The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Does anyone else have an extremely exaggerated startle response? Need help with this.

Discussion in 'Neurological/Neuro-sensory' started by Gingergrrl, Oct 1, 2016.

  1. Gingergrrl

    Gingergrrl Senior Member

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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).

    It is not a sensory issue b/c I have no issue with lights, no issue with typing on computer, listening to music, watching TV, talking on phone, etc. For example, I was working on our (belated) taxes last week while listening to music and adding up numbers on calculator and my brain can easily multi-task. So it's not a cognitive issue or even a sensory issue IMO. Doing detailed cognitive tasks like complex paperwork while listening to music and talking to family all at the same time is easy for me.

    I wanted to explain what it was not and now will explain what occurs. I get startled and the response is purely physiological and/or autonomic without even time to process what has happened. My muscles tighten and freeze up including my ability to swallow. My muscles feel like concrete and they start shaking (usually my arms and legs) and sometimes my left shoulder starts twitching. While the muscles are going berserk, I feel as if I'd had a shot of Epi to the heart. I feel jittery and usually confused. Sometimes there is tachycardia but other times it feels like tachy but when I measure it, there is none (probably b/c I take Atenolol for POTS which blocks it).

    The worst example was about a month ago I was at an event at my daughter's school and someone very loudly and completely unexpectedly broke a mirror and it shattered all over the room and literally scared the crap out of me. I was instantly shaking and crying and had to leave the room and couldn't even speak. Rationally, I can immediately understand what occurred (whether the broken mirror or my dog barking) but my body cannot stop the reaction. So there is no amount of CBT or cognitive things I could say to myself b/c the reaction is purely physical. And it's not in the context of an emotionally charged situation either and I could be feeling content or even good prior to the startle/trigger (vs. anxious or upset).

    I wondered if I could be low on Magnesium (which I reduced after learning that I have this calcium channel autoantibody) b/c two Neuros told me not to take Mg b/c it further blocks the calcium channel. Yet one doctor said it was okay to take and another said that they had no idea and could not advise. I see my own Neuro this coming week (she is new and it's only my 2nd appt but I liked her and she supported my IVIG) so I am going to ask her opinion on all of this (the Mg and the entire startle reflex).

    I worry b/c I also have this other autoantibody GAD65 that correlates to SPS (Stiff Person Syndrome) but in SPS, the symptoms seem to be much more severe than what I experience. But GAD65 is the gold standard test for it and I am positive. I wonder if I could now have a mild case if there is such a thing? But one of the meds for it, Baclofen, which I have never taken in my life, is a calcium channel blocker so I don't even think this would be an option for me. Another option seems to be Klonipin which I prefer not to take during the day b/c it makes me tired (although if it could prevent or stop this startle response, I guess it would be worth it). A third option is IVIG which I am already doing although nowhere close to the recommended dose for AI diseases.

    I also have severe muscle pain waking me up every night which includes shaking, twitching, etc, of muscles. I often feel like my neck is being gently pushed toward the side (but I have a long history of neck problems so this could be unrelated). My #1 problem (anaphylaxis) is gone and I am in a remission from MCAS for the second time since starting IVIG and can even eat peanut butter and things I'd never dreamed of with no pre food meds or allergic reaction. My #2 problem, shortness of breath, remains the same but when I lie flat, it eventually resolves itself.

    But this issue, the insane startle reflex and ensuing muscle pain/spasms, is not resolved by lying down or any positional change and seems to just be getting worse and worse. My very worst episode last year lasted for 48 hours but most last for a few minutes to a few hours and finally dissipate. Today I actually thought if I lived alone without other people and a dog constantly startling me, I could have some relief but of course I do not actually want that. It just shows how desperate I am for this to go away! (ETA: just wanted to clarify that I love my dog and love dogs in general and am not scared of them, it's the sudden high pitched bark when I am not expecting the noise that scares me).

    ETA: I also wanted to add that I found a term on-line "hyperekplexia" that kind of matches what I experience except it seems more common in infants/children than in adults. I am not sure how hyperekplexia differs from SPS either.

    Many thanks to anyone still reading and it is impossible for me to write a short post once I get going... :D.
     
    Last edited: Oct 2, 2016
  2. Dmitri

    Dmitri Senior Member

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    I also have an exaggerated "fight-or-flight" response to being startled or threatened. It makes my lower intestines feel constricted and my body becomes jittery. I always associated it with autonomic dysfunction, same with the hyperreflexia I was recently diagnosed with.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    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?
     
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  4. Old Bones

    Old Bones Senior Member

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    @Gingergrrl Your reference to "startle response" is the exact wording I used to describe one of my most unbearable symptoms from the past. Unfortunately (at least in terms of responding to your post), once a particular symptom disappears, or at least improves, I tend to forget about it. So, if you'd asked this question a few years ago, I would probably have been able to provide a much more helpful response. Although I still startle much more frequently and intensely than most, this aspect of the illness is not currently making me miserable.

    Like you, unexpected noises and movement were my worst triggers. It's interesting your mentioning your dog barking. For me, it was the neighbours' dogs. During a lengthy period of time, I referred to our neighbourhood as "Barking Dog Hell" (and I love dogs). My response started being strictly physiological -- the same immediate nervous/ill/threatened/pounding heart feeling one would get from someone jumping out in a dark alley and yelling "Boo". Pretty soon, almost everything started to sound like a barking dog, as if my brain was being rewired to perceive a threat from harmless sounds due to the frequency of the barking. So, after a period of time there was a psychological component to my automatic responses.

    Our household is very quiet, with just my husband and me. But, I came to hate having other people living around us in the city. We spent a few years looking for a rural acreage. At about the same time we realized we'd have to be filthy rich to afford a property large enough to get away from other peoples' noise, the offending neighbours moved, taking their howling hounds and Husky with them. In the meantime, my main solution was to increase the ambient sound level in our home which slightly masked the unwanted noise from outside. I played a lot of CD's with birds twittering over soothing music, especially through ear buds which acted like ear plugs. I even used them at night. The other thing I did was take a course designed for tinnitus sufferers offered by a psychologist. It was a form of CBT -- the type that actually does some good! Although it didn't reduce the automatic physiological reactions, it did help me to reduce the psychological component. Over time, my brain gradually settled down. So there's hope for you as well.

    Unexpected movement is still a problem, especially when I'm not pacing appropriately. It is particularly noticeable when a passenger in a vehicle, less so as the driver. At my worst (during periods of sleep restriction prescribed by two separate sleep specialists), I not only startled when nearby vehicles made the slightest move towards me, but stationary vehicles seemed to be backing out towards me while driving the lanes in parking lots. This, too, has improved with more rest.

    I don't recall all of the details, but I do know you have had an unusual number of disruptions in your living circumstances recently. No doubt that has affected how rested you are, and may have contributed to the startle response. I'm sorry I can't offer more helpful suggestions. But I do understand how desperate you feel.
     
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  5. Mary

    Mary Senior Member

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    Hi @Gingergrrl - You've probably seen this from Wikipedia:

    Obviously your problem doesn't seem to be genetic but I wondered if glycine would help you. I take it at night for sleep, it's quite calming. Can you tolerate various amino acids? I take 2000 mg before bed (in addition to a bunch of other stuff). The only caveat I would mention is that when I first took glycine 2 years ago or so, it caused a strong detox reaction for me and I had to go very slowly with it. It's used in phase II liver detoxification. But at that time a lot of things caused a detox reaction for me, which they no longer do, however, and I now take glycine with no problem.

    Magnesium is calming as well and if you're low in magnesium, it seems possible it could be part of your problem - hopefully your new neuro can advise you about whether or not to take magnesium.

    One other thing I've learned recently is that niacinamide is calming, it's supposed to stimulate GABA receptors, safer than klonopin (and lorazepam!) and have benzo-like properties. I was taking niacin, which was quite helpful for sleep when combined with l-theanine and GABA supplements, but when I started my lorazepam taper, the niacin just didn't cut it. It's a long story, anyways last night I tried niacinamide instead of niacin and I slept quite a bit better. Here are a few links on this:

    http://www.altmedrev.com/publications/7/6/525.pdf

    https://en.wikipedia.org/wiki/Picamilon


    This wiki article is about a manufactured combo of GABA and niacin - picamilon, which I know nothing about, but see references at the bottom of the article for research in this area

    http://orthomolecular.org/resources/omns/v10n09.shtml

    Can you tolerate niacinamide?

    I hope you get some answers! (you are going to know so much by the time you regain your health - we all are! :) too bad we have to learn everything the very hard way! :bang-head::sluggish::cat: (that's my cat, though she is black)
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @Old Bones and @Mary and will reply in more detail tomorrow.
     
  7. Skippa

    Skippa Anti-BS

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    Yes!

    I get this.

    If it happens in public, then I do a little wobbly jiggle and think everybody noticed!

    I also found that if it happens at night when I'm in bed, then my eyes get filled with bright white light that dissipates over a minute or two afterwards. (some kind of synethesia thing?)

    (Ps, opiates help get rid of this ;) )

    Eta, I noticed my mother had this all my life, she is terrified if a balloon come in the room, 'cos I guess she knows what happens if it pops.
     
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  8. Effi

    Effi Senior Member

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    @Gingergrrl I am very easily startled too ever since I got sick. I don't get that extreme response you're describing, but in my case it's like this: an unexpected noise occurs (any noise really), and a second or two afterwards my heart starts racing and I have to hold on to whatever I can or even sit or lay down and 'come to'. After a while (maybe a minute?) I'm ok again.
     
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  9. Daffodil

    Daffodil Senior Member

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    i have this. maybe it is related to inflammation in the CNS. i was embarassed quite at bit at my old workplace cuz of it.
     
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  10. Mrs Sowester

    Mrs Sowester Senior Member

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    Yes, I get this too. I even had to get my daughter change the ring tone on my phone because I was literally jumping and shaking whenever it rang!
     
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  11. Forbin

    Forbin Senior Member

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    There was a ring tone popular in the 1990's that always startled me and made my skin crawl. I get that effect even when I hear it in a movie (where it's usually heard in an office environment). I think it was one the earliest electronic rings.

    I was going to post a link to it on youtube, but I thought better of it...:)
     
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  12. lnester7

    lnester7 Seven

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    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.

    But there are teas like tilo, and tones of stuff just google how to tilt the nervous system and choose your method.
     
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  13. taniaaust1

    taniaaust1 Senior Member

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    Hi ginger,

    I had that like you described including that horrible after response. My elderly friend has enjoyed causing me to have the startle reflex at times as i startle so badly :( (my response to that has been to get very very angry at him as its so horrible to be startled and then be left feeling the after affects of this for hours just for anothers fun. I know he wouldnt do this if he understood how bad it feels (and then we've got into arguements after he's purposely caused that cause I was then left feeling all edgey).

    It leaves me feeling like Im then running on adrenaline for a couple of hours or so, like my body cant break down whatever is produced with the shock. It can leave me shaking.

    Startling me too bad can cause me to go into crying eg that's what happened when I was at the police station and the fire alarm suddenly went off. It wasnt just the loud noise but also this startle thing when it went off, the second time it went off it was like my nerves were completely shot as if once wasnt enough :(

    I dont know why but this symptom has improved quite a lot for me, I used to startle at the very slightest thing with the me eg someone walking into a room if I didnt know they were coming, or a slight sudden noise.

    and its not that Im nervous or anything before hand, I can be super calm but still used to be startled extremely easily. Something to do with the ME.

    Have you got bad hyper-reflexia too eg if dr does your leg reflexes do you nearly end up kicking him in the head? When my startle reflex has been at its worst I get severe hyper-reflexia on testing. In my case these seem related so something neurological causing this
     
    Last edited: Oct 2, 2016
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  14. taniaaust1

    taniaaust1 Senior Member

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    I still can startle with my phone. Umm I wonder if this is "one" of the reasons I hate my phone so much. I feel very unsettled when it starts to ring and there is no way I'd carry one of those vibrating phones on me
     
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  15. Dechi

    Dechi Senior Member

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    @Gingergrrl Yes, I get it too, and it can be embarrassing. In my case it is due to GAD (generalized anxiety disorder) which I had all my life but just discovered recently after being tested by a psycholegal expert (in helping me with my disability claim). The GAD was managed and under control until recently. Being sick and unable to work and having this financial burden and stress has seriously affected me. One of the common symptoms of anxiety is exaggerated startle response. It makes sense that being constantly tensed, any little noise or possible scare will generate a strong flee reflex.

    I am currently doing CBT, not for ME, we all know it doesn't work, but to manage my anxiety. I am just starting but it's promising. I am starting to realize how stressed and full of anxiety I am, pretty much 24/7. This is affecting my sleep and increasing my ME symptoms as well.

    Maybe it's worth doing a bit of research on anxiety. There are a lot of free tests to determine your anxiety levels and even if you have GAD. Of course you would need to seek professional advice to really find out but these tests can give you some clues.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    Thank you so much to everyone who replied and I combined everything that I wanted to respond to into one post. It is a relief to know that I am not the only one who experiences this in some form!

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

    You are right and we have had several disruptions to our living situation and multiple moves. But my very worst startle response was in the summer of 2015 when we were staying at my parent's house. Our current unit is the most peaceful and quiet of anywhere that we have lived but the responses are more frequent and the muscle part (muscles freezing, shaking, pain, etc) as part of the response is getting worse.

    I am not familiar with glycine and will definitely research it.

    As of yesterday I increased my Mg (Mag Malate) to 2x/day (AM and PM) and this is what I was taking prior to learning about my calcium channel autoantibody. Will definitely be asking my new Neuro about this later this week.

    I mentioned Klonipin b/c all of the research articles on SPS (Stiff Person Syndrome) mention it as a main treatment. It is also a mast cell stabilizer and something that I already have on hand but I prefer never to take it during the day b/c it makes me too tired.

    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.

    Thank you and my friends already joke that I sound as if I have been to medical school b/c I have done so much research on specific topics (even though I still feel like I know nothing)!

    My mom has also had this all her life so there must be a genetic component except that hers is much less severe than mine. She can recover quickly and does not have the muscle component that I now have.

    Daff, I have also wondered about CNS inflammation but not sure how you test for this?

    For some reason I am okay with the ring tone on my phone and it does not startle me. So now when my husband is about to open the front door, he calls or texts to let me know (and then I am prepared for my dog to start barking b/c she barks when the door opens). This has been very helpful.

    Please don't... LOL

    I am completely unable to do any form of deep breathing b/c of my pulmonary restriction. I am unable to inhale a full, deep breath even in the best scenario. Whenever doctors listen to my lungs with a stethoscope and ask me to take several deep breaths in a row, I end up gasping for air and with chest pain and it takes me several minutes to be able to speak again. I always attempt it so they can see what occurs and they comment on what low tidal volume and lung capacity I have. So sadly, for me, doing deep breathing on purpose is about the worst thing that I can do. When you said "tones" I assume you meant sympathetic and parasympathetic but I will have to Google this too b/c I always forget what the different tones mean or what you do for them.

    That is terrible and I am so sorry.

    Yes, it feels exactly as if I have been shot with Epi (adrenaline) and that my body cannot break it down. This is a very good description.

    Was going to ask you if you knew why but realized that you just said that you didn't!

    I have it in my right arm (that was injured by Levaquin) but I do not have it in my knees where the reflex seems to be normal.

    Sorry, I should clarify that when I said GAD65 I was talking about the autoantibody that correlates with the startle reflex and Stiff Person Syndrome (not with Generalized Anxiety Disorder). I know there are so many abbreviations that are the same but for different terms! I definitely do not have GAD but I do have the GAD65 antibody. My SSDI claim is based on my cardio-pulmonary, autonomic issues and overall physical functioning. Not that this illness does not give me plenty to be anxious about b/c it does but it is an aftermath vs. a cause. The startle reflex is so instant that it is not based on any thought. Even if someone came to my house and gave me very bad news, I could handle it and it would not trigger the response I get (which is instant) to hearing an unexpected noise.

    I was an LCSW/therapist for 16 yrs before getting ill and am pretty familiar with GAD and how debilitating it can be but I know it is not the cause of this particular issue for me. I actually wish it was b/c then I'd have some idea of grounding techniques, real CBT, and things that I could do to work on it. I think this one requires a medical intervention whether it is increasing magnesium or something else to reduce the hyperekplexia reaction. I want to get evaluated for SPS even though I am praying it is not developing b/c I don't want another autoimmune diagnosis on top of everything else!
     
    Last edited: Oct 2, 2016
  17. Gingergrrl

    Gingergrrl Senior Member

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    @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!
     
  18. Dechi

    Dechi Senior Member

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    @Gingergrrl thanks for clarifying. I just want to add that in my case, the instant reflex is not associated with any thought eiither. It happens a microsecond, not even, after the noise. I hope you find the cause and can alleviate it.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    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.
     
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  20. caledonia

    caledonia

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    I've had this too.

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

    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.

    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.
     
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