Meniere's Disease

[Aaron123]

Sure,

OTO-104 is a shot of steroids into the middle ear. http://www.otonomy.com/pipeline/oto-104/

SP-1005: looks like the is an oral drug http://soundpharma.com/fda-allows-sound-pharmaceuticals-to-begin-menieres-disease-clinical-trial/

Both trials are relatively small, and you would need a confirmed diagnosis.

 

[Jkph75]

I'm losing my mind. No vertigo but the ringing keeps getting louder and louder. It is like there is a car alarm going off constantly. It's sucking my brain in. They say my hearing hasn't changed but I feel like it has. I can't live like this anymore.

 

[glynis]

Hi @Jkph75 ,
I'm on oral steroids for my breathing and had two quiet weeks with my ears and only happens when I'm them.
I now have a 3 week slow taper and my tinnitus will start to come back to its full strength in both ears soon .
Staying my positive self and enjoying some quiet time ......lots of love glynis

 

[Jkph75]

I just don't understand why it is so loud already. It makes sense that it would get louder with progressive attacks and as you lose your hearing. It is debatable if I have even had one attack. I know my hearing is not getting worse b/c now I have had 4 audiograms. I could see it going back to where it was before but this is even louder. I feel bad even complaining about it when I know that some of you are suffering so much more than I am. I am a wimp. I can't live the rest of my life like this.

 

[glynis]

Do you find your hearing fluctuating when your tinnitus is loud?

Audiology might be able suply you with white noise generators ( maskers)
to help you cope better.
Talking therapy is good also and medication can help with the counseling if you struggle get through the day with the unwanted feelings tinnitus can bring.

Have you been diagnosed with Menieres ?....lots of love glynis

 

[amandine]

Audiology might be able suply you with white noise generators ( maskers)
to help you cope better.
Talking therapy is good also and medication can help with the counseling if you struggle get through the day with the unwanted feelings tinnitus can bring.

Are they still supplying these WNG's on the NHS Glynis...do you know please? If so how long does it take to get them from the NHS? thanks

 

[Jkph75]

Well, I thought that my hearing was fluctuating but I had it tested and they said it was the same. The audiologist said that due to being already deaf in one ear the tinnitus could be interfering with my perception of sound. I feel like the tinnitus is getting louder from one day to the next. I don't get periods where it is super loud and then it quiets down. It's pretty much at this level give or take a little. My ear has been hurting. I have noticed that changes in pressure while driving make it worse (pain not the T). It's worse on nice days, when exercising, and sometimes after eating. When I get the ear pain, I also sometimes get a headache that starts up the back of my neck and goes over my head into my eye. I also feel dehydrated a lot despite drinking tons of water. I haven't been diagnosed yet. They said that they can't diagnose me with it until I lose hearing or have vertigo episodes that fit MD. A diagnosis doesn't really mean anything considering it's not really a disease in the first place and really just a collection of symptoms.

 

[glynis]

@amandine ,
Yes you can get them on the NHS and its audiology you need to see for them via ENT referral...can take a few weeks to get seen unless you have a Hearing and Balance one stop program in your community hospitals .....lots of love glynis

 

[amandine]

@amandine ,
Yes you can get them on the NHS and its audiology you need to see for them via ENT referral...can take a few weeks to get seen unless you have a Hearing and Balance one stop program in your community hospitals .....lots of love glynis

have no problems with hearing or balance so guess that wont help me then?
love?

 

[Jkph75]

What is this head vibrating feeling that comes with heart palpitations and nausea?

 

[glynis]

Do you have the Hearing and Balance One stop program in your community hospitals ?
They run tinnitus clinics in them and all treatment is in one place and have a action plan to your needs and treatment.
They work on a six week turnaround for a tinnitus treatment appointment from your referral ....
I know Stoke on Trent have about 8 centres up and running.
These bypass ENT so get seen quite quickly.

Other parts of the country are following with the One stop programs....lots of love glynis

 

[Mand b]

Is there anything to do or take that actually works to get relief from these symptoms? Having a tough time with nausea and dizzy every day and loud tinnitus I struggle to hear over. Betahistine does nothing for me. Prochlorperazine does stop the nausea for a couple of hours before the next dose. I just can't believe that someone has to suffer this much on a daily basis and not ever feel good. I am still not convinced this is Menieres because the symptoms are not all linked together. As i have said before for 2 years tinnitus was non existant and the only thing I had was dizziness on and off but had a lot of other symptoms like spaced out and anxiety etc... so now I think if my tinnitus stops again for say a couple of years and only have dizziness then what does that mean? I thought you needed a lot of symptoms going on at the same time to have Menieres. Also I would of thought after 5 years of this all starting that it would of progressed more by now (touch wood it doesn't). And one last question how do you all find planning a holiday with this? I really want to participate in holidays for my partner and daughter but I find myself thinking how can I plan when I do not know if I will feel well enough to even go. Do any of you fly also? If so is there any tips to stop feeling dizzy/nauseous on the plane or even through out the hol. Thanks again for all the advice this is the only place I can come to have a moan :-( x

 

[glynis]

I would have a chat to your doctor and even a ENT referral to get you on the best possible medication.
Betahistine on its own does nothing for me but taking the two lots of medication the Proclorperazine and Serc help me a great deal.
I take 3x16 my Serc and up to 2-6 tablets a day if need the others .

Anxiety can cause similar problems and I know you only have one good ear working properly .
Balance physio can help and need to keep it going as helps your eyes take over from your middle and inner ears ...
I would push for more medical support or even change doctors if they don't help you .
Keep posting for support ....lots of love glynis xxx

 

[glynis]

A gentle bump up for newcomers !!!

 

[JAJ]

Glynis, Thanks so much for pointing me in the direction of this thread. I've been muddling my way through Meniere's since July 2015 and have not found any active support groups in my area. As I read through the threads on both tinnitus and Meniere's, I can relate to so many of the posts! The sense of lack of control, can be so frightening. The lack of hard data on the cause/underlying pathology, is mystifying! How varied the treatment approaches can be, from physician to physician, can be bewildering. And the need to continually research and find your own road back to health or some semblance of normalcy, can be absolutely exhausting!! And finally, the isolation: I think that's the worst of it.

I would write more now, but I have to go to my appoinment: I'm receiving dexamethasone injections into my inner ear every 4 weeks. The injections really have helped to decrease the frequency and intensity of my vertigo. I've only had 2 episodes in the past month. That's a huge record for me!! And they only lasted a little over an hour and a half ("hangover" not included), which was also amazing. I find that meclazine 25 mg, clonazepam 1mg, and glycopyrrolate 1 mg, immediately upon onset of symptoms, works best for me.

Now that I'm getting some relief from the vertigo, I have some space to address the tinnitus and hearing loss. (And on and on we go!)

More later....
J

 

[JAJ]

I had my monthly intratympanic dexamethazone injection for Meniere's related vertigo, yesterday. I can honestly say it's helping....It's been very slow and gradual...but it's helping. I was given the option of intratympanic Gentamycin, but I woudn't even consider it, unless the steroids turn out to be a total failure. I have met people at the clinic however, who rely upon Gentamycin for vertigo relief, and have learned to accept the side effects as a worthy trade off.

My ENT encouraged me to go with the hearing aids, and said that it will ultimately help with the tinnitus. Also advised to keep the anti-tinnitus program.

I'm learning so much from everyone on this site. I honestly thought I was completely alone with my Meniere's and all of its complications, until finding this site! I kept asking my doctor why there weren't "Walks for Meniere's", "Runs for Meniere's"....ribbons for Meniere's! I imagined that there must be legions of people just suffering in silence; on their couches....afraid to "get that feeling" again. And you know what he told me? There really isn't much attention paid to Meniere's patients because they" look so normal"! Very few in the medical community understand how debilitating it can be. Sigh. I'm so glad I found this group. Thank you so very much.

Best of luck to all.....
J

 

[glynis]

@JAJ,
I'm so happy for you that the injections are helping you with vertigo .
I have had a few bad days but I'm on the mend with extra medication.
My tinnitus is so loud and get headaches and brain fog and hard focus on things and get so tired.
Thank goodness my duel purpose hearing aids help me.....lots of love glynis

 

[Jkph75]

My tinnitus seems to be gradually getting louder. Every day it's a tiny bit louder than the day before. Is this what happened with you? I thought it was supposed to cycle but this is just getting gradually worse.

 

[glynis]

If you have Menieres the symptoms can come and go and not all have to be presant.
Tinnitus can fluctuate and change sound and strength till it settles down.
Tinnitus can also be reactive so reacts to sounds.
With attacks you normally feel sick and lightheaded ,dizzy or have vertigo......lots of love glynis

 

[Jkph75]

I have been feeling nauseated and dizzy but don't have vertigo. That is the only thing that comes and goes and is always provoked by movement or driving which my ENT can't explain looking at my balance testing. Tinnitus just keeps getting louder little by little. I am scared that it will just keep getting louder until it is almost all that I hear. So, that isn't what happened to you?

 

[Jkph75]

Has anyone been to Dr. Burcon?

 

[JAJ]

@glynis

Yesterday, I was about to answer this note...I got up from the table to grab some water, and that was it: The floor tilted, and it all started going around. Thank God I had my emergency meds nearby...I just grabbed them, chewed them up quick, and crawled on my hands and knees to the couch! I think maybe I've jinxed myself by telling you about my progress!! I know my tinnitus was much worse than usual...It was so loud, I may as not have bothered with the hearing aid. It drowned out everything. Maybe that's my new "clue" that something is coming. It used to be ear pressure. Sigh. The unpredictability is maddening.

I'm so sorry that you've had a bad few days. It can be so debilitating. I completely understand the headaches, the brain fog and the fatigue. I have them all, too. The fatigue has changed my life. I'm glad the extra meds and dual purpose hearing aids are helping you. (I'm assuming that you mean hearing aids with anti-tinnitus programs? I'm having a hard time trying to get the right program. Is the sound coming from your hearing aid, as loud as your tinnitus? Can you adjust it?). When my tinnitus is bad, my hearing aid doesn't seem to help me at all when it comes to voices and TV. I can hear "things"...beeps, rings, the doorbell, someone knocking Etc...But voice is something entirely different.

Meniere's gets you on so many levels. I hope you feel lots better.
J-

 

[Gin]

Would anyone who has been diagnosed with Meniere's Disease be interested in posting in this thread?

I have recently been diagnosed with Endolymphatic Hydrops which my ENT tells me is a form of Meniere's Disease.

With Meniere's tinnitus is just one of the symptoms. Tinnitus typically occurs in one ear (although I have had T travel to my head and over to the other ear). I hear a variety of sounds with spikes that occur off and on throughout the day. I also have dizziness off an on. Thank the Lord, I don't have severe vertigo as some folks with MD do.

Please post if you are trying to figure out strategies to combat the tinnitus that comes along with MD.

Sounds like you have exactly what I have. I don't have the severe dizziness either. Thank the Lord. I've been struggling with this since July. My ENT recently suggested steroid shot to the eardrum, but after reading horror stories on the internet, I just can't do it. He prescribed me valium to sleep, haven't taken it yet though. However, I really don't want to be on any anti-depressants. I was on Effexor for years for panic attacks, and it took forever to get off of it. I did find that Dramamine at night, helps with the dizziness and makes me pretty sleepy. Headaches have been my biggest problem, since I can't take aspirin etc. I started taking LipoFlavnoids yesterday, and wow after an hour I could tell a difference. Hoping that this affect keeps up. I've made a decision to eat SUPER clean and cut out fats, salt, all caffine, and limit my alcohol. It's hard, hope these suggestions help

 

[Jkph75]

@Gin

What do you have?

I took a tiny amount of Valium to sleep a couple of times and it made me way more anxious the next day. I tried zzzquil the past couple of nights and that worked better. I don't have headaches but I get this weird sensation like someone is squeezing my brain or the bridge of my nose. Are you dizzy only when moving around or driving? My tinnitus doesn't ever stop. It's just gets louder and louder. Did you lose hearing? If so, how long after your T started did that happen?

 

[Pinky329]

Hello! I am new to tinnitus talk and so very interested in this thread! In particular I feel like I relate most to @Teri. I read on another thread how your symptoms began and mine sound very similar.
Last year January (2015) I started feeling fluid in my right ear, about two weeks into that my ear clogged up and I could hear a pulse sensation in sync with my heartbeat. That went on constantly (did not come and go in episodes) until September...when in addition to those symptoms I would have slight ear ringing, that would last a few hours, and once it subsided it left my ear feeling very odd and my hearing seemed slightly muffled... Usually a good nights sleep would nip it in the bud. The ringing has progressed and is now more constant, and during really bad episodes (which last a few hours at a time) it is loud like a screeching tea kettle. During these episodes my hearing and the ringing itself seem very sound sensitive. Following the loud screeching episodes my hearing is sensitive and slightly muffled. Early April I awoke one morning and went to get out of bed and couldn't stand because of the feeling of falling to the right every time I got up (vertigo?) it's as if my head was weighted causing me to feel dizzy. I went to the ER and was given iv Valium which helped almost immediately. I have been to 3 ents (all of which have had different opinions) and am on my 4th doctor.... Who did finally order MRI imaging of the brain and ear with and without contrast to rule out larger issues, which came back normal. No doctor has yet mentioned menieres to me, but it sure does sound similar! Essentially I know that nobody here can give me answers, as everyone is different....but it was a relief to see people with similar symptoms as myself so I wanted to jump on and join in!

 

[glynis]

@JAJ
My hearing aids just take the edge off my tinnitus and my masker setting is programmed loud but my tinnitus is louder.
Sorry to hear you had a bad spell with your Menieres.
One thing I have noticed my left eye twitches alot along with my loud tinnitus before I get a attack like a warning for me.....lots of love glynis

 

[Jkph75]

It's interesting that symptoms so dissimilar could be given the same name. It seems pretty obvious that "Meniere's" isn't one disease. I think if drs focused on figuring out and naming all the different diseases that could be causing these "Meniere's" symptoms we would all be a lot closer to figuring out what is actually going on with us.

 

[glynis]

Mine started with a virus and told it was Labyrinthitus and the symptoms got worse and attacks constantly and then tinnitus started with violent vertigo attacks and could not keep anything down and walking was hard with bouncy vision and wanting be sick just getting up from a chair or walking and being sick out doors in public places in the street many a time and a few falls.
Soon as I wake up in bed I have to sit on the bed and time to come round fron room spins being dizzy and have to try make it to the bathroom.
I think it's enough info for how my life can be with Menieres......lots of love glynis

 

[Jkph75]

@glynis

I feel awful for you. Do you feel like that every day? Have you tried Valtrex? Seeing as yours started with a virus it might be helpful for you. You have to take 3 grams a day at first then taper down. They found it is most effective with people who have had symptoms for less than 6 yrs.

 

[glynis]

@Jkph75,
I'm just on Betahistine 16mg x3 a day and 6 proclorperazine .
Wake up every day dizzy in bed and have to sit up in bed for a while before standing up .
Both ears ring so loud and got poor concentration and get brain fog a lot and memory not so good.
Get sick and fuzzy head most days and attacks of vertigo with attacks.
It's tough going and breathing problems and talking problems....but you have to stay positive and live your life the best you can....lots of love glynis..