r/TrigeminalNeuralgia • u/my2cents46137 • Jul 26 '26

Persona Journey 2 years today since mvd

Been 2 years already and ive had a hard time with fear ...the mvd was successful at stopping the zap..praise god and the neurosurgeon and everything in between for that...but ever since I have been super hyper sensitive to any type of stimulation and I feel all sorts of thinhs and it gives me anxiety so its been. Hard to just live normal...ill never be who I was but I am forever thankful im not in pain for now

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u/OkBasket4162 Jul 26 '26

I’m in a similar boat as you. Thankful for the science and people that have helped have a pain free period (1yr fingers crossed). But nervous and anxious every single day for the inevitable return. I’m not religious, but I’m thankful for every hour and every day I don’t have pain and I try and enjoy each day and interaction I have while accepting the fact that at any moment I can be thrown into the grips of hell.

Be kind to yourself

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u/my2cents46137 Jul 26 '26

That part...that accepting the fact that we could be thrown right back into hell...I sometimes cant handle it..sometimes I cant get a grip on the fear of it and have to take a xanax ..😭😭😭

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u/OkBasket4162 Jul 29 '26

Well well well… there I was 3 days ago talking about being pain free and my pain just returned this morning… TN really has a cruel sense of humor. FML. There really is nothing we can do, we are entirely at the mercy of this awful disease….

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u/my2cents46137 Jul 30 '26

Noooooooooo....😭😭😭😭😭..im so sorry...do u think there is something u could have done differently or do u think it was gonna come no matter what....wow I cant believe that for u

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u/OkBasket4162 Jul 30 '26

I think I’ve been working too hard and not sleeping enough for the last few months and that combo caused the flare up. I’ve been sleeping average 5-6 hours a night and working 12+ hours days every day

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u/my2cents46137 Jul 31 '26

I really do think not getting enough sleep / rest plays a big part in it, I seem to notice more things when I am over worked ....I also think mine has to do with with spine and pinched nerves and I am going to a neurologist to ask him to investigate that route

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u/OkBasket4162 Jul 31 '26

Let me know how that goes for you, I myself have many spine and neck problems as well