shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I know I'm sound sensitive (and have a minor hearing loss, so at least I'm sensitive to less!). But today at work we ran a fire drill, and my reaction was worse than any I'd had up 'til now.
The alarm was an intermittent blast, equally loud throughout the building since I was never far away from an alarm box as I walked through the building. There was also a flashing light, but since it was daylight, it wasn't overwhelmingly bright and I didn't think it affected me.
I had my hearing aids in, but they are programmable and automatically shut off when the noise is too loud. But by the time I got out of the building, my left forearm was slightly numb by the last 2 fingers (like when you hit the funnybone), and I had a distinct electric sensation in my lower left leg. I already have peripheral neuropathy -- this was temporary, and worse.
I also was so upset that I was nearly in tears. Now, I don't get rattled easily, and certainly not over a loud noise, though it irritates me. (I do seem to startle more easily of late, though.) My reaction was much more visceral. I did not hyperventilate. I was reminded of the woman I saw at this past ILADS conference, who seemed to have a seizure when the fire alarm went off there.
Anyone else have anything like this, or have an explanation? It scared me enough to tell a co-worker to be sure I got out if there ever was a real fire. And I kind of want to try it again and see if I can block the response, but I certainly don't want to try it and have a worse episode.
Thanks, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
I'm so sorry to hear this....
can you super dose with magnesium.
Also, if you have adrenal herbs like ashwagandha, Siberian Ginseng - those would be good. I think Rhodiola might be a bit too stimulating right now . . .
do you have ARNICA homeopathic. That can help heal the nerves a bit. Your ear nerves and your adrenals really took a hit.
you MUST rest your ears. No sounds - other than soft music from a speaker across the room - no ear phone or headphones.
It would be best to rest as much as possible all weekend. I have not followed this advice before and I should have. Especially, though, no loud concerts, etc.
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I pass on what I've been told over the years that helps - i've gone through this a lot. the fire alarms are the worst. That would have literally killed me. I fly to the moon at the slightest sounds.
Fish oil and B vitamins may help, too.
a medical mushroom, lion's mane, too. Some studies show it to help repair nerves in M.S. patients.
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Don't' try to work up to taking more sound. If your ears - or any neuro/adrenal system is damaged, protection is key. Also, lyme can attack the coating around the nerves, the myl. Sheath.
This is not a muscle you get stronger, sensitive nerves need support.
In the future, you should be alerted and leave the area before any more alarms.
Oh, antibiotics can make ears more susceptible to damage from sound - at lower decibel levels than usual.
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I'll come back after I rest a bit and may add a thing or two.
there is nothing specific to acute trauma here, but you might see what VEDA has to say.
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Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links
posted
The beep noise when the checker at the grocery store drags the food items over the scanner makes me clench my teeth.
I hear that beep all the way to the bone!
Posts: 641 | From So. CA | Registered: May 2008
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Feeling your pain Shaz. Same here, has never abated. Loud sounds actually hurt. Guts clench, nerves jangle. Thoughts jumble incoherently. Cannot think at all. I require a quiet environment. And single input. Sorry you had to go through that.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I've been asked not to return to my neighborhood grocery for passing out (from seizure) at the check out - even with ear plugs AND ear muffs. The sound does travel.
So, when Peedie says "I hear that beep all the way to the bone!" - EXACTLY - that is why hearing damage can happen even with earplugs or ear muffs.
I swear I've thought of pinching my nostrils closed as I must hear through my ears. The thing to remember is that sound travels thorough our skin, deep into our bone and, even from the toes and fingers, travels to the ears.
And, true, lyme and other TBD with the neuro effects can be very severe with reactions. So, it's not always just the ears, but the NMDA receptors that are overly excited from toxins.
Adrenal failure, too, can result in severe sensory dysfunction. In fact, some adrenal patients are put in darkened rooms and instructed to have very few visitors . . . even whispering is too much excitement for the brain to process for someone in adrenal failure.
We have much more to learn about all this.
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For anyone who is severe with hyperacusis, you might take a look at - SCD - www.scdssupport.org
A recent CT scan indicates that part of my problem may be some holes in ear canals - or very thin tissue where bone should be.
Main keys to determing that are if a person's own voice is very loud from inside their skull . . . if sounds of body functions (heartbeat, circulation) are over the tops . . . and if eyes jump from sound. Special tests, particular manner of those if done.
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Thanks, Keebler, for coming back so fast. It gave me enough time to get to the store and pick up some extra Magnesium (I already had a good multi, C, and a basic Cal+Mag), as well as L-Lysine and my favorite Yogi tea with St. John's wort, which seems to help when I am anxious.
I can't do the ginseng, as it seems to give me migraines, like caffeine. I will look into ashwagandha tomorrow. Arnica? I thought it was more for physical trauma, like sore muscles/bruising....
I mentioned the episode to my boss, who knows I have Lyme, and she suggested I sit out the next time they have a fire drill, so I guess I will take her up on that. I will do what I can to take it easy this weekend.
Yeah you guys, the beeper at the grocery checkout can be the pits!
Thanks for the links, Keebs. I also read a few things about simple partial seizure that might fit. As of now, I am good, no lingering effects.
Thanks very much for the help,
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Shaz . . . and others of the "save our ears brigrade":
you can ask them at the grocery to turn down the beeps.
The problems with that are that to do that they first have to INCREASE the volume, some clerks don't know how, and if you have beeps behind and in front as well, you can't really ask everyone to do that.
Whole Foods has done that for me, though. Others sometimes refuse to turn down even one. But the overhead "music" or announcement make most stores off limits. You can try calling ahead and ask for more gentle music, but good luck.
Trader Joe's will stop the ringing of their maritime bells if I call in advance (but some of the clerks will then shout out sharply).
Trader Joe's now will gather all my food and keep it in the freezer so I can send in someone to collect it. I got tired of spending so much time on their floor and they are happy to do this for me.
Different stores will react differently, of course.
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St. John's wort - yes, I forgot that can help with nerve stuff. There is also a homeopathic St. Johns wort - starts with an "h" -
Arnica - is for physical trauma - but that is what your ears, nerves etc. experienced.
Physical force from the vibration. Vibration can be deceptive. Just because we don't see it, we forget that it can shatter glass. Well, that can't be so good for us, then, either.
Usually arnica is more for right afterward and it helps my brain not swell after a seizure . . . still, I thought your ear nerves may still be "smarting" and it might help for a while afterward. Arnica is also very helpful for the adrenals after a startle.
Ginseng - I agree. Can be excitatory. Siberian Ginseng is not a true ginseng and does not usually stimulate. Still, some people don't do as well as others with it and ashwagandha seems the best tolerated. Cordyceps is also good.
I'm glad you could get more magnesium. I do hope you can rest. You might be find from this, but I do hope you can really nurture yourself this weekend. It sounds too babying, but your ear nerves did go through a lot. If healing is to happen, the sooner the better.
And, hey, if you get a head's up before the next fire drill, get far, far away before anyone pulls that lever.
As for the seizure connection, there are some types that are triggered by sounds. Since you mentioned that, I'll toss in some stuff about that.
Myoclonic seizures can be triggered by sudden sounds or flashes - anything that startles. Myoclonic describes the type, though, not so much where it may come from in the brain. Tonic can also be mixed in.
While many seizures can have to do with weak or stressed brain tissue, etc. - if any person is given enough toxins, they could have a seizure. That is part of the connection with lyme and seizures. And many who have that, it seems to go with the hyperacusis (and get better after successful lyme treatment).
Many things could be at play with that, toxins alone have many effect on nerve tissue and heart function . . . or by the result of raising the NMDA from that toxin, a seizure could occur without any particular problem with the brain.
And . . . my neurotologist has seen others with sound induced seizures. His take is that the pain in the ears is so severe that it just short circuits the brain. Sometimes, that is what seems to happen - the knife sensation through the ears just paralyzes the body, but also sparks the brain to act like a rocket.
Ear-Induced Torture: Maddening Noise, Everywhere Adrian McLeish's Rare Condition Led to Amplified Sounds Produced From Eye Movement, Chewing and More
By ALEXA DANNER March 12, 2008
Article at link above.
Below is the 9-minute companion video (safe). This is what I hear for the most part. He does not have seizures, but we've emailed back and forth. He did used to nearly jump to the moon from certain sounds.
Some EEGs do not capture seizure activity. QEEGs are more sensitive, but that's another whole book. I'm toast.
I will say, though, that if the brain waves are slow (sleepy), when the excited brain waves are trying really hard to wake up, they can burst through and that is when sparks fly. A QEEG shows more of the slow brain waves as seen with lyme and CFS.
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Hope your weekend goes well. You better rest those ears. July 4th is coming! Oy, Vey!
at the bottom of this page, you can see a video of Dr. Perlmutter on an "Oprah" program.
David Perlmutter, MD, FACN is a Board-Certified Neurologist and Fellow of the American College of Nutrition . . . Dr. Perlmutter was awarded the 2002 Linus Pauling Award for his pioneering work in innovative approaches to neurological disorders. . . .
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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This is the lion's mane mushroom to which I earlier referred. I had seen Dr. Weil discuss this on a Larry King program years ago as it being hopeful for MS patients and the myl. sheath.
I used it a while years ago and was very impressed. Not cheap but if I had just had some nerve injury, I might consider looking into it.
The influence of Hericium erinaceus extract on myelination process in vitro.
A.A. Bogomoletz Institute of Physiology, National Academy of Sciences, Kiev.
Excerpt:
Thus, extract of H. erinaceus promoted normal development of cultivated cerebellar cells and demonstrated a regulatory effect on the process of myelin genesis process in vitro.
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Myelin sheaths, wrapping axons, perform the following important functions: support, protection, feeding and isolation. Injury of myelin compact structure leads to an impairment and severe illness of the nerve system.
Exact mechanisms underlying the myelination process and myelin sheaths damage have not established yet.
Therefore search for substances, which provide regulatory and protective effects on the normal myelination as well as stimulating action on the remyelination after myelin damage, is of special interest.
Recently it was shown that extract from mushroom Hericium erinaceus had activating action on the nerve tissue. So the aim of the present work was to study an influence of an extract from H. erinaceus on the cerebellar cells and the process of myelination in vitro.
Obtained data revealed the normal growth of the nerve and glial cells with extract at cultivating. No pathologic or toxic action of the extract has been found. The cell ultrastructure was intact and similar to that observed in vivo.
The process of myelination in the presence of the extract began earlier as compared to controls and was characterised by a higher rate.
Thus, extract of H. erinaceus promoted normal development of cultivated cerebellar cells and demonstrated a regulatory effect on the process of myelin genesis process in vitro.
posted
[QUOTE]Originally posted by Keebler: [ you can ask them at the grocery to turn down the beeps.
The problems with that are that to do that they first have to INCREASE the volume, some clerks don't know how, and if you have beeps behind and in front as well, you can't really ask everyone to do that.
fire alarm HORNS:
this was done within 3' of me at work before i left there 10 years ago!!! took me forever to recovered!
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grocery checkouts;
yes, i ask them to turn it down; it's 3 clicks DOWN!
i also told the MGR. OF GROCERY STORE about it! NO PROBLEM; just tell them; they WILL do it.
if they would have it on MID tone vs. LOUDEST; it would not grate on our nerves as much!
also, go to tinup's post 1st page on PHA ARTICLE --- COGNITIVE TESTINGS; i copied it all here. print it OFF; you will learn alot about yourself especially the SOUND problems!
good luck; i suffer with you!
hubby is deaf in 1 ear; wears hearing aid on other and CAN'T HEAR WELL ... so tv keeps getting louder! we have his/her VOLUME CONTROLS!
when i'm back here working on pc; i just close the door ... i hate yelling at him for his tv shows overpowering radio right besides me!
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