I had someone with Ménière's ask that I post what I figured out in my case to this blog. I hope this helps others. So here goes. I was able to figure out what the underlying cause of my Ménière's was, as I was able to find 4 patterns to my issues. Once I figured it out I went to a doctor who has a degree in Environmental Medicine and he confirmed my conclusion. I suspect that it maybe one of the primary causes of Ménière's. My Ménière's was caused by mold (also known as a fungus). Below are some additional links and information on why it is a likely cause of Ménière's in my opinion. Before reading the rest please note that I am not a doctor. First off, details on others who have had experiences with mold and vertigo. [list type=decimal] [*]A former family member was diagnosed at the same time I was as having Ménière's. When I told them what was causing my issue, they looked for and found mold in their house that they did not know they had. Once they cleared out the mold their issues went away. [*]Another family member worked in an office where there was mold, three of the office workers were experiencing severe vertigo. Shortly thereafter the family member started to experience vertigo, although they were no longer in the office with the mold. [*]A neighbor I talked to the other day has been experiencing vertigo for many years. Once she talked to me about mold, she started tracking outside mold verse her vertigo. She found they were linked.[/list] If your issue is also mold related, below is information that will help you solve your issue, with a little of my story as well and my commentary on web resources. I was diagnosed with Ménière's a couple years ago and in January of 2014, it disabled me. I lost my ability to drive and was stuck in a chair most of the day. I could not do much, so I decided that maybe I could figure it out and started to play events in my mind and looking for patterns. I was lucky in that sometimes I went out of town on business trips. One of the things I realized was that when I went out of town I got better and when I stayed in town I got worse. So I knew that meant it was environmentally induced. So I started researching what things environmentally that could affect the hearing. Two things keep popping up were toxins and fungus. As such I found some items on eHow and a paper by Dr Nelson's success using Nystatin that lead me to mold as the cause. I was then able to find I was being exposed to high levels of mold (mold is everywhere, it is the amount of mold that is important). Here are the main items that lead me to that conclusion along with my commentary: Dr Nelson: Dr Nelson stumbled on the fact that Nystatin put Ménière’s into remission for a larger percentage of his trial group. Nystatin is an antifungal (mold is a fungus). Dr Nelson's was on the right track, but I believe he retired before figuring out what was missed. The reason it did not help all his patients is Nystatin never leaves the digestive track. So you also so need an anti fungal that gets in the blood stream as well as the Nystatin. The person likely has an allergy to the mold and needs treated for the mold allergy. One also needs to find out where their mold exposure is and eliminate it. I also believe you need something to get the mycotoxins out of your system although the body will do so over time. Some doctors claim 5 years to get mold out of your system. Dr Nelson’s paper is available at: http://www.mwilliamson.com/hearingloss.htm Before reviewing eHow info, take a look at what their policy is for posting information at the bottom of their page. From : http://www.ehow.com/about_5482023_black-mold-sickness-symptoms.html According to Jay Portnoy, MD, of Children’s Mercy Hospital in Kansas City, there are several different strains of mold that cause black mold to grow and are dangerous to a person’s health. These strains include penicillium, aspergillum, cladosporium and stachybochrys. According to Jay Portnoy, MD, common black mold sickness and symptoms include respiratory illness, including asthma, nausea, vomiting, dizziness, headaches, fatigue and rashes. These symptoms are often caused by the chemicals that are being released by the black mold and disappear once a person leaves the building infested with black mold. according to Dr. Portnoy, the most serious are for young infants, who may be subject to quick progression of the impact of the mold on their immune systems. This is of serious and considerable concern to parents. Other late symptoms can include cancer and stillbirths in infants as the molds attempt to kill any living creature that might be competition for space and for nutrients in the environment. http://www.ehow.com/info_8333520_symptoms-signs-toxic-mold.html which says: Aspergillus spp. Aspergillus is the most common fungus within the environment and contains 16 out of 160 species that cause disease. Common symptoms of Aspergillus are skin rashes and hair loss. Aspergillus niger is a species that colonizes in the lungs and can cause hearing loss and tinnitus. Aspergillus versicolor is the most common species that inflicts severe abdominal pain, acid reflux and vomiting in the host. Stachybotrys Chartarum Stachybotrys is a greenish-black mold that grows on material containing high cellulose and low nitrogen. This mold produces mycotoxins that are dangerously toxic, possible carcinogen and immunosuppressive. Stachybotrys mycotoxin exposure can produce dermatitis, memory loss, balance issues, acid reflux, nose bleeds, flu-like symptoms, bleeding lungs, general malaise, internal lesions and seizures. The mycotoxins can also destroy the myelin sheath, leading to autoimmune disease in long term exposure cases. Watch the video on the webpage, and how the father describes his son’s episodes, it matches the episodes I had when I was in the area where the mold was. http://articles.mercola.com/sites/articles/archive/2011/09/03/molds-making-you-ill.aspx In a Power Point called "Recognizing and Treating Fungal Related Illness" on David Buscher, M.D. Northwest Center for Environmental Medicine (the power point has been removed) website I discovered there is a medical degree called Environmental Medicine. And I need to mention John of Ohio Ménière's Regime, as it was part of finding the solution. An older version had a vitamin in it called "Beta 1,3 Glucans" which is a anti fungal. I bumped it up to four a day and it started bringing the vertigo to an end. One doctor’s office I talked to only deals with mold and heavy metal removal said: 80% of the people they treat are for Vertigo and hearing loss. Most recover some of their hearing and the Vertigo is eliminated. If you do not eliminate the mold, they will not treat. The ENT I was seeing at the time would not believe me, and did not know where to send me if he did. About that time I found the power point on mold, by a doctor with a Environmental Medicine degree, so I searched for a local doctor with a degree in Environmental Medicine. Luckily we had a local doctor and he is the one who confirmed my conclusion. The good news is once you know the cause is fungal, there are FDA approved medications for it (if you happen to live in the USA). The items below I found after I was being treated for mold/fungal. The papers at the links below confirm Aspergillus causes hearing loss, vertigo, nausea and tinnitus. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1150873/ http://www.ajnr.org/content/28/1/138.full http://aac.asm.org/content/53/3/1048.long http://www.hindawi.com/journals/ijmicro/2014/636493/ Clean up page lists hearing loss for Stacky: http://www.grainger.com/content/safety-bleach-and-mold Thesis paper on mycotoxins causing hearing loss and vertigo: https://dspace.mit.edu/bitstream/handle/1721.1/39433/59008133.pdf?sequence=1 In 1999 the Mayo clinic released a paper identifying that 96% of all Nasal Infections are caused by mold. The link to the paper is below http://www.mayoclinic.org/departments-centers/otorhinolaryngology-ent/minnesota/research/chronic-sinusitis The Mayo Clinic Article was originally found on: http://www.ehow.com/facts_6028277_mold-dizziness.html http://articles.mercola.com/sites/articles/archive/2011/11/01/recovery-from-toxic-mold-exposure.aspx But is it really? The steroid may temporarily decrease inflammation, which may make you feel a bit better for a short period of time. However, steroids suppress your immune response. If your immune response is compromised, then the infection is actually encouraged, which perpetuates the underlying problem. It's like pouring gasoline on a fire… The fact that steroids suppress your immune system is no secret. Just read the package insert or patient information sheet for any steroid medication—it will warn you that exposure to pathogens like chicken pox or measles while using the drug could result in serious complications, even death, due to immunosuppression. http://www.library.ca.gov/crb/01/notes/v8n1.pdf Which says: Sick Building Syndrome (SBS): Although not attributed exclusively to molds, this is a term “used to describe situations in which building occupants experience acute health and comfort effects that appear to be linked to time spent in a building” because all other probable causes have been ruled out. 39 Symptoms include headaches; eye, nose, and throat irritation; dry cough; dry or itchy skin; dizziness and nausea; difficulty in concentrating; fatigue; and sensitivity to odors. http://www.dhs.wisconsin.gov/eh/hlthhaz/pdf/mycotoxin.pdf Indoor mold and building-related illnesses. The presence of indoor mold infestation is often implicated as the basis of disease in case studies of building-related illness(Hodgson, et al. 1998; Croft, et al. 1986; Apostolakos et al., 2001). There is little evidence that humans are exposed to airborne mycotoxins or to microbial volatile organic compounds (MVOCs) at concentrations known to cause acute or irritating effects for single compounds, as established in animal studies (Burge, 1990; Pasanen, et al. 1999; The Nat’l Acadamies, 2004). Nonetheless, there are many case studies of individuals reporting non-specific or allergy-related symptoms attributed to sick-building syndrome, such as chronic headache, dizziness, confusion, sinus http://www.botany.hawaii.edu/faculty/wong/BOT135/Lect011.htm Sick Building Syndrome How many of you have had the following experience? You are employed in a large high rise or even just entered a high rise once, on business, that has central air conditioning, and one or more of the following symptoms occur: · Headache · Eye, nose, or throat irritation · Dry cough · Dry or itchy skin · Dizziness and nausea · Difficulty in concentrating · Fatigue · Sensitivity to odors. After leaving the building the above symptoms would generally go away, but in some cases may persist for a short period of time. http://www.m.webmd.com/allergies/features/mold-allergies-reduce-symptoms?page=3 Says Martyny explains. "Some people recover when the mold source is removed. But if they've been exposed for a long time, they may never recover." In winter months, indoor heat inside the house will pull air from the crawl space into the living space, says Martyny. That’s one reason a mold allergy may get worse in winter. It may be hard to get a mold allergy correctly diagnosed. "Very often, the root of the problem isn't identified correctly," Martyny says. "People have these symptoms, but they don't realize they have a moisture and mold problem at home. If you get rid of the allergens -- the mold -- people get better, and they get better pretty fast." http://articles.mercola.com/sites/articles/archive/2011/09/03/molds-making-you-ill.aspx http://articles.mercola.com/sites/articles/archive/2011/11/01/recovery-from-toxic-mold-exposure.aspx Suzanne Summers recently published a book of interviews with Doctors trained in Environmental Medicine after her family's run in with mold and toxins. It is called Tox-Sick. We have known mold is an issue for thousands of years. See the bible: Leviticus 14: 33-48 Last comments... 1. One of the things I was told about Ménière's, was the only thing predicable about it was that it was unpredictable. So why is that, if mold is the cause? Turns out mold is not always in bloom. It is only in bloom when you take moisture away. One page (I lost the link) said that mold spores are at ground level at night and rise up to the ceiling during the heat of the day. So if you are not in the area of the mold when it is in your breathing zone, you likely will not be affected that day. Indoor mold is worse during the winter and outdoor mold is worse during the summer. All of these details makes it highly variable on how much and when your exposure is. 2. I suspect that ear wax. saliva and nose snot are our bodies primary defense against mold spores. 3. Do not use bleach unless you have a well ventilated area. Bleach and Mold combine to make VOC's and can be deadly. If you have a lot (over 10 sq feet) call a professional to deal with it. 4. I prefer to call mold the trigger mechanism. It is likely the trigger mechanism for many diseases we have to deal with (search for mycotoxins). Jim[/list]
thanks for the info, we have a member whose MM symptoms were caused by a fungal infection, a systemic years infection, his experience and cure, which included antifungals is in the database. Also if symptoms are caused by known things or illnesses they do not consider it Meniere's they call it secondary endolymphatic hydrops, where Meneiere's is Primary EH and if there is a known cause, such as allergies, fungal infections etc etc they do not consider it Meniere's. So it seems having MM symptoms does not necessarily mean one has Meniere's. Which explains why 1 treatment does not fit all, since other infections and illness can cause the same symptoms as Meniere's.
Thanks JimB for putting this back on my radar. In 2010 I moved into a cabin that I suspect had mold. In 2011 PG&E installed those smart meters which pump large amounts of EMF's. In 2012 is when my Migraine and Meniere's symptoms began and by 2013 I was flat-out ill. In 2014 I moved out of there into the city and into a steel and concrete building wityh great ventilation. Although my symptoms remain, they became more manageable. Over the past few months I had been getting quite ill again and adding intense nausea to the mix. During that time I had been helping out a friend organize his office which is inside an old brick building housing a hotel with loads of old plumbing and WiFi=EMF's. I went down into the basement to a storage area where boxes were and the smell of the mold was very intense. I now suspect that the regular exposure to the mold created a multiplying impact on my Meniere's symptoms. I have not been back there now for almost a week and feel better each day. This alarms me so much since I am just now beginning to be stable enought to look for work and wonder how much mold in an environment will be intolerable. There are HEPA filters but I just don't know how to address this on top of everything else this disease has done to limit my range. I know I have friends here who so get this :'(
If your issue is an “Inhalant Allergy” try Nasalcrom. See: http://www.nasalcrom.com/ Use Honeywell room filters in areas where you spend your time. When they say they are recommended by doctors I believe that is accurate, as they were recommended by the doctor I am going to. See: http://www.honeywellpluggedin.com/air-purifiers If you have central heat/air use a filter that filters out mold such as: http://www.homedepot.com/p/Honeywell-20-in-x-25-in-x-5-in-Cleaner-Pleated-FPR-8-Air-Filter-CF508D2025/203921620 Also if you have a central system you can have a Germicidal light installed as well. Not only do they kill Germs, but they kill mold and bacteria as well. The catch is when you are allergic to mold, it does not matter if it is alive or dead, but dead mold does not reproduce. See: http://www.lennox.com/products/indoor-air-quality-systems/UV/ When you are where you believe there is a significant amount of mold spores, wear a surgical mask. They are not a 100% but they should minimize the exposure. The other issue with mold is as it digests building material, the building materials out gas the chemicals they were made with. If you happen to have sensitivity to those chemicals things will be worse. Depending on where you live your regional air quality agency will likely post weekday outside mold levels.
once my Meniere's symptoms got under control using an antiviral It became clear to me that I have MAV too. I had no idea before that it was everything was mushed together so I thought it was all Meniere's. Not until japyr here on the forums suggested I look into MAV. So many MAV triggers were my triggers. I do a lot or research as most know and there are differences in MM and MAV triggers. Some are the same but some definitely different. Mold is link to migraines, I have silent migraines aka MAV. Also I am very smell, and light sensitive which is MAV not MM. Food triggers are different although a few are the same for different reasons. The differences between the 2 MAV and MM are clear for the most part but the symptoms are extremely similar so its easy to say its all Meniere's if one doesn't look into the differences. Its was a matter of being a detective to figure out which is what.
Holly...Ill give an example that I experienced. My MM is totally under control for almost 3 years now but once it was at one point I had yogurt everyday because I wanted to change my diet, I got raging tinnitus and totally off balance. Now if my MM symptoms were not under control I would have thought I'm having an MM attack. But yogurt is a known food trigger of MAV, things like that were occurring, so it became clear to me I had MAV as well
this is an interesting post and very informative, could it be that the mold/fungus is not just from ones environment/house but also from food, yeast, candida and it gets worse and worse and if left untreated for long periods of time, infections occur and thus mm/hydrops develop. I often wonder how many of us had suspect diets at one time or another. Lots of sugar, sodas, beer, alcohol which destroy the digestive tract leaving it susceptible to such things. God know i did, when i was working at Goldman Sachs i lived on Mt. Dew and Dr. Pepper and M&M's working late under lots of stress, deadlines etc....... I have noticed lots of former teachers on this board as well. Lots of stress etc....... I think taking an anti fungal would maybe be a wise decision, but i would get a cheap blood test to see if i did indeed have a fungal infection etc........ before doing so. It would be a lot easier to get a dr. to prescribe a good anti fungal if you go to him with proof of a fungal infection as determined by blood work and the same goes for antivirals.
People may notice possible signs such as bad / unpredictable bowel movements, loose stools etc........ I would definitely get a high quality medical grade probiotic to start.
Holly, since I identified I have MAV as well its a lot easier to keep symptoms away. The antivirals keep me Meniere's symptoms free and avoiding my MAV triggers keep those symptoms away. It does take time and trial and error to figure out.
JimB, This is some excellent research! Thanks so much for sharing it. I am amazed at your ability to figure this out and persevere with all the obstacles you faced. I would like to find someone in my town that can check my house for mold. Not sure where to look. Or are any of the do-it-yourself test kits worth trying?
I have a friend who does household environmental toxin tests here in CA. She suugested that one can buy a petrie dish type kit at a hardware store, take a sample from your carpet and see if mold grows. If it is in your carpet, likely it is in deeper recesses like walls and floorboards. There are mold examiners you can pay a thousand dollars to but they sometime phoney up results to get your business in mold removal. Slimey, huh?
When I was first diagnosed with MM I was internet surfing and piano Joe was on of the first articles I found. I got my GP to prescribe an antifungal and acyclovir. Within four days my aural fullness and brainfog was gone. I could hear again. But.....it only lasted two days. Then two days later I was clear again. But...........it only lasted one day. Since I was getting some relief it was better than nothing. I didn't know if it was the antifungal or antiviral. So...I stopped taking the antiviral and continued the antifungal for three weeks. Ear went full and brainfog came back. Then I switched to just taking the antiviral- acyclovir. I had some good days, not many as this is when I started having daily vertigo. I kept taking the acyclovir for five months. One step forward and two steps back. Vertigo almost every day. The aural fullness and brain fog still pretty bad. Then I switched to valacyclovir and sometime during the third month the aural fullness and brainfog and Vertigo went away. I've now been free of all three for eight months. My hearing is so much better.
This is in response to several posts. Although you can get mold test kits at your local hardware stores I have been told they are not very good, but I suspect better than no test. The next step up is a test kit from: https://www.mymolddetective.com/ after that a local company that does the testing. A company with a Certified Industrial Hygienist is your best bet. Most of the companies are listed under Environmental. Web search for "mold remediation" companies (use the quotes on searches) will find local companies. A number of the links I provided were to peer reviewed medical papers linking mold to vertigo/dizziness, hearing loss and Tinnitus. For that reason I would highly recommend finding a local doctor who is trained in "Environmental Medicine" and go see them. One other item I forgot about is if you have a central HVAC system, get it cleaned. It will reduce your energy bill and if done by a environmental company they can hit it with EPA approved mold killer for HVAC systems if there is mold in your HVAC system. As for a blood test below is what is on the Mayo Clinic site: http://www.mayoclinic.org/diseases-conditions/nonallergic-rhinitis/basics/tests-diagnosis/con-20026910 Blood test. A blood test can measure your immune system's response to common allergens by measuring the amount of certain antibodies in your bloodstream, known as immunoglobulin E (IgE) antibodies. A blood sample is sent to a medical laboratory, where it can be tested for evidence of sensitivity to specific allergens. I suspect a general practitioner would not know how to read the test results. You would want someone trained in Allergies to run and review the results. To the best of my knowledge they prefer to just run the standard allergy tests, verse running the blood test. Jim
just keep in mind allergy tests do not tell you how severe your allergy is, the result values just indicate you are or your not and also they are not always accurate, there is a lot to be desired with these IgE tests. I have a life threatening allergy to shellfish and some times my tests come back normal other time just a tiny bit over positive, but my reaction was extremely severe. A good board certified allergist goes more by history of the patient and their reactions plus the test results, but patients history and reactions are the key.
