Well, the topic says it I guess. Not only new to the forums, but newly diagnosed. I was officially diagnosed with Meniere's Disease on January 8. I had never heard of it before they began running tests and wanted to schedule a VNG because I was suddenly experiencing violent episodes of vertigo. Since my diagnosis, I've been reading everything I can about MM and I guess my progression wasn't really textbook. I had my first period of complete temporary deafness in my right ear in 2006. This has happened to me on several occasions since. I've always had the pressure sensation, tinnitus, and gradual hearing loss, with a dramatic drop in the 4k range. I've had MRIs, bone conduction tests, CT scans, you name it and they've done it. They just couldn't explain any of my symptoms, until the vertigo started in December. Luckily the doctor was able to see the nystagmus happening as my eyes jerked uncontrollably from left to right during my first attack. So when it happened again, he said I think you have Meniere's Disease and I'm sending you to an ENT. I feel like I'm just rambling now, but I also feel like no one else understands what I'm going through. Since that second violent attack, I have had dizziness and brain fog every day, and gentle spinning to the right almost constantly, punctuated by attacks of vertigo every few days that range in severity from mild to "holy crap I'm going to die right now." My VNG showed that I only have a 27% vestibular weakness on the right side right now, and the ENT said that means it will only get worse with each attack. Being in the military, I don't necessarily have access to the greatest doctors in the world, or the most treatment options. The only treatment options that have been discussed with me are a Minuet device, labrynthectomy as a last resort if hearing is totally destroyed and diuretics which I'm currently on. Of course, change in diet and lifestyle is a must, low sodium, no caffeine, alcohol, or nicotine. I also have another appointment tomorrow where I am going to discuss whether or not they will put me on a board to see if I am still medically fit to continue service. Most likely with as severe as my symptoms are now, they will force me to retire, especially since I've already served over 16 years. I just want to say that reading everyone's posts here, I feel for you, and I don't know how you've done it as long as you have. I'm just a bundle of nerves right now. So much so that I can't tell if I'm imagining the pressure in my left ear and the increase in tinnitus over the last two weeks because for the first time, the hearing test showed loss of hearing in that ear this time, or if its real. Well, I better cut this or I'll just keep rambling. I have no idea what to do next. I guess I'll be around for a while though, so I hope to get to know some of you and hopefully we can inspire each other.
Welcome to the forum ULV. Been here for a little over a year myself. Unfortunately, my ENT never helped relieve any of my symptoms. If you take the time, you will not only read personal stories, but also get ideas of treatments to try. The only relief I have gained is thru use of JOH (John of Ohio) supplement regimen. You need to find what helps you as each situation is different. Never give up my friend!
unlimitedvaper sorry for what you're going thru. i'm so grateful that i found this forum a year ago as i was frightened, sick and searching for answers. i have received immense support and a wealth of info. here. be sure to read the John of Ohio supplement regimen. i feel 90 % better since starting a prescription antiviral, low sodium diet and I too don't drink alcoholic of caffeinated drinks and i quit smoking years ago. my best to everyone.
Welcome to the forum. It is important to remember that most people find some relief, as other members will tell you. This forum is really made up of people who are the really tough cases...as Scott would say, and correctly. The challenging part is that what works for some will not work for another. It is really a trial error process. Read the past posts and try what others have found to to be helpful. I would certainly recommend anti virals. They have not worked for me but they have helped others on here.
For sure, get off caffeine, gradually but eliminate it. Also i am sure the doctors have told you to limit sodium. The idea there is to spread it evenly thoughout the day more than go extremely low. Antivirals such as acyclovir, famvir and valtrex have helped a whole lot of people including me. While it is not a ‘standard’ treatment, it is becoming more widely used and accepted by doctors. It doesnt work for every one but it is a Godsend to those it does work for. It takes a pretty high dose for a matter of months to get results.myou will see a lot written here anout it. Like many people, it was my family doctor who first prescribed them to me. She said ‘if you want to try it i will prescribe it.’ Neither one of us had a lot of confidence ut it did work for me.mi was later prescribed famvir by dr derebery at House Ear in Los Angeles, a Clinic your ENT will know of. Good luck. Dont give up.
^^ the virus that is suspected is one of the many herpes viruses that cause cold sores, mono, chicken pox etc. No one knows exactly which of these, just that it tends to respond to the same antivirals as theyndo.
Welcome! (and sorry you're here) MM can be multi-factoral. It can be linked to viral, fungal and/or bacterial infections in other parts of the body, and usually more than just one. I had all three at one time or another. Some folks here find relief with anti-viral medications, I'll let others speak on those mostly, but here is a scientific basis for viral causes: http://menieres.org/talk/index.php?topic=14.msg36#msg36 I have tons of viral antibodies from past massive CSV, HH6 infections, but no active infections. Anti-fungals have helped other folks, including me. I had very poor gut health and developed a long-term systemic fungal infection (which I'm still fighting). Here is a scientific basis for fungal infections: http://www.papadisc.com/MM_Nystatin.pdf The third part (for me) was discovered accidentally. I had a several 35 year old stealth dental infections from poor dental health as a youth, and subsequent botched root canals. To see if you might have a dental exposure, please check out this thread: http://menieres.org/talk/index.php?topic=2830.0 PapaJoe
Adding to PapaJoe’s important point about multiple contributors, another one can be allergies. They may not be classic allergy symptoms like hayfever with sneezing, red eyes or bee sting. Mine were discovered with allergy testing.mAllergies, like may things affect the immune system which affects mm. Allergy shots helped me but it takes minths and years. Do whatever you can to take pressure off the immune system.
Sorry you have to meet us like this. It is a horrifying condition. Last year my life was sheer hell--from October of 2016 to May/June of 2017. Severe vertigo that left me on the floor vomiting and unable to move. Through this website, I learned about John of Ohio, antivirals, and chiro. I have done the traditional route of the diuretic and betahistine. I started antivirals and chiropractic as well. I'm happy to report that symptoms started lessening in severity. I have now been 2 months with NO symptoms. I was visiting here daily and now pop in every couple of weeks. So as people say, many people recover and they aren't the stories you will hear here. I feel so much better and am hopeful that I've recovered. I highly suggest getting on antivirals asap and going to a good chiropractor.
I've heard a few people mention the chiropractor. What would I mention to the chiropractor to get the conversation pointed in the right direction? There's definitely a lot to take in. I saw the doctor today and they marked me as not medically qualified, so I guess we will see what that means in the upcoming months for my job since I'm up for reenlistment in the next few months as well. Might mean medical board and early retirement, or could mean they just put me back in service. You never can tell with these yahoos.
Sorry you are having to deal with this. I also strongly suggest starting with antivirals. There are links on this website to published papers on their use that you can present to your Dr. They have little to no side effects so no harm no foul to give them a shot. Good luck during this tough time.
I feel your pain, it really is a horrible disease! I would also strongly encourage you to get on antivirals as soon as possible. As it is not a standard treatment you may need to bring some evidence based documents to your doctor in order to get a prescription. Do a search and You will find all of these links on this forum. My ENT(like many others on here) would not even tolerate the conversation of antiviral use but thankfully i found a GP/Family doctor who would prescribe. I have only ever tried Famvir antivirals and it gave me full relief from vertigo, dizziness, balance issues In a few months. It took almost a month to start noticing any improvement but then it just kept on getting better. You need to stick with them for at least three months before deciding if they work for you or not. I have remained on a maintenance dose for approx 7 years, only symptoms that have remained are tinnitus and hearing loss. I was essentially disabled, had taken leave from my job and moved back to live with my parents. Antivirals gave me my life back! I really hope they work for you too!
Welcome. This condition sucks ass, but it can be managed. I've been on the bus since 2005. Had a few attacks here and there along the way but things got real last April. I went all out seeking answers. Some have helped, some have made it worse. I quit all the obvious stuff like caffeine, alcohol, salty foods, etc. I'm taking acyclovir and lysine. I'm seeing a chiro for atlas adjustments. Since starting the AV's in late November things have been a rollercoaster, but I can honestly say that I'm feeling 80% better. I can work again without actively spinning and panicking, and I feel safe driving again. I'm starting to feel like the AV's are really doing something for me, so if you haven't looked into it yet I'd say give it a go. Good luck, and you are certainly not alone!
Welcome to the forum! What can I say that hasn't already been said? I'm truly sorry that you're here......right off hand that sounds bad, but it means that you have, or know someone who has, MM and that sucks, as I've said before I wouldn't wish this on my worst enemy. I wish I could say do this and do that and you'll be OK, but as most of us here already know this damned disease is so varied in its symptoms and its causes that its impossible to say with any kind of certainty what may help you. It sounds like you're getting hit pretty hard with it right now, I've been there and things are better now for me today, but who knows how long that will last? I try not to focus on that though and choose to take it one day at a time, just being thankful for the good days and surviving the bad ones. For me just taking action was a huge boost and made me feel better, but I've always been that kind of person, taking things head on instead of sticking my head in the sand and hoping things change. As soon as I found this forum I started implementing some of the things that have worked for others, I immediately started the JOH regiment and I can honestly say that I feel a lot better. Has it eliminated the MM? Sadly, no, but it has made it infinitely better than it was. I'm also hoping to start with anti-virals as soon as I see my ENT in a few weeks. I have also found that if I get plenty of rest and workout regularly, watch what I eat (within reason) and take alcohol with care (just haven't quite been able to give up a few beers here and there and an occasional shot or two of Tequila) I'm fine. The foggy days and mild vertigo are often (which for me is often an indicator of a coming bad vertigo attack) but the low dose valium my ENT has prescribed me helps clear most of that up...........and the bad vertigo is still there, but much less frequent, I haven't had a bad attack in several weeks and in retrospect the last bad one wasn't as bad as previous bad ones (although if you would have asked me during that attack I probably wouldn't have agreed ) I would strongly recommend that you start doing some of the things you're reading about on this forum, JOH, anit-virals, have screenings for stealth infections, see a chiropractor, start getting acupuncture, betahistine, low salt (many others I know I'm missing) .......any and all things that you can do because some of these things, perhaps even a combination of many of these things may help you to find some relief..........and for us, the ones who have been inflicted with this terrible condition known as MM..........that's about all we can hope for. I wish you all the luck in the world in finding those things that work for you. Until then, try not to get down about it, I personally believe that allowing despair and depression into the picture can only make things that much worse. Stay well!
ULV, Welcome to the forum and I hope it will be as helpful to you as it has been for me. There are different types of chiro. I believe the principle is similar in that it increases blood flow to the ear. I have tried standard and NUCCA chiro but it was always in conjunction with other treatments so I cannot attest to it's efficacy one way or the other. I have had this beast for 27 years and, for me, the only relief I have found is through the antiviral route. That includes both prescription valacyclovir and the JOH vitamin regimen. I am retired military and have Tricare. As long as your primary doctor prescribes it they will provide the drug. If you go that route, a word of caution - not all generics are created equal. Northstar valacyclovir has been the only successful one I have encountered. Best of luck in combatting this disease.
Thanks everyone for the replies. They are currently working up a PEB to put me out of the military, which is stressful enough. Then come to find out that means that I'll have to choose between my retirement and disability. Everything is just happening so quickly.
Get under the care of a doc that specializes in MM disease. Dizzy balance ENT or oto neurologist. Get a full work up to be sure the diagnosis is correct. Have to rule out a few things. Lots of folks on this board can throw out some good physician names. Depends on your part of the country. Know you can fix it. Lots to try along the way but then if all else fails there are chemicals and surgery that can dumb it down or kill it off. So have hope and take it a step at a time. Meanwhile find a doc you like and trust.