OTO 104 for Meniere’s disease – a miracle drug or just another steroid?
Table of Contents
The Mirror Newspaper reported in November 2015 about the case of an individual named Colin Breeze from the UK who was suffering from Meniere’s Disease. Colin received an experimental series of steroid injections with new a drug called OTO-104. OTO 104 is a continual-exposure formulation of the steroid dexamethasone.
After 3 injections over several months, Colin went from vomiting for up to seven hours a day and not being able to lift his head to now being able to enjoy life again vertigo free.
Although the Mirror ‘tabloid’ typically used the sensational headlines “Vertigo sufferers offered OTO-104 ‘miracle drug’ hope as patients notice instant improvement”, the treating doctors at the Norfolk and Norwich University Hospital were more cautious, saying “We can’t really say it’s a miracle cure at the moment because we haven’t finished the stage three of the trial so we do not know if Colin’s recovery was just by chance or whether it was down to the drug but the results are very encouraging.”
The thick steroid substance is injected into the ear and slowly dissolves over a period of months, helping alleviate the disease’s symptoms. Oddly the report also stated that the drug had not been tested on people suffering from dizziness which of course all Meniere’s sufferers experience daily.
Colin said, “It’s the most debilitating thing I’ve ever experienced in my life, the feeling was horrendous.
“After each attack I was exhausted and had to have two to three days off work to recuperate.
“I thought this is it, I’m going to lose my job and life. I’d adjusted myself to accept that the rest of my life was going to be a misery.”
If you suffer from the symptoms of “Meniere’s Disease” then you will know exactly what Colin means.
Anything that stops the debilitating symptom of vertigo must be a good thing. Although this is perhaps an exciting prospect for Meniere’s sufferers, as we repeat ad nauseam on Menieres-Help.Com, to rid yourself of Meniere’s and get your life back permanently you need to get to your root cause and eliminate it from your life.
This can be done, has been done by countless sufferers and is being done all the time. We know because we have experienced both the horrors this condition has to offer and that feeling of being reborn after getting our life back through dietary adjustments supported by quality supplements then finding and dealing with our individual root causes and eliminating them from our life. Thousands of emails from sufferers are also testament to this truth.
Without taking anything away from Colin’s wonderful news, we feel at Menieres Help that drugs, steroids and surgery are not always the best choice when you can overcome Meniere’s naturally and not only get your life back but live very healthily as a result.
OTO 104 for Meniere’s and other steroids
Steroids and other destructive procedures such as Ototoxic Antibiotics like Gentamicin and Streptomycin have been used for years with mixed results. Often there is success at first, only for the symptoms to return at a later date and in the meantime destroying nerves within the inner ear and possibly having nasty side effects.
Ototoxic literally means toxic to the ear.
As of November 2015 Colin had gone 200 days symptoms free in terms of vertigo. It remains to be seen as to whether this drug will be a major success but it is another option for sufferers to consider.
The vast majority of people who take the natural routes talked about on Menieres-Help.Com and in Managing Meniere’s Disease not only live symptom free in terms of vertigo, dizziness and tinnitus but many actually regain their hearing. This is something that is usually thought impossible by ENT doctors and audiologist.
A very noteworthy point about the steroid dexamethasone is that it is used primarily to ‘treat’ inflammation in conditions such as allergies, skin conditions, ulcerative colitis, arthritis and breathing disorders.
The main focus of Menieres Help for over a decade has been supporting our immune system so it is healthy enough to deal with inflammation within the ear (in more recent years the focus has been on eliminating the root cause of that inflammation).
We have often experienced negativity from some quarters regarding the insistence that inflammation needs to be dealt with despite the thousands that now live symptom free as a result, yet in recent times this seems to also be the focus of other clinical drug trials for Meniere’s including SPI-1005.
According to Drugs.Com the common side effects of oral dexamethasone include:
swelling of the fingers, hands, feet, or lower legs
trouble thinking, speaking, or walking
troubled breathing at rest
weight gain
Other possible side effects are:
Abdominal cramping and/or burning (severe)
abdominal pain
backache
bloody, black, or tarry stools
cough or hoarseness
darkening of skin
decrease in height
decreased vision
diarrhea
dry mouth
eye pain
eye tearing
facial hair growth in females
fainting
fatigue
fever or chills
flushed, dry skin
fractures
fruit-like breath odor
full or round face, neck, or trunk
heartburn and/or indigestion (severe and continuous)
increased hunger
increased thirst
increased urination
loss of appetite
loss of sexual desire or ability
lower back or side pain
menstrual irregularities
muscle pain or tenderness
muscle wasting or weakness
nausea
pain in back, ribs, arms, or legs
painful or difficult urination
skin rash
sleeplessness
sweating
trouble healing
trouble sleeping
unexplained weight loss
unusual tiredness or weakness
vision changes
vomiting
vomiting of material that looks like coffee grounds
Abnormal fat deposits on the face, neck, and trunk
acne
dry scalp
lightening of normal skin color
red face
reddish purple lines on the arms, face, legs, trunk, or groin
swelling of the stomach area
thinning of the scalp hair
Although these side effects are from taking the steroid orally, clearly having such an unnatural substance in the body has risks. Given the choice of such steroids inside your body or strengthening your immune system naturally and removing the root cause of your symptoms, therefore allowing your body to function as it should, which one would you choose?
What ever helps Menieres sufferers at least find relief is a good thing but it is disconcerting and makes one cynical when money is always found for new pharmaceuticals to ‘treat’ health condition but never to actually find cures.
Whenever there is a new drug trial just google it and you will find it all over business and money sites. That really tells you all you need to know in terms of motive and ethics and therefore the long term effectiveness and safety of many drugs.
Have you had any experiences with steroid injections for meniere’s? Tell us all about it in the comments box below or email Mike at meniereshelp@gmail.com
New Drug for Meniere’s Disease? Clinical trials starting soon.
According to a press release from Sound Pharmaceuticals (SPI) on January 5th 2016, new trials are set to begin to test the drug SPI-1005 for Meniere’s Disease.
SPI-1005 is an investigational drug that contains an orally available small molecule that mimics and induces Glutathione Peroxidase (GPx) activity. GPx1 activity is diminished after ototoxic insults that cause sensorineural hearing loss and tinnitus.
In pre-clinical studies, SPI-1005 has been shown to prevent and treat different types of hearing loss that involve auditory hair cells and neurons. In a recent Phase 2 clinical study, SPI-1005 was shown to prevent sensorineural hearing loss due to noise.
“Based on the anti-inflammatory activity of SPI-1005, we hope that it will be of benefit in Meniere’s disease,” said Jonathan Kil, MD, CEO.
It is interesting that the focus of this study is based on the “anti-inflammatory” properties of this drug. We at Menieres-Help.Com and others around the world have been focused on dealing with the inflammation within the ear for over 12 years.To understand why inflammation is so important to Meniere’s sufferers click here.
The difference is we concentrate on allowing the body to deal with the inflammation naturally by making sure the immune system is healthy and strong enough to do so. A healthy organic wholefood diet supported by quality nutritional supplements has been successful in allowing sufferers to reduce their symptoms significantly for well over a decade.
In addition, this method results in general health being much better and there are no possibilities of any side effects from synthetic drugs occurring over time.
Moreover, and more importantly our approach has been to identify and deal with the root cause(s) of the inflammation causing the symptoms and to eliminate that cause from our life. Learn more about this by clicking here.
Any trials that may benefit Meniere’s sufferers are always welcome but as always it seems the focus is to “treat” the symptoms rather than find the cure by identifying the root cause. This is the plight plaguing the medical world and therefore patients in a corporate profit driven society. Find the root cause and eliminate it and it is game over but by treating conditions with drugs the big corporate pharmaceutical drug manufacturers get recurring income from millions of prescriptions that can be continued for decades if not the rest of a patient’s life depending on the condition.
Quite simply and to be brutally honest, there is no money in finding cures even though cures for many conditions are available, almost all of which are natural and drive from common sense, understanding how the body works and the importance of what we eat and do not eat, our environment, metabolism and internal organ health and muscular skeletal condition.
Audiologist proposes new method to diagnose Meniere’s disease
Table of Contents
The diagnosis of Meniere’s Disease is almost a misnomer for the simple reason Meniere’s is an idiopathic condition and diagnosis involves basically recording the symptoms the sufferer has and discounting anything more sinister such as tumors.
A short extract from the link above explains this as such:
Diagnosis of Meniere’s is really confirming only that you have a set of symptoms that the doctors do no know the origin of. The standard acceptance of Meniere’s is what the medical profession quote as being a “triad of symptoms”. Those being: Dizziness, tinnitus and hearing loss.
If you only have one of these symptoms usually the doctors will not diagnose Meniere’s. Dizziness and tinnitus have many causes. Several of which can be side effects of prescription drugs. What the doctors are actually diagnosing you with is an idiopathic set of symptoms that are grouped together under the label “Meniere’s”.
No clinically proven definitive cause has been accepted yet, but as discussed elsewhere on this site, everything has a cause. Nothing happens for no reason and the cause or causes for your symptoms can be found and dealt with. This takes some effort on your part because once you have been diagnosed, your doctor is telling you he or she doesn’t know your cause and will only attempt to “treat” the symptoms. You can find your cause(s) and deal with them but will have to look elsewhere for professional help. Click here for more details on this.
Because the exact cause of your symptoms are unknown before diagnosis, it is really important to get a correct diagnosis. In order to rule out other problems, a very detailed history and physical examination will be required. Several tests using technology will also be carried out.
Diagnosis of Meniere’s disease – New method?
Dr. Wafaa Kaf, professor of audiology in the communication sciences and disorders department at Missouri State University is seeking to improve diagnosis of the condition.
“There are two challenges with this disease,” said Kaf. “We can’t diagnose it as early as we want because current diagnosis is only based on clinical reports from the patient without the use of objective measures to confirm clinical diagnosis, and thus appropriate treatment isn’t offered soon enough. In addition, there is no known definite cause for it.”
As an audiologist she comes from a perspective of concentrating on the hearing, or loss of it. She states: “Meniere’s disease is a common disease of the inner ear affecting adults in their fourth decade of life. The disease is believed to be due to an abnormal increase in the amount of the inner ear fluid. If left untreated, this progressive disease may lead to deafness.”
There are two problems with these “assumptions” that conflict with the work we have done at Meniere’s Help for 12 years. Firstly, although it may be that the majority of people develop the symptoms of Meniere’s in midlife, we know it can strike at anytime and we have dealt with people as young as preteens or people in their old age. Meniere’s doesn’t seem to discriminate according to age or sex.
Secondly, “treating” the symptoms is the same old mindset that has gotten nowhere significant since it was first named in the 19th century. Without taking deafness lightly in any way, it can become the least of a sufferers worries once the full blown vertigo and drop attacks set in and the sufferer has live constantly with dizziness, brain fog, exhaustion and earsplitting tinnitus etc.
She also states above that “there is no known definitive cause for it”. There can not be a definitive cause for “it” because there are several possible causes for these symptoms that are lumped together with the Meniere’s label (it). These are the problems the suffer face. Contradicting views from Doctors and other health professionals who are “limited” in their view according to their specific area of expertise. It is almost never looked at in its entirety.
As always seems to be the case in modern medical culture the focus is always on treating the symptoms rather than looking at the root cause(s) and eliminating these causes from the sufferer’s life, therefore eliminating the symptoms altogether. If this is done and the sufferer no longer has the symptoms then “diagnosis” will automatically be that the sufferer no longer has “Meniere’s”. This is the contradiction of calling an idiopathic condition that we know without doubt can be cured through diet, supplementation and most importantly finding and dealing with the root cause(s) a “disease” and giving it a label (Meniere’s). That said, we must applaud Dr Kaf for her dedication to finding a definitive diagnosis.
Improving the process for the diagnosis of Meniere’s disease
The current technique for objective diagnosis of Meniere disease is Electrocochleography, but Kaf knows that it lacks sensitivity to accurately detect Meniere’s disease in its early stage. She wants to improve the diagnosis process to understand the origin of the disease and its long-term effects.
Currently to test patients, an electrode is placed behind the ear and another in the ear canal. Clicking sounds will be presented to the patient’s ear via earphone and the system will record responses from the inner ear and the hearing nerve, which will be analyzed by an audiologist. The diagnosis is based on whether there is an abnormally large response from the inner ear compared to the hearing nerve response.
“My research is to modify the current technique to allow it to detect the disease earlier by presenting the click sounds at faster rates of up to 500 clicks per second,” said Kaf.
She explained that this increased speed is a stressor to the inner ear and the hearing nerve similar to a doctor putting a patient with heart condition on a treadmill while undergoing an echocardiogram (EKG). The stress during an EKG allows physicians to detect early dysfunction of the heart. In Kaf’s research, the modification to the current measure has the potential to detect Meniere’s disease and distinguish it from other inner ear or nerve lesions.
You can read more about Dr Kaf’s research and volunteer for her study here
Help other sufferers. Do you have experience with Meniere’s disease? Let us know your thoughts in the comments box below or email Mike at meniereshelp@gmail.com
Do you have the symptoms vertigo, dizziness, tinnitus and hearing loss? You may have Meniere’s Disease
Table of Contents
You are not alone
If you are suffering from the worst symptoms of Meniere’s Disease, it can be a very miserable and lonely existence. Friends and family have no idea what you are going through; how could they?
Sufferers often shrink into their shell, exhausted with ‘life’. Every day is an exercise in trying to survive without a full blown vertigo attack or drop attack.
On good days it can be ‘just’ head splitting tinnitus, pressure on the side of the face, brain fog, confusion, deafness, light sensitivity, sound sensitivity, blurred vision, nausea and dizziness.
On bad days the sufferer can be completed incapacitated with severe vertigo and vomiting. These attacks can often take days to recover from; indeed if ‘recover’ can even be the appropriate term.
The numbers of diagnosed Meniere’s cases varies depending on the source but in the USA it is thought between 600,000 to 900,000 people suffer from MD. In Japan and the UK, it is thought to be around 200,000 in each country.
ScienceCodex.Com claims that Meniere’s affects approximately 3 to 5 million people in the United States. The National Institute of Health “estimates” the number to be around 615,000 with 45,500 new cases each year.
When you consider that the vast majority are only ever ‘treated‘ and never cured, the average sufferer is diagnosed in middle age and can suffer for the next 30+ years that would certainly take the numbers to well over one million.
There is no official reporting system for Meniere’s cases and no data base so numbers are only ever estimates and could be way off.
If you consider the amount of people who have the symptoms of Meniere’s or vestibular disorders but have not been officially diagnosed, the number of people suffering this horrendous condition must be staggering.
Indeed, according to VEDA (Vestibular Disorder Association) 69 millionAmericans suffer from dizziness and imbalance.
The Meniere’s Help email inbox currently holds almost 9,000 messages and this is the 3rd email account we have had dedicated to supporting Meniere’s sufferers. The number of online and real world support groups are plentiful, each with thousands of members.
According to MediciGlobal in February 2015 the “Meniere’s Disease Team” on Facebook became the largest online patient community with over 35,000 visitors weekly. [Though it has to be said, I searched for this page on FB and it didn’t show. That said, you will find several groups with multiple thousands of members]
Taking all this into account, it amounts to a LOT of people suffering (for the vast majority, needlessly in my view So if you find yourself now saying I have Meniere’s Disease, you are not alone and there is much you can do.
What to do when you have Meniere’s disease
Firstly, do not suffer in silence alone. Join a group and share your experiences with the sympathetic ears of people who understand exactly what you are going through.
If groups are not your thing, don’t worry, Meniere’s Disease Help is here to help you as much as possible. I have lived through and completely recovered from the worst symptoms of Meniere’s Disease. So never hesitate to contact me at meniereshelp@gmail.com
Lastly, you DO NOT have to live with Meniere’s. Most in the medical community will tell you that there is no known cause, Meniere’s can not be cured but it can be treated or far too often you may hear something along the lines of, “Nothing more can be done, take your drugs and learn to live with it”.
Yet the 1000s of people who HAVE cured themselves and been in contact with us alone stand as testimony to the fact that indeed you can free yourself of this condition. If you accept the dogma that you cannot free yourself from Meniere’s, then you will not do so. Accept you have this problem and accept there are ways to deal with it, learn what you need and take the appropriate action in your individual case.
The simple facts are: there is no known definitive root cause and no known definitive cure. But there are known root causes and known cures. They can be quite different in each of us, but the resulting dysfunction in the ear and therefore the symptoms are the same. There are several possibilities and each of us can find our own cause(s) and cure by matching these causes to our own individual case.
Read through our main website using the links above and become informed and have a deeper understanding of just what you are dealing with. It is not as hopeless as you may think and no where near as hopeless as the consensus implies throughout mainstream medicine.
Learn how to live symptom free and find your root cause then eliminate it from your life, therefore freeing yourself of Meniere’s completely.
You CAN beat Meniere’s naturally, with no drugs or surgery and come out of this healthier than you were before your symptoms ever appeared. It can be done, it has been done by thousands and is being done all the time. When you decide it is time, you WILL get your life back.
Betahistine For Meniere’s Disease – Efficacy and Safety Study
Table of Contents
Can Betahistine stop vertigo in Meniere’s Disease?
Betahistine is a very common drug used to “treat” Meniere’s Disease. A new paper was published online in January 2016 on the long term effectiveness and safety of using the drug. The study was supported by grants from the German Federal Ministry of Education and Research.
Having suffered with Meniere’s Disease for seven years (and beating it), having used Betahistine, supporting Meniere’s sufferers for 12 years and researching triggers and root causes for 7 years, I have to say the effectiveness of this drug in my view is very questionable at best. Anyone who has read through Menieres-Help.Com will know we view the drugs used to treat Meniere’s with a LOT of skepticism. This is born out of our own experience and the experiences of thousands of people who have contacted us over the years.
It is our view based on experience and again, thousands of testimonials, that by supporting your immune system through a healthy, organic, wholefood diet and quality supplements you can live symptom free and moreover, by finding and dealing with your root cause (there are several possibilities here) you can give yourself more of a chance of living a normal life again
“Treatments” are only focusing on the “symptoms”, which are a result of the root cause and knock on effects throughout the body. Treating the symptoms can go on for decades with little to no success and cost a lot of money.
Do you really want to spend another 10, 15, 20 years or the rest of your life living with the horrendous effects of Meniere’s and spend a fortune in the meantime on useless or questionable drug treatments?
We have received emails from people who had lived with these symptoms for up to 30 years and nothing had helped, only to find they could have rid themselves naturally all along. Make no mistake you CAN get your life back. It is just a matter of informing yourself and taking appropriate action.
By letting your body deal with the problem efficiently through a comprehensive, healthy, strong immune system and eliminating the root cause(s) you will can rid yourself of Meniere’s forever and it will take a LOT less time and money.
The added bonus of this route is that there are no concerns for the long term effects of synthetic drugs being pumped into your body. Long term use of some drugs used to treat Meniere’s can actually cause some of the same symptoms.
Read through Menieres-Help.Com for information related to all this and Click Here to learn more about how you can free yourself of Meniere’s forever.
That aside we try to give as wide and comprehensive information on all things related to Meniere’s, so below is a summary of the study. Note in the abstract the author states “Current evidence is limited as to whether betahistine prevents vertigo attacks.“
I am sure you will agree if you suffer from Meniere’s that the vertigo is the worst of the many debilitating symptoms of this condition.
Study
Abstract
Study question What is the long term efficacy of betahistine dihydrochloride on the incidence of vertigo attacks in patients with Meniere’s disease, compared with placebo?
Methods The BEMED trial is a multicentre, double blind, randomised, placebo controlled, three arm, parallel group, phase III, dose defining superiority trial conducted in 14 German tertiary referral centres (for neurology or ear, nose, and throat). Adults aged 21-80 years (mean age 56 years) with definite unilateral or bilateral Meniere’s disease were recruited from March 2008 to November 2012. Participants received placebo (n=74), low dose betahistine (2×24 mg daily, (n=73)), or high dose betahistine (3×48 mg daily, (n=74)) over nine months. The primary outcome was the number of attacks per 30 days, based on patients’ diaries during a three month assessment period at months seven to nine. An internet based randomisation schedule performed a concealed 1:1:1 allocation, stratified by study site. Secondary outcomes included the duration and severity of attacks, change in quality of life scores, and several observer-reported parameters to assess changes in audiological and vestibular function.
Study answer and limitations Incidence of attacks related to Meniere’s disease did not differ between the three treatment groups (P=0.759). Compared with placebo, attack rate ratios were 1.036 (95% confidence interval 0.942 to 1.140) and 1.012 (0.919 to 1.114) for low dose and high dose betahistine, respectively. The overall monthly attack rate fell significantly by the factor 0.758 (0.705 to 0.816; P<0.001). The population based, mean monthly incidence averaged over the assessment period was 2.722 (1.304 to 6.309), 3.204 (1.345 to 7.929), and 3.258 (1.685 to 7.266) for the placebo, low dose betahistine, and high dose betahistine groups, respectively. Results were consistent for all secondary outcomes. Treatment was well tolerated with no unexpected safety findings. Without a control group of patients who did not receive any intervention to follow the natural course of the disease, the placebo effect could not be accurately assessed and differentiated from spontaneous remission and fluctuation of symptoms.
What this study adds Current evidence is limited as to whether betahistine prevents vertigo attacks caused by Meniere’s disease, compared with placebo. The trial provides information on symptom relief on placebo intervention which is relevant for the design of future studies on potential disease modifying treatments in patients with Meniere’s disease.
Conclusion
So is Betahistine For Meniere’s Disease the best way to go? That is for you and your treating health professional to decide. There are many options available to you. Betahistine is commonly prescribed and some say it helps. In my case it didn’t. Anything that reduces vertigo is welcome to the Meniere’s sufferer but as alluded to above, there are many ways to eliminate your vertigo.
