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Startle response to sounds -- anyone else have painful after-effects?

I have a severe case of sound sensitive myoclonus (exaggerated startle), similar to what others have reported. My startles often trigger painful head spasms, fatigue & disorientation for hours, sometimes days! Been trying all sorts of meds to act as "surge suppressors" to loud sound inputs, nothing has helped so far. I'd be interested in hearing from others who've had this and what's helped manage episodes.

  1. SierraNevadaSnowGuy, while I definitely don't have as bad as you on a consistent basis, there are days when it can really knock me out of commission. I haven't found too much too be helpful yet, other than to make people around me more aware of the situation. Hoping to see what others have to say on it though

    1. When I was first diagnosed, a doctor used this analogy for that. He said our reflexes cam be like a stallion running wild, and our brains are supposed to be like the rider controlling them. In MS the rider is not doing her job. I took neurontin and then Lyrica to try and help with that. It’s worth a try.

      1. Devin, very interesting to read about similarities to your what you experience -- thank you for explaining situations that are difficult for you and how they feel. The sensory overload makes life very challenging, I find myself avoiding more social situations as loud noises can trigger me to startle and scream out. Grocery guy drops at box at Safeway, I'll gasp & what feels like a scream comes out. I'm in the car and a noisy Harley cruises by, I'll startle and scream out. Last week I braved dinner out to a quiet restaurant, but getting to the dining room involved going through the bar, which had a very noisy ice machine -- I walked by quickly and got as far away as I could from that thing.

        I'm predisposed to reacting to sudden noises just about all the time -- some days are better than others, but about half the time I'm extremely sensitive to noises. Nights are a different sort of challenge -- when the house is quiet, normal night-time house creaks can trigger a startle, even when I'm asleep. One thing I've found helps at night is to sleep with a white noise machine. Earplugs can help but sometimes they block out too much, for example if the cat jumps up to the bed, she usually announces her intention with a meow -- if I have earplugs in and can't hear her coming, it can lead to a huge startle when she jumps up!

        I used to have severe headaches which the startles made worse, those are now much better I think thanks to a daily low dose of Inderal. I'm also taking Lamictal, the hope is that acts like a "surge suppressor" for sensory inputs, but the effects aren't immediate so that med is likely a long term bet.

        1. Gee I am still in hospital and i was wondering why noise was driving me bonkers!

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