Hi, so I am new here. Little background information; I had been having these "spells" for the last 3 years (dizziness, near-syncope, tinnitus, and really high blood pressures any time this happened) I had no diagnosis as symptoms would disappear for the longest time and the doctors would have nothing left to test for. Last Nov I had my worst episode yet and was hospitalized for 5 days. I should be grateful because that got me referred to my current neurologist, and after 2 more months of testing, I finally have my diagnosis. I have daily vertigo attacks that come with vomiting and diarrhea, hyperacusis so no loud noises (my husband is a drummer and fan of all things loud), migraines, extreme fatigue, and brain fog. My doctors have given me Effexor for migraine, aldactazide as a diuretic, phenergan for the vomiting, and meclizine and valium (that they tell me not to take-if my brain has any hope of compensating to its new condition) I've lost all the low and high frequencies in my left ear and I am in my second go around with vestibular therapy. I work for a great medical group that has been fabulous through all of this, but I have been off of work for the last 4 months and have no idea when or if I'll be back. I'm here I guess because I don't know what else to do. My doctors won't let me drive (probably good advice). I can't go back to work, or even go out of my house without having someone with me. No one can give me any type of timeline for these symptoms. Honestly, it all feels so hopeless right now and I know that this is just starting. I apologize if this all sounds like I just feel sorry for myself. Just looking for anyone with similar experiences. Anyone that can tell me where to go or what to do. How do you go from living a full, too busy life to being housebound and not loose it? I would just love to hear about everyone's experience with Meziere's and how they got back to living. Thank you to anyone who read this :-\
I'm currently struggling with the same thing. Get a walking cane. It helps an unbelievable amount for getting out of the house. Have you tried an oral steroid or antivirals? I've heard a lot of people have had luck with those. Good luck! You are not alone. This forum has been a life saver for me.
I have learned a LOT here and find people very supportive. I have an appt. with an ENT who treats Meniere's next Wednesday. I have given up coffee, milk and diet coke, still trying to cut back on salt, chocolate, processed food, gluten. I've always known should eat more vegetables, fruits, whole grains, chicken and fish so I'll continue to try. I'm also waking more now that I'm not working. I'm fortunate that I have pretty good balance. I was told to go to vestibular therapy but so far haven't gone because of no income right now. Thanks everybody for giving me hope and encouragement to seek treatment and good luck Melissa.
If you haven't tried antivirals, then it's the best first option. http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf
HELLO!!! I GOT GREAT NEWS!! Background: I am a 24 year old male that has been diagnosed with Meniere's Disease last year. I was having severe episodes of vertigo that at one point was every-other day. I had a CT and MRI both done to rule out structure abnormalities and acoustic neuromas. Anyways, there is actually a clinical trial going on with a new drug (OTO-104). It is actually amazing. The drug is a steroid injection that is accompanied by a gel, so it keeps the steroid in the inner ear space and keeps it from draining out (which would be the issue from a normal steroid injection). I highly recommend googling OTO-104 (or click the following link: http://www.otonomy.com/pipeline/oto-104/). The drug is currently showing promising results (95% success rate thus far) and is currently on "Fast-Track" pace with the FDA. It will hopefully be approved and released by the end of this year (2017) or early 2018. I am currently 25 days vertigo free (was injected January 18th-took a few days to allow my eardrum to heal up), which is the longest I have gone ever since my first episode 2-3 years ago. I used to wake up every morning thinking how my day is going to suck because there would be high chance of vertigo. I am currently a student receiving my M.S. in Physiology and trying for medical school. It's hard for me to explain on my applications how my grades rapidly declined over the past 2-3 years because of experiencing vertigo during tests and just every freaking day. With all this being said, I am doing great now. I will get another injection on April 13th because I will be actually taking part in "Part-2" of the study, where they will be examining timelines to see if injections every so often impacts effectiveness of the treatment and presence of symptoms. If the clinical trial isn't in your area (I am enrolled in Virginia Beach, VA) or it might already be filled with enough applicants, there will be relief soon! I am absolutely loving it right now. Just hang in there! - Colin P.S. You might see this on another post. I just responded with it to a "steroid & injections" post.