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!

[BARB GEORGE]

I do to some degree, but after 8 years I am better.  I do have PTSD, from many years ago.  

I have a dear friend who is a year out, though and she has a REALLY tough time.  She does have PTSD, from a prior situation, although the startle is NEW.   I feel it could be a combination. Now, I will say, she is no longer punching people.  She has a 'statement' that she repeats (bumper sticker speak) telling people EXACTLY what has happened, and asks them to be more careful.  Just the concept of that little 'speech' CALMS HER, Gives her a time to PROCESS, and if give EDUCATION to those around her.  Thus, she is able to be more prepared!  

I have.  FEAR.  Any sharp movements or startle has me fearful of falling.  I feel, that the multiples of all this combined, can add to the reflex of startle.  

[Karyn]

When I read your entry I said outloud " Oh my God someone else has experienced the same thing !"   It has been 11 months since my car accident and I am still jumping out of my skin at loud noises and even things I should be use to like my dog barking.    So I just wanted you to know....your not alone.   Hang in there.  

[Cheryl Green]

Shwew. Thank you so much, Karyn. There's no consolation like the kind you get when you know you're not alone. It used to be just as bad for me when a light suddenly turned on as when it turned off. What? So difficult. It really is so much better. But sometimes if someone walks up from behind me or makes a sudden movement or noise, I start sobbing. Goodness. You hang in there, too!!

Karyn said:

When I read your entry I said outloud " Oh my God someone else has experienced the same thing !"   It has been 11 months since my car accident and I am still jumping out of my skin at loud noises and even things I should be use to like my dog barking.    So I just wanted you to know....your not alone.   Hang in there.  

[Marc Medina]

Hi Cheryl,

Nope, you're not the only one. Same thing for me, although mine (initially) was often an instant violent rage sparked by being startled. If you check my main post you'll see that I've been taking 2 vitamins (because the doctors were WORTHLESS) that have me back to a good 95+% of where I was before my injury. The vitamins are cheap and don't have any side effects. They've made me a "valid" person again as I was pretty much useless for the first few years. Hang in there and things will improve, but it's a VERY long and slow process. I wish I had known about the vitamins early on instead of struggling for 5 years.

[Cheryl Green]

Thank you, Marc! I just read your main post. Sometimes I only startle, sometimes reach out and punch whatever's near, sometimes sob, sometimes fly into a rage all from just a little something moving in my field of vision. So yes, some real similarities. I'll look into those vitamins. I've also been told by doctors at two different places that there's nothing they can do and that I should just stop working, sit at home, and wait for my skills to improve. And I'm thinking "How will they improve if I don't get out and practice them? How will I tolerate noise, movement, and taking turns in conversation if I block them from my life? How will I stay un-depressed if I sit at home with no tasks, no responsibilities, and no income?" Doctors. Sigh. I'm so glad you've made such enormous gains!

Marc Medina said:

Hi Cheryl,

Nope, you're not the only one. Same thing for me, although mine (initially) was often an instant violent rage sparked by being startled. If you check my main post you'll see that I've been taking 2 vitamins (because the doctors were WORTHLESS) that have me back to a good 95+% of where I was before my injury. The vitamins are cheap and don't have any side effects. They've made me a "valid" person again as I was pretty much useless for the first few years. Hang in there and things will improve, but it's a VERY long and slow process. I wish I had known about the vitamins early on instead of struggling for 5 years.

[Cheryl Green]

Thank you, Barb! I need to work on my speech. I have one, but I noticed recently that my speech is maybe frightening. I was on Skype with my sister, and she kept accidentally making this sharp, loud noise that was pulling up an enormous rage response in me. So I said really, really calmly, "There's a noise coming from your side that's startling me. I'm getting really filled with rage. Is that something you think you can stop making?" It immediately devolved into her sobbing, holding her breath, and trying to get off the call with me because she felt so unbearably guilty about a sound she didn't know where it was coming from. (Everyone in my family is melodramatic, guilt-ridden, and emotionally manipulative like that.) But she didn't ask if I wanted off the call, which I didn't. I only wanted her to know I was having episodes of rage and that I needed to be able to ask her to slow down or pause so I could re-balance if the noise came again. So I'm thinking my speech needs some serious tweaking so it will really buy me time to process. Maybe it's too honest or forthright? It calmed me down amazingly to say the words and acknowledge my feelings since I often don't know what I feel when I feel it.

What does your friend say? I could use some talking points since I'm worried mine won't really work.

Thanks!
BARB GEORGE said:

I do to some degree, but after 8 years I am better.  I do have PTSD, from many years ago.  

I have a dear friend who is a year out, though and she has a REALLY tough time.  She does have PTSD, from a prior situation, although the startle is NEW.   I feel it could be a combination. Now, I will say, she is no longer punching people.  She has a 'statement' that she repeats (bumper sticker speak) telling people EXACTLY what has happened, and asks them to be more careful.  Just the concept of that little 'speech' CALMS HER, Gives her a time to PROCESS, and if give EDUCATION to those around her.  Thus, she is able to be more prepared!  

I have.  FEAR.  Any sharp movements or startle has me fearful of falling.  I feel, that the multiples of all this combined, can add to the reflex of startle.  

[BARB GEORGE]

Oh Gosh, I wish I could remember what and how my friend said what she says... but it was pretty much the same thing each time (we were at a conference together, so the confusions were pretty frequent).  

My own response is something like (and this is to deal with my aphasia problem) " Oh I am sorry, 'words are not working for me right now, let me think a second" and then at the end of the conversation I try to remember to say "thank you for understanding my confusion, I am a double brain injury survivor, and sometimes have a real hard time speaking".  This acknowledges their patience and understanding AND gives ME props for being able to get my words out.  Some times, I don't have that skill set, and I will say "ohhh, sorry, words are bad" and that sort of gets a weird look (LOL) but at least it slows it down enough for me to catch my thoughts.  

You  might want to write your sister and let her KNOW ahead of time that outside noises and distractions are like bombs to you. Sure, they 'know' that, but I have found people forget more than they know, at least when it is about someone else's issues.  Reminders are always helpful.  

Also, I have truly found being in more frequent busy places, helps me.  I still don't do certain stores and areas well.  And I will probably never go back to a large concert arena (LOL) but at least I can handle small areas better for longer.  

I wish you luck.  I sort of 'had it out' with an old friend.  She is ALWAYS saying the 'well, IIIIIIIIIIIIIIIIIIIIIIIIIIIIII' think...... like "well I forget things alll the TIME and I don't have YOUR 'excuse'" even though I have mentioned it.  She also is real good at 'finishing others thoughts' in other words, INTERRUPTING.  Not only is that thoughtless and rude in ANY setting, it is RUTHLESS to someone with a brain injury.  Stealing my words is not acceptable.  not if you claim to be my friend.    Who knows where it will all end up.  But I am proud of myself for pointing it out and standing up for myself.  Grin.  

Take care!  

[Kerry Mischka]

Cheryl,

I also have a startle response after 15 years.  My neuropsychiatrist told me it has to do with what has happened to my brain.  It is not just psychological.  I jump at everything if it surprises me.  I went to a Tampa Bay Bucaneers game and they shoot a cannon after every touchdown and even when I knew it was coming I would still jump....I was never told it would go away.  It isn't something that bothers me.  If you see a psychiatrist, maybe a neuropsychiatrist or a neuropsychologist can help you identify what is causing it for you.  Good Luck....God Bless....Kerry

[ned bane jr., M.S.]

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.

[Kerry Mischka]

Ned......that is a riot what you said about the Startle Response Hall of Fame.  Love your humor....Kerry

[Cheryl Green]

I'm so glad you stood up for yourself too! Someone I knew recently tripped over a little step stool and then (intending to be compassionate? or to relate to me???) she said "See! And I don't even have your excuse!" She put her hand on my shoulder (terrible idea for someone with a startle), giggled, and left. I was so angry because I never trip over things like step stools. I don't trip at all. So how did that experience make her feel more bonded to me but me less bonded to her?. I don't like BI being called an "excuse" for anything. And I don't understand why people feel this strange, nervous need to relate to everything we do or talk about. I think it's totally fine that once in a while everyone who owns a day planner forgets to bring it. That's normal. But if I forget mine and complain about it, it's not normal. First off, I never used a day planner before. Secondly, the only reason I forgot it is that I had to take a different bus from usual, and just knowing I had to walk west from my house instead of east made me so flustered, I left my planner. It's not an excuse; it's the reality of becoming less cognitively flexible. And it's hard. When I hang out with my friends who use wheelchairs, I don't tell them "Oh, I can't walk sometimes too!!!!" So why do people normalize things folks with BI do? Hmmm.

BARB GEORGE said:

Oh Gosh, I wish I could remember what and how my friend said what she says... but it was pretty much the same thing each time (we were at a conference together, so the confusions were pretty frequent).  

My own response is something like (and this is to deal with my aphasia problem) " Oh I am sorry, 'words are not working for me right now, let me think a second" and then at the end of the conversation I try to remember to say "thank you for understanding my confusion, I am a double brain injury survivor, and sometimes have a real hard time speaking".  This acknowledges their patience and understanding AND gives ME props for being able to get my words out.  Some times, I don't have that skill set, and I will say "ohhh, sorry, words are bad" and that sort of gets a weird look (LOL) but at least it slows it down enough for me to catch my thoughts.  

You  might want to write your sister and let her KNOW ahead of time that outside noises and distractions are like bombs to you. Sure, they 'know' that, but I have found people forget more than they know, at least when it is about someone else's issues.  Reminders are always helpful.  

Also, I have truly found being in more frequent busy places, helps me.  I still don't do certain stores and areas well.  And I will probably never go back to a large concert arena (LOL) but at least I can handle small areas better for longer.  

I wish you luck.  I sort of 'had it out' with an old friend.  She is ALWAYS saying the 'well, IIIIIIIIIIIIIIIIIIIIIIIIIIIIII' think...... like "well I forget things alll the TIME and I don't have YOUR 'excuse'" even though I have mentioned it.  She also is real good at 'finishing others thoughts' in other words, INTERRUPTING.  Not only is that thoughtless and rude in ANY setting, it is RUTHLESS to someone with a brain injury.  Stealing my words is not acceptable.  not if you claim to be my friend.    Who knows where it will all end up.  But I am proud of myself for pointing it out and standing up for myself.  Grin.  

Take care!  

[Cheryl Green]

Thank you, Kerry!

My first neuropsychologist and first neurologist were positive it was psychological. The second neurologist is positive it isn't. The second neuropsychologist nearly rolled his eyes over it. So I don't know. But honestly, this discussion thread has brought me the greatest relief at all! Now, instead of only being embarrassed and resentful, I could ask myself "Well, could you live with this?" Of course I could. So maybe I should stop fighting it so much. :)

Kerry Mischka said:

Cheryl,

I also have a startle response after 15 years.  My neuropsychiatrist told me it has to do with what has happened to my brain.  It is not just psychological.  I jump at everything if it surprises me.  I went to a Tampa Bay Bucaneers game and they shoot a cannon after every touchdown and even when I knew it was coming I would still jump....I was never told it would go away.  It isn't something that bothers me.  If you see a psychiatrist, maybe a neuropsychiatrist or a neuropsychologist can help you identify what is causing it for you.  Good Luck....God Bless....Kerry