Good evening, all!! This is my first post to the group. I was just diagnosed January 29th with MD. I have been battling symptoms and bouncing through doctors since October 2017. I found a good neurotologist finally, and went through the full range of tests. I have already lost 41% of my hearing in my left ear, constant tinnitus, headaches, dizziness and nausea. I do have an appt with a neurologist tomorrow in hope of finding help with the headaches. I am also having the micro wick placed in my left ear on Tuesday in order to deliver steroids as part of my treatment. My life has been turned upside down! (As you all can relate to!) It is so helpful to know there is a group of people that COMPLETELY UNDERSTAND what I am going through. I am one of those people who suffers from the dizziness, ear fullness, nausea and headaches every day. I have had 3 attacks in as many weeks, even though I have been on the low sodium diet, etc. Thank you all for being here!!
Are you in the states?...what do they have you on so far? Diuretic? Betahistine? have you seen an ENT? have they done an MRI to rule out all of the other stuff? Do you have sinus trouble? have you had migraines....first thing if you haven't is get to a good ENT. drink lots of water little salt little caffeine and little to no sugar.....Why have they gone to the steroids already?
Hello Traci,
This is a club where we wish we would never get any new members. Bluesman asks all the right questions. This Meniere’s is a very fickle syndrome. After your first attack or series of attacks it can go away for years. In my case 13 years. Do your homework and read as much as you can on Meniere’s so you can be more in control of your treatments. I believe life style changes are important..Good sleep, relieve as much stress as you can, track your triggers, track what you eat, get exercise, and stay as positive as you can. This form is great for support and information.
I wish you you the best.
Jim
Hello Traci, Welcome to the group, You are correct, we do understand your illness. I agree with Bluesmann and Jim, I would seek a working treatment plan to help you as much as possible, If you can get your symptoms at a more tolerable level this would be great. There are several medications that may help you, of course not all medications work on everyone. The effects and side effects of medication varies so greatly, it's almost a trial and error process. I hope your neurology appointment tomorrow will shed some light on those headaches. I am a migraine sufferer as well as meniere's, topamax and imitrex works fairly well in managing those nasty migraines.
Thanks for posting on this forum, We wish you the best!
¯`v´¯
Thinking of you!
`*.¸.*´ and we all send prayers during this
¸.•´ ¸.•*¨¸.•*¨ difficult time, We are beside you!
(¸.•´(¸.• (¸.•´¸¸.•¨¯`•.¸¸.♥ Bertman
I was interested that you gave said little to no sugar. I been told to eliminate caffeine, alcohol and reduce salt to 1g a day but sugar wasn’t mentioned. Is sugar considered a trigger too?
I won't repeat what others have already said apart from urging you to get onto betahistine asap. It is a very safe drug with minimal side effects (gastric irritation mainly that can easily be managed by taking with food) and is most likely to reduce your tinnitus, may reduce your hearing impairment and if the dose is high enough will after about a month stop your acute attacks of nausea etc.You will need to take it for an extended period ( 5 - 6 months) and then hopefully you will be in remission.
Good luck.
Hello Traci,
Sorry to here about your symptoms..
theres already sound advice by the other member
which is great..
If you sufferd migraines before the attacks then you
probably need something for that but if it is a symptom
of tinnitus you need some coping methods maybe
light meditation and breathing exercises to help relieve
tension also i think its been mentioned duitetics that will
help with water retension to water can make you feel
pressure in your head that with stress will amplify your
symptoms..it seems a bit strange your going to steroids
so early as i thought they would try you on meds already
mentioned, there are a lot of coping vids on youtube..
keep an eye on your diet and blood pressure ..
hope this helps...
Blusman was asked the question about Sugar as a trigger, but I hope you don’t mind if I chime in. Tracking my triggers over the years, I have found keeping my insulin levels as steady as possible is best for me. Spikes in insulin, I have read, acts to retain fluids, much like too much salt. I eat a low carb diet because it keeps my insulin levels steady and acts as a natural dietetic. This allows me to keep hydrated , which I found to be really important, and helps my kidneys flush out excess salts. Remember, this is just my experience, as no one size fits all. Track your foods, and your triggers, and find what is best for you.
Take care,
Jim
Many things can trigger or a combination....after journaling one thing I have found is that I have a local coffee shop in which I would get a chai tea every now and then. I started to notice dizziness or "blips" of the dizzies on days I would get a nice big cup of chai. I read the ingredients and it was loaded with sugar. What I do now since I really like chai and don't drink coffee is make my own and cut down the amount of chai I put into the cup. Keep in mind everyone is different but we all have some type of trigger. Getting to the bottom of what your trigger is will help immensely. Caffeine, Alcohol, salt, stress, looking up for too long, sugar, etc.... journal and find your trigger.
Good luck this is a great group with lots of first hand help. Come here often. Everyone is very helpful and we all know first hand how you feel!
Hi traci.I know how you feel, my life has been turned upside down from this disease. I am only 60 yrs of age and very active riding horses, etc. i had 4 episodes last month, but none were drop attacks, and my ent thinks I am doing good, me not so much..... Since i started Betahistine the attacks are less severe, meaning no drops out of the blue. I take Betahistine, Hydrochlorathiazide, and Potassium for my Menieres. I hope you can find relief, best of luck to you.
another thing I may mention is not sure how many have sinus issues......I had a sinus operation 3 years ago which helped a lot now when I feel sinus coming on I take some essential oil (peppermint) and rub a drop across my forehead and the side of my nose...it definitely helps me....keeps it clear.....im no doctor and only know certain things that help me.....
Hello Bluesmann,
Touche' on the sinus surgery, I had Functional endoscopic sinus surgery
to deal with the causes of pressure on the face around the eyes, I have two nasal sprays I use daily to prevent the inflammation in the sinus cavities. When an individual has a migraine attack and sinus pressure it is pretty unbearable at that point. Any combination of meniere's symptoms along with sinus issues is a recipe for disaster. If anyone with meniere's also has a sinus issue, I would address the sinus issues as soon as possible. A meniere's patients head is busy enough without sinus issues, or migraines for that matter. Best wishes! Bertman
Hey, Bluesmann! I am in the states. I have done the MRI, CT and about 5 balance test over the last 4 months. So, my diagnosis is migraines that overlap and aggrivate the MD. My ENT here is a neurotologist who's specialty is this area. Due to my constant dizziness, headaches, tinnitus and 41% hearing loss, we decided to go straight to the steroid drops/wick. I've been doing low salt, no caffeine or alcohol for a few weeks now, but can't seem to find a trigger... I'm hoping if I just keep at it, I will figure it out.. just hoping for relief of my headaches and dizziness soon...
Hey, Bertman!! Those are the 2 main meds they put me on, but cautioned me that it may take a few weeks to see the benefits as the topamax builds up in my system. Then I have something for nausea and an additional med to help with the headaches while the topamax kicks in... so overwhelming! I am tired of being dizzy ALL the time! I have about 1.5hrs in the morning with no headache, then it starts and builds throughout my day. Here's hoping!! Thank you!!!
Thank you, everyone for the great information! I have had no sinus issues other than the 'sinus infection' that kicked all of this off back in October. I never had sinus pressure or congestion... not even so much as a cold! But went to my PC due to screaming tinnitus in my left ear (after noticing hearing loss for few months) and a headache that wouldn't ease up... it was making me sick. Then I started noticing the dizziness with the fullness in my ear, sharp pains in my ear, and it all started to go down hill after that. Currently, I am 49yrs and walk like I'm 80yrs, very slow and touching the wall or something, for support. Hopefully, relief is on its way as I continue to journal and track to get this under control, too.
Hi Tracy. Your doctor may have put you on steroids at this time because he thinks some of your hearing loss may be do to inflammation in the inner ear, and if reduced/eliminated your hearing may partially return. I'm curious about your description of steroid application. You say "micro wick".....what is that? I'm only familiar with steroids being delivered into the inner ear via intratympanic injection through ear drum. Can you clarify please?
Thanks.
Welcome Traci, I sure wish we didn't have to know you because of MD...it's a struggle we do all understand. But...I'm glad that tje group is here for support and ideas. The only constant about MD is that it's slightly different for everyone! How frustrating is that? I recently got bilateral hearing aids as I've had MD for many years and now have permanent hearing loss. My attacks have eased, thank goodness, but I still have terrible tinnitus and am slightly dizzy all the time. Sugar is most definitely a trigger for me, I'm on a low sodium/low sugar diet. Staying hydrated in a consistent way is helpful too. Just trying to keep everything on an even keel helps me. If I have a huge meal or the wrong kinds of food I get the ear fullness flare up plus increased tinnitus. Yikes!
Hang in there and keep the faith! Things will get better!
We're here if you need to vent. 
All the best,
~Mary
Hello Traci, I do understand, I have been dealing with chronic dizziness and ocular migraines, for about 4 years now. It is difficult to contend with. I am dizzy everyday, all day, the migraines come and go. I have had to adjust to feeling like a drunk sailor on board a swaying vessel. I am almost always dealing with nausea and motion sickness. I have vertical vertigo and tinnitus in both ears. Left ear is profound hearing loss, right ear is moderate hearing loss. I hope you can find some answers and solve some of your issues. Bertman
Hey, Tanney... sorry for the delay in getting back to you. I had my procedure this last Tuesday and have not been doing very well since. The micro wick that I am referring to is the Silverstein Micro-wick. It's basically an ear tube with a wick in it that lays in your vestibular chamber. As you put the steroid drops in your ear, they saturate the wick and distribute down to your vestibular chamber.
At this point, 5 days after my procedure, I have no hearing in my affected ear now. My migraines have not eased, despite treatment for those as well. And I continue to experience MD symptoms in my right ear now as well. I feel utterly defeated. I am calling my doctor tomorrow, but it's difficult to see him if need be since he is an hour away and I cannot drive myself since I continue to be so dizzy and have vertigo attacks...last one was just 2 days ago.
So you had something similar to the gel they were developing to lay in the ear as opposed to steroid injections in the ear which in y ent opinion would stop working once they washed out which was fairy quick....hopefully the effect will "kick in" and help you! prayers your way