Meniere's Disease

I was diagnosed with Meneires in 2010. I was having frequent episodes of vertigo prior to this. I always shrugged it off as something else like the flu. But when I had my first major episode that left me unable to walk or even move for weeks, I knew it was something else. As it turns out, my doctors determined I had developed this disease as a result of severe head trauma from a motorcycle accident in 2001. My skull was crushed and I sustained a skull fracture along with blog clots in my right eat. For the years that followed the accident I did notice increased background noise and poor coordination. This was getting worse over time and because I went 9 years without treating this condition... I suffered a major attack. Now I have episodes monthly. Ranging from mild to severe. I rate mild as ringing, sea sick feeling and nausea. This is most common. Moderate is painful ringing, feeling like flu without fever, vomiting, headache and pressure in my eat like water from swimming. This occurs occasionally usally every couple months. Stress and other illness usually coinside. Severe is ... Out of control tumbling nothing is stable. Deafining roar in my ear making it hard to hear anything else. Vomiting, loss of fine muscle control, blurred vision. Wiered headache like brain being stretched diagnolly. Most all of the time I loose control of bladder and bowels. I usually lay helpless on floor until either my wife or children find me. Most I have been incapacitated is 5hrs. I experience this a couple times a year. Usually around season change.
Because of my illness I have developed secondary illness ulcers in esophagus and gerd.

 

@James336

Have you looked into upper cervical chiropractors to treat your Meniere's? Look up Dr. Burcon and read about his research.

 

I have had a neurologist conduct a cervicle study. He found cervical spine disease. It explains my itchy forearms. Nerves in my neck are suppressed and my arms get some loop thing going on that makes me want to rip off my skin at times bracialradial neuronitus Never thought to ask him about it influencing my ear.

 

I did undergo vestibular rehab twice along with massage Therapy. At least I'm out of a wheel chair and using a cane. There is a chiropractor here local. I will check into it thanks.

 

You should definitely look into it. First, read Dr. Burcon's research. The only problem is that you have to find an upper cervical chiropractor who is able and willing to follow his protocol. I went to an upper cervical chiropractor who ended up making my problems worse b/c he did the wrong things. Be careful. If you happen to live in Michigan or nearby you could go to Dr. Burcon himself.

 

Unfortunately I don't and traveling far from home is scary. I don't want to aggravate symptoms or get transported again to another hospital that hasn't seen me before and starts running all kinds of expensive and unnessary tests. 14 trips in one year is enough. E.R. can't really help. More comfortable at home.

 

He's not at a hospital. That's OK you can just read the information and see if there is someone who can help you where you live. Or just talk to the drs you already have. I wouldn't want things to get worse for you.

 

I did attend ENT for for physical therapy but they said my my balance wouldn't change much and there wasn't a lot I could do but get along with it the best I can.
This week I've been told I've as good as lost my job after being off work now for 9 months and not being able to return to my job which involves driving and heights etc, my driving licence went last December and I don't see it coming back very soon either if not at all. So I'm sttting in a job pool for a month to see if there is anything that will suit me better, if nothing then they are looking at early retirement. It's all a bit worrying and sad as it was a job I had been doing now for over 25 years suddenly taken away from me. And prospects of retiring at the age of 51. It's given me some sleepless nights I can tell you.

 

@Pinky329

I don't have anymore severe symptoms as I did with the onset of this condition. The only drugs I take are a double dose of diuretic daily, occasional Benedryl. I have headaches that cycle around but they are not as painful as they once were.

 

Is really loud pulsatile tinnitus part of Meniere's?

 

I have not known pulsitile tinnitus be a part of menieres but if getting other symptoms ENT need to rule it out if Menieres or not.....lots of love glynis

 

I've had pulsatile tinnitus alongside the constant high pitched tone from time to time.

 

When did you start losing your hearing? Did anyone just have tinnitus that turned into Meniere's later?

 

Yes my meniere's began with just tinnitus. The vertigo then happened some six months after. And then the deafness.
I get pulsatile tinnitus.especially after stress.
I'm starting to realise that Hughes syndrome or anti phospholipid syndrome runs in my family and wonder if this causes vascular events in ears which leads to meniere's symptoms?

 

I read your story. I too have had these problems after pregnancy. I also had many miscarriages prior to having my children. Some say that Meniere's may have an Autoimmune component, so your family history may be related. I have been taking Prednisone and it helps a lot, though I have no hearing loss and have not been diagnosed with Meniere's. I also saw that you mentioned having a concussion during your childhood. There is also a theory that head and neck injuries left untreated lead to Meniere's.

 

@AnnaW

How did they know that you had Meniere's when you only had tinnitus?

 

This week I had a hearing test with my audiologist and confirmed my hearing is now 50% loss in both ears.
My tinnitus is sever 24/7 and wear dual purpose hearing aids which im so glad to have.
I know menieres will take away my hearing so there is nothing I can do about it......put try to remain positive.
Love to hear from people with hearing loss and Menieres....lots of love glynis

 

Meniere's makes you feel blessed? That you're gonna be deaf?
I'm probably not getting it (the way you feel), but I should state the obvious here - you seem to be in some serious denial.

 

No I think I get Glynis. She now sees the beauty in everything like no one can see. I feel the same. In my pre T free life, I used to take everything for granted like I did for silence. But now, with an incurable chronic disease, I'm trying my best to enjoy everything in life. This is the only good thing tinnitus did to me.

 

Hi @undecided,
I just 're read my post and altered it as can see how you read it from what I put so thank you for replying to it.

I have to remain positive so try to see the good in everything and blessed for my love ones and still love my life.....lots of love glynis

 

My life has changed a lot since the bad start of menieres 11 months ago now.
I've not worked in all that time lost my job I was doing for 25 years, had my driving licence taken from me and my firm has filed for ill health retirement. My doctor is backing me and agrees that this would help me and my MD. I've over come the fact that at the age of 51 I may be retiring from work for good or for a while and the daunting dread of this and the loss of income. But stepping back out of the fast lane of life and slowing down as you have to with MD you realise these more to see around you that you never noticed before as you were so involved in that mad rat race of life.

 

Hi Darren,
I totally understand how your life changes with Menieres and tinnitus.
I work one hour 15 minutes a day in a school Job I love and I'm a sever asthmatic also.
My doctor supports me 100% and I
Have just tried get ESA.
Even though they know I should get It I got turned down as not paid any stamps with only working part time and can not get anything and because my hubby works full time.
So For Menieres ,sever tinnitus and sever asthma under the sever asthma unit I don't get a penny.
I hope you get everything you can.
Lots of love glynis

 

Menieres giving me a hard time at the moment with blasting ears and throwing up all day long and motion sickness
Not sleeping and lungs playing up too.....
Grrrr !.....keep fighting as I do to bounce back.......
If I'm a little quiet on the forum im just resting up till pick up a bit more.....lots of love glynis

 

What an absolutely awful disease. I that there was more that they could do for you. I'll be praying for you.

 

Thank you @Jkph75 .....lots of love glynis

 

Hi there all fellow Meniere folks. Here i am again. Suffering but surviving. more than 3 years now with the this disease.
tinnitus is getting worse again after a relatively good 12 months. never give up.
gotta say i dont dare to read my old posts in this thread... they are too sad to read. but what is done is done and those were my thoughts back then.

 

Hi @MichaelM,
Sorry to hear your tinnitus is louder for you.
Stay strong .....lots of love glynis

 

Hi all
I have also returned to this forum after a long layoff. My condition is worsening with vertigo attacks coming more frequently and the hearing in my right ear almost useless.

I have stopped taking the diuretic because i don't think it provides any help at all. I still believe that Serc is a good drug for the dizziness though.

Just today i am beginning the John of Ohio supplement regime and i'm actually quite hopeful about it. It seems many people have found relief by using it.

 

Hi MichaelM
Have you had any progress? Are you working now?

 

Hi there @MattL . thanks for asking. I have worked through this whole Meniere´s thing. i think i have had only a week or so sick leave during these years. Progress... yes in a away that i am still able to work and there hasnt been not a single vertigo attack for over 2 years now. for some reason they stopped coming. i have got no idea why. i havent really done any changes. the biggest change is perhaps stress-free lifestyle as far as i can help it.

i take betahistine/betaserc 2 x 24mg/day and diuretics every now and then.
but T is getting worse. hyperacusis worsening... constant ear pain and sense of fullness in the inner ear.
all these fluctuate a bit so i never know what the day will bring.

when were you diagnosed yourself?