Hi Everyone, I am so glad I found this forum. Having MM is bad enough, but as you probably know, other people cannot really relate to what you're going through. I've been reading various posts here the past few days and have learned a lot. I am almost suffering from information overload, though, because there are so many various theories related to MM. Here's my story: My first real experience with MM was a year ago. I went up to the mountains for the weekend with family. While there my ears felt "plugged" and I was experiencing a vibration/echo in my ear. I hoped it would go away when we got home, but it didn't. We'd recently moved across the state and had yet to find new doctors, so I was heading to an urgent care when the vertigo hit. I was sweaty, dizzy, heard noise in my ear, and couldn't walk straight when we got to the urgent care. The doctor looked at my ear and said I was having some pressure problems because it looked like my ear canal was "sucked in." He said it would go away in a few days. Over the next several months, I experienced the "plugged" ears on and off, but no vertigo. We went on a Caribbean cruise at the end of March, and I have had chronic, non-stop tinnitus and a "plugged" ear ever since we got off the ship. It was our 5th cruise. I experienced balance issues previously post-cruise, but they were more swaying on standing up and feeling a little off balance at times. A few days after we got home from the cruise, the first vertigo episode hit at bedtime. It was my worst so far, with a piercing screeching in my ear, nausea, and horrible dizziness. All I could do was lay absolutely still and pray for it to end. The first month, I only had 2 vertigo episodes, but in the last month I have had about 8 of them lasting at least 2 hours. I threw up during one of them. I was referred to an ENT a month ago. I came in with a list of my symptoms and how long they had been going on. He didn't ask a lot of questions that were likely pertinent, but I didn't know at the time. Such as that I've always felt a fullness or pressure in my ears since I was a teen. He seemed fixated on the fact that I had been taking Diovan (for 12 years) and said that was probably causing my dizziness. I got the feeling he was just treating my tinnitus, and in the beginning of this I didn't know that the vertigo and it were related. He ordered a MRI and hearing test for me. My vertigo episodes got worse after my first visit, so I went back two weeks later and he was zero help. He told me to take meczline and zofram. He asked me if my symptoms were related to my menstrual cycle and I told him I'd been in menopause for 6 years. I left so frustrated because I felt like he thought I was dramatizing what i was going though. I had a hearing test a few weeks ago and the doctor (a PhD) talked to me afterwards. He was very thorough when listening to what I had been experiencing and asked me a lot of questions. After the test, he told me it wasn't his place to diagnose me, but he asked me if I'd heard of MM. He told me that I had 4 of the symptoms that they use to "diagnose" it. He forwarded my results to the ENT. I took my husband in with me for the last ENT visit, after my hearing test, and when the doctor told me he didn't think I had MM (by this time I had done some research about MM) I asked him why. When he listed the symptoms, such as the vertigo, my husband told the doctor YES she does have that. She has to lay in bed for hours with it and YES she is perfectly find after an attack. It was pathetic that he didn't believe me but he believed my husband. After he reviewed the symptoms, he said "Well it does sound like MM. Be sure to protect the hearing in your good ear. Here is a brochure for a doctor doing clinical trials in town. Give him a call." He prescribed a diuretic and told me to take it when I experienced the vertigo. My MRI was "unremarkable." My hearing test showed healing loss (30) in my left ear. I have been doing a low-sodium diet for over a week, with no change in symptoms. I took the Lasix yesterday and I did notice last night that my ear seemed quieter and my hearing was better. I have been watching for "triggers." One of them is stress. I tend to have more episodes on the days when we watch our toddler grandsons. Thankfully, I don't work because I would be under even more stress with the number of episodes as I have. I am a full-time, online, college student, though, and this has really cramped my ability to do homework. There are no "real" MM specialists in my city, they're all about 3 hours away. I would like to get a second opinion about MM. I saw some recommendations for neurotologists in Sacramento and LA (California). I'm considering making an appointment with Dr. McKennan in Sacramento. Does anyone have anything to say about him? Thanks for letting me get all this out. I welcome everyone's feedback.
Hi Renae, Welcome aboard. There is a lot of great info here. Have you tried antivirals yet? If not, read this paper and all the threads on this forum about them. There have been a LOT of folks who have gotten their lives back to normal via this method. http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf
Welcome Renae and I'm sorry you are suffering. I echo what Scott said on the antivirals. I've been battling this beast for 27 years and if I can offer one piece of advice I would say you have to be vigilant about this every day. I'm currently on the full JOH vitamin regime and prescribed antivirals. My disease seems to have migrated from the occasional severe vertigo to now regular disequilibrium. The tinnitus and hearing loss have been constant. I've been on the AVs at 3g per day for 6 months and have been doing much better. I use generic so I ran into a brand (Mylan) that did not seem effective and sure enough others suffering with herpes viruses have had similar complaints. I am currently back on the northstar brand and doing better. I wish you the best. Finding this site has been a God-send for me. Semper Vigilans, Teesdale
Hi renae, Since Sacramento and LA are options for you, is the SF Bay Area any closer? There's the California Ear Institute in Pablo Alto; I haven't been, but a fellow MM suffer who's now in remission told me they have good specialists. If you have Kaiser coverage, there's Dr Yoshikawa at the KP Oakland Med Center; she's a neurotologist and specializes in vestibular disorders. I'm very new MM as well, so I've seen her only once, but she was kind and very thorough in her questions. Best of luck!
Welcome Renae, You story sounds similar to mine. Make sure to read about the John of Ohio (JOH) regimen. Diuretics and steroids had no positive affect for me. Low sodium took me from full time symptoms to cyclical symptoms. JOH reduced the severity of my symptoms to where the bad part of the cycle is limited to fullness and tinnitus. I have not tried prescribed antivirals yet. The cost of JOH is very reasonable and it helped me. I have not had any vertigo or dizzy spells since last December. There is no silver bullet as you may have already deduced. This forum is full of information and paths to pursue. Regards, Kevin
Renae, your experience sounds so similar to mine, three ENTs each with different diagnoses since the onset of my illness in November 11, 2016. I suffer from occasional vertigo incidences to constant bouts of dizziness and being lightheaded. I have headaches, severe tinnitus (all the time now) and a severe hearing loss. I also have hearing distortions and cannot hear low frequency sounds. In addition, I suffer from brain fogs, headaches, and depression and have severe difficulty dealing with noisy crowds and social situations. It has been very difficult and I feel for you. I am sad that I retired to have only eight months of good heath. So much in my life has changed, and I am trying to deal, somewhat unsuccessfully. I am on steroids through a tube in my left ear and use Xanax, Zoloft, and other sleeping drugs to help me. The only drug to reduce the tinnitus is Xanax, but I have been told it can be highly addictive. I see a Neuro-Otologist. I am also on a very low salt and no caffeine diet that is supposed to help. I am close to starting the viral treatment but want to give my current doctor a try--so far very limited success.
After experiencing an 8 1/2 hour severe vertigo episode yesterday, I was motivated to get an appointment with a specialist this morning. It was awful and I almost missed my daughter's birthday party. So, after seeing a recommendation on this board, I made an appointment with Dr. Derebery at the House Ear Clinic in LA. It means making a 3 1/2 hour drive one way, but I don't care. @Just ducky, I didn't see your reply until just now. I sure appreciate your suggestions. My lousy ENT here did offer to refer me to Stanford, so I was leaving that option open. What's frustrating is that despite all the lifestyle modifications I've made in the last two weeks, low-sodium, no caffeine, no aspartame, and no alcohol, I am worse than I was a month ago. My ears were so bad that I had to wear earplugs on Friday and Saturday when we went out. My symptoms are accelerating and it scares me. I spent 15 hours last week totally debilitated with the vertigo. Yesterday's vertigo was so bad that I started throwing up, so I took the Zofran, which did help the nausea. I also took Lasix, which I'm not sure does much because I've been taking it 5 days. Thanks for sharing your stories, everyone. This is such a scary disease. It has really humbled me by giving me a new perspective on things. When I was finally able to get up from bed yesterday, I didn't care that my husband hadn't cleaned up enough before our guests arrived for the party, I was just glad to be able to enjoy them. Today I feel fine, almost like normal. My hearing is usually good after a long episode and the tinnitus is fairly quiet. Thank heavens for the good days, even if they are few and far between.
Renae, Hope you get help from your new Dr. I was fortunate to have someone drive me to my first appt. as I felt too dizzy to drive. I've been on Acyclovir 800mg 3 x a day and now 2x a day and low sodium for around 3 mos. now and feel better. I haven't had a vertigo attack for about 2 mos. and feel safe to drive most days.
"Thank heavens for the good days, even if they are few and far between." How pathetic for me to think about how nice silence would be. I know mine could be far worse but the tinnitus has been a companion for over a decade. The MM just brought it to a new level with definite cycles.
@marie, Thankfully, my husband is retired now so he can drive me. I realized the other day that the days of my driving outside of our city are over for now. Sometimes I have yet to wrap my head around how much my life has changed in just the last month.
@June, I have an appointment with her tomorrow (Wed) at 1pm. Do you have any advice or suggestions for my visit?
100% what June said....get under a doc that specializing in dizzy balance and MM disorders. Ok to listen to folks here but listen to the pros. Derebery is a top 10 in the country. Worth a few miles drive. You need a full medical workup for MM. And a progressive treatment plan. The good news is that you will be ok if you do that. If you want a great primer for you and your husband. Here is it..... http://www.dizziness-and-balance.com/disorders/menieres/menieres.html Dr Hain in Chicago (author) does the best job in MM education IMO. Plus a nice guy. Will be a good second opinion place for you. Derebery and Hain (if needed) is a knock out one two punch.
renae, in many cases, eustachian tube or ear canal issue comes with Meniere's. When you experienced "plugged" ears or pressure problems, I recommend conducting ear clearing method as soon as you can, because keeping this status can make the things worse. Valsalva maneuver and Frenzel maneuver are the two major methods to equalize air pressure in the middle ear and help drain fluid it may contain. https://en.wikipedia.org/wiki/Ear_clearing If several attempt doesn't clear plugged status, mandibular exercise may help, too. https://www.youtube.com/watch?v=Le0ivHy7jZM
To add to Hiro's comments ref the sensation of fullness or being stopped up or feeling pressure.... Usually in MM its not a middle ear or tube condition. The fullness is a sensation that is actually occurring in the inner ear and sending that signal to the brain. All sensations are electrical/chemical that are interpreted in the brain. (just like pain etc) So fullness that occurs....after ruling out a middle ear or pressure equalization issue by a physican....and is accompanied by other MM symptoms....noise....episodic vertigo....classic hearing loss pattern....reduced caloric ENG test....etc etc. then its just one of the symptoms caused by the inner ear disorder. In this case potentially MM. It can vary over time with intensity just like the other symptoms. I am bilateral mm and have had pressure, ringing, roaring, now deafness, and episodic vertigo. I have a healthy middle ear and eustachian tube. So whatever fits for you. Be sure your source of facts come from the right doc not from me!!
@sjw111, you're absolutely spot on! @Hero, I tolerate the altitude okay, we flew in August, November, and March just fine. Last November, we went back to the mountain cabin where it all started a year ago, without incident. @Coach Betz, oh gosh, the screechy ear! I had the malaise and depression, brain fog, and shitty feeling for most of last week and this. GOOD NEWS!! My appointment with Dr. Derebery at House Ear Clinic yesterday was everything I hoped for and more. Their team is awesome, so patient, and thorough. She confirmed I have MM and that I am in an acute-type phase now. She said we need to get it into a more manageable phase. So, I have a treatment plan (Plan A) that makes sense and I am hopeful for the first time in a while. I have "rescue meds" that I hope work even a little for the vertigo. She said I was fine for travel. As noted to Hero above, I was concerned about flying and altitudes, but I flew just fine the rest of last year and have gone up in the mountains (including over the grapevine to LA yesterday) since my first attack a year ago, just fine. I was just thinking this morning on how fortunate I was to do the research and get real help. Yesterday as my husband and I were sitting in the treatment room, I said to him that I was relieved to be in competent hands, but that I was aware that there are so many people out there who accept sub-par medical treatment because they don't feel they have options. I would have done anything to be able to drive the nearly 4 hours one way to see Dr. Derebery, and we are doing it again in 2 months for a follow-up and hearing test. Today is the beginning of day four without a vertigo attack. It's been a while since I went more than 2-3 days without one so I am hopeful. Hope you guys are doing well out there today.
renae hope your appt. was helpful. I came to this forum around 3 months ago, freaking out. Now I feel better physically and accept medication and diet. Very rarely do i feel too dizzy to drive and have relaxed a lot about having MM. Prayer and meditation have helped.
Thank you, Marie. After I posted that yesterday, I had a terrible Vertigo attack that lasted over 13 hours. Started at 11:45am and was still going at 1am. When I woke up at 5am this morning, it was gone. I'm not sure that my Valium helped much with the dizziness, but it did calm me and allowed me to doze on and off all day. The Zofran helped calm the nausea. I think the prednisone is kicking in, last night I felt very minor twitches above my affected ear and the tinnitus is quieter today. It usually is the day after an attack, though. Most of all, my head feels clear for the first time in a few weeks. No foggy brain. I am praying that dietary changes and meds get this thing under control. I'm glad it's been working for you.