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stjenkins

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Reply with quote  #1 
Hello.
If we could all somehow meet, I wonder what we wouldn't talk about. At some windless venue far from the shore and the traffic and the goshdarn birds...

I'm... 23 now I guess. I developed hyperacusis over a period of about 12 hours more than 2 years ago. It's always been accompanied with headaches and tooth pain, multi-tonal tinnitus, and the sensation of warm cotton balls being pressed deep into my ears.

When it began, it was such a pure, focused, intermittent sensation, it was almost as if the cars 10 floors down were rushing towards my face, but then normal, or a sudden, crushing silence. It was very surreal. It developed in conjunction with a case of scabies that I received -- which is understandable, due to the stress caused. The only reason I've been able to react to hyperacusis in such a calm manner is because I went through hyperacusis+scabies. This backfires, I think, because in my opinion not a single person I've ever spoken to about my condition seems to get it. 

The scabies subsided after 6 months, but the intermittent events (I guess they're called setbacks here?) gradually turned into intermittent days, then on-or-off weeks, and now I've 'plateaued' I suppose at constant uncomfortability in any setting (quiet, rain noises, outside, inside), acute pain at conversational levels, and it only gets worse from there. I wake up in the morning with the combined 'soreness' of previous days already nestled in my ears, and on certain nights just need to intoxicate myself into simply not caring about the rocket-powered howler monkeys blazing through my brain. 

I had usually been able to hear my heart quite clearly (particularly at night), but now I'm also able to feel, tangibly, my ear canal wavering with my pulse, and what sounds/feels like the individual blood cells whooshing past (though I doubt that's the case). The sense of my pulse results in a constant wavering of all perceived sounds, where environmental noises alternate quiet/loud, and symptoms of hyperacusis alternate 'inversely'. 

When things suddenly appear in front of my face, whether it's because of my eyes rapidly focusing (audible) or an adrenaline rush (Niagara falls), it results in something greater than these, sort of akin to the sound of shutting my eyes tightly (which, funnily enough, sounds like this newly-popular 'dubstep' genre of techno). Sometimes my girlfriend wants to show me something while I'm working at the computer and just presents it in front of my face, and, however silent, the combination feels like a blast of air to the face (without the air), a soft slap on the head, and the approximate sound of Niagara Falls underwater. It feels like a sort of rotational vertigo. Though I have problems with low blood pressure standing up, (or randomly), I don't think I have vertigo symptoms as they're described. It doesn't even feel like loss of balance necessarily, just a general beginning to black out. It's these recent tactile sensations linked to my hyperacusis that have been particularly bothersome. 

Anyway.

I was managing a sandwich shop in downtown Chicago prior to meeting my new friend, but couldn't take the assorted noises for very long, and needed to quit. Luckily, my chosen career path is as a graphic designer, which I consider myself to be moderately successful at ( http://swanzai.net ), but freelancing just barely pays the bills. 

I feel like if I were to be diagnosed, this would aid my applying to design firms or 'quiet jobs' (not sure what that may be. spa attendant?), or considering the possibility of disability. However, as an uninsured, independent American, I can barely afford a clinic visit, much less an ENT visit + subsequent treatment. I've tried the pink noise CD and simply can't take it -- it's exactly the 2nd worst type of sound for me (#1: brake pads!). 

Anyway.

I'm just venting, I suppose. I've read everything I can, I've browsed these boards, I know what 'the solutions' are. I've just really been feeling it this week and wanted to talk to someone who understood for once. 

Peace, my friends.
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Jennifer

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Reply with quote  #2 

You need to find to find a sound you can tolerate: nature CD, music CD, fan...something, otherwise you could keep getting worse. Also, you might want to go to a free or low-cost clinic and ask for an anti-seizure drug prescription to see if that calms down the physical symptoms that you are having. Just don't let them give you a benzodiazepine. These drugs have anti-seizure properties but they counteract sound therapy.

Good luck,

Jennifer

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stjenkins

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Reply with quote  #3 
I'm not living in silence (though I do spend a great majority of time at home when possible). Any sort of monotony, white, pink noise, waterscapes, rainscapes, jungle sounds, whatever just increases the pressure until I change overall frequencies. 
I listen to music, at whatever whoever else in the room considers low-to-normal volumes. Tycho is by far the most acoustically-acceptable music I've found... Radiohead's In Rainbows also falls into the "so bearable it's almost comforting" category. It's an endless search, as I've had to abandon a lot of my old favorites due to being too 'trebley', and there's no 'devoid of sudden noises' category on last.fm. 
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Debbie

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Reply with quote  #4 
Suggestion:

Apply for state-funded health insurance, you can do it by phone, it is income-based, not a giant fight like disability benefits.

W/health insurance you will be back in order on being able to see an ENT but better yet an oto-neurologist...

I would suggest also looking into dystonias, when you do meet w/neuro see if you could find one who also is experienced with this & could look @your situation from many standpoints.

Jennifer is right that in any case a GABA med might be helpful must carefully observe your responses though.

I have used a natural form in capsule form and tried Gabapentin/Neurontin.
Natural form none of the bigger side effects for me.....maybe pharma worked a bit more strongly though, not sure.
Search discussions on this board on GABA.

Maybe you could do some pro-bono work to get foot in door with some organizations which might take an interest in giving work to someone dealing w/special health challenges, perhaps get a lively practice going by forming some relationships this way.

Also maybe reach out to a student of EFT (Emotional Freedom Technique,) many exist, some would be willing to help you try to ID and clear the compounding mind/emo issues which are wound up with the symptoms now....

A last thought, if you have a chance may I suggest reading the e-books on a site called something like 'Parkinsons Recovery Project' - re: a novel approach to the physical which takes into account how body & mind do get very complexly intertwined & healing depends on clearing both...
If you or anyone do read this, I hope you'll let me know your thoughts.

Wishing you the best,

Debbie

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Debbie

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Reply with quote  #5 
By the way stjenkins,

What's the treatment for scabies? Any meds involved?
Might look into if any drugs taken @that time have any track record of toxicity to the central nervous system or auditory system.

Debbie

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stjenkins

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Reply with quote  #6 
Meditation -- without chakras, energy flows, acupuncture, qi, chi, feng shui, etc. is the only 'spirit based' remedy I personally acknowledge. However, with increased attention to 'coming-to-terms-with' rather than 'getting-rid-of' approaches to hyperacusis, I've turned up more instances of positivity-related healing. I can see the benefit of calm acceptance, but as a lifetime cynic that's going to be a tough cookie to crack.  

Debbie,
I'm pretty resistant to the notion of continuous use of pharmaceuticals, but acknowledge the possible benefit of some sort of supplement. I'll look into GABA

The treatment for scabies is a pesticide (permethrin, a neurotoxin), mixed with coconut oil and fragrance, applied to all skin repeatedly. Compounded with various stressers, longtime jaw-clenching, and somewhat irresponsible music listening (still in the quieter half of today's listeners), as well as mild schizo / asperger tendencies -- it's hard to pinpoint whether any one or all caused the condition. Is there a purpose to knowing its root? 
Also, are you referring to this publication? http://www.pdrecovery.org/blink-dl.htm

Thanks for your words of advice. Sorry that initial post was a bit of a downer, I probably should've waited for a quieter time.. 
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Debbie

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Reply with quote  #7 

Hi stjenkins,

 

No worries on your posts, why not express what we are going through at a given time.

 

I will check the link to the web site I am thinking of and get back on that.

 

Here is a research abstract from the journal, Pharmacotherapy which came up immediately when googling "Permethrin + adverse"

 

This abstract speaks of topical Permethrin apparently causing a dystonia as a rare side-effect.

 

I have recently been reading about dystonias, the forms and scope they can take seem, to me, to speak to an otherwise mystifying scope and variety of symptoms people who come to this board describe.

 

I am starting to hypothesize that what many of us have acquired - through chemical exposures, illness, loud sounds or other impacts may be one or another, or an as yet unrecognized form of "dystonia," 

or injury or damage to a part of the central nervous system,

the basal ganglia.

 

Why would identifying an origen/trigger of a condition and means of identifying a specific site of injury be helpful?

Aren't palliative (symptom management/comfort) supports enough?

 

Palliative treatments are necessary and powerful.

I won't disagree with anyone on that!

 

...but why "stall out" there in terms of the overall medical field?

If prevention and cure may some day be possible with a bit more understanding, why not gain this understanding.

 

 

I believe that identifying what can lead to a dystonia (or whatever it might finally be determined we deal with)

and who may be more suseptable to one form of dystonia or another

(they are actually being classified genetically) can bring us closer to figuring out ways to...

a) prevent these conditions from manifesting in the first place (as many seem to need an environmental co-factor to be triggered)

b) treat them more and more effectively

c) cure them

 

 

My hypothesis, for anyone still with me who cares to follow this line of thinking further:

 

is that many chemical, illness, acustic-trauma-induced conditions

which involve any combination mix/match of ear pain,

eustacian tube dysfunction, tight throat, tensor tympani syndrome,

stapedial myoclonus, body tremors, body muscle tightness/referred pain (certain pain in the scalp or face or elsewhere,) sensory issues,

and at-first-glance other unexplainable mixes of nervous system symptoms

might be resulting from injuries to different aspects of the basal ganglia -

a region governing muscle tonicity for each muscle of the body as well as some other neurological roles.

Specific or all-over hypertonic (tight) muscles, spastic muscles,

even the mixed neurological symptoms of Tourettes...and from there other conditions are being linked to the basal ganglia.

 

 

I'm not saying I'm sure of this link between the mixed bags of symptoms which bring us to this site and dystonias.

 

Just that thinking in terms of dystonias seems to me to potentially

help much better explain the broad mix of neurological symptoms

which show up on this board, and highlight that some people seem to be vulnerable in the basal ganglia region when exposed to a specific (to them) environmental co-factor. 

I find that last point very interesting and potentially very important to understanding possible prevention, increasingly effective treatments

and cures to what ails us on this board.

 

Not to mention how a much clearer understanding of all of this might lead to clues to help understand a much broader list of neurological conditions than is represented on this board, and potentially help illuminate the fields of neurology and oto-neurlogy in general.

 

 

Debbie

 

 

 

Pharmacotherapy. 2005 Mar;25(3):448-50.

Probable topical permethrin-induced neck dystonia.

Coleman CI, Gillespie EL, White CM.

School of Pharmacy, University of Connecticut, Storrs, Connecticut, USA.

Abstract

A 28-year-old Caucasian man who applied topical 5% permethrin cream once for the treatment of scabies infestation experienced a severe dystonic reaction on the left side of his neck. Assessment of causality using the Naranjo algorithm revealed a probable relationship between this adverse drug event and application of topical permethrin. Dystonic or musculoskeletal adverse reactions, including muscle spasms, have been reported with pyrethroid insecticides only after inappropriate occupational dermal exposure. These reported reactions occurred 4-48 hours after exposure and lasted from a few days to a few weeks. The mechanism behind these adverse effects may be related to permethrin's ability to delay sodium channel closure within nerve cells. This may result in a lowered threshold of nerve fibers to activation of further action potentials, leading to repetitive firing and hyperexcitation of the nervous system. Clinicians should be aware of this rare but potential adverse effect of permethrin.

PMID: 15843294 [PubMed - indexed for MEDLINE]


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Jennifer

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Reply with quote  #8 

Hi Debbie,

Your post is very interesting and I completely agree that we need to find the source of the problem so that a cure can be found. I just thought I should mention my situation, which seems to disprove the basal ganglia theory (assuming I'm understanding your theory correctly).

All of my pain is one sided. I developed mild hyperacusis from an MRI and then, two and a half years later, I developed severe hyperacusis from cumulative trauma caused by a hand-held massager I was using for muscle pain (like about a minute a day over a period of four to five weeks). My muscle pain is more on the right side of my body and I was using the massager more on that side. (I was in so much pain that I was, stupidly, ignoring the fact that the massager was aggravating my ears and I thought I could get away with using it. Wrong!) The last couple of days I used it I was laying in bed on my left side with my left ear covered by the pillow. I used it on my right shoulder with an ear plug in (but the ear plug didn't really help and I could feel the vibrations from the massager going straight into my ear). After the second day of use, I woke up the next day with constant pain in my right ear and I have had that pain to this day. And, to this day, I don't have pain in my left ear, even though I've had many noise accidents and my hyperacusis has greatly worsened since that day that I woke up with the pain - although the pain in my right ear has greatly increased as a result of the noise accidents and so has my tinnitus. So in other words, there seems to be damage in my right ear that I don't have in my left ear, and that local damage is what is causing the constant pain in my right ear.

Four months after using the massager, I developed another symptom: vibration sensitivity in my hands and feet. Sometimes I feel vibrations travel from my hands or feet right into my bad ear.

In my opinion, there most definitely can be a connection to the central nervous system, but it comes directly as a result of the injury to the ear or ears. I don't agree with Dr. Hazell about there being nothing wrong with our ears. The pain in my right ear tells me otherwise. I thought what you wrote in the Acoustic Shock Disorder thread about other sites of possible damage - apart from the cochlea (sp?) - was very interesting.

Anyway, I'm typing all of this really quickly because I'm not supposed to be on the computer right now, so sorry if I'm rambling.

But, of course, I'm not the last word on the subject. I just thought I should mention my case. But your theory is very interesting - as are all your posts. I'm glad someone is putting some thought into what the heck is going on with us!

Hope you have a nice rest of the week.

Take care,

Jennifer :-)

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Debbie

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Reply with quote  #9 

Hi Jennifer,

Thanks for your thoughtful reply to the ideas I brought up, I would welcome dialogue on these topics.

For a long time, as you may have noticed from past posts of mine, I have been thinking of my also primarily unilateral (one-sided) local ear symptoms in terms of local injury, also, as with your case, triggered by acoustic trauma.

I still do consider the situation to be one of local injury...yet I am starting to see what may potentially be "the rest of the story" (at least some of it)

which may answer some questions I've had about all of this.

I have linked my ear pain to tension placed on tendons by spasming muscles and the burning to muscle fatigue, and some extreme, initial, excruciating sound-exposure-related pain to muscles pulling so hard on their tendons in the middle ear space, especially near the stapes bone, that tendon fibers were being torn.

This type of tendon injury, where muscles contract too hard for the strength of the tendon and promote a tear at the muscle-tendon border (a tendon being the bridge between the contracting muscle and the bone which is pulled along with the contracting muscle to create a joint movement) is not uncommon in some athletics.

I was sure for many reasons that I was truly experiencing the effects of hypertonic (hyper tight) muscles.
But I could never figure out is what would be the connection with the central nervous system - why were these muscles cramping?

 

How come they were snapping into contraction with such force as to seemingly (and very possibly - according to my oto-neurologist who prsecribed GABA to ease this) be tearing the tendons?
 
And why were certain muscles elsewhere - in my neck, base of skull, upper torso, also spasming in some involuntary way that was completely outside my experience?

As well...
How and why could these muscles release suddenly and completely, on several different occasions?
What seemingly central nervous system situation was unnaturally directing and facilitating all of this?
What was the relationship?
 
Upon these sudden releases, all of my other symptoms dissapeared within seconds of the final, extremely palpable, involuntary (and relieving) release of muscle cramping.  
 
The sudden and simultaneous release of this complex of muscles eliminated my high pitched, pulse synchonous tinnitus, which from what I could hear and feel seemed to be the sound of constricted blood flow - due to the muscular tightness pulling and tugging structures into impingement upon a vessel...or a vessel into impingement upon a nerve(??)


And, as I have mentioned probably ad museum in the past, all my other symptoms simultaneously released at the same time: ear fullness (from tight muscles, constricted blood flow and/or impinged local nerves?), hyperacusis, and a strange syndrome of involuntary contracture of some larger muscles, major muscles in my neck and upper torso.


None of my ear symptoms and overall malaise or unnatural, uncustomary responses to sounds existed one iota when the involuntary, extreme and unnatural muscle tightness was gone.

 
When it was in place even a little - as either this alien complex of muscle contractures was activated or it was not - even "good" days existed within a continuum where nothing felt "normal" or stable at all.
In other words, despite symptomatic fluctuations, the active experience of the condition is 'all or nothing" to me.

I have tried to express the night and day difference between the fluctuating intensity of the condition and experiencing full remissions where the condition seemed absent 100% in every way,
and normal sounds did not cause my auditory system to respond or feel any differently than it had prior to all of this.

There aren't words to describe the difference between "having" tight, uncomfortable feeling ears that are always on the verge of changing state to one degree or another based on sound exposures or (especially in the chronic phases) many potential factors,

and being normal.

I feel like spelling this word out again: N.O.R.M.A.L.
It feels clear and simple and relieving to use that word, as if that experience of normal might not be so far off.


Why did I have these sudden and semi-lasting, full reprieves, when no one else here ever did?


I chalked this up to the fact that I rested from sounds a bit more than some early (save for the awful accidental exposures gained by not knowing what I was dealing with and returning too soon and being exposed to extreme sounds,) and did anti-inflammatories and supplements and cranial work early...or maybe luck.

I do think that maybe it IS possible to ward off a chronic onset of anything with the proper early response, though, whatever that may be.

Just in the last 5 days I have been reading about dystonias...which I have learned occasionally do, especially in the early phases, sometimes fully remiss...unfortunately usually to return.

Full, sudden remissions (unfortunately not considered to usually be permanent) are a known if relatively rare phenomenon with dystonias, as explained throughout the literature.

Maybe, that is, of course, if dystonias apply here,
it is that our small group here is not of enough critical mass to see other examples of full, temporary remission such as mine.

 
 
I have expressed here since my injury that the trauma felt also to be a head injury, even a concussion.
 
During the acustic trauma event, as the alarm-sound "drilled and drilled" into my ear and skull, it literally felt like it was penetrating and affecting my brain...and the further exposures during the ensuing weeks and months took this sensation to increasing levels. 
 
Looking at all of this from the ganglia-injury standpoint, I can envision the overwhelming auditory stimulus knocking and already pre-disposed basal ganglia region.

Local, unilateral (one-sided) dystonias are par for the course, they are called "focal" and hemi-dystonias.
Trauma and local-injury-induced dystonias are commonly in these categories.

What you describe in terms of one-sidedness and local trauma does not clash with what is known of dystonias.

Might your shoulder issue have been part of a wider symptoms picture for you or clue as to the whole situation in your case? That would be another question. What led up to the shoulder situation?


There is no talk in the literature that I have seen so far about auditory symptoms and dystonias....eye symptoms, larynx symptoms, neck and shoulders symptoms, tremors of the extremities, a long list, it goes on and on, but the list does not mention the ears. 

I am wondering whether what may be in fact obvious dystonia-consistent patterns involving the auditory system and/or middle ear might be being overlooked because....they are being looked at through a pre-conceived lens.


Well these are a few of my thoughts on this so far.

Thanks Jennifer, I hope you are experiencing some relative relief these days and again I would find thoughtful dialogue on any of this to be welcome.

Debbie




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Debbie

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Reply with quote  #10 
OMG Mike!!!

Your work is fabulous. Your choices of color and space...well, I guess that's what graphic design is made of...are ingenious IMO.
I really like some of the black & whites too, the one with the bicycle for example. Very peaceful.
You really seem to have an eye for capturing an idea in an image...and letting it speak 1,000 words.
Companies would be blessed to use your work.

Why not petition some student marketers in Chicago...and anywhere...to help you get out the word?
Those whose efforts succeed in getting you contract work...the minimum quantity at your discretion...could be paid back in bartered services.
Up and coming market professionals need cutting edge graphics too. 
You do amazing work.
Companies should be duking it out over who gets to have you on their team!

Hey now, wouldn't that be an interesting outreach image...
Company A and Company B throwing office supplies at each other just to be able to get to you and your work first.
But I know you need no creative help!

Debbie



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Debbie

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Reply with quote  #11 
Hi Mike,

About this description:

"Sometimes my girlfriend wants to show me something while I'm working at the computer and just presents it in front of my face, and, however silent, the combination feels like a blast of air to the face (without the air), a soft slap on the head"
 

Not sure if this would help any doc zero in on the nature of some of what you are experiencing but just in case, wanted to share that I feel I can empathize with this sensation - it approximates the sensory startle responses I would feel when having been totally sleep deprived for over 24 hours during which I had to exercise full concentration powers on meticulous tasks.

I have pulled many "all nighters" of 24-48 hours while working on adrenilin (not even caffiene or other alertness aids - which I have never taken)
to complete a project requiring high levels of concentration.
I'm not confusing what you are saying with your being sleep deprived, just wondering what the mechanisms are neurologically that create these "shock" sensations with sensory input when the brain is in a certain state.

When I have been in that state, someone showing me something, or having to process a sudden sound, or any other new sensory data would feel "surreal and surprising," the words you used above seem to describe some of this.

Just thought I would mention.

Debbie

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Debbie

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Reply with quote  #12 

Hi Jennifer,

 

You said:
 
"I just thought I should mention my situation, which seems to disprove the basal ganglia theory (assuming I'm understanding your theory correctly).
All of my pain is one sided. I developed mild hyperacusis from an MRI and then, two and a half years later, I developed severe hyperacusis from cumulative trauma"


According to the different sources of literature I have read so far, local trauma and overuse as well are common triggers of certain dystonias.
When this happens it usually is in adults and the resulting dystonia is focal (relating to the area of overuse or trauma and frequently one-sided, or "unilateral.")

So your trauma-linked and unilateral symptoms, like mine, would not be inconsistent with dystonias on this basis.

It would seem to me that coming down with dystonia &/or other neurological conditions probably would result from combined factors:

some genetic sensitivity or vulnerability within the basal ganglia (in the case of dystonias,)
a sudden or chronic event when body chemstry is at a more vulnerable point, and possibly a third or more factors, such as the addition of a chemical exposure that one is sensitive to, again due to particular, personal chemistry/genetics.

 
Into a "primed" internal environment due to perhaps even transient factors as above, an  auditory stimulus (MRI, continuous, loud fans) or other which further demands energy from this brain region, but which otherwise would be unremarkable, might lead to a "tipping point" within that structure where the underlying vulnerability is exposed. 
 

You said that the MRI seemed to start the process for you.
I would wonder with anyone, what was the chemical and functional environment of your system going into it?
 

I was taking a topical medication at the time of my auditory trauma, hydroquinone, to treat a hormonally-linked pigmentation condition of the skin.

Just now, two years later, I looked up hydroquinone, guess what, neurological rare side-effects leading to muscle tremor and tinnitus, to name a few.
 
Hydroqunone has been banned in Europe since 2001 in Europe, as it turns out.
 
Instinctively I had discontinued the hydroquinone upon my auditory trauma, as I tried to eliminate everything, no matter how unlikely-seeming  that was "different" from my norm at the time...my norm when might have been more resiliant than what was reflected by what happened that day.

But, did not take the added step of looking up hydroquinone side effects...until today.
 



Could the short-term, limited-placement hydroquinone, if a possible factor in weakening my neurological defenses, been the only factor?

I think that predispositions (to the neurotoxins in hydroqunione, perhaps, to auditory distress, for another, to basal ganglia disruption, for another...)
most likely already existed.
Maybe there was not one factor...but a confluence of factors that led to such an extreme consequence for me when exposed to the auditory stressor.
 
I do believe that certainly without that auditory trauma event, and possibly without the hydroqunine, in any case without a "perfect storm" of convening events, I might not have never known about the vulnerabilities that existed in my neurological makeup...
 

From the DMRF:

How is the body affected?

When dystonia affects only one part of the body, it is called focal dystonia.

Segmental dystonia affects two or more connected body areas (for example the neck, shoulder, and arm). If two or more areas in different parts of the body are affected, the dystonia is termed multifocal(for example the eyes and vocal cords).

Generalized dystonia refers to dystonia that may affect the limbs, trunk, and other major body areas simultaneously. The term axial dystonia describes dystonia that specifically affects the torso.

When dystonia only affects muscles on one side of the body, it is called hemidystonia

Certain dystonias are labeled task-specific which means that the symptoms occur only when the person is performing a specific task or movement. These forms often involve the fingers and hands or the mouth.

If symptoms only occur in “episodes” that last for minutes or hours, the terms paroxysmal dystonia and
dyskinesias
are used.

The word torsion is sometimes used, usually in reference to generalized, axial, or segmental dystonia. Torsion refers to the twisting element of dystonia. It describes muscles contracting against each other.

Cause

Categorizing dystonia by the cause is not a simple task and can easily get complicated. The DMRF often states in publications that we don’t know the cause of dystonia because scientists have not yet identified the precise biochemical process in the body that triggers the symptoms.

 

 

This is often referred to as the “mechanism” of dystonia, and it is suspected that this mechanism is common to all forms of dystonia.

On the other hand, we do know that dystonia can occur as a result of trauma, certain medications, and mutated genes. So, we may say that the mutated DYT1 gene or physical trauma cause dystonia, but these explanations do not address the true origin of the dystonia and what happens inside the body to produce the symptoms.

When describing dystonia by the cause, it may be characterized as
primary, secondary, or dystonia-plus.

 

Secondary dystonia

Secondary dystonias are cases that can be attributed to drug exposure, trauma, or another disease or condition. Secondary dystonias include insults to the brain caused by certain kinds of tumors, infections, stroke, metabolic conditions, and toxins.

 

 


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Jennifer

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Reply with quote  #13 

Hi Debbie,

Thanks so much for your reply and for all the information about dystonias. That was very interesting.

I'm afraid I can't write much because I flared up a couple things yesterday, but in answer to your question about my shoulder, this is from a repetitive strain injury from years back. I think that the common denominator for me in terms of all my health problems is that I have Ehlers Danlos Syndrome (Type II). I have a lot of things that could be symptoms of this - even my back problem (nerve root lesions) is something that can be a symptom of this. But this is just a theory; I haven't yet sought out a diagnosis.

You mentioned some theories for your ear fullness. Did you catch that ear fullness was mentioned in that article about Acoustic Shock Disorder? I can't remember the explanation that was given there exactly, but I think it was something about fluid flow in the ear.

Okay, I should stop typing now. Have a great weekend!

Jennifer

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Debbie

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Reply with quote  #14 
Hi Jennifer,

Ehlers Danlos Syndrome (Type II) sounds challenging to manage. I wish you the best!

I don't recall the acoustic shock thread specifically right now, but I am aware of many explanations for sensations of ear pressure.
Even water stuck in the outer canal leads to that stagnant, irritating feeling......I used to hop on one foot after swimming every day just to clear the water so that I could feel clear and happy in my head before moving on with my day.

Little did I know that there could be a time and a condition in which that horrible, stagnant, stuck sensation that makes me want to rip my ear out could become permanent.
And that I would be "talking myself through it" and so much more
in order to be able to engage in the rest of life every day!

I know we each have different components of what's going on with us.
I'm sure there are many combinations therein.

Here's hoping that attempts to put puzzle pieces together do lead to
greater clues to the rest of the puzzle(s).

Wishing you and all of us ease and a happy weekend, despite any of our challenges!

Debbie

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aQuieterBreeze

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Reply with quote  #15 
Hi Debbie,

As you  contemplate what may have had an influence on your condition,
other than the Very loud sound you were exposed  to...
please remember what you mentioned, about how your tinnitus started .......
You mentioned  that it was nonexistent to begin with, but showed up later.
(By the sound of it,  as a result of, or in combination with - VERY forcefully trying to clear your ears)

I looked up the medication you mentioned - (on rxlist) - and there are 2 forms of it listed, that I noticed.
Do you know which one you were using?

Also, do you remember how soon after your auditory trauma(s) you quit using it?
And did that coincide with any increase or decrease in symptoms?

The acoustic shock thread, I think Jennifer is referring to -  can be found here ----
http://www.chat-hyperacusis.net/post?id=4681945
Acoustic Shock Disorder

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aQuieterBreeze

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Reply with quote  #16 
Hi stjenkins,

I'm  sorry to hear of the difficulties you are going through...

You mentioned
I developed hyperacusis over a period of about 12 hours more than 2 years ago. It's always been accompanied with headaches and tooth pain, multi-tonal tinnitus, and the sensation of warm cotton balls being pressed deep into my ears.

May I ask if the headaches you notice could be described as migraines?

you also mentioned -

When it began, it was such a pure, focused, intermittent sensation, it was almost as if the cars 10 floors down were rushing towards my face, but then normal, or a sudden, crushing silence. It was very surreal.

Was that a visual sensation? Or like the sound got very loud - or both?

From what I read - if someone does have migraines they May also experience  sensitivity to sound, and tinnitus, as well as other symptoms, Sometimes including something called "aura" and at least sometimes including - sensitivity to light.

You mentioned-

I'm just venting, I suppose. I've read everything I can, I've browsed these boards, I know what 'the solutions' are. I've just really been feeling it this week and wanted to talk to someone who understood for once.

I'm Not in the medical field, but from what I understand  Some conditions, other than hyperacusis - can include sensitivity to sound, and also dizziness or vertigo.
As well as tinnitus.

There are a couple people who registered recently (on this board) who have mentioned they have meiners disease (sp?)- and i belive at least one of then has mentioned  that following a certain diet may be helpful...
And though I am Not suggesting (or in any way implying) that you have meiners, as i would have no way of knowing ....
My point in mentioning that is that  knowing what the underlying condition is - if there is one, can be helpful.

For hyperacusis,  there are many things  one can do that  can be helpful to improve one's tolerances to sound .....
To find something in the way of sound that one is able to tolerate, and work from there, gradually, over time - adding to what we are able to tolerate, as we are able to do so is something i think can be helpful.

Sorry to hear you are going through such difficult times, to find out what is causing your difficulties and symptoms may help lead to solutions .... or perhaps better ways to manage a condition -

Among other things in your post - you mentioned-
.....It feels like a sort of rotational vertigo. Though I have problems with low blood pressure standing up, (or randomly), I don't think I have vertigo symptoms as they're described. It doesn't even feel like loss of balance necessarily, just a general beginning to black out. It's these recent tactile sensations linked to my hyperacusis that have been particularly bothersome.

Is there any reason you can think of for the "recent tactile sensations" you mentioned?
Have you been put on any new medication, or gone off of (stopped taking) any recently?

I think it can be important to remember that  some medications and supplements even herbal supplements - can interact with certain conditions and other medication as well,  in ways that are really important to be aware of.
And when one is taking medication, and/or supplements it's important to let one's doctor  know all the medications and supplements one is taking. ...... as I mentioned they can interact with each other in ways that important to be aware of.

Thanks for your posts - don't worry about venting.

Wishing you MUCH better days
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Debbie

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Reply with quote  #17 
Hi aQuieterBreeze,

Yes, the tinnitus started - in conjunction with low frequency and loud sound exposures - immediately after the valsalva maneuver. Clearly that's a major clue to something!
The hyperacusis, and the impossible ear fullness, and the head concussion feelings preceeded the extreme valsalva incident by 2-3 weeks...until I could no longer stand the swollen-shut sensation in my ear.

I discontinued the hydroqunione (and tried to clean up diet and obtain ear-health supplements) upon the initial acuostic trauma which, within hours, resulted in acute hyperacusis and the growing ear fullness.

When I saw the note online the other day (two years later) about neurological adverse effects of hydroquinone, when I saw, "muscle spasms/tremors" I thought of the pathways which relate with dystonias....which are "muscle movement disorders," such as tremors,
and just realized, there's a lot we don't know here, and when I saw "tinnitus" listed, I just thought, something affecting the auditory system....perhaps other auditory situations of imbalance as well, stresses to various parts of the auditory system. Who knows.
I simply saw in that list some surprising items which seem worthy of taking note of..considering this is a TOPICAL medicine!....and of discontinuing as I did.
And I must admit, I am surprised at what I found, and feel proud of my instincts then to quit even a "topical med" at the time simply by virtue of my gut feeling to stop using a new substance (which could possibly penetrate the skin and get into the body chemistry??) I knew little about when I was going through a sudden health crisis.

I'm not home now, but did save the stuff, which sits in my med cabinet because I always meant to check into it.....and possibly re-continue using it!
When I get it I will look at the container.

Debbie

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