tic in my left brow( this is new never felt it before) that is pretty annoying and it makes me very nervous… talked to my neuro and he said that is part of the TN …I’m so worry and afraid that this could be the beginning of something new or that the pain is going to come back…I’m up to a point of screaming and crying… but try to control myself because I know the stress and crying its bad for me…any of you feel this way…right now I’m on 100mg of fenitoin in the morning and 75mg of Lyrics at night…please help is this normal…thanks Delia.

Hi, try to stay positive, focus on feeling good, try to “just breathe”. I am also post MVD, and if I consider the pain returning, it’s very scary.
Drink Lots of water, keep that brain hydrated,! Good luck, keep us posted.

I hope it is not returning. Maybe you have been overdoing your activities or stimulation or stress? I have not been pain free from my MVD 11 months ago but I am much better. Some days a lot some days not so much. But I do know that I can trigger it still so I am careful. You must be really worried. This will cause more pain then what is truly present. Try some R and R see what happens? Hang in there. Tree

Thanks…sometimes the best thing is to hear from people like u who are going through the same pain and understand the feeling…I’m very grateful for your comments it lift me up…

My MVD was 14 months ago . I had a few pain free months. I still have pain, but I admit it’s nothing like before. I was terrified (actually, in denial) when the pain started returning. I thought that if I just kept thinking that I was pain free some magical mind-over-matter thing would kick in. Well, it doesn’t work that way. The best thing I did was go back to the neuro and go on a low dose of Tegretol and Topomax along with a muscle relaxer and Magnesium supplements. It’s scary to think that it’s coming back but the best thing to do is face it and take the needed meds before it gets out of control. (Seems like you’re already doing that.) Besides that, learn to not overthink it too much because as I finally realized after countless hours of crying, there isn’t anything we can do to stop it from coming back if it’s going to. We can only treat it with the arsenal we have heard about here. (I don’t mean that to sound insensitive.) I really feel for you. I was terrified when the pain first started up again. You have a lot of people here that understand what you are going through. :slight_smile:

I was so sorry to read your post. I am 11 weeks post MVD and am just about to wean off my Tegretol 100% (by Monday). I have never been "pain" free since the surgery. The bottom nerve pain disappeared right away but the middle nerve pain hung on, gradually getting better and better. I am not at the point that I have one spot on my cheek (corresponding to the tooth under) that if I push on it, it feels like I am pushing on a mild bruise and also here and there it generates some spontaneous pressure that leaves fairly quickly. I wouldn't label it "pain" but more like a little pressure. It may still be the nerve healing or it may just be what I'm left with, which would be fine, except that it is so scary. I need to learn to get over that fear as the weeks go on and tell myself that maybe it will just stay right here for good and that is OK. Maybe, what you are feeling now will never get any worse or maybe it's just a short visit and then go away. I think TN plays with our minds more than anything. It seems so unpredictable in many ways and the loss of control over it is the worse. I will say a prayer for you and we are all here for you.

ihold thanks for your words ( and everyone else it makes me feel not along) I too am in denial about it and pray to be normal again it has been very hard for me to totally change my life…I was very strong physically and emotionally and now I’m a bundle of nerves and can’t do anything life housework to say something…I used to run now I walk ,not right now because of the cold weather…and many other things …its hard…we have three grandchildren and it makes me as not yo be able to take care of them…like I would like to…

The pain is and was on the left side…I feel my scalp burning and sometimes when I touch my nose, feel something strange on my forehead my teeth and my tongue sparks…its just for a moment and its bearable… I’m supposed to not pay attention to it but knowing what happen before uuuffff its hard not to be afraid…thanks again my bell, I hold, Tiffanie and everyone in this group u guys are a big support…let us be in touch and pray together so God can give us strength to keep on living enjoying our family…Delia

And tree69 …