posted
It seems ever since I got these tick borne diseases, I have had a hyper active startle reflex.
Sometimes a sudden noise makes me jump out of my skin.
Does that happen to anyone else here. Maybe just a coincidence that this startle reflex seemed to get hyper since I got LD, but I don't really trust coincidences.
So I thought I would ask.
Posts: 213 | From ohio | Registered: Jul 2006
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lpkayak
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posted
yes-it is listed as a sx
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Ditto that, and Jaw jitters too at times same cause? Low mag + TBD? Regarding the former, people with PTSD also have hypervigilence, they do well on SSRI's and counselling. So problem may be low magnesium and low brain serotonin too. Just a thought.
Keepin the wheels turnin,
Beachinit.
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feelfit
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posted
Yup me too. My hair raises at the slightest unexpected sound....goosebumps on my arms, the whole 9 yards.
Beachinit has it right in that it is hypervigilence.....
I think it has to do with a nervous system gone haywire....Do you also have an exaggerated reflex response in your knees? I think that I could kick a 40 yard field goal with my knee reflex....
Think that it is all connected and def. related to our illness.
feelfit
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map1131
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Without question and I get very angry when startled too. Overly angry.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I was never sensitive to noise, and now I don't like loud music and am easily startled. I have trouble watching scary movies as well, and I loved them prior to being ill.
Some people assume I walk away because I don't like the movie. They don't quite get it.
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sutherngrl
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posted
Same here! Very easily startled.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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canefan17
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posted
I fixed this by supporting adrenals.
My roommate used to walk in my room and I would always JUMP and start breathing heavy.
He scared the crap out of me and never understood why (I didn't know why either).
Once I built my adrenals back up this symptoms definitely disappeared. I became more alert to stressors, etc.
posted
Yes! People at work think I'm nuts! I jump and squeak constantly - it's embarassing! But kind of funny, too....
At the bank drive through, when the teller greets me, I about jump out of the car - they have the volume turned way up. The poor tellers are always apologizing for scaring me!
:)
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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posted
Yes for me too. Noises, people (who seem to appear out of nowhere). Sometimes with a spike of adrenaline, sometimes not.
I can even startle at one of my own twitches.
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momintexas
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Yes!! We both get that. It makes me laugh when it happens but it makes my son furious. It happens daily.
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sutherngrl
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Canefan, thanks for the chart. Adrenal fatigue is a perfect fit for me. Very interesting.
Most LLMDs do not work on the adrenals. They just expect this to improve once the lyme is gone.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I was also going to say adrenal fatigue. Lyme can certainly cause adrenal fatigue!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
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- First: LYME, itself is a frequent cause. Infection must be adequately treated Other TBD (tick-borne infections) can also contribute to this.
HEAVY METALS are a huge contributor to startle reactions (and myoclonic seizures). Heavy Metal toxicity is very common with lyme, too.
And, definitely, ADRENAL fatigue can is connected.
This can also be a kind of MYOCLONIC SEIZURE, common with lyme and other TBD patients. This has been one of my most severe symptoms, with on-going hyperacusis, too (hope you do not have that).
In addiiton, the LIVER toxicity cause the NMDA neuro receptors to go sky high and then the neuroexcitability from neurotoxicity causes the startle reaction. If you give anyone enough toxins, they can have a seizure. Toxins and seizures go hand in hand . . . and that comes back to excellent LIVER support and protection.
Beyond that, the INNER & MIDDLE EAR (the vestibular system) can play a huge part (either from toxicity, inflammation or tissue/structural damage - with lyme all of these are frequent for the ears).
In addition to excellent LIVER and ADRENAL support, avoiding all artificial additives, dyes . . . being sure your blood sugar is maintained at a good level . . . Low Blood sugar will lower the seizure threshold.
A GLUTEN-FREE diet is vital for many reasons. Gluten can cause seizures. Lyme patients are especially prone to gluten problems, etc.
MAGNESIUM, GOTU KOLA, CORYDALIS and CURCUMIN are each excellent choices to address this. FISH OIL, too.
Some use small doses of Klonipin (or other anti-seizure drugs) but that can increase the levels of porphyrins and that, can stress the liver and cause even worse trouble for some with liver detox issues such a porphyria. Some people seem to do okay with anti-seizure drugs but they don't work for everyone and when possible, addressing the cause will often help.
Each person is different, though, so be safe for what is going on for yourself.
I'll be back later with links I've collected over the years regarding startle reflex and myoclonus and how those on that list have helped. In the meantime, a cross search at PubMed and Google will bring up some abstracts, especially with: Gotu Kola, startle.
Also cross search with the term, kindling. -
[ 02-13-2010, 02:01 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Ingesting even a trace of Aspartame (also called Nutrasweet or Equal) or MSG (Google for all the names)?
Even a trace? check even your cough drops, toothpaste, etc. Aspartame can trigger myoclonic seizures, big time and also cause hyperacusis. Aspartame is very neurotoxic.
==================
B-12 shots have helped me tremendously. A special kind is mentioned here:
GOTU KOLA -- An Under-Appreciated Herb: Multifaceted Benefits on Microcirculation for Cardiovascular and Cognitive Health
by Linda Fugate, PhD
Excerpts:
. . . Gotu Kola's primary action is enhancement of the health of the circulatory system. Because circulation is critical to the health of the entire body, Gotu Kola offers benefits in a variety of conditions. . . .
The antioxidant and collagen supportive functions of Gotu Kola are particularly important in enhancing healing of damaged tissues. . . .
- Full article - and citations - at link above.
=========================
From: The One Earth Herbal Sourcebook (Tillotson, et.al.):
Gotu Kola is bitter and astringent in taste and cooling in action. It is a brain and memory tonic, and an anti-poison, and very useful for wound and skin healing. . . .
. . . Research Highlights . . .
* The Indian Central Council for Research on Ayurveda and Siddha, citing more than ten pharmacological and animal studies of gotu kola, also found evidence of the following characteristics:
CNS depressant [calming without causing drowiness], memory enhancer, anti-convulsant, antispasmodic, behavior and intelligence enhancer, and blood sugar regulator (Pandley et al., eds, 1996). . . .
Very helpful info.
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IckyTicky
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posted
Oh goodness yes! Mine got a LOT better after about a year of tx. But before, if someone just dropped a hairbrush in another room of the house I'd nearly jump out of my skin. It was one of the more horrid symptoms I had..I was always afraid I'd have a heart attack over something stupid like the neighbors shutting their car doors or something!
Do you also have hyperreflexia? I do.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Keebler
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posted
- Lyme, other infections, magnesium deficiency can be the underlying cause of lots of "movement" disorders.
Some of the kinds of porphyria can also be connected but, for lyme patients, it's often more of a secondary porphyria from the liver toxicity.
If excess porphyrins are involved, Beta Carotene (especially as in a good greens powder like Green Vibrance) is of great help.
Magnesium is the number one supplement that often helps. Fish oil follows. Lyme is not mentioned in the enclycopedia entries below but lyme research frequently describes such involvement for lyme patients.
You can find the terms below in research from ILADS authors fro other places.
Below are just the Wiki basic descriptions which, of course, fail to even recognize that lyme can also be a frequent cause:
Hyperreflexia is defined as overactive or overresponsive reflexes. Examples of this can include twitching or spastic tendencies, which are indicative of upper motor neuron disease as well as the lessening or loss of control ordinarily exerted by higher brain centers of lower neural pathways (disinhibition).
Myoclonus (pronounced /maɪˈɒklənəs/) is brief, involuntary twitching of a muscle or a group of muscles.
. . . Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute.
Most often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, Subacute sclerosing panencephalitis and Creutzfeldt-Jakob disease (CJD) and some forms of epilepsy.
Some researchers indicate that jerks persistently may even cause early tremors.
. . .
Types [many listed, just those most relevant to lyme are listed]
* Progressive myoclonus epilepsy (PME) is a group of diseases characterized by myoclonus, epileptic seizures, and other serious symptoms such as trouble walking or speaking.
* Stimulus-sensitive myoclonus [Myoclonic seizures] - triggered by a variety of external events, including noise, movement, and light.
Surprise may increase the sensitivity of the patient.
* * Sleep myoclonus occurs during the initial phases of sleep, especially at the moment of dropping off to sleep. Some forms appear to be stimulus-sensitive.
Some persons with sleep myoclonus are rarely troubled by, or need treatment for, the condition. However, myoclonus may be a symptom in more complex and disturbing sleep disorders, such as restless legs syndrome, and may require treatment by a doctor.
. . . .
- Full entries at links above.
=====================
From what I've read, and my own experiences, myoclonic seizures (for me always triggered by a startle, even if soft in tone - or excessive heat or cold) . . . well, myoclonic seizures can also blend with other types, such as for a tonic/clonic mix.
Again, magnesium is the number one helper. Gotu Kola, too. And, of course addressing the infections and toxicity. A gluten-free diet is essential to my success, too. If, unknowingly, I get even a trace of gluten, within 3 days, my seizure triggers spark off if someone coughs in the next state.
As it took a while to get to the bottom of a few foods I may have eaten out at friends (who will never remember exactly what they put in a meal) I had the opportunity to observe this probably 4-5 times before I just said "no" - when seizures hit within a few days of my having eaten others' cooking, I'd put on my detective hat and was amazed - so often that 3-rd day after was a day my brain tried to send my body flying.
So, while lyme can certainly the THE main underlying cause - so many other things can be contributing factors.
Not to alarm anyone, but mine stuff all started out as mere startles where I'd jerk once and fell ill for a while. It got much worse. But, I was never able to really address the infection and when decades before even a proper diagnosis.
So, don't ignore movement disorders of any kind. Be sure your LLMD is fully aware. And, please, do consider magnesium deficiency first. So many of the heavy medications can be toxic themselves. While some may still require those but, often, methods in posts above will work to curtail some of this.
For myself, I found that ANDROGRAPHIS works the best of all, in addition to the basic minerals magnesium, calcium, zinc - and then fish oil. Gotu Kola is also still on my team, as is Green Vibrance (for beta carotene to manage porphryins). This combination has helped me a lot.
. . . Andrographis combined with eleutherococcus, licorice, and schisandra has shown promise for a genetic disease called familial Mediterranean fever. 24, 25 . . . .
Excerpt: . . . Research has proven that andrographis is effective in inhibiting and killing the bacteria primarily responsible for periodontal disease . . .
It's best to read ALL about it before starting. Buhner's book has the best detail I've seen. He mentions an andrographis gel used for dental purposes in Europe but I cannot find that here. I just chew a tablet and let it roll around my mouth with a little bit of coconut oil. It is very bitter, but I don't mind as it works.
And the instructions for starting slowly should be followed.
In addition to calming sensory startles and seizures, andrographis has been a miracle for my sore, raw, burning mouth that was full of aphthous ulcers for four years.
Within one week, andrographis stopped the burning and the brought the ulcers under control.
Andrographis may upset the stomach at first and will definitely increase fatigue for the first few weeks (which is understandable due to it's effectiveness). It helps tremendously with sleep and it calms down some of that excitatory brain stuff very nicely.
It also helped decrease swelling of my ankles (and increased the need to get rid of all that water so stay close to a bathroom).
This is a bitter herb, best used in combination and under the guidance of LL doctor, whether LLMD or LL ND (naturapahtic doctor). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I have this problem, too, and, like another poster, I find that I get very annoyed with the person who was responsible for the surprise noise.
Posts: 45 | From Northeast | Registered: May 2001
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Keebler
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posted
- I've found that many usually feel just awful. I try to tell them that it could have been someone sneezing in Idaho - make them laugh.
Worse than the physical and psychological damage from a seizure is the look on the face of the person who triggered it just by stirring their coffee or dropping a rubber band on the carpet (oh, yes, I can even feel that pressure in my ears).
I've practiced lines to use so that people feel more at ease around me. It's very hard on them, too, to cause someone pain. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Starfall1969
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posted
Lol, I've been having some issues with this lately.
Just yesterday I had an incident that, honestly, I'm still laughing about.
My son got a 2-foot tall T-Rex for his birthday, one of those realistic looking ones, and it was sitting in our bedroom.
I came in, saw it, it registered that it was there, but the very next second, I about jumped out of my skin.
It took a few minutes to calm down, and then I could hardly look at the stupid thing the rest of the evenning.
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Keebler
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posted
- Starfall, yeah, that registering on two levels, one with a recognition and then, that "delay switch" that kicks in. It's mostly the chemical reaction that does me in for hours later. Like I've been shot full of drugs - adrenal stuff for sure.
I did the same thing many years ago when visiting my parents. I'd arrived home late at night and my father did show off his new life-size bust of an famous Native Indian Chief (Joseph, I think).
When I came downstairs a bit later, as the Chief caught my eye I hit the ceiling as if I'd never even seen it before. From my angle, it did appear as though he was actually sitting in a chair, though.
I've notice that it's not just the surprise factor but also the stark contrast between light and dark - or a sudden shift - a dramatic outline - that will do that to me, too. Even if I see something ahead, as the light suddenly changes in my eye, my brain just shoots to the moon. Truly a puzzling thing with light and dark.
==================
Sleep and adrenal function were mentioned above regarding importance. More:
canefan17
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posted
Starfall,
LOL That's hilarious. I was brushing my teeth one night and my roommate passed by... and i caught his shadow in my bathroom mirror... scared the dog**** out of me lol
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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map1131
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posted
star, too funny. T-rex needs to find another bedroom. I bet it's not in your sons room because of the night time fear factor?
Did you get mad at T-rex and kick him around?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Yeah this is what makes it hard for me to be out at night. I'm usually exhausted by that point, not to mention if we go out to eat which is rare due to food restraints, I will get thrown gull on into derealization and depersonaliztion because I am being perpetually startled by other voices near me, lots of people moving around, strange night time lighting and shadows shifting.
Like my mind can't focus. Totally an adrenal issue.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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posted
I scare so easily that it's a joke at work. Co-workers think it's funny so they try to scare me. Unfortunately after I get scared my heart goes tachy and doesn't stop for hours.
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Keebler
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posted
- That startle stuff some people do is actually abusive. It can cause serious health problems if people joke around with it.
If they are just laughing with you, that's one thing but I sure hope no one is causing you to startle on purpose.
It's best not to call it a "scare" as others will think it's an emotional thing. A "startle" sounds more technical. And, some people have died from startles so if I sound too serious, that is why. It's not a joke. It's a serious medical condition that has serious consequences.
I don't mean to scare you (hee-hee) but had my startles gotten proper medical treatment when they started I may not have developed seizures, etc. A lot of damage to all body systems for startles of any degree. It takes a toll.
Finding the exact cause can be very difficult. If a startle makes you feel ill, as if you've been injected with a poison, that is not a good sign. WIsh I had known that decades ago.
Again, to turn toward some light, magnesium and Hawthorn have been two great supplements for me. Andrographis, too.
And then back to Adrenal support. But, detailed medical examinations and tests are certainly in order for anyone with a startle reflex out of the ordinary. As well, lyme can be one single cause - or it may also be a co-factor bringing to the forefront an underlying condition. -
[ 02-15-2010, 08:50 PM: Message edited by: Keebler ]
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Keebler
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posted
- Important to know: many drugs can alter the Q-T rhythm. Read all the Rx details. Artemisinin can be one. I could not take it for that reason - it seriously lowered my seizure threshold (and it's also not great for someone with porphyria, either).
A mother who believes her daughter died of a rare heart condition after being startled by her alarm clock is calling for a fresh inquest into her death. . . .
Google books - find p. 127 - this may bring you up on a grey page. Clink ahead and then back again and page 127 should be this:
STARTLING MUTATIONS AND POISONS - HYPEREKPLEXIA
Neuroscience: Exploring the Brain - By Mark F. Bear, Barry W. Connors, Michael A . Paradiso
Published 2006 Lippincott Williams & Wilkins $82.00 textbook (includes CD-Rom, etc.)
At most University Libraries and in the King County Library System Issaquah, WA 98027 United States
p. 217 Box 5.6 OF SPECIAL INTEREST
STARTLING MUTATIONS AND POISONS
HYPEREKPLEXIA
Molecular basis for two general types of startle diseases.
Both involve defects of inhibitory Glycine Receptors. . . . - results in a chloride channel that opens less frequently when exposed to the neurotransmitter glycine.
. . . an impairment of glycine function yields exaggerated startles; reduced GABA function can lead to the seizure of epilepsy. . . . Drugs that inhance inhibition can be very helpful.
The genetic mutations of the glycine system resemble strychnine poisoning, a powerful plant toxin. . . . Strychnine has a simple mechanism of action: It is an antagonist of glycine at its receptor.
Mild strychnine poisoning enhances startle and other reflexes, and resembles hyperekplexia. High doses nearly eliminate glycine-mediated inhibitin in circuits of the spinal cord and brain stem.
This leads to unchecked muscular contractions, spasm and paralysis of the respiratory muscles, and . . . .
. . . because glycine
also see:
Disorders of GABA, Glycine, Serine, and Proline Book Physician's Guide to the Treatment and Follow-Up of Metabolic Diseases
Publisher Springer Berlin Heidelberg
=============
Below says "The cause of hyperekplexia is genetic" - well, I'm not so sure. The above piece connects toxins to it. Hmmm.
Hyperexplexia, also called "Hyperekplexia," is a neurological disorder characterized by an exaggerated startle response in situations of distress.
. . .
The cause of hyperekplexia is genetic. A mutation in the fifth chromosome (5q33.2-5q33.3) in the alpha-1 subunit of the glycine receptor is the most predominant cause of this neurological malfunction.
Mutations have also been discovered in the beta subunit gene (GLRB) (4q31) such as the point mutation G229D and within the glycine transporter 2 gene (GlyT2) (11p15)
Treatment of drop attacks in Coffin-Lowry syndrome with the use of sodium oxybate.
We report on a 22-year-old man with Coffin-Lowry syndrome with stimulus-induced drop episodes, who failed therapy with clonazepam, several antiepileptic drugs, and escitalopram, and who was given a trial of sodium oxybate with complete resolution of the drop attacks.
GABA and glycine are arguably the most important inhibitory neurotransmitters in the brain and brainstem/spinal cord, respectively. ...
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