Now YOU Can Connect With MENIERE’S AUSTRALIA

Meniere’s Australia (MA) has recently established its social media, volunteering & fundraising network to better connect and support those living with vestibular disorders (specifically Ménière’s disease).

MENIERE’S AUSTRALIA

As you may know, Meniere’s Australia (MA) is a national non-profit, non-government organisation that supports those living with Meniere’s disease and other vestibular conditions.

MA membership is open to Australian Pension/Health Card holders, Individuals, Health Professionals & Organisations. International memberships are also available. In the future, some of the following social media websites will supply content exclusive to MA members. So it pays to join or renew your MA membership for access in all areas. To find out more check out and JOIN Meniere's Australia

You can now connect with Meniere’s Australia via the following websites:

·         Facebook

·         LinkedIn

·         Twitter

·         YouTube

·         Skype

·         Pimp My Cause

·         GiveNow

·         Everyday Hero

·         Charities Aid Foundation (CAF)

 Here’s how…

SOCIAL MEDIA

FACEBOOK

If you have a Facebook profile you can interact with other People, Companies & Groups on Facebook. Anybody with a Facebook profile can LIKE the company page however in the future only MA members will be able to FRIEND Meniere’s Aust or JOIN the Meniere’s Australia (MA) Support Group.

COMPANY

Meniere’s Australia Company Page

You can LIKE the Meniere’s Australia company page which will be added Meniere’s Australia updates to your Facebook news feed.

Meniere's Australia page on Facebook

GROUP

Meniere’s Australia (MA) Support Group

You can request to JOIN the Meniere’s Australia (MA) Support Group and interact with other MA members and people interested in Meniere’s disease & other vestibular disorders.

Meniere’s Australia (MA) Support Group on Facebook

LINKEDIN

If you have a LinkedIn profile you can interact with other People, Companies & Groups on LinkedIn.

PEOPLE

Meniere’s Aust

You can request to JOIN the network of Meniere’s Aust (the individual admin profile) for Meniere’s Australia. To join the network, login to LinkedIn and search "Meniere's Aust" in PEOPLE. 

Go to LinkedIn and search Meniere's Aust in PEOPLE

Meniere’s Aust is managing the Meniere’s Australia company page & MENIERE’S AUSTRALIA Meniere’s & Vestibular Professional Group (MVPG).

COMPANIES

Meniere’s Australia Company Page

You can FOLLOW the Meniere’s Australia company page for the latest professional updates, job vacancies, events, as well as info on products & services.

Meniere’s Australia company page on LinkedIn

GROUPS

MENIERE’S AUSTRALIA Meniere’s & Vestibular Professional Group (MVPG)

If you are a professional from one of the listed disciplines you can JOIN the MENIERE’S AUSTRALIA Meniere’s & Vestibular Professional Group (MVPG).

This group was created to better facilitate the sharing of knowledge regarding Meniere’s disease & other vestibular disorders. Members are encouraged to contribute information on medical articles, trials, research and other techniques from around the globe.

MA invite professionals from the following disciplines:
- Audiology
- ENT
- Otology
- Neurotology
- Neuroscience (specifically Computational Systems)
- Psychology (specifically Cognitive Behaviour & Mindfulness)
- Psychoneuroimmunology
- Biology (with interests in Cellular levels & Ion Channels)
- Pharmacy
- Immunology (specifically with interest in Autoimmunity)
- Virology (specifically with interest in Herpesviruses)
- Physiotherapy
- Osteopathy
- Vestibular Rehabilitation Therapy
- Alternative Therapies (such as Acupuncture) 

- Foundations

By taking a multi-disciplinarian approach, MA can work with other professionals to find better solutions for the treatment of Meniere’s disease and other vestibular disorders. 

MENIERE'S AUSTRALIA Meniere's Vestibular Professional Group (MVPG) on LinkedIn

TWITTER

You don’t need to have a Twitter profile to view TWEETS from Meniere’s Australia. You can just go to their Twitter page @MeniereAust. However if you want to get all the latest tweets delivered straight to you or you want to interact with Meniere’s Australia, then you will need to FOLLOW them @MeniereAust.

Meniere's Australia on Twitter

YOUTUBE

You don’t need a YouTube profile to view the Meniere’s Australia (MA) channel. Here MA will be uploading original videos (including interviews, seminars and possibly MA regional meetings) and liking selected videos from other channels. At a later date, MA may make original videos available via subscription only to MA members.

Meniere's Australia channel on YouTube

SKYPE

If you have a Skype profile (and free Skype software installed) you can receive & send free phone calls to Meniere’s Australia anywhere in the world (pending internet access & online availability ) by REQUESTING the Skype name menieresaustralia be added to your contacts. (Note: Purchasing Skype credit gives users more connection options. See Skype website for more info.)

In the future MA will trial Skype for group video calling and possibly conference calls. This will be particularly beneficial to MA members who are unable to attend regional MA meetings (due to distance or illness).

Even if you don’t have a video on your computer, tablet or smart phone you can still make and receive calls with Skype, all you need are working speakers, microphone & internet connection. It’s easy.

Go to Skype and add menieresaustralia to your contacts

VOLUNTEERING & FUNDRAISING

PIMP MY CAUSE

Pimp My Cause brings together worthwhile causes with talented marketers.

If you’re looking to gain new experience, make new connections, showcase your talent and give something back then Meniere's Australia NEEDS YOU!

If you would like to help people with vestibular disorders and have marketing skills in any of the following areas, then MA would love to hear from you. Desirable skills inc: Advertising, Branding, Business Development, Concept Development, Customer Insight, Graphic Design, Marketing, Networking, Photography, PR, SEO, Social Media Marketing, Strategic Marketing, Videography or Web Development.

Check out the Meniere’s Australia profile on Pimp My Cause for more details.

GIVENOW

GiveNow.com.au is a commission free fundraising website that allows people to GIVE to their favourite charities, such as Meniere’s Australia. Here you can make a monetary donation by giving a one off donation, a recurring donation or leaving a bequest.

When you make a donation through the commission free GiveNow website, all of your generous donation will go directly to MA. MA will use donated funds to create awareness of Meniere’s disease & other vestibular disorders, support MA members, and fund research into Meniere’s disease.

Meniere's Australia on GiveNow

EVERYDAY HERO

EverydayHero.com.au is a similar fundraising website to GiveNow however it deducts a small commission from funds raised. It you wish to make a monetary donation then MA would prefer that you use the GiveNow website listed above.

Where the Everyday Hero website excels is through its options for individuals to either create either an Event or a Hero page. Your EVENT could be a morning tea, barbeque, dinner party, physical challenge (like a fun run or trek). The possibilities are endless! As a HERO you can create your own personalised online fundraising page. You can then select Meniere’s Australia as the beneficiary of your Event or Hero page.

MA is in the process of finalising its charity page, so stay tuned as it should go live before the end of November 2012. 

Meniere's Australia page on Everyday Hero

CHARITIES AID FOUNDATION (CAF)

Charities Aid Foundation (CAF) connects corporate donors to causes that matter. If you work in Australia, ask your employer if they are part of a Workplace Giving or Matched Giving program with the Charities Aid Foundation. If they are then you can select Meniere’s Australia as your preferred charity.

WORKPLACE GIVING gives employees the opportunity to make a significant and lasting impact on the work of their preferred charity/s through a direct tax deductible donation from their pre-tax pay.

MATCHED GIVING programs provide dollar matching for employees' payroll giving donations, volunteer time, fundraising effort and/or cash donations to charities and community organisations.

Meniere's Australia on CAF

There are now many ways you can connect with Meniere’s Australia (MA) but Menieres.org.au is a great place to start. MA looks forward to connecting with you wherever you are.

DO YOU HAVE A FUNDRAISING OR AWARENESS IDEA FOR MENIERE'S AUSTRALIA? Share your brilliance here... :-)

I Am Safe: Positive Affirmations to Ease Meniere’s Dis-ease

 If you haven’t already read the following posts, you may wish to read some of them first before reading about affirmations.

Are Negative Patterns Contributing to the Manifestation of Ménière's Disease?

Ménière’s Disease: Is Psychoneuroimmunology (PNI) & Herpes the Cause?

The Power of THOUGHT

If you’ve read the above posts of mine you’ll know that I’m a strong proponent of the belief that our thoughts affect our health via the Psychoneuroimmunological Route. Overtime, consistent negative thinking impacts our brain chemistry which in turn affects our immune system which makes us more susceptible to disease.

I first heard about affirmations around 2000 from my sister who had attended a self-improvement book signing in Sydney with Louise L. Hay. Louise asserted that “your thoughts create your reality” and that “disease is dis-ease in the body”. At the time I was fairly young and reasonably healthy so I thought it an interesting concept but didn’t think much more about it until a few years later when my hearing in my left ear started to go.

I had undertaken all the tests required by my ENT [an Electrocochleography (ECochG), audiogram, CT & MRI scans] to ascertain the cause of my Cochlear Hydrops (the pre-Meniere’s Disease diagnosis), however a cause for my unilateral hearing loss could not be found. It was then that I remembered my sister saying that Louise Hay had said that hearing loss can be due to not wanting to hear something, a sort of "Don't bother me, I don’t want to hear it” reaction. So I thought to myself, “Are there things in my life that I don’t want to hear?” Absolutely.

At the time of the Cochlear Hydrops diagnosis I was under a lot of work pressure. Additionally I had become a sounding board for friends & family who were venting their unhappiness. Unhappy with their work, their relationships, their bodies, their situations, and because I saw myself as a good supportive friend I took it all in.

So thinking that these negative interactions may be affecting my health, I sent out an email to all my friends & family stating my health issue and requesting that they keep their communication with me light & positive. The email was well received and the flow of negative dialogue ceased.

Within three weeks my hearing restored completely and I didn’t have any further issues for another three years.

What I didn’t grasp at the time was that being a good friend didn’t mean being a bottomless receptacle for everyone’s gripes. As a friend I needed to learn that I could offer support within limits and boundaries, and not to personally take on their challenges. I needed to care for myself first.

When the hearing loss did occur again (three years later) I had lapsed back into old habits of trying to support everyone and not setting boundaries with friends & family, but mostly I hadn’t set limits with my work or myself. I had to take responsibility for this.

I was over-extended and financially obligated work-wise, and the GFC was making its presence known. Aside from the GFC, I had manifested this stressful environment around me. This time sending out an email wouldn’t cut it because I was the main culprit. If I had been able to send an email to myself it would have read something like this:

Dear Self,

This is an intervention. You need to start looking after yourself better. Go to bed before midnight. Don’t read work emails after 6pm. Learn to relax more. Take a holiday. Eat more often and healthier. Don’t try to fix other people. Don’t hold a grudge. Avoid hyper-vigilance. Have an outlet for frustration like walking or running. Ask for help if you need it. Be kind to yourself and set boundaries. Don’t worry so much, because everything will be all right, even if things are not as perfect as you have envisioned. It’s okay to surrender. But most importantly, whatever the future holds, you will be okay.

Love always,

Me xoxo

CHANGING YOUR THOUGHTS

Everybody reacts differently to stress. Some people get bogged down with recurring negative thoughts. You may relate to some of the following:

“I feel trapped in my job”

“I’m so in debt. How will I ever be able to pay all my bills on time?”

“I just can’t seem to lose weight”

“None of the clothes I like fit me”

“There’s nobody out there worth dating”

“I’m not happy in my relationship”

“My life isn’t going in the direction it should”

“I don’t like where I live”

“My friends aren’t supportive”

“What’s the point of anything?”

Louise Hay considers positive thoughts / affirmations to be like planting a seed in the ground.

“If you think of doing your positive affirmations, it’s like planting a seed in the ground. It’s not necessarily true at the moment but it is something you want to have be true… Little miracles start to happen. Lots of little good things happen… Your thoughts create your life; and when we can get that, we can make enormous changes.” - Louise L. Hay

Baring this in mind, what thoughts then might change the brain chemistry enough for the immune system improve, so that the symptoms & progression of Meniere’s Disease can be minimised?

I have compiled about twenty-eight (28) positive affirmations from Louise’s book “You Can Heal Your Life” that may assist those afflicted with Meniere’s Disease. (See the 28 affirmations at the end of this post.) 

Here are some of my favourites:

“Miracles happen every day. I go within to dissolve the pattern that created this, and I now accept a Divine healing. And so it is!”

“I love and approve of myself and trust the process of life. I am safe.”

“I now go beyond other people's fears and limitations. I create my life.”

“My thinking is peaceful, calm, and centred.”

“I am enthusiastic about life and filled with energy and enthusiasm.”

HOW CAN I USE AFFIRMATIONS TO MANAGE MENIERE’S DISEASE

You can use affirmations to manage the symptoms of Meniere’s Disease in two ways.

Firstly, positive affirmations can be used on a daily basis to help put the brakes on the progression Meniere’s Disease. However, like a train that is traveling at speed, Meniere’s Disease will not likely disappear after a week of positive thinking. It will take time, maybe many months, before you notice Meniere’s symptoms abating and feel the full benefit. It is like planting a seed in the ground. Initially you won’t likely see any results, however over time things will improve. (Note: Affirmations should be part of your Meniere's management plan and should not be used instead of medication and/or other prescribed therapies.)

Secondly, I have found it most helpful to mentally recite one particular affirmation at the onset of or during a Meniere’s attack. “I am safe”.

Having a Meniere’s attack is a frightening experience. Usually the longer it lasts, the more frightening it becomes as your body’s Autonomic Nervous System (ANS) kicks in, layering more horrible elements to the experience.

The Autonomic Nervous System (ANS) consists of two parts: the Sympathetic Nervous System (SNS) which is the “fight or flight” component and the Parasympathetic Nervous System (PNS) which promotes “rest & digestion”.

You may have noticed when having an acute Meniere’s attack (one which go on for hours), some or all of the following SNS or PNS sensations:

-       Heart palpitations

-       Cold, clammy hands and tingling sensations in your feet and toes

-       Feelings of warmth and cold

-       Increased sweating

-       A dry mouth

-       Diarrhea

-       Deep or shallow breathing, which may cause tightness in the chest or further dizziness or light-headedness

-       A sense of derealisation – a feeling of confusion or un-reality.

One of the best affirmations I have found to ease a Meniere’s attack and stop the ANS from going into overdrive is the following phrase:

“I am safe.”

 It’s simple, effective and easy to remember. When you next feel an attack coming on, relax and try to re-direct your mind to this one thought - “I am safe”. Keep steadily saying it in your mind like a quiet mantra. “I am safe”

Meniere attacks are horrible and it’s very easy to let it push your anxiety levels way up, but if you are in a safe place (lying on your bed or even on the floor out of harm’s way), know this. Even the worst Meniere’s attack will come to an end and you will be okay. Surrender to this knowledge and let the attack wash over you. Take your medication (anti-nausea & Valium), keep a bucket or motion sickness bag handy with a sipping water bottle, lay very still and concentrate on breathing steadily with the affirmation “I am safe”.

DO YOU HAVE AN AFFIRMATION THAT HELPS YOU MANAGE YOUR MENIERE’S DISEASE? Share your affirmation in the comment area below.

The following 3mins & 54secs could change your life. Watch the trailer to:

You Can Heal Your Life: The Movie

POSITIVE AFFIRMATIONS TO EASE MENIERE'S DISEASE

For more on Louise L Hay & affirmations go to:

http://www.louisehay.com/

Rent "You Can Heal Your Life: The Movie"

Buy “You Can Heal Your Life” the Book & DVD Box Set

Salovum & SPC-Flakes: How Antisecretory Factor (AF) Can Decrease Meniere’s Disease Vertigo

One of my wonderful readers (Kim from Cairns) asked me if I knew anything about two products that she’d heard may assist with Meniere’s Disease vertigo: Salovum & SPC-Flakes.

I must say that I’d never heard of either product, so I’ve spent the last few days extensively searching news articles, press releases, PubMed articles, IP patents & corporate websites (in languages including: Swedish, Norwegian, and English) and this is what I came up with.

It’s a lot of information, but considering how hard it was to find anything on the products, I thought it best to just get as much as possible on one page. Readers of this post will then be able to make an informed decision when considering adding either or both of these products to their Meniere’s management program.

In Brief: What are Salovum® & SPC-Flakes®?

Salovum® & SPC-Flakes® are genetically modified foods classified as “food for special medical purpose”. Both products deal with a protein called Antisecretory factor (AF) which normalizes fluid and ion transport across cell membranes in the body's cells. (Read more about Ions below.)

Salovum® is a source of protein AF in the form of the concentrated egg yolk powder B221®, while SPC-Flakes® is a specially produced oatmeal engineered to stimulate the body’s own production of protein AF.
 

What is Antisecretory Factor (AF)?

Antisecretory factor (AF) is a protein secreted in plasma and other tissue fluids in mammals with proven antisecretory and anti-inflammatory activity; its immunohistological distribution suggests a role in the immune system. The expression level and the distribution of AF protein are altered during an immunological response.

Note: If you haven’t already read my post on PNI & Herpes Viruses which discusses the immunological response and how I believe it contributes to Meniere’s Disease, I recommend you read it. Ménière’s Disease: Is Psychoneuroimmunology (PNI) & Herpes the Cause?

Antisecretory factor (AF) (or ASF as it was abbreviated in the 1980’s) was discovered by Swedish Microbiologists / Immunologists Stefan Lange & Ivar Lönnroth in the early 1980’s. Most of these early studies focused on cholera associated diarrhoea, as well as post-weaning diarrhoea in piglets.

Some of AF’s uses are for conditions caused by a traumatic, auto-immune or degenerative disorders. 

(See one of Lantmännen AS-Faktor AB’s patent applications for AF.)

AF is also claimed by the patent owner to be useful for:

“…inducing improved rescue of injured or diseased nervous tissue, proliferation, apoptosis, differentiation and/or migration of an embryonic stem cell, adult stem cell, progenitor Cell and/or a cell derived from a stem cell or progenitor cell, for treating a condition characterised by or associated with loss and/or Gain of cells. In a preferred embodiment, the condition is a neurotrauma or a condition or disease of the CNS and/or PNS and/or ANS, for example, Alzheimer’s disease.”

Note:

I think it’s interesting that Antisecretory factor (AF) can inhibit diarrhoea. A number of people I have met who have Meniere’s Disease have stated that they have experienced diarrhoea in conjunction with a Meniere’s attack. On a few occasions I have had the need to stagger/run to the restroom during acute Meniere attacks to deal with vomiting & diarrhoea.

Most ENTs &GPs are not aware that diarrhoea can be a symptom during a Meniere’s attack. Once I was admitted to a major public hospital emergency room in Brisbane (Queensland) during an acute Meniere’s attack (4+ hours). I informed the young doctor of my symptoms. Upon hearing that one of the symptoms was diarrhoea he promptly dismissed my claim that I was having a Meniere’s attack and foolishly diagnosed me with food poisoning, saying that diarrhoea is not a symptom of Meniere’s attacks. This was about eight months after my official Meniere’s Disease diagnosis, so I knew the difference between a Meniere’s attack & food poisoning. That was the first & last time I went to that hospital for treatment.

Who Makes Salovum® & SPC-Flakes®?

Salovum® & SPC-Flakes® are registered trademarks of a Swedish company, Lantmännen AS-Faktor AB.

According to Lantmännen AS-Faktor’s website, they develop and produce highly refined products from Swedish farms. Some of the research and development is based on the Swedish discovery of a protein called AF. The company has operations in the areas of medical food and special animal feeds. The company also engages in extensive research in pharmaceutical development with several high-profile Swedish universities and researchers.

Products developed by Lantmännen AS-Faktor include Trygge, SPC-Flakes, Magiform and Salovum.

Many of the company's products are patent-protected, for such purposes as for the use of malted cereals or egg yolk for producing a food or medical food for the treatment and/or prevention of a condition associated with or characterised by a pathological loss and/or gain and/or rescue of nervous tissue.

See the AS-Faktor website and the Lantmännen AS-Faktor AB website

What is Salovum®?

Salovum® egg yolk powder contains protein with antisecretory properties in a much higher (500 times) concentration than found in normal hen eggs. This is achieved by feeding hens with specially-processed cereals, capable of inducing production of protein with antisecretory properties in the yolk, from which an egg powder is produced.

Salovum® can/has:

·         be used in the acute phase or as the beginning treatment of patients with a presumed low amount of AF.

·         normalize fluid flow. This is of clinical significance within bowel diseases, diarrhea, Mèniére and Mastitis.

·         also been shown to have an anti-inflammatory effect which was seen in studies of inflammatory bowel disease (IBD) like Colitis Ulcerosa and Crohn’s disease.

Although Salovum appears to be safe for short-term studies, I could not find any information on potentially long-term adverse effects.

Description: Food for special purposes.

Application: Meniere and secretory bowel disorders.

Important: Salovum should be applied in consultation with your doctor or dietician. Recommended for children over 1 year and adults. Must not be given parenterally.

Dosage: 1 serving 3 times daily or as your doctor's instructions. The recommended dose should not be exceeded.

Preparation: Salvoum dissolved in cold liquid / juice. Best results are obtained with the juice. Salovum can be sprinkled on bread or stirred into an omelette.

Warning: People with egg allergies should avoid Salovum.

Further information: Contact your doctor or dietician.

Packaging: 1 pack of 25 sachets x 4 g each

Excerpt from:

CLINICAL STUDIES AND CASE REPORTS:

The AF Protein a Clinical Innovation of Endogenous Origin

Treating Mb Ménière with Egg yolk powder B221®

As the study above showed, there are some patients that are non-responders when treated with AF inducing specially processed cereals (SPC). Due to the positive results of Egg yolk powder B221® in the treatment of secretory diarrhoea, it was tested on Ménière’s disease as well.

AF-inducing SPC was tested during a two month period on a 67 year old woman with a thirty year history of Mb Ménière. She had frequent attacks lasting for 8 hours up to three days with nausea, vertigo, diarrhoea and vomiting. When the SPC diet did not improve neither the duration of the attacks nor the severity, she was given Egg yolk powder B221® at a dose of 2 g five times daily to see if this exogenous administration of AF in high concentrations could offer positive clinical results.

On day 18 of the treatment the patient was completely relieved of her symptoms and her Ménière status was improved from 6 to 1 (American Academy of Otolaryngology). After six months of symptomatic relief the patient lowered the dosage of Egg yolk powder B221® with the result that her attacks with rotatory vertigo returned. Returning to the original dosage level led to immediate improvement without the need for further medication. No improvement, however, could be seen on her right-sided hearing impairment.

The results show that patients who do not respond to treatment with AF-inducing cereals can be favourably treated with Egg yolk powder B221®. To stimulate the body’s own production of AF it is likely that an introduction of AF-inducing cereals in connection with or as a follow-up to Egg yolk powder B221® treatment will be found valuable.

Hanner, Jennische and Lange, Antisecretory Factor: A clinical innovation in Ménière’s disease?, Acta Otolaryngol, 2003; 123:779-780

What are SPC-Flakes®?

SPC-Flakes® (specially processed cereals) are specially produced oatmeal made with a unique and patented production method. SPC-Flakes® are used as  ”maintenance” treatment to stimulate the body’s own production of protein AF.


In 1998 the Sahlgrenska University Hospital undertook a study of SPC-Flakes on patients with Meniere’s Disease with successful results (see pages 6 & 7 of the PDF).  

The AF protein - A clinical innovation of endogenous origin PDF

SPC-Flakes® can/have:

·         normalize fluid flow. This is of clinical significance within bowel diseases, diarrhea, Mèniére and Mastitis.

·         also been shown to have an anti-inflammatory effect which was seen in studies of inflammatory bowel disease (IBD) like Colitis Ulcerosa and Crohn’s disease, rheumatoid arthritis and mastitis.

SPC Flakes should be used in consultation with a physician or clinical nutritional physiologist.

Mechanism of action: Stimulates the body to increase production of AF (Antisecretory factor), a protein that normalizes fluid and ion transport across cell membranes in the body's cells.

Dosage: 1g/kg body weight or the physician's recommendations. (Therefore a person weighing 80kg might take 80gms of SPC-Flakes. Should be used (2 to 3 times) a day. 1 ml of SPC-Flakes is equivalent to approx. 50 g

How do you eat SPC-Flakes:   SPC-Flakes can be eaten plain, for instance buttermilk or yoghurt. SPC-Flakes may be cooked like porridge: 1 cup SPC-Flakes boiled for 3 minutes with water and a pinch of salt. Let the porridge sit for a few minutes before it is eaten, add raisins and/or cinnamon for taste. Can be used in baking.

Warning:  Must be eaten with caution in gluten allergies (see more information on a gluten free option below). 

More information: Contact your doctor or clinical nutritional physiologist.

Excerpt from:

CLINICAL STUDIES AND CASE REPORTS:

The AF Protein a Clinical Innovation of Endogenous Origin

SPC-treatment of Ménière’s disease

Since the AF products have such favourable results in secretory diseases of the gut, it was hypothesised if this could also be applied to other conditions where fluid imbalances are of importance or can be suspected.

After several pilot studies a trial was performed at Sahlgrenska University Hospital under the guidance of Per Hanner. The aim of the study was to examine if AF could be induced in cases of pathologically elevated pressure of the inner ear and to study if stimulated AF production can lessen the clinical symptoms of Mb Ménière patients.

24 patients with Mb Ménière, with a duration between ten months and thirty years, were included in the study. The patients received, in addition to their regular medication, a SPC-diet at a dosage of 1 g/kg body weight a day, for 2-4 weeks. The patients kept a diary over their subjective and auditive symptoms, and frequency, duration and characteristics of vertigo. Baseline tone and speech audiometry and neurological status was determined as well as AF plasma level before and after the treatment period.

The concentration of AF in plasma varied between 0-0,6 units before treatment and 0-1,7 units after treatment. 83% of the patients showed an increase of AF above 0,5 units after treatment, the level at which clinical improvement of secretory diarrhoea has been shown in previous studies. In 17% of the patients, little or no increase of AF was seen and they did not experience any improvement of the clinical symptoms either. In 29% of the patients a significant increase of AF was registered but without clinical response.

In 12,5% of the patients hearing ability returned to normal levels and vertigo was completely eradica-ted. In 54% vertigo was improved. The improvements noted ranged from complete remission to remaining light and diffuse feelings of dizziness without previous attacks of rotatory vertigo.

Symptoms were either reduced or in complete remission in more than half of the patients with severe Ménière’s disease who were treated with a simple, inexpensive and well tolerated treatment. Some of the patients, however, did not seem to have the ability to produce AF. They may need AF inducing cereals in higher concentrations or for longer treatment duration.

Hanner, Jennische, Lange, Lönnroth and Wahlström, Increased antisecretory factor reduces vertigo in patients with Ménière’s disease: a pilot study, Hearing Research, 2004; 4803:1-6

Can People with Gluten Intolerances Eat SPC-Flakes®?

No, however Lantmännen AS-Faktor has joined forces with Svalöf Weibull (SW) and Lantmännen Mills to formulate a process chain which allows rolled oats to be produced without the addition of wheat, rye or corn, in order to cater for people with a gluten intolerance. These 100% rolled oats will be sold by Semper - one of the largest players in gluten-free products in Sweden.

Some IKEA stores stock Semper food products, so next time you’re at an IKEA (the small goods section outside the checkout area) ask if they stock an AF SPC 100% oat product by Semper. They may not know what you’re talking about but it doesn’t hurt to ask.

I’m not sure if this link is Semper’s AF SPC 100% oat product, but you can always email the company to ask. Semper Gluten Free Products

Where Can You Buy Salovum® & SPC-Flakes®?

I have only found two online stockist of Salovum® & SPC-Flakes®. POA Pharma Scandinavia and an independent distributor.

Considering the cost of the products & their weight, I think that Salovum® would be the most cost effective product for international residents to start with. Salovum® offers more “bang for the buck” because it is more highly concentrated. If you live outside of Scandinavia, you might need to order 2 or 3 boxes of SPC-Flakes® just to get you through two weeks, and I’m sure international postage & handling costs would make this an expensive endeavour.

POA Pharma Scandinavia

Buy Salovum®

25 x 4gm sachets

120,00 Euro. (currently AUD $156) Shipping expenses will be added. 
Note: The above study used 10gms daily (2gms x 5 times). Based on this you might need 300gms (3 boxes) to try the product for one month. It's not cheap, but it could make all the difference if you've exhausted other Meniere's management options.

Buy SPC-Flakes®

450 g box 

12,00 Euro. (currently AUD $15.60) Shipping expenses will be added. 
Note: The above study used 1gm per 1kg of body weight daily. Based on this an 80kg person woiuld need 80gms daily. Over 2 weeks 2.5 boxes would be needed as there would only be 5.5 servings per box for a person weighing 80kg. This would be cheaper to try than the Salovum (although postage & handling would likely be more expensive due to the bulk of the product), however it would likely be less effective. Still, it's an option.

Independent Distributor

Note: Use the Google translation function to view these pages in English.

Buy Salovum®

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Buy SPC-Flakes®

Norwegian Kr. 99.00 (currently AUD $16.85)

MORE INFORMATION:

Product Info Contacts:

POA Pharma Scandinavia

Phone: +46 31 788 0599

Email:  info@poaab.com

AS-Faktor

Email: info@as-faktor.se

Lantmännen AS-Faktor

Email: konsumentkontakt@ lantmannen.com

Semper

Email: KONSUMENTKONTAKT@SEMPER.SE

What’s an Ion & What’s its Role in the Inner Ear?

An Ion is an atom or molecule in which the total number of electrons is not equal to the total number of protons, giving it a net positive or negative electrical charge. Ions allow a current to pass between electrodes in a solution when an electric field is applied.

Water is comprised primarily by the following ions:

Cations (positively charged Ions) – Calcium (Ca²⁺), Magnesium (Mg²⁺), Sodium (Na⁺) & Potassium (K⁺)

Anions (negatively charged Ions) – Bicarbonate (HCO₃^-) / Carbonate (CO₃^2-), Sulphate (SO₄²), Chloride (Cl^-)

Those with Meniere’s Disease reading this will recognise the mention of Sodium & Potassium, as these ions make up the Perilymph and Endolymph that regulate the electrochemical impulses of the inner ear hair cells.

Sodium (Na+) is the main Cation in Perilymph. Potassium (K+) is the main Cation in Endolymph. The electric potential of Endolymph is ~80-90 mV more positive than Perilymph due to a higher concentration of Potassium compared to Sodium .

For more on Ions read this Wikipedia page HERE

PubMed Articles

Antisecretory Factor (AF)

2003

Antisecretory factor: a clinical innovation in Ménière's disease?

European Patent for NOVEL USE OF ANTISECRETORY FACTOR


Antisecretory factor-inducing therapy improves the clinical outcome in patients with Meniere’s disease.pdf


ANTISECRETORY FACTOR AND ITS BIOLOGICAL ACTIVITIES PDF

SPC-Flakes®

2010

Antisecretory factor as a potential health-promoting molecule in man and animals.

Italy

2010

Antisecretory factor-inducing therapy improves the clinical outcome in patients with Ménière's disease.

Sweden

Salovum®

2011

Salovum® Egg Yolk Containing Antisecretory Factor As an Adjunct Therapy in Severe Cholera in Adult Males: A Pilot Study

Bangladesh & Switzerland

2007

B 221, a medical food containing antisecretory factor reduces child diarrhoea: a placebo controlled trial.

Pakistan

 Disclaimer

This website contains general information about medical conditions and treatments. The information is not advice, and should not be treated as such. The medical information on this website is provided without any representations or warranties, express or implied. Beatrice T via the Inner Ear Journey blog makes no representations or warranties in relation to the medical information on this website. Without prejudice to the generality of the foregoing paragraph, Beatrice T via the Inner Ear Journey blog does not warrant that:

- the medical information on this website will be constantly available, or available at all; or

- the medical information on this website is complete, true, accurate, up-to-date, or non-misleading.

You must not rely on the information in this document as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. If you think you may be suffering from any medical condition you should seek immediately medical attention.

You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this website. Nothing in this medical disclaimer will limit any of our liabilities in any way that is not permitted under applicable law, or exclude any of our liabilities that may not be excluded under applicable law.

HAVE YOU USED SALOVUM &/OR SPC-FLAKES TO CONTROL YOUR MENIERE’S DISEASE? If so, share your comments below.