Hello everyone! My name is Rachel. I'm 29 years old, work in a hospital blood bank, and as of this moment not diagnosed with MD.....yet~ I say yet because I feel like after researching my symptoms the only diagnosis that could make sense is Meniere's. There are probably a ton of other people on this site asking the same question, but I figured I would get the opinions of people who know more before I have my appointment with an ENT. First, I would like to say my symptoms are confusing. At least they are to me. I've had tinnitus 24/7 for such a long time that I don't know when it started. Also, I had many ear infections as a child and needed PE tube (3 sets, both ears). So I know I have a good bit of scar tissue on both tympanic membranes. However, during my "attacks", my left ear: •tinnitus becomes extremely loud •feels like something in my ear blocking the canal. •between moderately severe to profound hearing loss(the tinnitus is not what keeps me from hearing) I have mentioned my symptoms to my doctor years ago when it first started happening and have an audiogram. Audiogram shows: •mild hearing loss- right ear •slightly more normal but still mild hearing loss- left ear •conductive •low frequency/reverse slope "Attacks" seem to happen in my supposed "good" ear -_-;; ALSO, maybe 2 years after these symptoms started, I randomly would have short bouts of vertigo. Not frequent or severe at all and would happen during "attacks" as well as not during. I can count the times i've had vertigo (during & not during attacks) on one hand. Most recently a few days ago. I ended up going to sleep with it and waking up fine (it started while laying down watching TV). So i'm confused to say the least. I feel my symptoms pretty much fit MD.....but then again, I thought MD was sensorineural, and I have conductive hearing loss. Could my hearing loss not be MD related but actually from the scar tissue on my ear drums despite it being a low frequency loss? I have read research on cochlear conductive hearing loss in Meniere's patients. There's not much about it though. https://www.ncbi.nlm.nih.gov/pubmed/17483606 https://www.ncbi.nlm.nih.gov/pubmed/2719083 If anyone would like to grace me with their thoughts, I would be more than appreciative! Thank you everyone! -Rachel P.s •I will be seeing both my regular doctor & an ENT soon. •not taking any prescribed medications, only supplements that I started after all symptoms started. •blood tests have all been normal. Thanks again!
I offer you the following from the MDIC website. "Classic" (typical) Meniere's Disease is the term given to the condition having the following four symptoms, after thorough testing has determined no other cause: Episodic, fluctuating hearing loss. Episodic, fluctuating rotational vertigo (a form of dizziness). Episodic, fluctuating tinnitus (a sound heard when there is no sound). Episodic, fluctuating aural fullness (a sense of air pressure in the middle ear, as if descending in an airplane; however, it is *not* actual air pressure in the middle ear; Meniere's Disease does not affect the middle ear). CAUTION: It is not possible to self-diagnose Meniere's Disease. Meniere's Disease is *not* defined by its symptoms. There are many disorders that have the same symptoms as Meniere's Disease. A differential diagnosis with diagnostic tests is required. For a diagnosis, you *must* see a licensed and qualified medical professional. When I was given the diagnosis in 2010 I was told by my ENT that it was a “work in progress” diagnosis. At the time I found that slightly unsatisfactory. With the benefit of hindsight, I can now see why he said that.
I appreciate the quick reply! However, I feel I should mention I know I must see a licensed professional. I have already made appointments with my primary care as well as an ENT and made a short note at the end about it. Also, I'm not looking for an exact diagnosis from anyone on the internet, but maybe rather a discussion of typical vs non-typical symptoms. I'm familiar with disorders that are not necessarily defined by symptoms, as I have been diagnosed with PCOS for 11 years and it's quite the pain haha! Thanks again though!
Just to throw my 2 cents in, my diagnosis about 8 years ago came, I feel, after a rather brief consultation with the ENT guy at the hospital here. He did run one test with the hot / cold water in the ear but said that whatever the outcome of that test, it could be, or may not be Meniere's but based on his experience, it most definitely was . . . here take CERC for the rest of your life and thanks for coming. Recently I thought I'd start from the beginning again with a new ENT who came recommended and showed lots of promise and he ran a couple of tests giving me the idea that this was just the start of a series of tests he would be running, but based on the results of the MRI and PEATC he said he was sure it wasn't Meniere's, but he didn't know what it was, and that was the end of that as there was nothing he could do. I'm sure Meniere's is difficult to diagnose but really, it doesn't seem that difficult to work out a standard set of tests that would eliminate other causes and leave you with a reasonably solid diagnosis.
Hi ConcertBunny, Welcome to the site. Many people find full relief through various methods and then move on with their lives. 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.
ConcertBunion I'm just going to be frank, it sounds like Meniere's. After you get a real diagnosis, and it is indeed Meneiere's, my only advice is to not dawdle. Depending on how severe it is, and how sad it's making you, I'd go for the real treatments ASAP. Such as Gentamicin injections. If those don't work, go for a VNS. So many people have wasted years on various middling methods. Don't be among them. I'm not a doctor. This isn't a doctor's forum. You want the advice of a yahoo? well there it is. Don't mess around.