Hello! I have read many of your helpful posts but this is my first time participating. I was diagnosed with Vestibular Migraine a few months back after about 3 years of on/off symptoms, mainly chronic imbalance, vertigo (not incapacitating but enough to affect daily life), aural fullness in left ear, tinnitus in both, ear pressure….all following a bout of Covid in 2020. I had two kids since then and had relatively no problems during pregnancy and early postpartum. Both times symptoms returned about 6-8 months postpartum. This time, I’ve not launched right into another pregnancy and feel the symptoms ramping up and changing suddenly…on Friday I had (I’d say) my first ever REAL vertigo attack that was incapacitating, intense nausea, can barely move, throbbing ear, zero balance, siren tinnitus, weird hearing like a mild broken speaker…for 8 hours. I took meclizine and slept and finally feel recovered after like 2-3 days. This was different because the start and end was very distinguishable so I would definitely call it an attack. I’ve had a VNG test which was abnormal and positive for Left side weakness (my bad ear) but hearing test done prior to this past attack (on a good day) was normal…mild loss in 4000hrz on L side. I have family history of Menieres on my moms side…VM sounded like my diagnosis despite not having headache history, motion sickness history, aura etc…but now I’m wondering if it was just early Meniere’s. My question I guess is… - does this sound like VM that has progressed into MD? Or MD all along? Or just VM changing? - does an abnormal VNG suggest Menieres over VM? -can hearing loss during an attack be short lived (hours) or is it always days/weeks long? Any advice is so appreciated thank you in advance!
Hi, definitely sounds like Meniere's disease. So sorry. My dad has it in both of his ears. I have migraines too. Have the motion sickness and have had the hearing issues for years as well. I was diagnosed in 2017. Not fun. So so sorry. You need a good ENT. My ENT say migraine and Meniere's are married together! He asked me a lot of questions about my childhood and other things like history of migraines, which I have had since my teens, motion sickness, which I have had since I was a kid, always the one who go car sick and sick on the rides. My ENT has whole floor of building with all testing equipment there in one place the, VNG, rotary chair, the nerve test, etc. I was put on anti-viral, water pill, and prescription antihistamine, and also have diazepam for dizziness/spins (used to be on the meclizine) ondansetron and hyoscyamine for nausea (the ones that melt). He also put me on topiramate for the migraine, sometimes it helps. all of what you described is very familiar to me. You need to be careful and pay attention to signals your body gives you. Sometimes there is warning and sometimes there's not. Sometimes my tinnitus gets louder, and vision becomes distorted, and head/ear is full of pressure. Sometimes nothing! Last year was really my worst. I started to have vertigo a couple of times almost daily for months, from April to July so doctor started giving me dexamethasone injections in my inner ear, which did help cut the length and intensity of the vertigo and vomiting, but then in August I started to have the drop attacks, very scary, so they did a chemical labyrinthectomy in October 2023, which is tough to go through but better that than having the vertigo and drop attacks all the time. I am not trying to scare you or anything. You have to have pills handy where you can reach them from the ground, I also have thing I keep them in on my neck at work, and I always drive in right lane as I have had vertigo twice while driving, scared to death, if you are having drop attacks you CANNOT drive. It is a horrible disease. My heart goes out to you. I am trying to avoid surgery. That is why I did the chemical. You have to find what works for you. But the diet and preventative meds and emergency meds are important. yes this is a very stressful disease, and you need good support and may need help with anxiety or even depression that come with it. Good luck from the bottom of my heart.
There are a lot of things you can try. There is the JOH vitamin routine, certain diets help a lot of us. There is a book "Heal Your Headache" that is worth a read.
Hello! I have Meniere's Disease in both ears. Your situation definitely sounds like Meniere's to me. I suggest you try to log down what you were doing before your attacks happen. For me, with my left ear in y early 20"s my vertigo started around the time I was going to have a menstrual cycle. Water retention...limited my caffeine and salt intake. Plus at that time, my local ENT started on on Triamterene HCL ( which is a diuretic but apparently signifigantly helpful for Menieres fluid retention in the inner ear). My attacks lasted hours and unfortunatley came when I was at work or driving. After 18 months the attacks stopped. Then when I turned 50, one day after eating a very salty meal I started to have attacks again. Plus my husband noticed that whenever we did a hike I would seem to have an attack shortly afterwards. These attacks were wretched. Lasted hours, happenned when I was driving on 6 lane interstates. I found an ENT that gave me steroid shots in my eardrum. Unfortunately for me they didn't help and I ended up having a tympanoplasaty because my eardrum blew out. But beyond that the vomiting and wretching during the attacks put me in A-FIb and had to go to a local hospital for IV Valium to sleep in off and also get my heart in normal rhythmn. These attacks were hours long and lasted for over 2 years. Little did I know at the time that I had a congential heart defect ( found out when I was 64). I was a However, the good Lord sent me an angel. Since I live in Pennsylvania I have access to the Geiginser Hospital in Danville. There I found an ENT allergist. He tested me for everything possible and found out that I was allergic to every single type of tree in my yard. He created a serum which I take under my tongue every day. That was back in 2011. I haven't had an attack since ( Thank God). I was left with a mild to moderate hearing loss in my left ear and severe/profound loss in my right and now wear 2 hearing aids and use Close Caption phone. A drop in barimetric pressure causes me to have fullnes in my ears and panic. So I have a script for Ativan which I take to relieve stress ad calm me down. So If you are near PA you can check out the ENT allergist at Geisinger Danville. Keep track and hopefully you can find a pattern to your attacks. Stress is a very important factor that impacts Menieres. I wish you well.
Thank you so much for sharing your story and advice! I’m trying to gather up as much info as possible right now and be mindful about triggers and such. (But also not get obsessed and overthink everything ) it was definitely a scary experience especially wondering if it will happen again…and knowing it probably will… one thing I don’t feel certain about is that although I’ve had the blown speaker feel, loud high and low tinnitus during episodes, and vibration rather than hearing pitches correctly, I haven’t noticed a dramatic hearing loss during my episodes. Although I was so busy being sick I guess I could have missed it? Is it possible that will develop later or can it be a mild drop?
Thank you! I have it in my cart on Thrift Books! I’m excited to read it. Is there a cookbook you recommend? I’ve heard the Dizzy Cook is good?
I sincerely hope you can be rid of the drop attacks soon. That sounds awful but I completely understand wanting to try any non-surgical conservative measures possible. I would be the same way. So far I don’t know of any permanent hearing loss but I haven’t had an audiogram since my last attack. Is the VNG or other vestibular testing things they want to redo every so often to monitor? I am so far happy with my current ENT. I loved that she took a holistic and conservative approach to what she thought was VM and truly listened but I’ll see what she says about this most recent development. I left a message in the portal to let her know since up until now the vertigo has been more chronic and manageable. Thank you so much for sharing your story! So interesting it runs in your family too. Does your dad have severe hearing loss also? My grandpa did go completely deaf and got CIs but unfortunately never learned how to utilize them well. He was a farmer and didn’t like having to do all the work/dr visits and had become accustomed to not hearing….but i know others who they’ve been a life changer for!
I did not notice my hearing loss until after my dizzy attacks stopped. I used to present a conferences. One I realized that I could not hear questions from the back of the room I knew that it was time to go to an audiologist. I think I'm on my 3rd set of hearing aides..Technology has advanced to much with hearing aides so I try to get new ones every 5 years. You might not think you need them but I would say once you have a stoppage in dizzy attacks, you should go get tested. I didn't realize how much I was missing until I got my aides. Also, I have Menieres in both ears. The dizzy spells in my left ear lasted about 18 mths and basically stopped after that. The righ ear was different. Those attacks were more frequent and lasted about 2.5 years. In both situations I was either in grad school of working under a lot of stress. I suggest you speak with your General Physician or ENT and see if they can recommend something to keep your stress levels normal. I have tinnitus constantly... with a variety of sounds...sometimes loud and sometimes softer. Im used to it. As a matter of fact in the rare moments that I don't have tinnitus it seems very weird. Good Luck thought...you will perserve.. I guarantee
Hi Everyone. I'm a newly diagnosed Menere's patient. I'm no stranger to vertigo attacks and Labrinthtitis. It started mid 2000's and hasn't stopped. After many attacks that left me down and out for days on end and not feeling well for months on end recouping from them I found a new ENT and was told I have Menere's Disease. I have been asking specialists for years if I have this disease with the answer of being no every time. So what has changed? Apparently I now have conductive and nerve hearing loss, fullness, pulsing in my ears and tinnitus . I've also have lost most of my hearing in the right ear and the left is quickly catching up. I've started on a low/ no salt diet. No packaged foods and a lot of water. The biggest change in the two months I've been diagnosed is that pulsing/ fullness in my ears seems to have simmered down some. I have a few questions for all of you: Has there been one or two things that have helped you to feel better and stay feeling better? Do you get frustrated easily with this illness? Anxiety is terrible now! Never in my life and I'm in my 60's have I had anxiety attacks or panic attacks . I am now on a med for that! Hate it! What foods do you all eat in a day? And how many MG's of sodium do you have in a day? And I was also told that hearing aids will trigger my dizziness attacks! Is this true?? This sounds so trivial but I feel alone with this new disease ..... Thanks so much for listening! Rose
Hi Rejoicealways218, I just came across this video by a Dr. Teixido where he “discusses the various migraine symptoms within the ear and explains why these symptoms occur. He then describes treatments for ear symptoms and other related ear disorders.” It is an excellent excellent video that discusses both VM and MM and thought it might be helpful to you if you are still trying to gather info. I am blown away by this information. But it was new info to me. It might not be to you since you have a diagnosis of VM. He also has lots of info on his website and has a YouTube channel. Hope it’s helpful!