Hmm. Something isn’t quite right. I’ve often found coping with cold weather difficult, it seems to seize up my muscles and joints, and I’m sure this is due to reduced nerve conduction speeds at lower temperature. I’ve mentioned this before in the ‘cold burning feet’ post. I have to point out that it isn’t that my feet were actually cold, just a perception of cold which can sometimes feel as if it’s burning… anyway with that out the way, what’s the fuss with heat and summer temperatures.

I like the warm weather, it feels good, more so than winter weather, my body though doesn’t seem to respond well to heat, and this has been a creeping awareness of mine for sometime. As usual I try to deny these things, brush them off as perhaps just anomalous, but as I was looking over my old yahoo 360 blog, I found no end of odd references to hot weather, increased neuropathic pain and numbness, difficulty with mobility and and general fatigue. My old neuropathic pain and numbnes body maps from several years ago also clearly show this pattern. (I will scan these and post them here at a later date…)

So I’m not imagining this creeping insidious problem with high ambient temperatures.

Is this unease just due to HNPP? I’m not really sure, I’ve always found that the summer, can leave me struggling with vertigo and balance issues, so that’ll be ‘Meniere’s Disease’. But not entirely, in recent years migraines have become more troublesome, not just the thumping pounding one-sided headaches, but the weird neurological frookies with it. Odd vision quirks, persistence of images, scotomas- blind spots, sometimes brightly cooured, ataxia and depersonalisation that often accompanies these episodes.

I have no idea what is due to what anymore, and in someways it doesn’t matter. It is how it is and I have to find ways to cope with it.

I can cope in my own small circle of space, as long as there aren’t too many demands on my time. So I still like the summer, lazy summer days, where I can potter in my garden and take the changes in mobility and sensation as they come… find the path of least resistance…

Abstract The objective of the present study was to investigate endolymphatic space images in patients with fluctuating hearing loss without vertigo, and to elucidate its underlying pathophysiology. Eight patients with fluctuating hearing loss without vertigo were included in this study. 3T MRI was taken, 24 h after intratympanic injection of gadolinium-diethylenetriamine pentaacetic acid (Gd-DTPA). Electrocochleography and VEMP tests were performed to evaluate cochlear and vestibular functions. Endolymphatic hydrops were observed both in the cochlea and in the vestibule of all eight patients. Three patients out of six whose summating potential/action potential (SP/AP) ratio was recordable showed an elevation of SP/AP ratio. In the two patients with remarkable endolymphatic hydrops in the vestibule, VEMP was absent from the affected ear. In conclusion, 3T MRI after intratympanic injection of Gd-DTPA revealed endolymphatic hydrops both in the cochlea and in the vestibule in the patients with fluctuating hearing loss without vertigo.

from ORL -Journal for Oto-Rhino-Laryngology and Its Related Specialties

Abstract The objective of the present study was to investigate endolymphatic space images in patients with fluctuating hearing loss without vertigo, and to elucidate its underlying pathophysiology. Eight patients with fluctuating hearing loss without vertigo were included in this study. 3T MRI was taken, 24 h after intratympanic injection of gadolinium-diethylenetriamine pentaacetic acid (Gd-DTPA). Electrocochleography and VEMP tests were performed to evaluate cochlear and vestibular functions. Endolymphatic hydrops were observed both in the cochlea and in the vestibule of all eight patients. Three patients out of six whose summating potential/action potential (SP/AP) ratio was recordable showed an elevation of SP/AP ratio. In the two patients with remarkable endolymphatic hydrops in the vestibule, VEMP was absent from the affected ear. In conclusion, 3T MRI after intratympanic injection of Gd-DTPA revealed endolymphatic hydrops both in the cochlea and in the vestibule in the patients with fluctuating hearing loss without vertigo.

from the European Archives of Oto-Rhino-Laryngologyl

A day to raise awareness for all rare diseases, 28th February 2009.

World Rare Disease Day

What is a Rare Disease

A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000 citizens (Orphan Drug Regulation 141/2000).
Rare diseases may affect 30 million European Union citizens.

Characteristics of rare diseases
-  Rare diseases are often chronic, progressive, degenerative, and often life-threatening
-  Rare diseases are disabling: the quality of life of patients is often compromised by the lack or loss of autonomy
-  High level of pain and suffering for the patient and his/ her family
-  No existing effective cure
-  There are between 6000 and 8000 rare diseases
-  75% of rare disease affect children
-  30% of rare disease patients die before the age of 5
-  80% of rare diseases have identified genetic origins. Other rare diseases are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.

Rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.
Relatively common symptoms can hide underlying rare diseases, leading to misdiagnosis.

Rare disease patients face common problems:
-  Lack of access to correct diagnosis
-  Delay in diagnosis
-  Lack of quality information on the disease
-  Lack of scientific knowledge of the disease
-  Heavy social consequences for patients
-  Lack of appropriate quality healthcare
-  Inequities and difficulties in access to treatment and care

Well, this disease is not fatal first of all. It’s related to the ear. I have thought to myself what makes me interested and be able to sit on this chair and type an averageof 200 words, and the answer was either science or facts. You may have noticed the trend in my posts. The reason I would like to inform the world about this disease is because one family member is suffering from it. But he/she is in the stage of bearing with it. He got past of the shock and all of a sudden vertigo, and also past the fact that he has something wrong with him/her.

To start,

what is Meniere’s disease?

It is a disease in the ear, that can cause episodes and fluctuations of hearing loss, episodes and fluctuations of vertigo, episodes and fluctuations of tinnitus(imaginary sound), episodes and fluctuations of aural fullness(you feel that your middle ear is under pressure, but its not, and meniere’s doesn’t even attack the middle ear).

Now I said episodes because they come and go, that easy. And by fluctuations I mean different intensities, some people get insane and rapid hearing loss and deafened AT THE MOMENT, and some loss hearing slowly over time, and it is a fact when I say that most patients actually never live long enough to be definitely deafened. Because the process takes too long for the human life-span to bear.

What causes Meniere’s disease?

For now the cause is unknown and is labeled as idiopathic, this means of no known cause.Yet I will list what researchers believe which might be the cause.

1. excess endolymphatic fluid in the ear, mainly cause when potassium rich endolymphatic fluid mixes with sodium rich endolymphatic fluid in the inner ear contaminating it.

2.a blood vessel in the ear pressing against a nerve

3. a virus infection

What is the treatment for Meniere's?

One of the most effective treatments, and by treatments I mean totally inexperiencing the symptoms, is lifestyle change. Eat less salt, avoid caffiene, avoid fats and avoid smoking.

Also such disease’s are most manageable when the patient can identify the trigger. For example my family member knows 2 triggers that I know of, and they are when he/she wakes and he didn’t have enough sleep, or when he’s/she’s in the bathroom where the is complete silence and no action at all and the brain then focuses on the tinnitus making the sound enlarged, volume wise.Some patients and im happily to say like my family member can manage it, and that comes during time. But we can thank god because other people have the symptoms so intense that they have no balance at all, and become TOTALLY disabeled.I have seen these people on wheel chairs, it all depends on your luck. Thank god again.

Is there research on Meniere’s?

Yes, infact, there is a huge amount and that’s where the problem is because most patients believe that there is none, but infact there is alot, and they are all trying to link it with the causes thus after that a cure can be obtained. Infact, 134 articles have been written to PubMed in 1 year! That’s over 1 article every 3 days! There is far far far far more than this, infact it’s too much for my bare hands to type, so I will post the link.http://www.menieresinfo.com/research.html

The last thing I would like to say is this disease is manageable, not fatal. You, the patient, should thank god, because I can list an almost infinite list of diseases far more severe. God can you bless you in anyway, and I think giving you this disease is better than Chronic Kidney Failure or Brain Cancer.

Beberapa hari yg lalu – saat sedang di depan komputer – tiba-tiba saja pendengaran saya melemah. Awalnya saya tidak mempedulikannya, tapi secara perlahan tubuh saya mulai terasa oleng seolah-olah sedang berada di atas kapal yg diombang-ambingkan oleh ombak. Kaget, saya mencoba berdiri tapi perasaan oleng ini malah semakin menjadi. Padahal kepala saya tidak terasa sakit atau pusing, hanya keseimbangan tubuh saja yg tiba-tiba kacau balau. Kemudian telinga saya pun juga mulai terasa berdenging seolah-olah sedang naik pesawat terbang yg sedang lepas landas. What the…? Mungkin semacam itulah kira-kira pikiran saya saat itu, bingung dan resah.

Awalnya saya mencoba mengambil air putih dan minum sebanyak mungkin (di pesawat, dengan menelan bisa menyesuaikan tekanan udara dalam telinga dengan tekanan udara di luarnya). Tentu saja, karena penyebabnya bukan karena perbedaan tekanan udara, masalah saya tidak hilang. Kemudian saya mencoba berbaring dan akhirnya tertidur dengan perasaan oleng yg masih tak kunjung hilang.

Tidak lama saya terjaga, dan menemukan bahwa perasaan oleng tadi sudah hilang, keseimbangan tubuh saya pulih dan pendengaran saya kembali normal. Yg pertama terpikir oleh saya waktu itu adalah … Google! Ada apa dengan saya barusan? Saya lalu mengetikkan kata kunci “sudden dizziness” (artinya kira-kira “pusing mendadak”) pada mesin pencari Google! Dan sayapun menemukan Ménière’s disease. Berikut saya tuliskan terjemahan paragraf pertama dari keterangan tentang penyakit ini di wikipedia.

“Ménière’s disease adalah kelainan pada inner ear (telinga bagian dalam, di belakang gendang telinga) yg bisa mempengaruhi pendengaran dan keseimbangan tubuh. Gejalanya ditandai dengan dizziness (rasa pusing tapi tidak disertai pening) dan tinnitus (telinga berdenging) disertai kehilangan pendengaran sedikit demi sedikit, biasanya hanya di salah satu telinga. Gejala ini muncul akibat peningkatan volume (isi) dan tekanan pada endolymph telinga bagian dalam. Nama penyakit ini diambil dari nama seorang dokter Perancis – Prosper Ménière, yg pertama kali melaporkan bahwa vertigo (suatu bentuk gejala pusing) disebabkan oleh kelainan pada telinga bagian dalam melalui artikelnya yg dipublikasikan pada tahun 1861.”

Parahnya, berdasarkan keterangan di wikipedia tersebut dikatakan bahwa hingga saat ini penyebab utama timbulnya penyakit ini masih belum diketahui secara pasti. Demikian pula situs Pusat Informasi Ménière’s disease Kanada menyebutkan bahwa tak seorangpun tahu penyebab penyakit ini, selain gejala-gejalanya saja sebagaimana yg telah disebutkan sebelumnya. Karena itu fokus riset terhadap penyakit ini lebih ditekankan pada gejala-gejala yg muncul dan bagaimana cara menanganinya.

Untungnya walaupun sangat mengganggu, penyakit ini bukanlah penyakit yg menular dan sama sekali tidak fatal.

Namun, di lain pihak, penyakit ini terbilang kronis. Artinya gejalanya bisa berlangsung lama, bisa beberapa menit atau beberapa jam walau jarang sampai seharian. Penderitanya ketika akan mendapatkan serangan sama sekali tidak menunjukkan tanda-tanda apapun. Pokoknya tiba-tiba saja kambuh, bisa siang, bisa malam dan bisa di mana saja. Repotnya lagi, karena ketika kambuh penderitanya langsung linglung, biasanya tidak ada jalan lain selain istirahat/berbaring sampai hilang gejalanya.

Sebagian besar penderita penyakit ini adalah orang dewasa, tapi bukan berarti tidak mungkin terjadi pada anak-anak atau remaja. Penjelasan lebih rinci mengenai penyakit ini bisa dibaca di halaman web ini.

Saran-saran yg perlu diperhatikan ketika mendapatkan serangan adalah cobalah berbaring dan fokuskan pandangan pada satu titik yg nyaman. Beberapa org kadang butuh dipegangi tangannya, lainnya memilih untuk sendirian. Lalu hindari makan atau minum ketika mendapatkan serangan, karena ada bahaya tersedak dan mungkin bisa menyebabkan untuk muntah-muntah. Hindari menyetir, mengoperasikan alat-alat berat, memanjat, atau kegiatan-kegiatan semacamnya sampai paling tidak seminggu setelah serangan terakhir muncul. Pada saat terkena serangan hindari pula cahaya terang, layar monitor/TV, atau membaca karena bisa membuat gejalanya makin parah.

Keterangan lebih rinci mengenai penanganan terhadap penderita baik pada saat terkena serangan maupun cara-cara pengobatannya bisa dibaca di halaman web ini.

Saya sendiri baru dua kali terkena serangan dalam selang waktu 2-3 hari yg lalu. Semoga saja tidak bertambah parah dan semoga dugaan saya bahwa yg menimpa saya hanya Ménière’s disease benar. Kalau yg menimpa saya adalah penyakit yg lebih fatal, bisa-bisa ini menjadi tulisan terakhir saya – dan itu tentunya tidak lucu, hehehe (kok malah tertawa sih ^_^).

Buat kawan-kawan lain yg mempunyai koreksi, rujukan atau saran tambahan, bolehlah berbagi komentarnya. Semoga bermanfaat.

Los oídos cansados,  es producto de una enfermedad llamada el Mèniere, ésta es producida por la autoexigencia desmedida y el estrés, generando un trastorno que  produce tal fatiga a nuestro órgano auditivo…

Esta enfermedad  afecta al oído interno provocando un dolor insoportable ya que se alteran los líquidos internos localizados en esta zona.  

La enfermedad suele presentarse con zumbidos, con una sensación de oídos tapados y constantes mareos, en la mayoría de los casos se presenta en un solo oído pero en un 30% afecta a ambos.

Los ataques de  de esta enfermedad son ocasionales, al inicio son de una a dos veces al año y si no es tratada a tiempo con un otorrino  puede hacerse más frecuente (tratamiento semanal). 

La mayorías de la mujeres son afectadas con esta enfermedad. No hay que preocuparse, esta tiene su cura, que consiste en un cambio de hábito alimentario y medicaciones específicas. 

We all know how low salt diets help a lot of Meniers Disease patients. So it is very important to fully scrutinize the “Nutritional Information” of the foods you buy and search for those with low sodium levels.

This site about Meniers Disease I found recently pointed out that sometimes this information is based on very little serving portions, and that actually you need to consider the full amount of food that you would probably eat.

It also has a VERY long list of different foods and their sodium level. I stopped counting after 200 entries! So if you are suffering from Meniers Disease go and check it out.

Hope this helps.

Meniers Disease, still a cure less disease, is being heavily researched through out the years in the search of its cause. People who have been diagnosed with Menier’s disease suffer from a variety of symptoms including: vertigo, hearing loss, tinnitus (a load sound in the ear), sensation of fullness in the ear and in some cases sudden falls. It estimated that over 600,000 people suffer from Melniers in the US and that tens of thousands are diagnosed each year.

The traditional research focused on the labyrinth, an inner ear part. Scientists studied how fluid composition and movement in the labyrinth affect hearing and balance. Their conclusion was that a swelling or even a rapture in the labyrinth, causes a change in the ear’s liquids volume and leads to Meniers symptoms. This swelling condition is called endolymphtic hydrops.

However, the following statistics should raise questions about the connection between hydrops and Meniers, even if you are not a scientist. It seems that hydrops is not found in all people with Meniers Disease. And out of all the autopsies studies done, hydrops was found in 6% of the cases in people who did not suffer from Meniers Disease. Compare that with only 0.2% of the population who do have the disease. So obviously hydrops might have a connection to Meniers but is either not a direct cause of or not the only cause.

Some research suggests immune diseases may contribute to a substantial percentage of Menieres disease, or different types of viruses, but there is still not enough evidence to support that. Head injuries can definitely cause changes in the inner ear, but that cannot explain the situation of other people with Meniers. Allergies are often associated with Meniers but since this approach matches the more traditional hydrops theory, it might needs revision.

All these different ideas put together can suggest that Meniers Disease appears to be the final common pathway that the inner ear responds to nearly any injury, and that Meniers Disease has many separate causes. Hopefully research will be able to track each and every one of them.

Sources and more information:

http://www.entnet.org/healthinfo/balance/meniere.cfm

http://www.nidcd.nih.gov/health/balance/meniere.asp

http://www.dizziness-and-balance.com/disorders/menieres/men_eti.html

karōshi - ”death by …”

Legenden des Erfolgs und Wirtschaftswunder – während Japan zu einer globalen Wirtschaftmacht wurde, sind Best Practices und erfolgreichste Managementmethoden auf weltweite Beachtung gestossen.

Japanischer Fleiss und Disziplin kombiniert mit durchschlagender Innovationskraft und Technologie brachten Japanische Unternehmen an die Weltspitze und lernte Amerikanischer und Europäischer Konkurrenz das Fürchten.

Wir sind mit Japanischen High Potentials in Kontakt – nichtsahnend sind wir auf unheimliche Abgründe des Japanischen Wirtschaftswunders gestossen.

Für die meisten im Goldsaga Umfeld ist selbstverständlich, dass auch in der Schweiz der eine oder andere Erfolg bitter erkämpft werden muss, sei dies bei Prüfungsmarathons der Eliteuniversitäten oder Special Assignments in Industrie, Beratung und Services.

Konkrete Fälle zeigen – dies stehen in keinem Vergleich zu Japanischen Praktiken! Japanischen Universitäten stellen übermenschliche Arbeitsbelastungen an Studenten. Diese sind in der Regel durch Vorlesungen, Assignments und Prüfungen so extrem ausgelastet, dass 2 bis 4 Stunden Schlaf pro Nacht ausreichen müssen.

Für Japanische Management Studentinnen gilt es als absolut normal, einen Artikel über EU Security and Defence Policy von 2 bis 6 Uhr morgens ins Japanische zu übersetzen.

Die Konsequenzen sind äusserst beunruhigend:

 ”well, I had meniere’s before and mom has it and i was really busy and stressed so i guess that was why i got it”

..und werden sträflich verharmlost:

“meniere’s or gastroenteritis or gastric ulceration, I just don’t wanna go to the doctor”

Weitere Quellen (Q1, Q2) berichten von alarmierenden Zuständen.

Karōshi - Tod durch Überarbeitung- ist weit verbreitet und tritt in den verschiedensten Formen auf. Die Todesstatistik ist erschreckend.

Treibe Deinen Erfolg ohne Karõshi und sensibilisiere auch Du mit “karõshi by goldsaga”: Ladies, Ladies and Gents

English Version:

karōshi – “death by …”

Legends of success and economic miracle - while Japan became a global economical power best practices and outstanding management methods attracted interest worldwide. 

The hard working Japanese attitude and discipline combined with break through innovative power and technology drove Japanese companies amongst the most successful ones.

We are in contact with Japanese High Potentials – not having suspected, we have encountered terrific insights of the economic miracle.

For most people in the goldsaga sphere it is well known, that also in Switzerland for one or the other success you have to work extremely hard. Take as an example the marathon like exam sessions of the Elite Universities or Special Assignments in Industry, Consulting and Service firms.

Life cases show – compared to that Japanese practicalities are totally out of all proportions! Japanese universities put superhuman work loads on their students. On a regular bases students are burdened with lectures, assignments and exams in such an extreme manner, that 2 to 4 hours sleep per night has to do the job.

For Japanese management students it’s absolutely common to translate an essay about EU Security and Defence Policy from 2 to 6 a.m.

The consequences are disturbing:

“well, I had meniere’s before and mom has it and i was really busy and stressed so i guess that was why i got it”

..and are played down:

“meniere’s or gastroenteritis or gastric ulceration, I just don’t wanna go to the doctor”

Further sources (Q1, Q2) report alarming conditions.

Karōshi – death by overwork - is widely common and appears in various forms. The death statistics are horrific.

Drive your own success without Karõshi and make people aware with ”karõshi by goldsaga”: Ladies, Ladies and Gents