Meniere's Disease

[SueR]

I'm very well connected in the blindness community, since my son was born with low vision. I've served on two boards and a couple of committees that deal with diability stuff. still, lighting a fire under some people's asses is what it's taking. When my son's new caseworker called the morning of an appt to cancel, I figured "crap happens, no problem", but then the next time, he just didn't show... so my son called. No call back. He called a few days later, no response again. He emailed him... twice. No response. I contacted his boss. She and I were on the Outreach Advisory Committee together for years.

He responded after that. But still, getting him to respond to phone calls and emails takes weeks, after multiple attempts.

...and that's just one. It's the same way with all 4 of the people he's been trying to get responses from over the past few months.

 

[Marlene]

You certainly would know how your system works,my what a run around for you and your son.id be damn angry to the let downs,Why can't all agencies work together case by case they earn a good income to warrant there jobs.Here there called Jobs Worth,can't do there job correctly,shouldn't be employed in that field ,it's humans lives it affects,they go home at end of day. Not a thought given to you and your boy,and the let down.its urgent to you that's what's important,he's your boy at end or the dayAll you want is yes to this or a no to that.How simple can that be.
All paperwork to these jobs,but you want a voice or a face,I understand that,you doing this all on your own Sue ?

 

[SueR]

Aaron (my son) is doing what he can, but he's 19... he'll totally drop the ball if they don't respond to him... he's working full time right now too, and long days at that. spending 3 hrs in my car a day and I've just about had it!

(that ends in just over a week though!!)

I don't want this thread to be about what's going on in my life though... that'll sort out - eventually.

about my appt:

the neurologist (not the one who dx'ed with MD & SCD... that was the neurotologist) prescribed Topomax for my headaches, but they are to be taken daily. And another med for when I do get a headache. I forget what the other one was called.

 

[Marlene]

I think this site is good to do just that,better than bottling it up,that helps not one of us Sue.
Give those Topomax a fair go best I've had for the headaches,I only take when the need. I start my day with full glass of water,on advice of a Cranial Osteopath ( referred by my local hospital) his guidance to me was the brain is surrounded by fluid in the Menengies,when you don't drink enough fluid your brain tightens,your brain wants water,hence the headaches,so I do this water intake all day not over load but enough.So Sue try get in more water see if that helps,when your water in loo is clear you've had adequate.Ive got rhinitis so I get different type of headache hence the Migraleve. ( Topomax ) . Wishing you the very best.X

 

[Teri]

Sue,
Here is a thought. Do you have any non-profits similar to my town (e.g. Pawsitive Partners), that helps to find homes for dogs. My little dog is a rescue dog. There may be some person who would love to have your dog.

Michael,
It am so sorry that you have to suffer this much. My only hope is that your MD gets better. Hang in there...don't give up hope.

 

[SueR]

We got Lukke from a shelter that took him in from a person who didn't want him anymore. He's such a loving dog. He comes with his issues, but we live him anyway!

I haven't decided yet. My symptoms aren't too bad yet, and he's 9 yo. Maybe he'll be gone before my Ménière's gets too bad.

 

[SueR]

I'm feeling so much better now that my headache is gone! had one slight balance issue this afternoon, but otherwise, that's it. my H is back in check too.

I got a few things done today, and I picked up the kitchen. It's amazing how messy people are when mom isn't around to keep on them about their mess! lol

 

[Marlene]

Glad your feeling better,my 2 were the same when lived at home,that's kids for you,now they have to do their own,I'm lady of leisure to some 10 years.Hope next week will be a better one to you.

 

[Teri]

So, Sue....are you thinking the new meds you have are going to be helpful with your headaches? Has the medicine caused any increase in your T?

 

[SueR]

I think it's too early to really tell. My headaches usually only last 3 days, and it was 3 days... I've only had one dose of med, and even that is only 1/4 of the dose I'm ramping up to.

 

[MichaelM]

Anyone else having pain in the ear with Meniere´s sometimes? Kind of similar to inflammation of the middle ear, feeling of fullness and warmth? Pain radiating to cheek? Today is not my best day with MD.

 

[alifalijohn]

Anyone else having pain in the ear with Meniere´s sometimes? Kind of similar to inflammation of the middle ear, feeling of fullness and warmth? Pain radiating to cheek? Today is not my best day with MD.

Hang in there Buddy!, stay strong!

 

[Teri]

Michael, I have been struggling with a full ear that sometimes makes my ear hurt. I took a ClaritonD (not sure if this is available in Finland). It seems to help a little, but I still have slight fullness. I am also trying a Eucalyptus essential oil to rub behind my ear. I heard it works. Time will tell. Also, I am trying to get more sleep. I really struggle when I am tired. My mind, body, and spirit sink.

Michael, I am finding that full ear, ear pain and sore jaw....seems to be common with MD.

 

[MichaelM]

This is still partly a state of denial where i am. I refuse to accept that the inner ear can cause ALL this. i am ok with the attacks and tinnitus, dizziness, that brain fog and all the crackling/crunching noises in my ear being part of MD, though i hate them.

But this inner ear pain and facial numbness makes me wonder whether this could be neck/jaw/teeth related. Numbness is somewhat similar to dental anesthesia when the dentist gives you an injection and your cheeks becomes numb.

I am planning a trip to Estonia. Someone suggested me to go and see a maxillofacial surgeon there. The doctors here dont even consider the possibility of TMJ for being atleast part of my problems.

I know jaw and teeth problem can not make one´s hearing go away and create vertigo attacks but there are moments when desperation really hits me hard and i start looking for help where ever i can.

Seems to me that there are more meds available and more treatments for MD there in US. That is good!

 

[Teri]

I agree with you, Michael. You are wise to get a second opinion for what you are describing. I hope you find some answers. Dont lose hope.

 

[SueR]

I agree too!

 

[MichaelM]

Almost 2 weeks now with really bad symptoms. Went to see a doctor today. I got to leave work early today because of this. I was hoping this feeling was due to inflammation in the ear but no.... the doctor told me everything is looking good. This feeling of pressure in the ear is taking all my energy at the moment. It has never been this bad. Hyperacusis, too. Funny feeling when you hear some guy´s keys making that metallic sounds about 20 meters away from me, really loud.

For some reason T went mental this week: almost every sound is distorted. I tried masking the high pitch sound and loud humming today (first time in years) by listening white, pink, every colour noise from Spotify with in-ear headphones.... no luck. i put the volume as loud as i could and still not enough noise to mask my current tinnitus. isnt this something. the more volume i put the more distorted it became until i started feeling pain in the ear.

For the first time in weeks i have reached the level of fatique where i dont remember exactly what i did a few minutes ago. I have no memories of coming from the doc´s office back home. It takes me about 30 minutes or so... absolutely no memories. I woke up on my sofa late in the evening. Must have crashed there pretty good.

Meniere´s is something else!

but as the doc said: "you are looking great and your eardrum looks beautiful"

 

[SueR]

I think your doctor has a crush on you!

all kidding aside, I hope you feel better soon.

 

[Teri]

Michael...I was having some really good days then BANG! My T spiked....would not calm down...full ear...sore ear. Just the nature if the beast. I am hoping for a better day too.

 

[MichaelM]

@Teri , some say fullness in the ear and exceptionally loud T predicts MD-attacks... not in my case, though.
I am trying to think positive: 5 months now since the last violent attack. That´s a record.
Amazing what MD can do to us!

 

[Marlene]

Never heard that one Michael,so it's like pre warning,I've got the Rocking / Swaying,not been told Menieres ,but must maybe act in same way ,I will be vigilant in days ahead ,see if makes a difference to my T. Thanks for that tip.

 

[Teri]

That is good Michael. Stay positive.

 

[Mikel]

Anyone else having pain in the ear with Meniere´s sometimes? Kind of similar to inflammation of the middle ear, feeling of fullness and warmth? Pain radiating to cheek? Today is not my best day with MD.

I haven't been diagnosed with Meniere but the doctors so far weren't bothered to diagnose anything beside tinnitus. I do experience many things which you describe. Half of my face feels numb, my ear feels full and in pain. After I was outside for 3 hours I become so tired that I fall asleep in the middle of the day.

Several times a day I have to lie down and one time I ended up in the hospital with a vertigo attack which lasted more than 10 hours.

If I would have a broken leg, people would be more supportive.

 

[Marlene]

Having T is one thing but to have Balance issues running along with it. It's soul destroying,same with anxiety.Drs can't see or feel any of it,hence we don't get taken serious,how it messes our lives up big time,and the T to contend with,like that's not bad enough on its own.wish at times I could put every dr in a big bag give them one almighty shake up.Lost count how many say how they come away from ENT empty,same from a Drs
Good point about a broken leg ,when I broke my arm ,people asked how I was in my pink plaster cast
I'm on one of those days folks.

 

[MichaelM]

@Mikel What you describe is pretty much my life. So i feel you, really. In this thread we can change opinions and views of Menieres... my point of view is that of a fellow sufferer´s here in Finland.

some 10 hour violent vertigo attack is something words cannot tell. I have had them "only" a few within last year. During which i think i cried for the first time in 8 years. After a few hours with attack i am "done", totally.

As i have mentioned for some reason one needs to get 2 of them attacks here before "certain MD" can be diagnosed. Your story Mikel is like mine a year ago. Hell of a T, pressure and one severe attack.
Fatigue.... i like the word lethargy.

@Marlene: my words exactly. I dont want to sound rude or arrogant but having T is "only" having T. My tinnitus is so overwhelming i cant mask it anymore with in-ear headphones. This worst season has lasted now 6 days. Balance issues are invisible. The doc made me to test where i had to stand still and raise my legs in turn, eyes closed and eyes open. I almost fell trying this eyes closed. Facial pain, numbness.... i could list symptoms again but i dont want to keep repeating myself too much.

Yes, saddest thing is this is invisible. I think at the end of the days T is the one that destroys me mentally. Other symptoms i can somehow "understand" and they do fluctuate/vary but T can only be loud or really loud.

have you read this? http://www.medicalcriteria.com/criteria/oto_meniere.htm

as i mentioned to the psychiatrist last week: were this disease in my leg or arm, i would have sawed it off myself.

 

[Teri]

Mikel,
Are you doing better with your balance? I know that you felt that was one of your biggest challenges.

 

[Mikel]

I still get that random dizziness. Things didn't change much and I am still in high spirits every morning until the moment I sit down to work.

But I am a stubborn person and I still refuse to accept that things will stay like this. I am trying out many things and had some success with a TENS machine to counter the face numbness.

 

[MichaelM]

gotta google that machine. I will try something traditional today: neck shoulder massage.

 

[Teri]

Good news at the Audiologist and then ENT appointment. My hearing is back up in my left ear, but a bit lower in my right. My T is calmed down and ear fullness has lessened. I am still a bit dizzy and my throat is sore. The sore throat is unrelated, but may be from the diuretics I am taking.

Today I had the husband of my regular ENT due to a scheduling error. But again, he stated my diagnosis is endolymphatic hydrops or cochlear hydrops. He stated it is impossible to test for certain and there is no treatment other than diuretics and diet. He did state that if my hearing drops down, it would be good to consider having the ear specialist put in a shunt to drain the fluid. He stated he did not want the hearing loss to become permanent.

In terms of the dizziness, he stated there are no exercises that would address this because of the cause. I thought I could do some of the exercises on Youtube, but he said they would not work for me.

I guess I am counting my blessings today. The news could have been worse. Onward and upward.

 

[MichaelM]

Good to hear, @Teri. hopefully Mr. Meniere is not coming for a loooong visit in your case.