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mkd13

Registered: 11/19/12
Posts: 99
Reply with quote  #1 
I just wondered if anyone out there has exploding head syndrome, I have had this for nine months now along with everything else. but it just got much worse the last week. There is not much known about it but ear causes are suggested. I also saw on an MS page a number of MS sufferers have it.
SoundHunter

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Registered: 06/19/10
Posts: 4
Reply with quote  #2 
Hi mkd13, your title called my attention "Exploding head syndrome", because that's what I've been experiencing in the last months. I didn't know that condition existed, I thought I was going crazy, literally because I've been under too extreme stress and depression. I have severe hyperacusis and tinnitus since 2008 due to a loud sound exposure and in the past two years my life quality has worsened because of back problem (5 herniated disks .. and I'm only 21) so, my everyday life is full of physical pain, stress, anxiety and depression which has become a vicious circle that most of times I can't handle (Not because I don't want to, but because It's literally not possible with all the problems I'm dealing with, for example, now I'm following a therapy for my back problem, but that means having to leave home everyday and expose myself to the noise of traffic which worsen my H and T, even If I do everything to protect my ears, which also feeds my stress and anxiety) So, I believe this syndrome is logical in our case, because it has correlation with stress or extreme fatigue which is common when you suffer from Hyperacusis or Tinnitus. In my case I get this "Exploding head" sensation more often when I don't sleep enough hours a day or I'm under too much stress (which is almost everyday) so, I can say sleeping more could help.
lk

Registered: 07/21/11
Posts: 142
Reply with quote  #3 
This symptom is indeed stress realted and relaxing, sleeping enough is verry important !!

You can read more about all other symptoms that you "can" have from too much noise
together with T and/or  H :

Article from Myriam Westcott:
posted by Dan, open link:

NoiseandHealth2013.pdf


The presence of symptoms consistent with TTTS in

each ear or side of the head (except for the symptoms

of subjective vertigo and nausea, which could not be

lateralized, and headache, if central):

Dull ache in the ear

A sensation of aural fullness or “blockage”

A sensation of tympanic flutter

A sensation of numbness around the ear

A burning sensation around the ear

Pain in the cheek

Pain in the TMJ area

Numbness/burning/pain along the side of the neck

“Disordered” balance/mild vertigo (often described

as ‘sway’– like being on a boat)

Nausea

“Muffled” hearing (when the patient reports a

subjective, often fluctuating, hearing loss, but their

test results indicate normal or stable hearing)

Subjective “distorted” hearing (includes any

fluctuating change in clarity of hearing, e.g.,

diplacusis)

Headache.

Greetings, lk

 

 

 

mkd13

Registered: 11/19/12
Posts: 99
Reply with quote  #4 
Hi soundhunter,
I am glad that you know that you are not alone. I have read postings from people who won;t tell their doctor because they are afraid the doctor will think they are crazy. I haven't even told mine yet, in part because i had other health issues that upstaged it. You sound like you have a lot of hard health issues it must be very difficult.

I am sure stress makes it worse, But there seems to be a correlation with ear issues too. Some summaries suggest a possible middle ear or temporal lobe connection. Many people with MS seem to get it (this is anecdotal evidence from websites) so maybe a neurological, CNS problem too which I believe can be an issue sometimes in hyperacusis. 

Yes, it makes sleep much harder to get, especially in conjunction with tinnitus and H. My tinnitus and EHS got worse over the last week and sleep is much harder now. I do think the increase was probably stress related though the original onset was not stress related. And then lack of sleep creates more stress, definitely a vicious cycle, the EHS is so bad that I am trembling in bed. It didn't used to hurt at all but now it does 

LK,

Yes we all need sleep! And I agree with your other posts that noise even moderately loud noises can be bad for people with severe (cat 4) hyperacusis.
lk

Registered: 07/21/11
Posts: 142
Reply with quote  #5 
Hi mkd13,

To be clear:  cat 4 from Hazell and Jastreboff has nothing to do with the categories of the Hyperacusis Network about the degree of Hyperacusis...
You can have mild (cat 1) degree of the hyperacusis network and be in category 4 of Hazell and Jastreboff  !


Jastreboff and Hazell:
Patient Category
Criteria
0
Tinnitus a minimal problem
1
Tinnitus a significant problem
Hearing loss not a significant subjective problem
2
Hearing loss a significant subjective problem
Tinnitus a significant problem
3
Hyperacusis a significant problem
Hearing difficulties irrelevant
Tinnitus irrelevant
4-Tinnitus
Prolonged tinnitus exacerbation caused by sound
Hearing difficulties irrelevant
4-Hyperacusis
Prolonged exacerbation of hyperacusis caused by sound
Hearing difficulties irrelevant
Tinnitus irrelevant


Greetings,
lk
SoundHunter

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Registered: 06/19/10
Posts: 4
Reply with quote  #6 
Hi mkd13,

That's so true what you say, I, myself,  don't want to tell doctors all what I'm going trough because most of times they think I'm mentally ill and in some way I'm just "creating" all of my symptoms or everything is just because of "stress", but that's it, they don't pay much more attention to it, they just tell me "Try to not 
get stressed, go out, relax, do sports, etc" but they don't understand our stress is related to noise exposure which highly limits our options to manage it, and it's a little worse for me because now I can't do any sports or running (which really helped me with stress before) because of my back problem. We hyperacusics are under too much stress and constant emotional changes (anxiety, anger, sadness) which is not healthy, so trying to keep our minds busy by doing sports, some manual work or hobby that doesn't hurt our ears is really helpful. I can say sports worked the best for me and I really miss doing them. Stay in physical activity so you don't get the problems of a sedentary lifestyle and it'll help a lot with stress and even with your sound sensitivity to a certain degree, consequently this exploding head syndrome will get better.

lk,

Thank you so much for the link, I have many of the 
symptoms described there so it's really helpful information. Thanks again!
lk

Registered: 07/21/11
Posts: 142
Reply with quote  #7 
Hi SoundHunter,

These  symptoms and the TTTS can still go away when your soundsensivity is going better,
important to know for the future !
Not everyones soundsensivity becomes chronic...
I wish good luck,
try TRT, it is still the best treatment at this moment !

Greetings,
lk
Rob

Registered: 05/02/05
Posts: 3,653
Reply with quote  #8 

mkd13 and SoundHunter –  

The most important thing to understand about “exploding head” syndrome (EHS) is that the condition is harmless and often disappears over time.  In fact, doctors who are familiar with this syndrome believe reassurance can go a long way in helping patients to reduce symptoms of this unpleasant, frustrating, and sometimes frightening challenge.  

In a 1991 study published in the journal Sleep by Sachs and Svanborg called ‘The exploding head syndrome: polysomnographic recordings and therapeutic suggestions’, a tricyclic antidepressant with antiobsessional properties called clomipramine was administered to three subjects and immediately relieved the EHS symptoms.  One of you had asked if EHS is neurological, and it may reassure you to know that none of the subjects in this study had a neurological disorder.  The authors write:  "In all patients the symptoms ameliorated spontaneously with time.  The severity of the symptoms was reduced by reassurance of the harmlessness of the condition."  The study concludes the symptoms "may be an expression of emotional stress in the awake state."  Here is the abstract for the study.  The PDF for the entire study is available online.   

http://www.ncbi.nlm.nih.gov/pubmed/1896728 

 

*****

 

Teixido and Connolly summarized the symptoms of EHS in ‘Explosive tinnitus: An underrecognized disorder’ in the journal Otolaryngology – Head and Neck Surgery (1998).  They described it as a "frightening, loud, 'crashing' or 'banging' noise that occurs in association with sleep."  The sound has also been compared to a gunshot, a slamming door, a roar, loud voices, waves crashing against rocks, and an electrical short circuit.  EHS symptoms usually occur during sleep or when a person is very drowsy.  In addition to experiencing an extremely loud noise that seems to come from inside the head, some people also experience an adrenaline rush going through the head – a symptom that occurs numerous times in some cases.  The authors report that the first case of this syndrome was reported in 1792.  See this link for an extract.

http://oto.sagepub.com/content/118/1/108.extract

Different theories are being considered to explain EHS.  Someone asked whether this syndrome was associated with a CNS problem, and it turns out that one theory is EHS may be due to an inability to properly prepare the nervous system for sleep.  As recently as 2011, Aage Moller wrote that EHS may be due to “an exaggeration of the events that normally occur in the transition between being awake” and being asleep.  The auditory nervous system relies on extensive gain control in order to process the wide range of amplitudes of the various sounds it encounters.  During the normal transition between being awake and being asleep, the reticular system makes changes to the excitability or gain of the motor system and to other sensory systems in the central nervous system in order to prepare for sleep.  EHS may be due to the failure of the automatic gain control.  Someone had asked whether the middle ear was involved.  The first structure of the auditory system that performs automatic gain control is the cochlea (in the inner ear), where amplification in the cochlea by the outer hair cells decreases with the intensity of sounds.  Amplification in the cochlea is partly controlled by the central nervous system through a part of the descending auditory pathway called the olivocochlear bundle. 

EHS may also share some common ground with audiogenic seizures.  In a study in which audiogenic seizures were induced in rats by noise, involvement of the inferior colliculus was found.  

Maybe you can spread the word to other folks you have encountered that EHS is nothing to be ashamed of and nothing to hide from one’s doctor.  It is real, it is taken seriously, it is harmless, and there are some compelling theories that may explain it. 

Rob

Johnloudb

Registered: 07/31/09
Posts: 1,728
Reply with quote  #9 
Quote:
Originally Posted by SoundHunter
so, my everyday life is full of physical pain, stress, anxiety and depression which has become a vicious circle that most of times I can't handle (Not because I don't want to, but because It's literally not possible with all the problems I'm dealing with, for example, now I'm following a therapy for my back problem, but that means having to leave home everyday and expose myself to the noise of traffic which worsen my H and T, even If I do everything to protect my ears, which also feeds my stress and anxiety)


I agree with the comments that say this is nothing to be concerned about. The symptoms associated with Exploding Head Syndrome ( I hate that name by the way), are just a limbic (emotional brain) and autonomic nervous system response to a sound (or something) you're phobic or have aversion to. So fear and avoidance, the norm in the hyperacusis world, creates a lot of this. And the truth is we just don't have much control over the auditory subconscious, people worry.

Treating it is just a matter of treating your sound sensitivity. But as you work at exposure it can make symptoms worse. It's important to stay positive and not distress over you symptoms and understand that they are not related to damage.

These symtpoms do go away as you work at exposure, and treat your sound sensitivity. Cognitive Behavior Therapy (positive self talk, visualization, and the like) is really helpful too. Also, I find interesting that where I experience sensation (or discomfort) usually occur at trigger points along the meridians (something I learned in yoga class). Tapping these points ( between the eyes, forhead, top of the head, and other meridian points) while reciting positive messages ("all is well" and the like) helps calm the limbic system.  Tapping the points increase brain plasticity, which is increases the brain's ability to adapt.

Here is what my Yoga instuctor told me that tapping these points (also energy work in general) does - 
1. turns off cortoisol
2. turns on seratonin
3. deactivates the limbic system
4. creates a delta brain wave state

The real problem is the sensitivity and exposure desensitization is part of TRT. These symptoms do get less intense and even go away as your sensitivity gets less. 

John


__________________
John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
mkd13

Registered: 11/19/12
Posts: 99
Reply with quote  #10 
Rob,

many thanks for the information.  I especially liked the second part of your info which looks at specific causes other than stress. I got it at the same time i got nocturnal myoclonus and aural fullness and eut.
this was a few months before t and h. I think in some cases it's related to nerve damage or cns issues though stress will no doubt make it worse.
Although it might not be life threatening, like h and t it can cause a lot of suffering, especially it's impact on sleep which is already difficult if you have severe h and t. I've had it for nine months straight and it got worse over the last two months. I have between 5 and 15 bouts nightly now and it's much louder, more of a bang where it use to mainly a fizzy electrical sound that was not too loud. It now throbs sometimes too.

Thanks to you too john!
Rob

Registered: 05/02/05
Posts: 3,653
Reply with quote  #11 
Happy to help, mkd13.  I hope you feel better soon.

Rob
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