Does anyone have an exaggerated startle response

[Cheryl Green]

I have had this amazingly huge startle response since my TBI in August, 2010. For nearly a year, any sudden sound (or even when it suddenly got silent), light, or movement caused me to throw my arms in the air, kick my legs, gasp, you name it. My PT said it was brain-stem related, my Neurologist said it was psychological, my MD had nothing to say. I got a new Neurologist who said it's not psychological but didn't say what causes it. I don't meet the criteria for PTSD and don't feel like I have that anyway. But I know increased startle is part of PTSD. It's been getting to be a lot smaller and less often, but I am beside myself. Nearly two years of counseling, EEG, MRI, and accepting that it might be psychological: it won't go away.

Does anyone else struggle with a huge startle response?
If you do, what have your providers told you causes it?
Thank you!

[Cheryl Green]

When we have the Startle Hall of Fame induction ceremony, we'll keep the lights low, have no applause, and stand 10 feet apart from each other. I've certainly punched others, and early on I punched myself in the face a lot early on when my arms flew in the air. Or, I would fall into that airplane crash position with my head between my knees. Totally involuntarily. I'm an odd bird sort of like you, Ned, because I have a master's in speech-language pathology with training in brain injury rehab. I never overcame my anger problems and difficulties with humor and figurative language after a bike wreck in 2003 (although all my other symptoms from the other bike wrecks and kicks in the head eventually faded). But in 2010, not long after getting my degree, that bike wreck just did me in. I was twitching and startling within moments of the wreck (among many other problems like dizziness and screaming and cussing at people). I have injured my brain so many times, impacting in so many places that I suppose it's no wonder things like this crop up, right?  I am eternally grateful to find others posting here. My first doctor's favorite thing to say to me was, "You're a case study! I've never seen anyone like you!" This was supposed to what, make me feel proud or make me feel like he thought I was faking? I thought I was all alone with this. Now I realize he hadn't seen people like me, but that only means that he hadn't seen people like me. Shwew. I'm glad we peers can stick together to support each other!

ned bane jr., M.S. said:

I just about jumped out of my skin when I read your question. A wise person doesn't want to be standing in any radius of me when I have a cup of coffee and somebody speaks to me from behind. Chances are high that when I leap at the voice they're going to get scalded. I have had a slightly elevated startle response for most of my life. After brain injury, it has gone off the chart. I hope I'll eventually be inducted into the Startle Response Hall of Fame. It was some time after my injury that I realized I was a startle response pro when I was sitting in a booth at a diner and the waiter came with the tray of drinks. As he bent to set them down, I shot up and knocked the whole mess on him and the surrounding area. Part of this is neurological, post-injury. I have no occipital lobe lesions but lesions in other parts of the brain interfere with visual perception and transmission. It's a beast to detect through neuroimaging. I'm an odd creature, though. I'm a survivor of comatose TBI with a degree in neuropsych ... and a jumpy body. .. cheers, ned b.

[Karen Isley (Peaches)]

Hi Cheryl     I am so glad I read this now I know that it isnt just me!!  I have TBI for 11 years now & I still startle very easy (usually just scream now) & that is so much better than it use to be.  Hang in there hun it will get better!!!!  :)

[Geo Gosling]

Yes, at least I think I do. I suffered a severe TBI in 1995 and when I am startled, I lose my balance. I don't fall over or anything like that, but I usually need to take a step or two and/or hold onto something. I think it's improving - I think. I have to hold on to something if I look up into the sky quickly, otherwise I lose my balance and may (I have) fall over. I'm OK if I look up really s-l-o-w-l-y.

[Cheryl Green]

Oh, thanks for sharing that Geo. For about a year I would lose my balance when I startled too. Isn't that so strange? I'm glad you don't actually fall over! I fell once with it, but usually I managed to find a wall. If you think it's improving...I bet it is!

Geo Gosling said:

Yes, at least I think I do. I suffered a severe TBI in 1995 and when I am startled, I lose my balance. I don't fall over or anything like that, but I usually need to take a step or two and/or hold onto something. I think it's improving - I think. I have to hold on to something if I look up into the sky quickly, otherwise I lose my balance and may (I have) fall over. I'm OK if I look up really s-l-o-w-l-y.

[Aaron]

not sure what i call it but i got it too, its not ptsd i hope but we cope i guess

[scottspitzer]

Hi, as a result of my TBI in May, 2003, I can only focus on one thing at a time. So even a light tap on my shoulder while I'm reading is like popping a balloon right next to my ear! Also, by being startled, it makes me forget some of what I just read. I learned after a while to wear soft earplugs to muffle surrounding noise so that I could better hear a person directly in front of me. In a crowded, noisy room, ( like a church lobby on Sunday morning), I absolutely need my chainsaw earmuff protection or I can't separate noise at all! This will not go away since that part of my brain was damaged, almost eliminating my short-term memory. I also completely lost sense of smell. I worked as a foreman in demolition, something big from above fell and knocked me out, making me fall 20 feet unconscious, shattering my skull above my left eye, breaking two bones in my left wrist, and tearing ligaments in my right knee. I cannot focus enough to work anymore, but God left me physically able to do about anything helping others as long as I can go super slow to allow for all of the interruptions and mistakes that I am guaranteed to have....I always know I am so blessed, though, because they thought for sure my neck and back were broken.......I would love to someday find extreme noise cancelling headphones so that I could relax and possibly focus a little.

[Cheryl Green]

Hi Scott,

Thanks for writing! I hadn't thought of it the way you said it before, but it makes a ton of sense. If you're only able to focus on one thing at a time, no wonder other things are startling. Yes, that makes so much sense! You can get some pretty awesome noise-cancelling headphones that cost around $400-500. I have some nice headphones that block a lot of sound. I also got some of these from my Audiologist: http://www.earplugstore.com/custom-musicians-earplugs.html . I have three levels of filters. So if I need to block out the appliances humming but still talk to people, I use the light filter. If I need to walk in the neighborhood without cars scaring me, I wear the mediums. And when I'm on the bus, and the sound of one more person talking on their cell phone at top volume will make me cry, I put in the strongest filters. And put my headphones over my ears. Silence!

You really had a lot of serious injuries with your brain injury. I'm so glad you're so blessed and have a lot to give others!

Thanks for writing.

[Paula L Florentine]

Hi Cheryl,

I had a Basal Skull Fracture in Jan, 2008-I have some of those symptoms even now almost 5 years later-I do have PTSD. I cannot stand loud noise, music, or sounds-either by a startle or anything. I was told it is brain damage in my case and I have to tolerate it where I live. My brain stem was damaged as the entire back of my skull- I bled for 3 days into my brain-as a result these things happen. I do take a lot of medication everyday to help this condition. No counseling, but I pray a lot and remember God is with me everyday. I do the best I can as I live alone here. This is caused when our brains get "overloaded" with the stimulas in the environment-our brains cannot handle the motion, light, or sound. A neurologist told me this. It is from the brian injury and over time may decrease? It will get better. Take care & God Bless You, Paula

[Glen Brist]

 Hi  Paula  -   I   just   read  the   reply on  Cheryl's  page,,,,and   it  got  my  interest....  I   respond  very  strange to   loud  noises,   I  usually  do  the  wrong  thing   when   driving  the   tractor  in  the  field......  and   while   driving  in  traffic  I   really  have  to  focus,  and   not  listen  to  the  radio.... I  can  not  handle   two  conversations  in  a   car..... At  our   state  Conference,   someone  suggested  talking  to   the   Dr.   about   a   ADHD  medication,  at  the  proper  level,  can   increase  focus  and  improve   reaction.....I  haven't   asked  my  Dr.  yet,  but   will   soon....   will  let  you know.....   glen

[Paula L Florentine]

Hi Glen. Thank-you for the suggestion. I can drive okay with the radio ; however I also have to drive very carefully as my reaction time is a little slow due to all the 5 medications I have to take everyday. If 2 people are talking to me at the same time I have no idea what they said to me. I can only handle one conversation at a time and they must speak slow and loud-I am 50% deaf in both ears form the fracture. If someone speaks really fast to me on the phone or in person I cannot understand anything as I have a cognitive disorder. Then I cry and then I get angry because I don't know what is going on? Anyway, I have to focus a lot when driving and be very defensive.

Bye for now. Paula