Does anyone feel that sounds or lights creates a feeling of overstimulation? And that this possibly pushes us into another bout with our TN. Is it the meds or the TN? I feel like my face is an antennae for electrical energy.
I feel just like this. It has even felt like I feel sound and light on my face before I consciously do. After enough I feel nauseous and I become useless. It is to me like a depressed anxiety. The meds have too many side effects for me. I stopped using them. I'm going back to the doctor tomorrow to begin again.
I think it's just the TN ... I know that loud noises can set me off and I know plenty of others on here that the same happens to.
Thanks for the feedback. I now plan my activities according to their level of stress.
Hi Lou
I am with you absolutely. Overstimulation from sound, light, even too many people in a room talking. In summer I have become a creature of dawn and then night. strong sunlight falling anywhere on my body is triggering. I had hearing protectors made for my ears but on the bad side I can’t tolerate the pressure of it. Someone said to me “just wear those foam earplugs” to which I answered, “if only it was just my ears I hear with” - sound is vibration. Vibration is deadly for me. I prefer my old tv to the new HD and when I stay with my daughter we put it in theatre mode.
So I plan as much as possible too but sometimes I am willing to take the hit. I figure in recovery time for events I am not willing to miss. I still want to embrace the world even if its scaled way back.
Bellalarke
Yes, and that’s the strange phenom with this disease. For me it’s like childbirth, it is so awful when you are going through it so you say things like “never again”, but Mother Nature makes your body forget that pain that is intoletable or we would never go through it again. So when I am going through a restful period I think “oh great it’s going away” so I get careless and don’t protect myself until the pain hits me at 2:00 am, and my teeth are numb, my ear hurts and my teeth are firing off like twinkle Christmas lights, Then I say I will never overdo it again. I will take better care. But then I get mad and say “no I will not allow this disease to take my joy!” And then it does. Lol.
Noise and certain lights would make my pain increase or even start an "attack". Then the noise and the sound would become even louder and brighter. That's all gone since my MVD. :)
Hey Lou, I totally agree with the childbirth analogy:) I find this disease has the strangest quality of amnesia too. When I have moments of almost no pain, I doubt the whole thing. And that’s like suddenly getting rocket boosters…off I go…and then down I go!
The other big life experience for me like that was blue water sailing. Out in the open, 8-15’ waves, 42’ boat, totally committed because there is no way out, having moments of thinking I am never going to do this again. Then ARRIVAL! A bit if rest and ready to do it again.
IHold, wonderful that all the overstimulation business is over for you. Congratulations. Must be like being reborn. I am hoping for that too some day. Lots of things to do in this life when you’re going to have the wind in your face:)
Ha that's so funny, when I have 2-3 minutes of no pain I wonder too if I'm alright and just make it up in my head. Then sure enough I feel a nice stabbing reminder I'm not crazy!