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lyme and startle response

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Posted 9/11/2016 9:47 PM (GMT 0)
Has anyone experienced a sharp increase in startle response/hypervigilance? I do have an anxiety disorder, but this feels different as there is no external reason for it to be happening, and it does not respond to care that would usually calm my system.

At this point, I'm a little bit at a loss how to approach this symptom, but I need to do something as the hypervigilance is taking over my life and affecting my ability to eat and sleep.

Has anyone experienced this and had any luck treating it? I have tried meditation, baths, body work, deep breathing, visualization, removing any stressors I can think of, etc etc. Nothing touches it. If anything, it just keeps increasing over time. I am reluctantly willing to try the benzo route, but I know lyme tends not to respond to psych meds so I'd ideally like to have some idea that it will help before I move on to the heavy hitters of benzos.

Thanks for any ideas or advice you can offer!

(For reference, I am currently being treated for lyme, babesia, and bartonella with herbs. I have previously been on antibiotics, but they were making me so sick that I had to discontinue.)
Posted 9/11/2016 10:28 PM (GMT 0)
I have been 'high strung' my entire life. At times it created some real problems for me. I pretty much maintained that I have PTSD.

I am still that way, jumpy...but I've had an increase in such a severe startle response that feels like I'm getting an electric jolt through my body. Barking dogs, yelling, gunfire and fireworks, most any loud noise if it's close enough. Even the telephone.

This level of it varies, depending on some other factors like if the vibrations are strong that day, or strong stress.

Something about this caught my eye just briefly while reading something else, so there may be a link, especially if you're already prone like I am.

I had researched this problem a few months ago and all I could find was that it was linked to lesions either on the brain or spinal. I'm hopeful that's not the only cause because the fix looked pretty drastic.


ETA: Maybe this isn't what you're talking about. You sound like you just mean on edge to an extreme degree. To that I would say yes I have that too. I find things to zone out on. I've got everything I need to try self relaxation, tapes made especially for me by a licensed Hypnotherapist...I just don't have the patience to do that.

Post Edited (julymorning) : 9/11/2016 4:32:57 PM (GMT-6)

Posted 9/11/2016 11:13 PM (GMT 0)
I startle very easily now. If my dog barks I jump. It's a clear change from how I used to be. I think it's nervous system related and may happen with things other than Lyme. I know someone who does not have lyme that is even worse than me. This person appears to have raynaud's (fingers get blue) and they are also a very heavy drinker - likely an alcoholic.
Posted 9/11/2016 11:26 PM (GMT 0)
I have an exaggerated startle response. It came out about three-four years ago. I have always been sensitive but the startle thing is bizarre. If the elevator opens up and someone is standing there I jump a foot. If someone comes up behind me it happens. I think for me it is PTSD from a childhood trauma that is coming out now. I am otherwise calm. I will tell you I have taken valium for it. I don't take it in the day time ever. But since I was diagnosed with fibro (when the startle began) I also was getting insomnia that I was told was age related peri-menopause. Anyway I tried Xanax and that didn't help then read an article by Andrew Weil who said something about valium helps the neurotransmitters in fibro patients. I don't even take pain meds for oral surgery or after a C-section. I am very anti drugs for my own body but low dose valium when I have insomnia/bad anxiety/startle - works.
Posted 9/11/2016 11:29 PM (GMT 0)
Nerves get shot ...a loud clap ..comercials do it ..if i see it coming ..and i have a bit of ptsd ...holy basil ,inositol ,treatment and lastly xanax ..i am not fit for regular society anymore ...last year a movie in the theater bout killed me ..girlfriend was making fun of me
Posted 9/11/2016 11:34 PM (GMT 0)
"I'm not fit for society anymore" LOL! That really made my day. Me neither Bluelyme. I'm turning into Howard Hughes with my odd quirks, startle reflex and how I hate the sound of all the rolling luggage on my heels - imagine crowded Manhattan with a startle reflex.
Posted 9/12/2016 12:49 AM (GMT 0)
That can also be linked to your adrenal function. Not sure if you've had that checked. If not, a 24-hour saliva test is best and testing at 4 different times during the day.

Post Edited (Krimpet 🍔) : 9/11/2016 6:58:29 PM (GMT-6)

Posted 9/12/2016 12:55 AM (GMT 0)
Krimpet,

Yes mine is a combination of adrenal/cortisol (had very high stress at very young age) and my grown up body is paying the price. Add to that the anxiety that was turned on with lyme. Have had the saliva test many times. Am actually doing it again post lyme. Curious what all my numbers will be. Want to stay positive and not feel like we are deteriorating! Thanks Krimpet.
Posted 9/12/2016 3:08 AM (GMT 0)
Mine is being an older woman.

We startle easily as we age - I have no idea why but ask your grandma.... it is just a fact of life.

Better yet, ask any grandpa. Most have been trained not to quietly come into a room, grandma will scream.
Posted 9/12/2016 3:09 AM (GMT 0)

Huddie said...
Krimpet,

Yes mine is a combination of adrenal/cortisol (had very high stress at very young age) and my grown up body is paying the price. Add to that the anxiety that was turned on with lyme. Have had the saliva test many times. Am actually doing it again post lyme. Curious what all my numbers will be. Want to stay positive and not feel like we are deteriorating! Thanks Krimpet.

Me too Huddie. My very high stress goes all the way back as far as I have memory, 5 years old I know for sure, and no doubt things I don't remember going back to infancy that I was clued in as an adult.

I was so jumpy the kids in elementary school went out of their ways to startle me, just to see my reaction. Sometimes I threw up. As soon as I knew what post traumatic stress disorder meant, I knew I'd had it all my life, but never until this group here, knew that it was related to affecting anything but my nerves.

First glance, I don't look like the nervous, jumpy type.
Posted 9/12/2016 3:11 AM (GMT 0)
Mine comes and goes - started when I got lyme disease. Never had it before.
Posted 9/12/2016 12:30 PM (GMT 0)
July,

Hugs to you. I'm so sorry and yes I can relate. You would never, ever know it to look at me either. I have done lots of work on myself. I will offer that meditation tapes, reading, and limiting screen (and stress) help a lot. It can get better. I am fascinated the way the body holds onto a memory - the body doesnt' lie.

Girlie, you are lucky that it's recent. Mine hasn't gotten worse since lyme (yet).

Feel good.
Posted 9/12/2016 1:08 PM (GMT 0)
As you can see, it's not uncommon, and there is documentation of it being connected to Lyme:
www.ncbi.nlm.nih.gov/pmc/articles/PMC3667138/

I too used to have an exaggerated startle response - if I was startled, it would cause massive pain - just for a few seconds, but it was still quite painful.
Posted 9/12/2016 2:08 PM (GMT 0)
Trav,

Thanks for the link. Fascinating! How did you remedy your startle reflex?

I think some people are more predisposed to it. PTSD/Trauma, etc... Perhaps lyme makes it worse.
Posted 9/12/2016 2:25 PM (GMT 0)
Thanks for all the replies and info. I really appreciate it. And I'm sorry so many of you are struggling with a similar problem!

I have been tested for adrenal function but not for about 6 months. I know mine is shot but hadn't been thinking of it in relation to startle--so thanks for connecting that for me.

I think there may also be some ptsd and lyme mixing as many have suggested. I think my challenge right now is that I startle so often and so intensely (from, as others have said, pretty much any sudden noise regardless of volume, any sudden or unexpected movement, basically, everyday life...) that my system cannot calm down between being activated which puts me into the state of super heightened alert aka hypervigilance. And living at such a high level of alert is exhausting energy that i definitely don't have along with other things.

Thanks for the link to the paper; my background is in the sciences so i find research papers on lyme informative and fascinating.
Posted 9/12/2016 2:32 PM (GMT 0)
Arlb,

One thing that helps me is knowing what startles me. For me it also sends adrenaline and then keeps me awake. Our drive home every weekend does it for me. Lots of traffic and moving in and out between the cars (NYC) startles me. I know put on a meditation tape while my husband drives. It has removed my startle reflex. I sort of know what mine are and work around them.

Soon Trav will weigh in and tell us how she cured hers and hopefully we can follow suit. What would we do without Trav :)
Posted 9/12/2016 2:42 PM (GMT 0)
Ha ha ha, Huddie, no secrets to it, it was just staying in treatment - and of course, lots and lots of detoxing. For me, it was not directly connected to my adrenals, but the overall impact on my nervous system.

There's no doubt about the PTSD effect for me, although I wasn't really experiencing much of that at the time, I was in too much of a brain fog and had lost too much of my memory by that time. It wasn't until after I was mostly healed that the PTSD started hitting me hard, maybe because of my memory not being accessible during most of that???

Anyway, it does calm down. I can still be really startled, but not by small things any more usually, even though I am reinfected - but my nervous system isn't nearly as badly impacted this time around either. But if, say, a car backfires right beside me, the startle reflex is more pronounced that it is for most people that don't deal with these infections.
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