Posted , 8 users are following.
I think I have menieres diesease and i would feel comfort if someone with the condition could speak to me about it. I feel alone with this problem and I'm wanting to open this discussion as id like to have someone with this problem to talk to me about the symptoms as I'm trying to figure out what is wrong with me please x
0 likes, 18 replies
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paula08289 alison_00357
Posted
Hi Alison
Unfortunately I've had it for 10 years. I don't know your medical history and if you have been formerly diagnosed with it by a neurologist and ENT. There are many things a person can have that need to be ruled out before you get a Menieres diagnosis but maybe you've done alot already in that area. What kind of questions do you have?
sky57660 alison_00357
Posted
louise0703 alison_00357
Posted
Hi Alison, I've been recently diagnosed. I suggest you get an audiogram, full blood tests and MRI as soon as you can, then take them to an ENT specialist. You should then get a diagnosis. There are lots of websites that will list the symptoms. What I have found is watching too many YouTube videos and reading too much on the internet depressed me, I think a lot of people on there have severe symptoms and you can start to believe that you will to. If you need to chat, you can personal message me, I live inn sydney Australia.
alison_00357 louise0703
Posted
Hi Louise so good to hear from you,are you deaf at all I went to bed one night and couldn't get up for a week and deaf in my right ear and also tinnitus I have had blood tests and an MRI no tumour since it happened 2.1/2years my life has changed things that I could do with out thinking are so hard now and no one has o
louise0703 alison_00357
Posted
My hearing was about 60% in my right ear when I had my hearing test, but it fluctuates - today for instance I think both ears are normal. I'm off sick from work at the moment, I find my symptoms much worse when I'm in the office (open plan) and lots of stress. Try to get an audiology test, my audiologist said my results alone showed Menieres, she was 100% certain.
alison_00357
Posted
louise0703 alison_00357
Posted
If you want to tell me your symptoms I can try to give you my opinion, based on my 18 years of vertigo x
alison_00357 louise0703
Posted
As a list tinnitus,headache's,foggy head,bad trouble with easy household tasks changing bed hoovering anything that involves motion,completely deaf in right ear and my right eye seems weird,feeling sick but I am diabetic on insulin and always put it down to that ,I think I may have been suffering for quite a few years but the attacks were so far apart I would sort that forget about it,but when I would mention the falling down always to my right I thought it was blood pressure and the doctor would say no my pressure is good,I now have a bad shoulder from falling what do you think 😊
louise0703 alison_00357
Posted
alison_00357 louise0703
Posted
louise0703 alison_00357
Posted
If you didn't have the hearing loss I'd say it sounds like BPPV, but with the hearing loss and tinnitus, sounds more like Menieres. Try to get to a specialist and get diagnosed. I've found reducing salt has helped the last week, if you haven't tried that, try xx
JMJ alison_00357
Posted
Hi Alison,
Welcome to the forum. Sounds like you're feeling miserable — I'm so sorry. You can find lots of support and information here. We've all been there, feeling sick and alone. But don't give up hope. Whether your diagnosis is labyrinthitis or Meniere's Disease, there's help for you. The diagnosis of Meniere's Disease isn't that clear cut and easy, right up front. And, to make it even more complicated, labyrinthitis can initially look very much like it. The symptoms of labyrinthitis include dizziness, vertigo, nausea, and sudden hearing loss.
The diagnostic criteria for Meniere's Disease include:
Two episodes of vertigo, each lasting 20 minutes or longer but not longer than 24 hours
Hearing loss verified by a hearing test (typically low/medium frequency)
Tinnitus or a feeling of fullness in your ear
Exclusion of other known causes of these problems
But along with those "bare bones symptoms", there are often some pretty bizarre sensations.
What exactly are your symptoms, and what treatment have you received thus far? Are you on a low sodium diet? Are you on meds that are helping with symptoms at all?
Wishing you all the best!
J-
alison_00357 JMJ
Posted
Thank you,this is my first time in one of these places I think you can see my other answers to people can't you? ,I forgot to mention the awful tiredness and the only time I get a bit of peace,but I have to keep tv or radio just not me and my NOISE,I even get headaches doing things like this.hope you can see my list
JMJ alison_00357
Posted
Dear Allison,
Actually, your list of symptoms posted after my list of questions. So no, I did not see them.
Your symptoms do sound very MD-ish. If you have the resources for a private consult, that would probably be the best way to get to the root of things. Additionally, it sounds like you need some meds to get you through, while the doctor works on the diagnostics. Louise mentioned the low sodium diet. That is always the first recommendation to people with Meniere's, as the disease is directly related to fluid overload in the inner ear. That's something you can try by yourself while waiting for your appointment. Most people do a 1500mg sodium diet, and it usually helps quite a bit. Then, if MD is diagnosed, you might be prescribed a diuretic.
If conservative measures don't work, you might ask your doctor about steroid injections into the inner ear. They really saved me from all the symptoms you describe. Yes...MD is quite debilitating when it come to being able to doing basic household tasks! There was a time when vacuuming or sweeping the floor, or even seeing my hand go around while wiping the counters, would make me really, really sick. I'm still working on getting my house in order after ra a year of not being able to clean it, while going through the worst of my MD. But after several injections, it's like a different world. All of those symptoms have dropped away.
I hope you'll book an appointment soon, and that you'll keep us posted as to how it goes.
Sincerely,
J-
nina75421 alison_00357
Posted
I too, think I have meniere's....have not been diagnosed, and am awaiting an ENT appt in April. After suffering a severe initial severe vertigo attack 5 weeks ago, and going to ER, they prescribed SERC to me (Betahistine....16mg. 3 times daily). Last evening i forgot to take my last dose, and this morning I had mild vertigo....kinda tried to make it up today, and am presently feeling almost fine. I am going to go out on a limb here, and say that SERC is a "saver" to me....will NOT miss another dosage....be it meniere's or something else, this stuff is making life liveable for me.....
david66519 nina75421
Posted
I was diagnosed with menieres in 1999. I wont bore you with a list of symptoms but suffice to say after a frustratingly long time of getting an audiogram and seeing an ENT specialist he prescribed me betahistine dihydrochloride 16mg 3 times a day like yourself and it has transformed my life. I may have lost 95% hearing in my left ear and 35% in my right but the world stopped spinning and apart from avoiding social gatherings I lead a normal life 18 years on
nina75421 david66519
Posted
not knowing what my "problem" is as yet, I will attest to SERC being a really big help....until I find out what is causing my dizziness, I WILL NOT miss a single dose of it, for it is really helping....life is 90% normal...