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

Gingergrrl

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On a separate note, I had the startle reflex really bad tonight twice from my dog barking and even my throat muscles froze this time where I could not swallow for a few seconds. It was the scariest reaction yet. I really do not want to put a bark collar on my dog but this is getting unbearable for me. I have no issue with an ongoing constant bark (which she does not ever do) versus the sudden, unexpected, shrill high pitched bark that is so jarring to my system, it is indescribable. I was about to eat dinner but wasn't able to and my throat muscles are not weak, they just froze similar to how my arm/leg muscles freeze in these startle responses. It is truly maddening.
 

PeterPositive

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Do benzos work in these cases? To restore some GABA and calm the heck down?
I used to take them occasionally in my 20s when I had trouble sleeping. In the past 5-6 years I have had so many issues with food and basic supplements and I am still pretty reluctant to try anything stronger than valerian or similar herbs. I still get side effects from stuff that is largely innocuous for normal people...
 
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Sorry to hear about so many people having this problem.

I only have a minor problem with it, usually when I am in a room with my back to door, don't hear someone enter, then they speak. It's interesting how it happens when we are concentrating on something else.

I wonder if it is to do with how we process information? Maybe people without the illness can process more sounds/visuals subconsciously than we can? Or that they can process stimuli quicker when it happens.(Especially when concentrating)

I'm interested that I have this response in a mild way, yet can watch a horror film and it doesn't happen to me.

Anyway, here's some ideas out of left-field.

Some techniques I learned when suffering from anxiety attacks, for stimulating the parasympathetic nervous system,

  • If you can't do deep breathing, what about alternate nostril breathing? You use your thumb and a finger to close a nostril on each side of the nose, so that you breathe in through one and out through the other, then alternate. This works for me sometimes when panicking.
  • Focus on something to distract you. Count your breaths, 1-10 then start again, over and over until you calm down.
  • Imagine you are breathing into your toes and out again, over and over.

  • Imagine you are breathing into each finger individually, keep repeating.
  • Look at something like a watch or clock with a moving second hand.

Noise exposure therapy. (for you, your dog, or both)

You can get CD's with random noises on them, usually used for training dogs. They have sounds like thunder, fireworks, doorbells etc.

You start off by playing it very quietly, barely audible, then gradually increase the volume over time.

If it works for some dogs, maybe it could work for us humans too?

Maybe try it as background sound while doing normal things?

And lastly, an article on how to train you dog into being calm when the door bell goes.

http://www.clickertraining.com/how-to-keep-your-dog-calm-when-the-doorbell-rings
 

anciendaze

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Having merely skimmed this thread I don't have a comprehensive answer. I too can report problems with "startle response". Since the "flight or fight" chemical is adrenaline/epinephrine, and this is detected by adrenergic receptors, I strongly suspect problems with beta adrenergic receptors. We are still waiting for more research on these, though they have been implicated in some studies.

There are multiple ways that receptors in the nervous system can go wrong. Generally, I list four classes of biochemical errors, which involve ion channels, presynaptic receptors, postsynaptic receptors and protein kinases. At present most research doesn't even cover this range of potential malfunctions at each of the many classes of identified types of synapse.

This kind of response also exposes an imbalance in autonomic function toward sympathetic activation and away from parasympathetic, which would damp down the response. As only a rough rule of thumb the sympathetic branch of the autonomic nervous system uses glutamic acid or glutamates, while the parasympathetic branch uses GABA. It happens that biosynthesis of these chemicals has a common pathway, with glutamic acid being converted to GABA. Antibodies to GAD65 interfere with the enzyme needed for this conversion, shifting toward glutamate and sympathetic activation.

If all this were not enough, there is a special kind of glutamate receptor called an NMDA receptor. This controls an ion channel, and has two co-agonists: glutamate and glycine. Damage to these receptors is known to produce a bizarre range of neurological symptoms. Most of us fall far short of the threshold at which NMDA-receptor autoimmune encephalitis is detected, but research on these disorders didn't even identify a single victim until about 2004. The NMDA receptor is unusually complicated, and there are multiple ways it can fail. Researchers are probably not catching all of them.

@Gingergrrl, you already know you have antibodies to GAD65 and N-type calcium channels. These alone would be enough to shift your "startle response". I will also point out that acute shortness of breath (dyspnea), which is secondary to your calcium channel problem, is well known to trigger panic attacks. I suspect we still haven't reached the end of the list of problems, but hope you can improve without a struggle to eliminate every anomaly. Few human beings could be considered biologically perfect, but most are able to compensate for their problems.
 

Gingergrrl

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Do benzos work in these cases? To restore some GABA and calm the heck down?
I have found that Klonipin and Magnesium both help (have tried them both separately and both are beneficial in and of themselves but I think the combination is ideal). I am certain now that having the anti GAD65 antibody, my body is not converting glutamate to GABA and this is behind the startle response. I spoke with a friend who explained to me how this response can mimic a magnesium deficiency even though it is a different process. I am also investigating a supplement that may be helpful.

I see my Neuro tomorrow and am actually truly concerned that I might be developing SPS (Stiff Person Syndrome) from this antibody (GAD65). Last night my dog barked twice (not at door, just randomly) and I had an episode that I can truly label as dystonia in which my entire leg was violently shaking and it was so painful. My husband and I were both trying to hold my leg down but it would not stop. I have never experienced anything like it and the pain brought me to tears. Plus the feeling as if I had been shot with Epi and the muscle twitching. But the scariest part was my throat muscles locking up so I could not swallow.

It's so ironic b/c my MCAS is better and I can eat food again and I have no issues swallowing food (my throat is not weak) but in the startle reflex, my throat is now freezing up. I am so glad that I will see my Neuro tomorrow to hear what she makes of all this.

And lastly, an article on how to train you dog into being calm when the door bell goes.
I think my dog is a lost cause and is almost 11 years old. Today is my b-day and my mom asked what I wanted and I said that all I wanted was for her to take my dog and babysit her for a few days so I can have a break from this. She loves my dog and has babysat her since she was a puppy so was happy to come get her. Ironically, she had bought me a b-day card that when you open it up, it is dogs singing, "Happy b-day" and she felt so bad for buying it but she didn't know! But since I was warned before opening it, it did not startle me (but I will not be opening it again)!

And other things besides my dog trigger the response, too, but right now she is the worst offender b/c she can be asleep under a blanket and then just do this sudden bark out of the blue b/c she heard a noise in the hallway. I think she is a lost cause.

@Gingergrrl, you already know you have antibodies to GAD65 and N-type calcium channels. These alone would be enough to shift your "startle response".
I realized from my research and talking to several smart friends that I am just about certain that I have a (rare and yet to be named) autoimmune disease(s) b/c of all of these antibodies vs. ME/CFS. I have way too much glutamate and not enough GABA (from the one antibody) and then muscle weakness and breathing issues from the other. If I could find a way to control these antibodies (increasing IVIG, maybe trying RTX, klonipin, magnesium, who knows what else maybe could help it)? I will literally do anything to stop this startle reflex and the dystonia and muscle issues. I am really desperate and really sick of all of this.

I suspect we still haven't reached the end of the list of problems,
I agree. I did a blood draw yesterday to get nine autoantibody tests through Cell Trend Labs in Germany and just tracked my Fedex package and it cleared customs in Cologne and will arrive at Cell Trend tomorrow.

This will test nine other autoantibodies (anti-cholinergic, anti-muscarinic, and beta-adrenergic) and my main doc is very interested in my results. Plus will show them to the Neuro.

If it turns out that I have stiff person syndrome (SPS) or some other rare thing, I am now prepared to travel (even by plane) to an expert who is familiar with these autoantibodies. I have not yet spent any of my life savings on this disease but if there is someone who can help me, I am prepared to spend it all.

It's shocking to me that the experts on ion channelopathies are not in the US and that these tests only available in Germany. It seems like there must be someone in the US who deals with this stuff but I cannot find them!
 
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caledonia

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Thanks and I read the last link from Chris Kresser and it really does not match my symptoms although a few seem to overlap with all of the illnesses (especially the autoimmune stuff and allergies/sensitivities). But I have never had any amalgam fillings in my entire life and suspect this is not the issue for me.
Here's a better list of symptoms. I didn't think that other link was very complete.

http://www.mercurypoisoned.com/symptoms.html
 

Gingergrrl

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Here's a better list of symptoms. I didn't think that other link was very complete.

http://www.mercurypoisoned.com/symptoms.html
Thanks and I looked at the list and it doesn't match with my experience and I've never had any silver, gold, or amalgam fillings or root canals or dental work. I saw my neurologist today and am pretty sure that I have other stuff going on that has nothing to do with mercury. Thank you for the info though and it was interesting to compare just to be certain.
 
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I've been easily startled since I was a child but much worse since having ME/CFS. However, I have noticed this last month that my reaction has reduced. Today, 2 friends jumped out at me and I barely flinched, a few days ago someone else tried to make me jump and I hardly even reacted,! I've been on the simplified methylation protocol the past couple of months, plus co-factors and extra supps, eg resveratrol, NAC) including 600 mg (or maybe mcg)of magnesium ( I do the magnesium as an enema as recommended by Dr Myhill). The difference in my startled response is profound. Maybe I should put this in a new thread?
 

Carl

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This is a fairly old thread but has no update.

Have things been resolved or sorted out?

Most CFS sufferers have weak kidney energy which can cause a tendency towards anxiety and increased fear response. There might be a combination of things which are contributing to Gingergrrl's problems.
 

Gingergrrl

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This is a fairly old thread but has no update. Have things been resolved or sorted out?

Most CFS sufferers have weak kidney energy which can cause a tendency towards anxiety and increased fear response. There might be a combination of things which are contributing to Gingergrrl's problems.
Since I started this thread, I wanted to reply to you and apologize for the delay. My exaggerated startle response that tortured me for about 2 yrs (maybe longer?) 100% disappeared from high dose IVIG and has not returned. I've experienced my fire alarm going off and someone dropping and shattering a glass platter in a restaurant and neither phased me beyond a normal momentary reaction.

In my case, am now pretty certain that the IVIG reduced my GAD65 autoantibodies and this was the cause. I currently have no additional IVIG authorized by my insurance, so am not sure if the startle response and other symptoms will return if the autoantibodies build back up before I can get further treatment.
 

Carl

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It is nice to read that you have solved it and I hope that it continues. The immune system when exposed to constant challenge from incompletely digested food molecules can be a big problem.

I did experience the elimination of the alarm reaction by taking eleutherococcus senticosus (siberian ginseng) which is more gentle, less stimulating than the Korean ginseng and more suitable for women. It sensitizes the body to cortisol, so the adrenals only need to produce smaller amounts to do the same work which lowers the overall cortisol in the body. It also disables the alarm reaction so any shocks do not produce adrenalin release and a startled response.

If you cannot get any more or if there is any delay in you getting some and you need something to spare you alarm reaction then it might be useful. It might not stop the antibody problems but it might be useful for a short time if really needed. A tincture or fluid extract might be best and then increase from a small dose to see what effect it has.
 

Gingergrrl

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It is nice to read that you have solved it and I hope that it continues. The immune system when exposed to constant challenge from incompletely digested food molecules can be a big problem.
Thank you and in my case, I don't believe the startle response had anything to do with undigested food particles vs. the GAD65 autoantibody (which was reduced from ten months of IVIG). But I have no doubt that each case is different.

If you cannot get any more or if there is any delay in you getting some
At present, I am not approved for any additional IVIG which is a real bummer and my next IVIG cycle would have started in four days. Am still hoping for a miracle that either I am approved for Rituximab or I am approved for additional IVIG in the interim. But at present, am approved for nothing :aghhh::mad::bang-head:.
 

roller

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Sorry to hear about so many people having this problem.

I only have a minor problem with it, usually when I am in a room with my back to door, don't hear someone enter, then they speak. It's interesting how it happens when we are concentrating on something else.

I wonder if it is to do with how we process information? Maybe people without the illness can process more sounds/visuals subconsciously than we can? Or that they can process stimuli quicker when it happens.(Especially when concentrating)

I'm interested that I have this response in a mild way, yet can watch a horror film and it doesn't happen to me.
i have this startle response only sometimes.

normally, im not startling at anything.

example:
im in the kitchen, with the back to the door.
the other housemate comes downstairs, noisy, wooden stairs.
i know 100% its him.
he approaches the kitchen, i hear each step.

i startle, as soon as i turn the head, as soon as i SEE him.

whether i hear the person or not, i hardly startle from a noise they make.
or when they speak.

i startle the moment i see them.
even if i know, they are there.
i cant suppress that, but its only in certain periods.
 
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prioris

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I have had the startled response problem too from any unexpected noise. I found the root cause being not getting enough magnesium.
 

kendonoghue

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Just wanted to add, seeing this thread pop up again; that I too, get a cartoonishly over-exaggerated startle response. I have been diagnosed with hyper-adrenergic POTS, at U Toledo syncope and autonomic disorders center. I don't think I've seen this as a symptom throughout the CFS/ME literature; however, it is a marked symptom, that I never had previously in my life.
 

Gingergrrl

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Just wanted to add, seeing this thread pop up again; that I too, get a cartoonishly over-exaggerated startle response. I have been diagnosed with hyper-adrenergic POTS, at U Toledo syncope and autonomic disorders center. I don't think I've seen this as a symptom throughout the CFS/ME literature; however, it is a marked symptom, that I never had previously in my life.
This is an old thread and I haven't had the startle response for about two years (maybe more?) and it went away shortly after starting IVIG. I was curious @kendonoghue, have you been tested for the anti GAD65 autoantibody?
 
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I hadn't seen this thread before, and I'm finding it all very interesting! I've had a pronounced startle response since becoming sick. When I hear loud or unexpected noises or see a person in the room I didn't expect to be there I jump, gasp, and my adrenaline races! It doesn't last very long, and it doesn't give me muscle pain or problems. It hadn't ever occurred to me that it might be connected to ME/CFS--I just thought it was a strange personal quirk. Thank you all for sharing everything--I'll read through all of the posts more carefully when I have the energy and focus to do so.
 

CedarHome

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In the last 1-2 yrs I've developed what I would call an exaggerated startle response but initially it was just an occasional thing with random episodes here and there. Now it happens multiple times per day and it's driving me insane b/c I cannot figure out a single thing to stop it :bang-head::bang-head::bang-head:.

Does anyone else have this and what do you do for it?

The number one trigger is an unexpected noise (someone knocking at the door, my dog barking, etc) but it can also be an unexpected movement (someone opens my bedroom door when I am in deep concentration or they enter the room when I am resting and I see a shadow move which scares me) or even an unexpected touch (my dog jumps on top of me when I don't know she is there or my husband touches my arm when not expecting it, etc).
I experience this as well (on a milder basis.)

I was "startled" out of sleep by a fire starting on the power line outside the bedroom window over a week ago (explosion, lights, noise) and I don't think I've recovered from the adrenaline surge yet. My husband was merely "interested" in the fire and curious about it- I went straight into full on panic mode.

I have slept probably 2 full days since then and energy still not recovered.

I wonder if it's related to adrenal dysfunction as that remains pronounced for me. I do take a lot of magnesium.
 

kendonoghue

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This is an old thread and I haven't had the startle response for about two years (maybe more?) and it went away shortly after starting IVIG. I was curious @kendonoghue, have you been tested for the anti GAD65 autoantibody?
This is an old thread and I haven't had the startle response for about two years (maybe more?) and it went away shortly after starting IVIG. I was curious @kendonoghue, have you been tested for the anti GAD65 autoantibody?
My new Autoimmune Internist Doctor just did them:
GAD65 Ab Assay, S 0.01 nmol/L <= 0.02

The whole autoimmune dysautonomia test from Mayo was negative; however, I just started my first IVIG, and am cautiously optimistic.
 

Gingergrrl

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My new Autoimmune Internist Doctor just did them:
GAD65 Ab Assay, S 0.01 nmol/L <= 0.02
I was curious when you said your new "Autoimmune Internist Doctor" what specialty they were? (Since there are so few Dysautonomia specialists out there)!

In your case it looks like the anti GAD65 is not the cause of the insane startle reflex since it is negative. Anything under 0.02 is negative on the Mayo panel. Mine was 1.6 back in 2016 and then after IVIG & Rituximab it was 0.08 so it was still positive but had definitely gone down. My startle reflex however went away from the IVIG alone before I added the Rituximab.

The whole autoimmune dysautonomia test from Mayo was negative; however, I just started my first IVIG, and am cautiously optimistic.
Mine was positive for anti GAD65 and the N-type Calcium Channel or LEMS autoantibody. I was curious, did you test positive for other autoantibodies (outside of the DYS1 Panel)? Are you doing IVIG solely for Autoimmune POTS or for other illnesses/diagnoses, too? I was literally just discussing this with someone else (in general, not about you!) and am now very curious.