Does anyone else have an extremely exaggerated startle response? Need help with this.

Gingergrrl

Senior Member
Messages
15,685
Likes
46,386
I always figured that it was part of the problems with my autonomic system.
I agree that it must relate to the ANS somehow since mine is so screwed up but feel like there is a neuromuscular component for me, too.

was when my own hair startled me. I saw a lock of hair fall down, or sway back and forth, out of the corner of my eye. And just for a split second I thought, "what's that moving over there? there's no one home!" I felt very stupid.
This made me laugh b/c I can relate to it. I have not been startled by my own hair yet but give me time and I am sure that it will happen.

Like @Gingergrrl said, I immediately knew it was nothing, just my hair, about a millisecond after it happened. But I still got the stupid startle response and it took a while for my heart to calm down.
Exactly!

My husband has startled me so many times that he now makes sure to make some small noise (cough, shuffle, something) rather than walking into a room without me noticing (he can be surprisingly quiet!). And he always calls me before he comes home so that I will know when to expect him. So, yes, spouses can be trained.
The cough or shuffling noise is a good idea but I feel bad even asking for another modification around this illness. But calling when he is at the door (so I am prepared for my dog to go crazy due to the excitement of a door opening) has been very helpful and my mom does the same thing. I think it was actually her idea.

The fact that he trained himself is both sweet (that he cares so much, does not want me to be startled and feel those horrible after effects) and sad (because I HATE that this is another example of a change/burden that has been brought by this damn illness).
Agreed and I told him that it was very thoughtful.

I found this discussion on the dinet forum, in case it's helpful at all
Thanks and will read it shortly. ETA: I just read it and can relate to a lot of what they are saying including many of the examples (except that I no longer drive and for whatever reason, do not have these reactions in the car as a passenger).
 
Messages
97
Likes
551
Location
San Francisco, CA USA
Just chiming in to say I have always startled easily, but it's become far more pronounced since I became sick. I don't suffer physically after being startled, it's just embarrassing. If my partner suddenly appears in my home office without warning I tend to shriek and jump out of my chair a little. Sometimes it feels like the reaction starts after my brain has processed the fact that my partner has entered the room, so as I'm shrieking I'm thinking, "Okay, this makes no sense. Just calm down!"
 

taniaaust1

Senior Member
Messages
13,054
Likes
15,577
Location
Sth Australia
I could do with some tips with training mine, I'm still working on getting him to wipe his feet when he walks in doors.
Maybe I've got the carrot/stick balance wrong, hmmmm.
oh lol, my brain read your post wrong the first time I read it and I thought you were asking about dog training. I almost suggested you train your husband with a dog whistle.
 

taniaaust1

Senior Member
Messages
13,054
Likes
15,577
Location
Sth Australia
@caledonia, I actually see my Endo tomorrow and he tested my morning serum Cortisol level (which I know is controversial) but it should give some idea of what my adrenals are doing (hopefully)!
I found blood test morning cortisol very unreliable as my low cortisol doesnt actually show up on that and is in a good healthy range on blood morning test. If I do a 24hr urine test though, it came out twice out of the three times it was tested like this at under 50 (normal was between 50-250).

...

abnormal startle reflex has been spoken of by ME specialists. So I'd think that would be quite well known by most of the good ME specialists.
 

taniaaust1

Senior Member
Messages
13,054
Likes
15,577
Location
Sth Australia
One silly thing that startled me once, while I was in a bad PEM crash, was when my own hair startled me. I saw a lock of hair fall down, or sway back and forth, out of the corner of my eye. And just for a split second I thought, "what's that moving over there? there's no one home!" I felt very stupid.
:) Ive been startled by my hair falling onto my face too. As I moved some hair moved and hit my face and that was enough to trigger off a reaction when I had the startle thing badly. Im glad to hear that Im not the only one to have been startled by ones own hair.

I think I can also remember on one occassion jumping almost out of my skin when I wasnt thinking and suddenly noticed my hand on the bed and hadnt realised I had it sitting there. My brain didnt register the whole situation, so something being where I didnt realise it was and then suddenly I noticed it, just startled me.
 

Gingergrrl

Senior Member
Messages
15,685
Likes
46,386
If my partner suddenly appears in my home office without warning I tend to shriek and jump out of my chair a little. Sometimes it feels like the reaction starts after my brain has processed the fact that my partner has entered the room, so as I'm shrieking I'm thinking, "Okay, this makes no sense. Just calm down!"
Kristen, I do the exact same thing if I am in deep concentration at my computer and my husband opens the bedroom door. If it's loud it can startle me but if it's silent and not expecting it, it can startle me, too. It is absolutely not his fault and I am trying to figure out what to do about this. I am fascinated that so many of us have this exact issue.

oh lol, my brain read your post wrong the first time I read it and I thought you were asking about dog training. I almost suggested you train your husband with a dog whistle.
This made me laugh, thanks, Tania! :rofl:

I found blood test morning cortisol very unreliable as my low cortisol doesnt actually show up on that and is in a good healthy range on blood morning test. If I do a 24hr urine test though, it came out twice out of the three times it was tested like this at under 50 (normal was between 50-250).
Two years prior to starting Cortef, I had done blood and urine Cortisol tests for my Endo and they were normal. Then the following year I did the saliva Cortisol test when I was seeing a Naturopath and it was abnormal on three of the four measurements. It was my main doctor who started me on Cortef in mid 2015 in an attempt to prevent anaphylaxis to food and we were desperate to try anything (and I did not have a mast cell doctor yet). Now I've had two failed Cortef tapers but really want to come off of it.

I see my Endo tomorrow morning and he will tell me what the morning Cortisol blood test showed (and I did not take Cortef prior to the blood test that morning). I have been told by a friend who knows a lot about endocrine issues that this test cannot distinguish how much Cortisol is produced by the brain vs. the Cortef pill and my Endo agrees with this but he still wants to see the numbers. Once he was worried that the Cortef had created a secondary adrenal insufficiency but at my last appt, based on the numbers, he said this was not the case.

Another friend told me that Cortef (and steroids in general) leech Magnesium from your system which could be producing, or at least adding to, my startle reflex. This is yet another reason that I would like to get off of Cortef but every time I try, within one week, I cannot tolerate food and right now my MCAS is in another remission so I do not want to rock the boat. But Cortef causes so much weight gain and future diabetes risk, etc. I am curious what my Endo will advise tomorrow.

abnormal startle reflex has been spoken of by ME specialists. So I'd think that would be quite well known by most of the good ME specialists.
I will ask my ME doctor (who is my main doctor) about this, too, and am curious to hear his take on it. I don't think I have ever discussed the startle reflex with him (but I could be wrong and not remembering)!
 

snowathlete

Senior Member
Messages
5,374
Likes
14,599
Location
UK
@snowathlete It sounds very similar to my experience in that once you realize it is just the gate slamming, it does not lessen the reaction.

Do you get the muscle issues or the feeling like a shot of Epi to the heart when this happens?

Also, I completely relate to what you said re: your wife entering the bedroom out of the blue in a noisy way. The problem for me is that the opposite (if my husband enters the room in complete silence and I just see a shadow) also triggers the response! So I cannot figure out what is the best way for him to come in (noisy or silent)? It sounds so silly and I was actually trying to figure this out before you wrote it!
I don't think I get muscle changes really, it's just my heart which feels exactly like it's had a shot of Epi! Rationally knowing what it is, even almost instantly, makes no difference and doesn't reverse it. Once it's started there is no stopping it, you're along for the ride. It was bad enough that I went to my GP in the end, and she prescribed me beta blockers. I thought that was a bad idea though so I didn't take them.

The same happens if I get a visual shock, for instance if someone comes to wake me up for some special reason and I can't hear them because of my earplugs. So I sense them open my eyes and they are there. I don't think it sounds as if I am as sensitive as you are in that respect though, as normally a shadow wouldn't cause that reaction for me.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Likes
12,279
Location
U.K
Im too sick right now to read your whole thread Ginger, but just to say I also used to have this very badly. I didn't get stiff muscles from it though - I think mine was caused by low cortisol maybe?

It happened multiple times a day and my system could take minutes or hours to calm down again afterwards. At one point it was so severe that the sound of my husband breathing in and out in bed at night would trigger it so I would be startling constantly for hours - then if this happened my foot would go kind of stiff and spastic like MS patients get and I would nt be able to stop my foot from flexing really hard - it was awful.

I didn't do anything to treat it and it eventually went away, probably just to be replaced by another horrible symptoms instead.
 
Messages
3,444
Likes
5,339
Location
USA
Search for how to calm your nervous system (ultimately is what you want) sample:
  • Immersing your face in cold water (diving reflex)
  • Attempting to exhale against a closed airway (Valsalva maneuver).
  • This can be done by keeping the mouth closed and pinching the nose while trying to breathe out. This greatly increases pressures inside the chest cavity stimulating the vagus nerve and increasing vagal tone
  • Singing
  • And of course, diaphragmatic breathing techniques
 

PeterPositive

Senior Member
Messages
1,426
Likes
1,056
If you get a exaggerated flight or fly response you need to tilt your nervous system to the sympathetic arm. There are tones of stuff to do it, I tend to do the deep breathing because is the faster and I don't have to work on prepping anything.
There are indeed a ton of things to do... none of which quite works at least for me :lol:
It's easier said than done fighting adrenaline surges with mental images and breathing. A knock on the head would probably be solution :) But then you have to deal with the headache.

I usually try a mix of deep breathing, niacinamide, valerian and passion flower.
 

PeterPositive

Senior Member
Messages
1,426
Likes
1,056
We changed my mobile ring tone to the theme tune from Trailer Park Boys because it was the most laidback tune I could think of. I smile when it rings now.
Good point, I should probably change it too, but I am old fashioned and I prefer a bell ring.
Maybe cow bells should work. More of a bucolic sound without the harshness of the classic phone ring :)
 

Gingergrrl

Senior Member
Messages
15,685
Likes
46,386
best luck with tomorrows appointment.
Thanks Tania and we are on the way to my appt now. Was doing much better with the startle reflex yesterday and then my dog barked very abruptly and shrilly this morning and scared the crap out of me and I am still trying to recover from the reaction!
 

Gingergrrl

Senior Member
Messages
15,685
Likes
46,386
And of course, diaphragmatic breathing techniques
If my body had the ability to do diaphragmatic breathing, I literally feel like my illness would be cured. There is something muscular, neurological or neuromuscular that stops this process from occurring.

Add me to the club. :rolleyes:
Sometimes I can get the equivalent of an adrenaline shot simply because the phone is ringing.
Yep.

It's easier said than done fighting adrenaline surges with mental images and breathing. A knock on the head would probably be solution :) But then you have to deal with the headache.
Agreed LOL.
 

Sidereal

Senior Member
Messages
4,856
Likes
17,277
I had this when my overall symptoms were severe. It was an absolute nightmare. These days I get the sensation of epi injection and shaking/trembling muscles only from severe stress but not from ordinary things like doorbell ringing or door slamming or dog barking.

My grandmother has a pretty extreme startle reflex with seemingly no ability to habituate to repeated stimulus. For instance, thunderstorms. She'll jump in her chair just as much on the fifth lightening strike as on the first one. That's not normal.
 

Gingergrrl

Senior Member
Messages
15,685
Likes
46,386
Im too sick right now to read your whole thread Ginger, but just to say I also used to have this very badly. I didn't get stiff muscles from it though - I think mine was caused by low cortisol maybe?
@justy, am so sorry that you had to deal with this symptom, too, which is now sounding universal with us. I wish I had created a poll to go with this thread since the percentage of us that either do (or did) experience this symptom is so high. @Sushi is there a way to retroactively create a poll with this thread or would it be invalid now?

As far as the Cortisol issue, I saw my Endo this morning and learned a lot at the appt. I am going to write about it shortly in another thread that I have on PR re: my prior failed Cortef tapers vs. in this thread b/c it seems more relevant there. I also see my Neuro later this week and really hope to get some additional info from her.

It happened multiple times a day and my system could take minutes or hours to calm down again afterwards.
I am so sorry and I can totally relate to this.

At one point it was so severe that the sound of my husband breathing in and out in bed at night would trigger it so I would be startling constantly for hours
This has not happened to me and my husband wears a CPAP machine for sleep apnea at night that is pretty quiet. Even when his CPAP starts to make a noise for some reason, it has never startled me. It is very specific things that seem to trigger the startle response for me vs. others that don't trigger it at all. It's very odd!

I didn't do anything to treat it and it eventually went away, probably just to be replaced by another horrible symptoms instead.
Am glad that it went away. I am curious, when it did go away, did you have any change in regard to taking either Magnesium or Cortef (hydrocortisone)?

These days I get the sensation of epi injection and shaking/trembling muscles only from severe stress but not from ordinary things like doorbell ringing or door slamming or dog barking.
That is interesting and I don't get the startle reflex/sensation of Epi to the heart from severe stress and instead get it from these ordinary unexpected noises like a knock at the door and my dog barking, etc. It's the process of being caught off guard that triggers it for me.

My grandmother has a pretty extreme startle reflex with seemingly no ability to habituate to repeated stimulus. For instance, thunderstorms. She'll jump in her chair just as much on the fifth lightening strike as on the first one. That's not normal.
My mom has a bad startle reflex, too, but not to the level that I do. I was thinking about your thunderstorm example and we so rarely ever have thunder here that I'm not sure if it would trigger the startle response for me. But if we did, I think once I knew the thunder was happening and I was ready and prepared, I think the additional strikes would not startle me. When I am prepared (like when my husband calls and says he is about to open the door so I know my dog is about to bark, etc) then I am okay. But when I am not prepared, it's like my autonomic system goes haywire and starts the chain reaction.