I've had symptoms of, what I like to call manure's disease, for about 15 years but wasn't officially diagnosed until 2011. I have been convinced this entire time that it was something else. The symptoms began with diaphoresis, vertigo attacks and some vomiting. However, the vomiting wasn't bad because it "reset" whatever was going on and I felt better. These "attacks" lasted for less than an hour and I got awesome sleep afterwards. The tinnitus was intermittent and my GP did a great job of convincing me that I was crazy, imaging things and having hysterics/anxiety was causing the vertigo. She also let me know that everyone has tinnitus so what was the big deal? I honestly thought I was having heart attacks and knew that I would be found dead from my undiagnosed heart condition… I can laugh at this now. My coping strategy was to ignore it and it will go away. I went to my new GP in 2011 and was found to have dried puss in my ear canal and was sent to an ENT who nicely vacuumed it out and started asking me questions about my undiagnosed "heart condition!" Of course, I was shocked that someone could know everything I had been experiencing and he wasn’t even a cardiologist! Well, as you all have experienced, the tests were done and I was told I had Meniere's disease. In 2011, the tinnitus was > 50% of the time and nystagmus (newer symptom at that time) was intermittent (was relieved to find out it wasn’t epilepsy on top of my heart condition (lol)). Now the tinnitus never goes away and some days it is so loud I ask people to say something to me to make sure I’m not deaf yet. The pressure lasts for weeks or longer, I have 1 to 2 drop incidents a year (just found out that this is part of manures). I still enjoy vomiting so the vertigo stops. Episodes come in clusters, I now avoid walking in the dark so I don’t fall, and frequently have diarrhea after flare ups. However, denial is a wonderful thing and I’m really good at it…until this last Tuesday. Last Tuesday I was driving my car on a highway during rush hour and “lost my vision.” It didn’t go black but was burry but there were no shapes or anything. I couldn’t pull off because I couldn’t see, I couldn’t stop without causing an accident…about 10 seconds later I was fine. I was relieved to find out I had not had a stroke, or heart attack and still don’t have a brain tumor…I have MANURE’S FRICKING DISEASE!!! Are you kidding me!!!??? There was no warning and I’m lucky that I didn’t hurt anyone or myself. I went to the ophthalmologist (I had just gotten new glasses about a month ago and my prescription had doubled so…it might be my eyes) who said that it was dry eyes and dismissed me. I told him that I had a diagnosis of Meniere’s disease and he didn’t think it had anything to do with my dry eyes (my eyes are not dry nor were they when I “lost sight”). Okay, I’m ready to learn. I called the ENT who originally diagnosed me, he retired last Thursday, and I couldn’t be worked into his schedule. I found a new ENT with the subspecialty for inner ear disorders so hopefully he will know something. Funny enough I don’t have hearing aids yet although I was told I had to have my hearing tested before my appointment (I’m not so sure I want to know). My symptoms have always been bilateral so it’s “normal” to me. I’m trying to get information together for my appointment and I’m learning that I don’t even know what I don’t know. Any suggestions??? Where should I start? Does it even sound as if I have Meniere’s? Part of my frustration is this is a diagnosis by elimination so could I be crazy? I guess I’m at the point where I need to marry this blessed disease instead of ignoring it. Any guidance during this time of laughter, tears, frustration and ignorance is appreciated. Is there anyone else out there like me???
KellyP, 1. Your symptoms are a bit unusual. Even for the randomness of Meniere's. You say vomiting helps end your episodes. But with Meniere's vomiting doesn't help. 2. Find a serious doctor who specialises in balance disorders. Not just your local ENT yo-yo who usually has little experience with Meniere's. If you're anywhere near California get an appointment with The House Clinic. 3. I still cannot believe how long people put up with their problems before seeking real help. Years and years. You are yet another example of such a person. 4. Visit this forum often. Read the archives, and talk to us and learn. There are some very compassionate and knowledgeable people here. 5. Don't call it Manures. It's disrespectful to the man who first diagnosed us, Prosper Menière. 6. Here are some respected sites to learn from: http://www.dizziness-and-balance.com/disorders/menieres/menieres.html http://www.menieresinfo.com/index.html http://www.mindovermenieres.com/ http://menieres-help.com/blog/ I'm very sorry Kelly. But do understand that there are some very helpful methods of controlling this. My personal opinion...especially with someone with a condition as advanced as yours, is to start with Gentamicin injections. But get with an experienced balance doctor and see what's really going on. Take care kid.
Thanks Pupper! I do want to apologize for appearing disrespectful. I do respect and I am very appreciative to Prosper Meniere. He has given a name to these symptoms that I struggle to live with. Having a name to this is very important and I don't mean to minimize at all. It is my strange way of trying to keep a sense of humor about all of this...another coping skill that is not always useful. Thank you for saying something =-) I appreciate the resources. I have been immersing myself in literature and the more I read the more symptoms I recognize. I am reading everything multiple times to catch all the information. However, some of my symptoms do present a little differently (i.e. vomiting helping to end episode and I have found nothing about diaphoresis during attacks which is common for me). I also don't always consider walking like I'm drunk vertigo. I just say I'm dizzy or having trouble walking and try to laugh it off as this happens frequently and is part of normal life now. I call it vertigo when the whole world is spinning so fast and intensely that I can only sit, hold my head in my hands, I get really hot, my entire body sweats and pray to vomit (most of that isn't in the literature I've read so far so it may have nothing to do with this or perhaps I'm misdiagnosed?). I have been told that it may be a parasympathetic response to the intense vertigo??? I do feel lucky that vomiting is a reset button for me as I could not imagine this lasting for more than an hour. It brings tears to my eyes knowing there are people who do. I failed to mention that I was diagnosed with bilateral hearing loss in 2011. I have worked on my ability to read lips, use CC on TV as I miss information/dialog and I find that people are kind and will speak up when I tell them that I have hearing issues. I have not had my hearing tested since 2011. I know that it does fluctuate and will not be surprised to find that aids are recommended, it just seems that my hearing loss would be more profound for the stage of my other symptoms. I don't want to be deaf but, for me, there are certainly worse things and the conversations about CI on this blog are very encouraging. I was totally unaware of antivirals or herpes or so many other things posted...I feel very lucky to have found all of you as I've learned more from one day here than in years Googling Meniere's and certainly have not found much help from the medical community as of yet (although I did get a name for these things). I have taken the recommendation of the type of doctor to find and found the one with the best reviews...think I read that on Mind Over Meniere's site. I requested all my tests and medical information from when I was diagnosed. I am concerned with finding quality care. I live in MN if anybody can recommend a doctor. Thanks again Pupper, I appreciate the information and support!
Hi Kelly You do have some unusual symptoms that might indicate something else. You should get checked for MAV. The vast majority of people find partial or full relief through various methods and are able to live quite normal lives. This forum has the really hard cases, as most people move on after they get relief. Don't assume that you'll be one of the tough cases. The odds are greatly in your favor. So don't be discouraged. Try everything. There are several things that can cause Menieres-like symptoms. You can find an exhaustive list here: http://www.dizziness-and-balance.com/disorders/index.html You should first have yourself checked for all the possibilities by various specialists. Be sure to get the full workup. For example, without an MRI, you cannot rule out tumors. Without a high-resolution scan, you cannot rule out SCD. There are a a lot of different tests for different things. Get a second and third opinion. A lot of doctors spend less than 10 minutes looking at your file and then make a diagnosis. A lot of folks here have been diagnosed with one thing (e.g. Menieres), only to find out years later they had something else (e.g. MAV). Check your diet. MAV can often be controlled with diet. Viral-related Menieres requires that you control your Arginine-Lysine ratio in foods. A lot of folks have found relief from antivirals. Obviously, this doesn't work for everyone, but for those of us who are viral-related, it works about 90% of the time (this number is based on published data by Dr. Gacek in peer-reviewed journals). This is a good place to start reading about antivirals http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf https://fhs.mcmaster.ca/otolaryngology/documents/recoveryofhearinginMeniresusingantiviraltreatment.pdf Many people have found relief from various supplements. The most famous one on this board is JOH. You can find his regimen here: http://www.zoominternet.net/~kcshop/JOH.PDF If you think you might have MAV, read this book: https://www.amazon.com/Heal-Your-Headache-David-Buchholz/dp/0761125663/ref=sr_1_1?ie=UTF8&qid=1498501145&sr=8-1&keywords=heal+your+headache There are many other regimens that have worked for others, so be sure to read all the threads on this site. There is a wealth of information here that has been built up over 20 years of experience. Even if nothing works, don't panic, because you can always get a labyrinthectomy, which almost certainly will end your vertigo problems. Just make sure you know which ear is bad and that you're not bilateral (even then, you can laby both ears in a last resort scenario). Lastly, while it's good to listen to your doctor, also listen to your body. You are your best advocate. If you think your doctor isn't giving you the best treatment, get another opinion. Keep searching. Most people who found this site eventually left because they got better. Many of the remaining folks are the really tough cases, so don't panic and assume that you'll be one. Think positive and get started on your journey with both eyes and ears open. Good luck. We're here to help.
I thought Manure's Disease was pretty funny and not disrespectful at all. We have to live with this disease, so we might as well have a laugh while we can.
KellyP, Profuse sweating (diaphoresisis) is pretty common during attacks. And your vomiting ending your attack, my not be strictly related. Perhaps you just have shorter attacks, and when the attacks come to a close, so does your vomiting. Just saying, to me, it does sound like Meniere's. There are four specific criteria for it: tinnitus, fullness in ear, hearing loss, vertigo. All fluctuating in severity and duration. I.e. Things happen randomly. Anyway, just don't waste a lot of time with diets, natural remedies, holistic stuff, etc. Just my opinion. Start with serious, respected methods. Antivirals, Gentamicin, etc.
Regarding the terms "dizzy" and "vertigo". Informal: Most people make the same distinction that you do between being dizzy and having vertigo, and it's proper and helpful to do so in informal, everyday conversation. (Personally I use the term "spinning" instead of "vertigo", as "vertigo" can be confusing to people. Formal/Technically: It seems that being dizzy IS vertigo/spinning, just a more mild form of it. From MenieresInfo.com - MDIC http://www.menieresinfo.com/symptoms.html#menieres-disease-symptoms I can't vouch for the technical accuracy of the above quote, but I've found MDIC to be reliable. Anyway, interesting that the difference between dizzy and vertigo is not a difference in kind, but merely of degree. So I wonder if nystagmus (shifting eyes), is occurring almost imperceptibly during mild dizziness. As the eyes do very obviously during a major spinning attack.
I take back what I said about don't worry about your diet. I'm sort of flighty. Take me with a grain of salt.
Kelly, sorry to see you are suffering with this dreaded disease. Your comment on 1 to 2 drop attacks per year is concerning particularly since you mentioned losing sight while driving. I've only had one drop attack in the 27 years I've been dealing with this disease so 1 to 2 per year sounds frequent. I don't want to add to the misery of this disease but is it possible for you to suspend driving until you have a better handle on exactly what you have? Best of health to you.