Posted , 14 users are following.
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!!
2 likes, 48 replies
Bluesmann traci21118
Posted
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?
katie20356 Bluesmann
Posted
Bluesmann katie20356
Posted
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!
traci21118 Bluesmann
Posted
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...
Bertman traci21118
Posted
jim79476 traci21118
Posted
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
Bertman traci21118
Posted
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
traci21118 Bertman
Posted
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!!!
NeddyO traci21118
Posted
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.
stephen61100 traci21118
Posted
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...
jim79476 traci21118
Posted
Take care,
Jim
diane04068 traci21118
Posted
Bluesmann diane04068
Posted
Bertman Bluesmann
Posted
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
traci21118 Bertman
Posted
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.
anna-lise66666 diane04068
Posted
This is a really bad day for me with the tinnitis. I took 2mg of activan a few days ago and it lowered my tinnitis quite a bit. But now its back . my vertigo is manageable but when taking activan it makes my vertigo worse My husband says I sound drunk and look drunk I reel really bad to the one side. but at least the screaming is lowered to a volume I can deal with. You are right your life is turned upside down, hard to find any joy in it some days others are not so bad
When you take Betahistine does it help with your tinnitus ?
Join this discussion or start a new one?
New discussion Reply