Meniere's Disease

[Michael Leigh]

@glynis
Sorry to hear you're going through a difficult time at the moment and hope you start to feel better soon.
Michael

 

[glynis]

Hi @Michael Leigh ,
Thank you Michael and thanks for ringing me too... love you always glynis x

 

[dboy]

@glynis I'm sorry to read what you have been going through. You give so much support to other folks it is easy to think you are not struggling yourself, whereas the reality is clearly that you are just an incredibly selfless person. I hope things are a little better for you today.

 

[glynis]

Aww Bless you @dboy....
The new medication is working and had a better day so fingers crossed I'm back to my happy self again and planning things again.

Just planned another BTA Tinnitus Awareness day and collection and leaflet distribution in Hanley town centre 16 th February and will be Giving out lots of things and TT leaflets .....lots of love glynis

 

[dboy]

The new medication is working and had a better day so fingers crossed I'm back to my happy self again and planning things again.

I'm really glad to hear this.

Just planned another BTA Tinnitus Awareness day and collection and leaflet distribution in Hanley town centre 16 th February and will be Giving out lots of things and TT leaflets .....lots of love glynis

You're amazing! But for goodness sake sit down and have a cup of tea. (By which I mean don't forget to relax and look after yourself.)

 

[Teri]

Glad you are feeling better @glynis

 

[glynis]

Thank you @dboy ,

Thank you @Teri ,
Just getting room sping when Lay down and get up now and bit off balance but better than I was ....lots of love glynis x

 

[Mand b]

I have been ENT today and hes now saying its a bit of Menieres along with migraine and sent me on my way with migrainemedication. I am upset because I am soconfused. How can I have a little bit of Menieres? I either have it or I don't. Heseemed a bit baffled like he didn't know what to say to my symptoms. I have dizziness but never vertigo or vomiting its always a sense of feeling like I am on a boat or escalator like floating. He told me before its definately not Menieres so why now say a little bit. I have been getting some mild ear fullness on and off but only recently. I have gone 2 years with no tinnitus(didn't hear it) but it flared up again after becoming pregnant/miscarriage. My balance test showed low balance on both sides but audiology said he didn't believe the test results because if it was that low I wouldn't walk so well unaided and said maybe I am anxious which I was. I told ENT this and he disagreed and said it can be really low andwalk fine. I am so confused on what is going on. If it was Menieres why did I go 2 years with no tinnitus? Why do I never have vertigo or vomit? Why does ENT say although my hearing is slighly low its within normal ranges? I should add my hearing is always low when the tinnitus is presentbecause I struggle to hear over it because it can be loud but when its gone I hear fineagain. I am already deaf in one ear frombirth so now I am scared of the future. ENT seems to think I don't need a hearing aidbecause hearing is within normal ranges.This dizziness came on after having mydaughter not straight away but it when I was going through anxiety which I still am. I really don't know what to do or who to turn to. I think I just need a good cry. I feel sohelpless :-(

 

[glynis]

Aww Mand b,
I totally understand how you feel ( confused )
Menieres has lots of symptoms but not all have to be present and some develop over time so he is telling you it could be Menieres with out saying for sure as not all symptoms are their .

You still need medication to help you cope with the dizziness .
I would ask your doctor for a copy of the report when he gets it so you can read what or if he has diagnosed you with Menieres.
Welcome to talk with me on the phone if in the uk just pm me your number...lots of love glynis

 

[Teri]

@Mand b

I have been told that I have atypical endolymphatic hydrops aka/Meneires (I guess the tems are used interchangeably). I don't have all the symptoms either and they come and go. I don't have vertigo but get the dizziness as well.

I wanted to add to glynis' comment. I have had doctors tell me that with Meneires can progress or it may not progress. Some typical symptions (e.g. vertigo) may never show up. Some symptoms may show up then dissapear and never return. Everyone is different.

 

[Mand b]

Hi Glynis and Teri thank you for the replies. Yeh I am in the UK Glynis. I've just woke up from a nap I feel terrible, still hearing the Tinnitus and just feel confused and low. I don't know what to believe. Should I be getting a second opinion? I didn't feel convinced that ENT was convinced himself it came across like he was saying it because he had no other answers along with Migraine. I never thought at 27 years of age I would feel so uncertain by my future. Now I am more scared than ever because if I do have Menieres then it means hearing loss and I only have one ear and also worsening of T and I can't cope with that. It's hard because I have read that Menieres can resemble other ear problems to. And also I think have I had all the right tests done should I have had more investigations? Hearing tests, caloric test and CT scan was in 2013. Why would he say previously its definately not Menieres and always suggest Migraine and now change his mind. I feel like I want to just lie in bed and not move I have no motivation to do anything now I feel like thats it my life is set for suffering and I can't do anything to change it x

 

[glynis]

Hi @Teri and @Mand b ,
Teri is right ,we are all different .
Menieres develops through four stages but for some people it might not progress and all symptoms don't have to be present.

ears giving me trouble at the moment and day 12 of room spins and counting and under my doctors support...lots of love glynis

 

[Mand b]

Aww Glynis sorry to hear that and heres me moaning. Have you been off work then? I hope they are supportive. I do wonder how its going to be possible to hold down a job with this. So basically I must have Menieres from what your saying if presents differently in everyone. I always thought I would be having severe vertigo and vomitting if I had it, i guess not. How long have you had Menieres diagnosis Glynis? Is it really that bad? I am so scared for the future. I guess because isn't T meant to be worse in those with Menieres and get really bad x

 

[glynis]

Hi Mand b,
Yes I have it full on with every symptom.
I only work one and a half hours a day and could not hold down a full time job.
I have had Menieres round about 11 years could be longer and took two years to get diagnosed with it....lots of love glynis

 

[glynis]

Think a positivity post sometimes is needed .

What ever Menieres throws at you,
Their is help to cope and when times get tough,it's time to show your ears who's the boss......lots of love glynis

 

[Mand b]

What tests did you have to get diagnosed? I only ask because of how long it took you to get diagnosed. Ahh thats not to bad then but still allows you to have some independance getting out each day. I am at my placement tomorrow all day and do not feel like it after today. I am thinking of asking to do 2 half days as I have to make sure I do 6 hours in total a week to complete my course. My head says give up because I clearly don't feel healthy enough to do it. I have already had time off due to dizziness. I had so many plans for the future ie saving up for a mortgage and thats never going to happen if I can't hold down a job. You really are a gem Glynis keeping it together and going through this for so long. I think I am going to get more advice and a second opinion because I don't want to label myself if ENT wasn't sure. My dizziness all started when I was going through anxiety and up until now they have always said anxiety even neurology I seen about dizziness and they to said anxiety disorder. So you can see my confusion x

 

[Teri]

@Mand b

You are going to be just fine. This is all new to you which is causing you to have anxietya I am sure, that your body will begin to adjust. I really struggled the first few months, but now I'm managing just fine. When my symptoms arise, I don't get anxious about them. And, as time goes on you'll stop worrying about the what is just as I have. Hopefully you are getting rest at night.

 

[Mand b]

Hi Teri yes your right it is anxiety. I have cried today and had heart palpitations and felt unwell because I feel that scared and confused. Do you suffer dizziness often? I am dizzy every day some days are more worse than others not vertigo but I feel my eyes off focus say in a moving car and then some days its so mild I hardly notice it. But is it normal to feel dizzy every day? I thought its meant to come in episodes. I guess all I can do is try the Migraine medication when I feel dizzy a bit more than usual. Thank you for responding this is my only support right now because no one around me understands x

 

[Teri]

It is okay to cry...been there...done that. Your anxiety will make your dizziness worse. Yes...I had dizziness every day for quite some time...don't notice as much now. When I get anxious...stressed...or if the weather changes...or I have a cold or headache...I notice it more. My balance gets off too. Yes..moving objects and being in a car can cause your focus to be a tad bit off as well. I have never had problems driving...but if I am a passangers and looking at objects zipping by for an extended time...this would lessen my focus. But, that would be true for most people. LOL

 

[Darren13]

@Mand b
Hello just to let you know I'm in the same boat as you. Suffering with the same symptoms and yes been deaf in one ear since birth like you.
I have had problems since mid August and after tests was diagnosed with MD in my good ear, I've not been able to work since mid August and I'm still off now, also had my driving license revoked. I'm about 75 % of the day off balance with tinnitus and on and off fullness in the ear, dizziness comes and goes some days it's not too bad others not so good. Also other symptoms like bouncy vision blurred vision sensitive hearing or muffled hearing in my one ear. And car journeys in the passenger seat looking into oncoming cars is also tricky. Crowds or busy roads are also a challenge as is the darkness , I'm beginning to become more housebound these days which is becoming pretty upsetting and frustrating. So I know where you are coming from. It's all a learning curve which in time you get used to doing or not doing certain things.
Darren.

 

[Jae]

There are some evidence that meniere's is related to herpes viral. Try doing Dr. Gacek's antiviral regiment supplement with John Ohio's regiment, with extra vitamin C. I am currently trying this for my "atypical" meniere's since all I get is the hearing problems (which went away about 2 days ago, after high dosage of prednisone, along with the antivirals, and supplements). If my symptoms don't show up anytime soon (say at least 1-2 year), then it's all good =]

 

[Jkph75]

I recently developed tinnitus. I have had it constantly 24/7 for a week now. I am losing my mind. I only hear in one ear. I went to an ENT PA today who told me that he thinks that my recent pregnancy is giving me pre- Cochlear Hydrops episode. He said that I can't be diagnosed with it b/c my hearing test was normal, even though I feel that my hearing is impaired. I didn't really understand what he was talking about. He said this may develop into Cochlear Hydrops or not. If I did get Cochlear Hydrops that could develop into Meniere's or not. He said he was willing to give me a diuretic if I really wanted it but said he didn't recommend it since I am breastfeeding. I don't understand what a pre-episode is. Wouldn't I either have this or not? How would I get better if I didn't take the medicine? Wouldn't this get worse? If anybody could explain any of this to me I would really appreciate it. I my tinnitus is really really loud. I hear a hollow like sound when I tap on my head and neck near the affected ear. I am assuming it is from fluid. I am really scared. Help!

 

[Jkph75]

I should also mention that I was born deaf in the non-affected ear. My tinnitus is getting worse by the day. What will happen if this isn't treated soon?

 

[davidchampoux]

Never heard about 'pre' cochlear hydrops. Do you feel ear fullness? If you have hydrops, you should have dizziness and/or hearing fluctuation and/or ear pain-fullness...

If I was you, I would definitely try a low dose of diuretics. I would maybe also try a low dose of SERC. I read it helped many people with hydrops/Meniere. I don't see how it could affect your baby. It didn't help me personally, but my diagnosis is still unknown exactly... I would start with low doses and see. Maybe add more within a few weeks.

As general rules: cut on salt, sugar, coffee and chocolate. Avoid alcohol completely. Since Meniere and other ear problems seems to be virus related (as of today's), you could also ask for antiviral meds type, such as acyclovir (brand name Valtrex). Woman with genital herpes sometimes got it prescribed in a suppressive way when they are pregnant, so I don't think it could harm the baby. I've also been told to cut on all kind of nuts, peanuts, almonds, etc. to help with viruses.

 

[Teri]

I take a double dose of diurectic...has helped me greatly.

 

[davidchampoux]

100mg per day?

 

[glynis]

I take Betahistine and Proclorperazine.
I could not take diuretics for some reason it set my asthma off so my consultant stopped it....lots of love glynis

 

[danni1979]

Pls can anyone woth menieres coxhlear hydrops help,i am desperate!! I have had 2 elisodes where my ears go really full of pressure to such a huge amount,(can open my eust tubes)tinnitus chnages ronw and gets much louder voices or any sound have this robotic undertone(after tone),both times lasted about 6 hours before thwy went away.i saw my ent yest and he poo pooed hydrops as i have no low tone hearing loss,but i have read that it fluctuates(hearing)& that ir doesnt show up on early audiograms.i sufder from oanic disorder and anxiety so this has rorally thrown me and im terrified!! Btw after these episodes my normal t has returned xx

 

[davidchampoux]

@danni1979 , ask for anti anxiety meds like Xanax. Use it for a SHORT period in order to take control. Then I would suggest you try a diuretic med... Good luck.

 

[glynis]

Diuretics help balance out the fluid in your body and even from your ears so some people to benefit from them.
Anxiety medication will help you and Buccastem,Proclorperazine or Betahistine .
A low salt and sugar diet also.
I know if can frighten you at first wondering what's happening and not knowing when it happens but you will adapt over time I promise....lots of love glynis