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

[Mary]

I am not sure if I tolerate niacinamide but if it is the one that releases histamine and causes flushing then it would not be good for me.

Niacinamide does NOT cause flushing - plain niacin is the one that causes flushing.

The following article states that although niacin does cause histamine to be released, it actually lowers histamine levels. However, I understand that just releasing histamine could be dangerous for you. The article does talk about niacinamide (nicotinamide), however, perhaps lowering the "histaminergic" response. You might want to check it out: http://orthomolecular.org/library/jom/2002/pdf/2002-v17n01-p017.pdf

It states in part:

Using niacin to treat histadelia might seem contradictory considering it will augment the release of histamine from basophils and tissue mast cells. However, there is evidence that the niacin flush is mediated by the release of prostaglandin D2 (PGD2) from dermal macrophages and not from degranulation of basophil and tissue mast cells.12,13 Further, Hoffer suggested that daily intake of niacin gradually lowers total body histamine by chronically depleting storage levels. Niacin has a complicated mechanism of action that modulateshistamine release, lowers total blood histamine, and increases the production of PGD2.

The amide form of vitamin B3 (nicotinamide or niacinamide) does not directly promote the degranulation of histamine containing cells, deplete tissue stores, or increase PGD2 release. Nicotinamide might function primarily by reducing the histaminergic response to antigenic stimulation.

Just a little light reading!

 

[Gingergrrl]

Consider adrenal fatigue causing the startle response, and then magnesium deficiency pursuant to having adrenal fatigue causing the twitching muscles and muscle pain.

I have been taking 15 mg of Cortef per day for about 1.5 years (it started as part of a desperate attempt to stop anaphylaxis reactions to food) and now I am unable to taper off it it and have had two failed attempts. Would Cortef relate to the startle reflex in any way? I see my Endo tomorrow and plan to ask his opinion on this.

Replacing the magnesium and other electrolytes if they're also low or deficient and also treatment for adrenal fatigue should be helpful for both issues.

I take Mg Malate every day plus prescription Potassium and Salt Stick tablets. When I was unable to eat food, I drank dextrose/salt water but at present, I am able to eat all regular food again .

Note that mercury toxicity causes adrenal fatigue. So you can patch yourself up with magnesium, adrenal cortex extract, etc. but the ultimate fix is to chelate out mercury if you have it.

To the very best of my knowledge I do not have any issues with mercury and have never had any amalgam fillings. I do however, have a history of significant mold exposure.

 

[Old Bones]

That is so interesting that we use the exact same term! In your case, do you remember what made it go away?

@Gingergrrl As usual with illnesses such as ours, it's often difficult to accurately establish if any improvement or worsening is because of something we've done, or not done, rather than the usual "good day/bad day" (or week/month/year) variations. So, the following is just my opinion about what made my startle response improve.

I've always been acutely sensitive to my environment. ME just made things worse. In addition to the barking/howling dogs already mentioned, there were a number of other unwelcome noise intrusions during the same period of time -- a tantruming six-year old next door (so explosively angry we could hear the slamming doors and stamping feet even when he, and we, were inside our respective houses), and major construction at intersections in both directions (pile-drivers clanging for hours). The combination had me on "high-alert" all day. As a result, I wasn't relaxed at night either, which affected my sleep (already disturbed). It was a miserable few years.

Fortunately, one set of dog owners moved away, and I finally reported the other barking issue to by-law, after years of trying to resolve the issue directly with the neighbour. The six-year old grew out of his tantrums, and the construction was over. In general, we live in a very quiet neighbourhood. So, once these unusual sources of noise were gone, my startle response lessened. I believe intentionally avoiding environments where noise might be disturbing was also very helpful. At first, my improvement was so gradual I didn't notice. Now, years later, I'm often surprised at how unaffected I am in noisy environments I previously couldn't tolerate.

Recently, a new family moved in two doors down the street. For the first few days, it seemed their dog would be a problem, with a return of my startle response. But, thereafter his barking became less frequent. Some days, I don't hear him at all, allowing me the quiet I need to recover from the noise assault. Because "assault" is how unwanted noise feels to me. It seems as long as I have extended periods of time when it is quiet, the startle response doesn't ramp up enough to become a miserable situation.

I really think my brain became overly sensitive due to the frequency of the unwelcome noises. Because, my other senses became heightened to the point I also registered completely false sensations. For example, it often felt like I was stepping in water, despite the floor being completely dry. This, too, has improved.

I know what you mean (from your first post) about it not being a cognitive issue. Like you, my startle reaction was immediate, and therefore not related to how I interpreted the triggers (although, in my case, this developed later with respect to the dogs and six-year old -- anger that the adults weren't doing anything to lessen the impact). I really think being in an exceptionally quiet environment for an extended period of time was the biggest factor in my startle response settling down. When I sense it might be returning, I return to "noise-avoidance mode". So far, this strategy seems to be working. And, husbands are trainable with respect to noise, sudden movements, etc. (at least mine is). Dogs, not so much.

 

[Gingergrrl]

And, husbands are trainable with respect to noise, sudden movements, etc. (at least mine is). Dogs, not so much.

Good point! My husband understands that I have this exaggerated startle response now but sometimes he literally just opens the bedroom door or does something totally reasonable and it startles me. My dog on the other hand is almost 11 yrs old, and she is pretty quiet in general, but she barks if someone comes to the door, if she even thinks the vacuum cleaner is coming out, or when our house phone rings (but not the cell phones). And sometimes she'll just do a random bark b/c she has heard a noise herself. She is a lost cause .

 

[Mrs Sowester]

And, husbands are trainable

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.

 

[Gingergrrl]

I could do with some tips with training mine

Trainable on some issues but not on others LOL. You make a very good point @Mrs Sowester.

 

[eafw]

@lnester7 I just Googled sympathetic arm and sympathetic tone but am not finding anything. Do you have any links on this or things that can be done if one if not able to do any deep breathing? Thanks in advance!

The sympathetic arm (branch, part, whatever) of the ANS is what triggers the fight or flight. For relaxtion the parasympathetic is the dominant function you are wanting to invoke.

If breathing exercises are not good for you- though there are other things apart from "deep" breathing - then you could look at some of the techniques also used for people with sensory-triggered startles eg, weighted blankets, pressure, softness, warmth, low light, hot drink, cold water on face, ice (if you can tolerate it), cuddle from husband or dog.

Anything that triggers "safety" or "slow down" instead of danger will help bring the autonomic/sympathetic system down from high alert

 

[Gingergrrl]

If breathing exercises are not good for you- though there are other things apart from "deep" breathing - then you could look at some of the techniques also used for people with sensory-triggered startles eg, weighted blankets, pressure, softness, warmth, low light, hot drink, cold water on face, ice (if you can tolerate it), cuddle from husband or dog.

Thanks and I do a lot of those thing except weighted blankets are too heavy for me and make my breathing worse. But the other things are very helpful... except maybe my dog who is often the culprit in that moment LOL. It just takes so long for the muscles to unfreeze and stop shaking/contracting in addition to the jittery/Epi feeling. I do well with both heating pads and ice packs depending on the situation. Thanks again!

 

[Dechi]

Thanks for clarifying and "micro second" is a perfect term to describe it! It is even worse if I am in deep concentration (ex: reading something that I am trying to comprehend) when the noise or startle reflex occurs. Is this the same for you?

When I experience anxiety or feel overwhelmed due to a thought or feeling (which of course happens too), it is a totally different reaction. And when I have a histamine surge from food (which is no longer happening at present) this is also a totally different reaction.

Yes, if I am concentrating it is worse. And for me also, it is quite different than the feeling of anxiety. I attribute it to my being so tense all the time, due to anxiety. So that even if I am not experimenting specific anxiety at the time the event happens, I have this very annoying and strong reflex to flee, but I don't move so it's all internal. Or sometimes I can litterally jump. Like this time my mother said : ohhh look at the bat, and I had the most ridiculous reaction of agitating my arms in the air to protect myself and got up on my chair, ready to leave. Until I saw a stuffed toy in the form of a bat hanging from the kitchen lamp. We were inside my brother's house, so bats are pretty rare inside a house, lol !

 

[Gingergrrl]

Or sometimes I can litterally jump. Like this time my mother said : ohhh look at the bat, and I had the most ridiculous reaction of agitating my arms in the air to protect myself and got up on my chair, ready to leave. Until I saw a stuffed toy in the form of a bat hanging from the kitchen lamp. We were inside my brother's house, so bats are pretty rare inside a house, lol !

Your story made me laugh just picturing it but I know these reactions are excruciating. It sounds different from mine in the sense that your brain had a moment to process the word "bat" and what it might mean vs. a startle response. My daughter hates spiders and bugs (and I do too ) but if she screams that there is a spider, my mind has a moment to process the words and my reaction is more of an anxiety reaction.

I have also jumped across the room at seeing a large spider and I cannot even move LOL. But the reactions I am referring to are so different in how they affect my muscles, I wish I could explain them better. It's kind of like dystonia with a shot of Epi to the heart at the same time (but a lesser version than if you were to Google dystonia).

 

[caledonia]

I have been taking 15 mg of Cortef per day for about 1.5 years (it started as part of a desperate attempt to stop anaphylaxis reactions to food) and now I am unable to taper off it it and have had two failed attempts. Would Cortef relate to the startle reflex in any way? I see my Endo tomorrow and plan to ask his opinion on this.

I take Mg Malate every day plus prescription Potassium and Salt Stick tablets. When I was unable to eat food, I drank dextrose/salt water but at present, I am able to eat all regular food again .

To the very best of my knowledge I do not have any issues with mercury and have never had any amalgam fillings. I do however, have a history of significant mold exposure.

I did a little googling and it looks like either high or low cortisol can cause the startle response. It would be good to know what your adrenals are doing. The need for electrolytes makes me think they're low even if you're taking Cortef.

You said you increased your mag again. That should be helpful.

The sensitivity to mold could be pursuant to having mercury inhibiting the immune system.

It can be tricky to determine if you have mercury or not if you don't have an obvious source of exposure. There are many sources people may not be aware of beyond the mercury fillings. For example, the fetus acquires 60% of the mother's body burden. So if your mother had mercury fillings, you would acquire some of that.

Other sources - coal fired power plants, crematoriums, fish, broken thermometer, broken fluorescent bulb, vaccines or allergy shots with thimerosol as a preservative, eye drops and contact lens solution from the 80's, mascara, etc. etc.

The best thing I've found is Andrew Cutler's info. You can do a hair toxic metals and essential elements test. Looking directly at mercury might not tell you anything, as mercury can hide if the exposure is old.

So you look at the elements part instead to see if you have disordered mineral transport. This is a tell tale sign of mercury, like fingerprints left at a crime scene. See my signature link under the Cutler section for more info.

You can also look at symptoms - I have 57 from the list in Cutler's Amalgam Illness book. Or sometimes you just have to try some rounds of chelation and see if you feel any response from that.

 

[daisybell]

Do you kmow if your thyroid levels are normal? I still have a slightly exaggerated startle response, but when I was hyperthyroid, my startle response was terrible. Any slight fright and I used to almost drop to the floor - in fact on a couple of occasions I actually did...

 

[Jessie~]

This exaggerated startle response issue is a problem for me too. I do not have any answers to offer as to why it's happening though. It is definitely not fun .

 

[Dmitri]

Hi @Dmitri Good to hear from you and I hope you are doing okay. I'm not sure if my reaction would be considered a "fight or flight" response b/c when the startle reflex occurs (for me) I do not actually feel threatened and it is so instantaneous it is before I can even have a conscious thought.

I don't feel anything in my intestines although I do feel very jittery. I also associate it with autonomic dysfunction and I have been told in the past that I have hyperreflexia in my right arm (which was injured by Levaquin.) The new term I found on-line is "hyperekplexia" (not even sure how to pronounce it!) and it describes what I experience but I am not sure how it is different than SPS (except that it seems to be more common in babies and young children than adults).

When this happens to you, do your muscle freeze and start shaking and is there anything that you have found that reduces the recovery time?

My situation is stagnating (in a bad way) with some severe flare ups, but not better or worse than usual, thanks for asking. Currently trying to find out more about the neurological aspect of the problem with a few tests which I am awaiting results for.

When startled, I don't experience freezing, but the shaking persists for about five minutes. My thought processes also obsessively latch onto the event for an extended period of time, but I think that's a separate (but related) issue, due to OCD which is also linked to adrenaline disbalances . Sometimes it occurs after I wake up in a state of shock from a nightmare, which is every morning.

Is the hyperreflexia limited to your right arm? I was told that mine was global. Is your arm the only region where the antibiotic was injected?

 

[Gingergrrl]

I did a little googling and it looks like either high or low cortisol can cause the startle response. It would be good to know what your adrenals are doing. The need for electrolytes makes me think they're low even if you're taking Cortef.

@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 really want to taper off of Cortef b/c of the weight gain, diabetes risk with my antibody and other factors but don't know if it will be possible.

You said you increased your mag again. That should be helpful.

I am hoping it will be helpful, too! I ordered some Mg lotion, too, and hoping I will not get an allergic reaction to it like I did with the Mg spray.

You can also look at symptoms - I have 57 from the list in Cutler's Amalgam Illness book.

Do you have a link to that list? I am pretty certain that mercury is not an issue for me but am curious to see how I compare with the symptoms. When I first looked at the list of the Mast Cell symptoms from the Masto Society, I was shocked that I matched on about 35-40 out of 50 symptoms (not all current of course but symptoms I'd had at different times).

Do you kmow if your thyroid levels are normal? I still have a slightly exaggerated startle response, but when I was hyperthyroid, my startle response was terrible. Any slight fright and I used to almost drop to the floor - in fact on a couple of occasions I actually did...

I will find out tomorrow at the same Endo appt if my thyroid levels are normal. I have Hashimoto's but ever since I started on a low dose Armour Thyroid in Oct 2013, my thyroid numbers have been normal. Prior to Armour I was hypothyroid but I have never been hyperthyroid. I know with Hashi's you can go in and out of hyper & hypo but I've never had the hyper part caught on any blood test.

This exaggerated startle response issue is a problem for me too. I do not have any answers to offer as to why it's happening though. It is definitely not fun .

Jessie, it is so interesting that literally all of us (who responded) have this exaggerated startle response and it must mean something. Is it part of the CCC or ICC criteria for ME/CFS? I am still about 50/50 if ME/CFS is my diagnosis but this is definitely a symptom that we all share.

Am tagging @Rose49 (and please do not worry about reading this whole thread!!!) but I was curious, in your husband's research with severe patients, is an exaggerated startle response common? I literally had no idea that it was this common!

My situation is stagnating (in a bad way) with some severe flare ups, but not better or worse than usual, thanks for asking.

I am so sorry to hear that and had been wondering how you were doing lately.

but the shaking persists for about five minutes. My thought processes also obsessively latch onto the event for an extended period of time, but I think that's a separate (but related) issue, due to OCD which is also linked to adrenaline disbalances .

I can have the shaking persist for hours (although sometimes it turns into the internal jittery/shaky feeling where it is no longer outwardly visible). In the startle reflex for me, I am never dwelling on a thought or an event and I very quickly tell myself, "It was just my dog barking" or "just a knock at the door" etc, but yet the physical response continues.

Is the hyperreflexia limited to your right arm? I was told that mine was global. Is your arm the only region where the antibiotic was injected?

As far as I know it is limited to the right arm and just to clarify, the Levaquin was in pill form and was not an injection. After the 7th pill (in 2010) I had a systemic neurotoxic reaction and went to the ER and was hospitalized and it ultimately injured my right triceps tendon requiring six months of physical therapy. This was the very first thing that messed up my health. My right shoulder would compensate b/c I could not use that arm to grip anything so I ended up with constant pain in that shoulder, neck and even jaw (at the time). It still persists today (six years later) although no where near as bad.

 

[snowathlete]

I developed this in the last couple of years. Causes a fight or flight response in my body even though I am calm in my mind and recognize at once what the noise is. Say a gate crashing shut next door. It's bad, especially at night. I had to start using better ear plugs at night - silicone. And I had to ask my wife not to do things like come in the room opening the door out of the blue in a noisy way.

It's a horrible symptom.

 

[Gingergrrl]

@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!

 

[caledonia]

@caledonia,
Do you have a link to that list? I am pretty certain that mercury is not an issue for me but am curious to see how I compare with the symptoms. When I first looked at the list of the Mast Cell symptoms from the Masto Society, I was shocked that I matched on about 35-40 out of 50 symptoms (not all current of course but symptoms I'd had at different times).

That particular list is in Cutler's book, Amalgam Illness, which is not online. I can't reproduce it due to copyright laws.

Here are some excerpts from the book that are a start:
http://www.noamalgam.com/#diseases
http://www.noamalgam.com/#WHAT%20IT%20DOES

Here's an article from Chris Kresser with a list under the subheading
"Mercury affects every cell and system in our body"

https://chriskresser.com/could-mercury-toxicity-be-causing-your-symptoms/

 

[Gingergrrl]

That particular list is in Cutler's book, Amalgam Illness, which is not online. I can't reproduce it due to copyright laws.

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.

 

[ahimsa]

Hi @Gingergrrl @Old Bones and others,

I also have an overactive startle response but maybe not as bad as some on this thread. I have no problem with generalized anxiety or tension. I always figured that it was part of the problems with my autonomic system.

On the bright side, my reflexes are awesome. I can knock a spice jar out of the cabinet and immediately catch it, in my left hand, before my conscious mind even realizes what has happened. And I'm right handed!

Back to the startle response problem, I do not get all the symptoms that @Gingergrrl described. For me is it mostly just pounding of my heart, sometimes a bit of chest pain, and my brain freezes up. I can't think or answer questions properly. It usually takes about 10-15 minutes for my heart to calm down and me start to feel back to my previous "normal" (which changes some from day to day).

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.

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.

It's worse on days when symptoms flare (during PEM / crash episode). And it's not as bad on my "good" days when I have stored up a few rest days, slept a bit better, etc.

When it is really bad (e.g., I've had a few near misses when someone cut me off in traffic over the years) then I might shake, or start to cry, on top of the rapid heart rate and brain freeze. But I don't remember my muscles freezing up or feeling like concrete.

And, husbands are trainable with respect to noise, sudden movements, etc. (at least mine is).

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 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).

I'm angry that he can't just walk around the house like a normal person. He has to always think about whether it might startle me. Sigh.

I wish I could suggest a treatment or supplement of some kind. Mine really seems to go up and down with all my other symptoms and so I never targeted it with a different treatment just for the startle problem.

I found this discussion on the dinet forum, in case it's helpful at all

http://forums.dinet.org/index.php?/topic/24916-exaggerated-startle-reflex/