Tag: Meniere’s Disease

Much Better – Doctor’s Report – and Sandy update.

On By WendyIn Chronic Illness, Life, Meniere's Disease12 Comments

Thank you to everyone who sent me so many good wishes and encouragement!!

I saw Dr. Kaylie yesterday.  He was not discouraged by my attack, and feels confident that I will continue to feel well.

However, he said, I do still have Meniere’s Disease, so I may have an attack now and then.  If we can keep my attacks down to one small one every 3-4 months, then that’s doing great.  He’ll be concerned if I start having attacks more regularly, and if I start having more severe headaches again.  If that happens then I’ll need to get in to see Dr. Gray again, and have another Myelogram.  Since we don’t know what caused my leaks in the first place, there’s always a chance I could get more.

It was kind of funny, when he said that I still have Meniere’s and I may have occasional attacks, I told him, “No, I’m cured!”  Of course, I was just joking.  We all know I’ve never looked at this as a cure, but perhaps, down deep, I was kind of hoping.

Since I didn’t have a picture that would go with this post, I decided to share some photos of my Sandy Dog!

Sound Asleep
Waking up. (Thanks to that darn flash.)
A bit confused.
What a cute dog.
Look at this face. How could you feel bad with that face looking at you?

Update on Sandy.  For those who don’t know the story of my darling dog:  Sandy is 18 years old.  She was found in a dumpster when she was about 1 year  old.  I adopted her shortly after she was found.  She’s been my constant companion for 17 years.  In March of 2009 we found out Sandy had bladder cancer.  She had the tumors removed, but in July of 2010 an ultrasound showed that the cancer was back.  We were told then that Sandy didn’t have enough bladder left to operate again.  The doctor told us that this cancer is very aggressive and he guessed she would last about 6 months to a year.  We do have her on a drug that is supposed to slow the growth of the cancer, and so far so good.  She still acts as if nothing is wrong.

I noticed that Sandy acted like she couldn’t see us as well as she usually does.  She was barking at people she knew until they were close enough for her to smell them, or really see them.  I noticed that her eyes were looking a little cloudy.  A couple of weeks ago we took her to the vet, and she does have cataracts.   The doctor said she can probably see light and dark, big shapes….that kind of thing.  I think she can still notice movement because she follows my hand motions.  (She has been hard of hearing for a long time now.)

Even with all of her “issues”, Sandy is a happy dog.  She runs around the house, and asks to go for a walk every day.  She still runs up and down the stairs, jumps on the couch and on our bed.  Of course, her favorite pastime is chasing the cat!

I really don’t understand just how good Sandy is doing until I see other dogs close to her age.  Our vet said that they are always talking about Sandy, she is a wonder dog!!  Still so energetic and bouncy at her age!  I hope I age so well!

I hoped I’d never say this again…

On By WendyIn Meniere's Disease5 Comments

my hearing in my left ear has been down dramatically for 4-5 days.  Today, I spent the majority of the day too dizzy to do anything.

Showing how I felt. Artwork by Wendy.

No, I didn’t have full-fledged vertigo, but I came close.  I slept late today, I’ve been doing that a lot lately.  (I don’t feel like I’ve been sleeping very well since my shoulder has been bothering me so much.)  I wake up and just don’t feel that I have the energy to get out of bed, I either just fall back asleep, or get up and soon end up back in bed to sleep a little longer.  Today I got up around 10:30am, ate some breakfast, and started feeling worse and worse.  I staggered back to bed, took some medication, and hoped it would go away.

For the first time since I had the patches in January, I closed my eyes and could see the shadows behind my eyelids slowly rotating.  I was so very tired, and just wanted to sleep, but I couldn’t, because every time I closed my eyes it felt like things were moving.

Finally, around 4pm, I started to feel mostly normal again.

I feel so….oh, I don’t even know what my feelings are right now.  Scared and worried, yet confident that the symptoms can be controlled again.  Perhaps, I have another leak.  Perhaps, they need to patch the last leak.  Perhaps, a patch didn’t hold.  And in the back of my mind I hear, “Yeah, and perhaps you had a 3.5 month reprieve and your are just S.O.L. now.”  As I told a friend of mine today, I feel I need to hope for the best, but expect the worst.  If things turn out well, then that’s a happy time, if not, then I won’t be devastated.

I already feel like this darn disease is controlling my life again.  We were supposed to have a CPR class tonight, and we had to cancel, because of me.  There’s so much I’d like to get done on the house, but that will have to wait.  However, Stuart has done a lot.  We still have a home visit on Thursday, but who knows when we might be able to take a CPR class again.  I’m just so afraid, everything is going to fall apart.  But I must say, if things are going to fall apart, I’d rather it happen now.  I’d hate to have a child and decide we can’t take care of him or her because I’m too sick.  These children have undergone enough losses, they don’t need to get in a home and then lose it too.

I’m going to see Dr. Kaylie, my Oto., tomorrow at 4pm.  We have a call in to Dr. Gray.  She may want to do another lumbar puncture.  Who knows.

I know, I’m jumping the gun.  Dr. Kaylie may look in my left ear and tell me that the infection hasn’t cleared up and that’s what is causing my problems.

All I know is that the last few days have felt just like it does when I’m in acute mode with the Meniere’s.  Things aren’t happy, and I could have an attack at any moment.   There is no doubt in my mind that if I hadn’t taken the Valium and Phenergan when I did, that I would have ended up with a full-blown vertigo attack.

I’ll let you know what the doctor says.

Living in Limbo, life with an Invisible illness. A Guest Post

On By WendyIn Chronic Illness, Guest Post, Medical Tests, Meniere's Disease17 Comments

I’d like to thank Maureen from Sunshine and Chaos for writing a very emotional post for us.  Maureen is on a mission to embrace the new her, a person with an unnamed invisible illness.  Her blog is very up beat, and inspirational.  I suggest everyone check it out.

Maureen told me that she thought this would be an easy post to write, but found it very hard.  She said everything about her condition is just so general.  “When you not on firm footing you’re just out there flailing.”  I think she did a great job!

I have a problem.

My problem is that I’m in limbo like my friend in the picture, Wile E. Coyote.

I have something wrong with one of my ears. I say something because the ENT doctor could only say “it” happens to a lot more people than what is realized and to try to find “a quality of life”.

My “it” is balance issues that started in 2000 and my having a chronic illness was finally confirmed by the ENT in 2005. What I have is basically an invisible chronic illness with no name.  A “we know how you’re being affected, just not what is causing it“.  I feel like Wile does in that picture. On firm ground one minute, in limbo waiting for gravity to take effect the next. I was healthy one minute, living in limbo the next without a specific diagnosis. No specific diagnosis, no possible cure,  no plan of action that can help me get back on my feet and be a contributing member of society again.

The doctors would always ask me if I would get dizzy and I would say no.  A big part of my problem over the years is that I rarely got dizzy. If I did, it didn’t last long and I would attribute it to something else such as getting up too quickly or having a head cold.  I did have a few dizzy spells a number of years ago due to water in the ear and I don’t get anything like that.  I NEVER FORGOT that feeling of the world spinning. And, I would add,  my mother had Meniere’s and I saw how she reacted and dealt with it.

What it really felt like at the beginning was “the flu that wouldn’t go away”. Sounds like a bad horror flick, doesn’t it? On my bad days, that’s what it still feels like.  I had high blood pressure for the first time in my life, light-headed, slept a lot, no energy, ached a bit, lost my appetite and had a bobbing feeling in my head. Different conditions and diseases were ruled out. The flu eventually went away and also ruled out were chronic fatigue syndrome, mononucleosis, peri-menopause, thyroid, my heart (in the beginning it would beat irregularly and at times fast), brain tumour (I would get a tingling sensation up the back right side of my head that would turn into a headache) and whatever else all those tubes of blood and other tests might confirm.

The best word to describe how I now feel is disequilibrium. Here’s a definition from the U.S. National Library of Medicine:

Disequilibrium is a sensation of impending fall or of the need to obtain external assistance for proper locomotion. It is sometimes described as a feeling of improper tilt of the floor, or as a sense of floating. This sensation can originate in the inner ear or other motion sensors, or in the central nervous system.

Now that I know that the problem starts with my ear, I believe keeping control of my head movements has reduced most of the symptoms.  But they have only been exchanged with other symptoms and side effects.  What I get is a woozy feeling, like I’m in a boat and bobbing up and down on small waves.  I can be sitting still and it will feel like someone is shoving me to the right. I can stagger like I’m a bit drunk but be stone-cold sober.  Changes in the weather affects me so much more.  Before, it meant random sinus headaches.  Now I start feeling off-kilter and want to stay in bed.  Sometimes going for a walk will help me feel better, sometimes a walk only makes things worse.  I will pace the hallways of my house just so I can have a “walk” and avoid being far from my bed in case I have to quickly lie down.  I have a stationary bike that I use so that I can stay seated and not move my head.  I take my cell phone with me on even the shortest of walks, just in case I have to call a cab to get home.  On days when I want to, or have to do something, I’ll do it and have to lie down afterward so everything in my head can calm down.  And, the rare times when I’m close to feeling “normal”, I sometimes overdo it and then I can easily pay for it for a week afterwards by needing to stay in bed.

After all these years, I the person, looking back objectively, can appreciate that in the beginning the doctors couldn’t tell what was going on with me. Everyone, including me, thought it was a really bad case of the flu.  But, that idea lasted only so long. I understand that, even as the months progressed,  my symptoms were still, general in nature.

However, I the patient, wish the questioning went beyond asking “light-headed or dizzy” and included asking about “balance”.  I wish I didn’t live in a restricted-budget medical climate where a doctor is not able to order tests based on gut instincts and experience or not have someone else question some of the tests. That actually happened during one of my tests – a doctor questioned why my doctor ordered a test.  I have never had a doctor do unnecessary tests.

I also wish that the family history of Meniere’s was taken more seriously. My mother had it and I would ask if I had it or if there was a genetic connection.  I was always told no but it seems more than a coincidence that a close relative suffered from ear problems.

What I really wish is that I had a disease with a name.  I could have a fighting chance at treatments or a cure.  It would bring legitimacy to what I’ve been dealing with all these years.  People deal with illnesses in different ways.  I was only in my mid 30s when I first became sick.  You’re supposed to bounce back, not stay sick.  Some people understood.  They were usually the older ones and had friends or family dealing with various illnesses.  The younger they were, the more chances that I wasn’t believed.

Not being able to be as physically active means that my overall health and stamina has deteriorated.  Heart disease and diabetes runs in the family.  How has the loss of activity sped up the possible development of these diseases for me?  How many years have been taken off my life?  How will my final years be lived out?  We never know how things will work out in the end, but we don’t want to rush things along.

As the saying goes, I truly am sick and tired of being sick and tired.  And being in limbo means not much chance of going back to a normal life.

There are so many things that Maureen said that rings true, isn’t there?  I wrote a post not too long ago about being happy about a diagnosis.  Not that I had the disease, but that it now had a name.  It is so very hard to have a disease that doesn’t have a name.  As Maureen said, it would bring legitimacy to her suffering.   

Thank you so much, Maureen, for talking about such a difficult subject, and speaking so honestly.

Meniere’s Treatments, Guest Post – Lin

On By WendyIn Guest Post, Meniere's Disease7 Comments
Lin, known in the blogosphere as LinLori, has a very interesting blog.  You can find her at linlori.com.  Lin is a mother of 2 toddlers, and wife to “MarvMan” who is currently active duty Navy.  This is her story of being diagnosed with Meniere’s and the treatments she has tried.
When Nothing WorksAs I write this post, my mind is swirling with all sorts of things. My kids are getting ready for me to start homeschooling them, we’re getting ready for a cross-country move, I’m trying to clean out my house of unnecessary stuff, we have to figure out how to get two vehicles from one end of the country to another with only one of us being fully able to drive 10-12 hours a day – and of course, that isn’t me.So I’m hoping that what I write makes sense, will help some, or will at least be something other Meniere’s friends can commiserate with. We have nothing if not each other.

My first attacks actually started while I was active duty Navy. I’d been crouched under a dark aircraft for a good couple hours working on an engine and when I came out into the bright hangar bay, I got dizzy. It was easily brushed off as, “A head rush. Clearly I was under there too long.” But they continued.

And of course, before seeking a doctor’s advice, I got pregnant. And so any complaints of dizziness were brushed off as, “Well, you’ve got double the amount of fluid in your body right now; of course you’re going to be dizzy.” So it continued and I thought it was just a bothersome thing I’d have to deal with because, clearly, my body was more sensitive to how much fluid was in it than most people.

It wasn’t until after my separation from the Navy (honorable, just early for parenting conflict reasons), and after our second child that my husband said, “You know, I think you should go have this checked out.” So I did.

The doctor said it was BPPV – benign paroxysmal positional vertigo, as we all know – and there wasn’t anything he could really do about it, except give me some exercises to do and tell me to come back if it got worse. Well. Thanks for that, doc.

And then we moved from Washington to Nevada. For a time, I ignored the “spells,” as I called them. What else was I to do? But,  of course – they got worse.

So it was back to the doctor with me. This time a new doctor, on a new base. He repeated many of the same in-office tests and checked my ears, cleaned them out, and gave me a referral to an ENT.

The ENT agreed with the BPPV diagnosis initially, and sent me for balance therapy. It helped a bit, and I enjoyed the sessions and the physical therapist I was working with.

Then I had a seizure.

Seizures are, of course, not usually related to Meniere’s, but migraines are related to Meniere’s and – to all our best knowledge after over a year and a half of research and trial & error – this seizure was migraine related.

Thus began the experimentation into how much effect, if any, food had on my Meniere’s. This is what we learned:

MSG has an insane effect on Meniere’s for me. If a food has MSG in it, within fifteen to thirty minutes of consuming the food, my heart rate will be doubled, I will be short of breath, experiencing hot/cold flashes, and – but of course – vertigo attacks that leave me bedridden.

The label “MSG” also happens to include High Fructose Corn Syrup. So you can imagine the rage I have at those, “It’s just like sugar!” commercials. No, it is not.

Of course, salt has an effect, from previous knowledge of how sensitive I am to fluid retention. So I’ve greatly decreased my salt intake.

In addition, I, the big coffee drinker, have had to seriously cut back on the caffeine intake. I usually only have a cup in the morning, and perhaps one in the afternoon or one in the evening. The interesting thing here is that I don’t feel as awful if I stick to grinding the beans myself and brewing it in a press-pot. I have yet to figure out the connection there.

What other treatments have we tried? Well.

Diuretic – The diuretic does seem to help, especially around my monthly cycle.

Steroids
My first ENT had me on so many steroids…

Oral Prednisone – This. One. Sucked. I felt nothing but the side effects. I was moody, always short-tempered, tired, loopy, and I gained seven pounds.

Ciprodex ear drops – This was after the ENT installed a tube in my ear drum in order to better administer the ear drops. I’ll cover the tube in a moment. The Ciprodex really didn’t seem to help all that much. My inner ear was incredibly sensitive to the temperature the drops were at, and it seemed to actually spark a vertigo episode rather than help any.

Steroid injections – I don’t remember the name of the steroids they injected through the tube, but these? Did nothing.

So when I got sick of my first ENT running up the insurance costs for steroid treatments, I found another ENT. This one now has me on

Triamterene – water pill, of course
Elavil – Anti-depressant, with surprisingly unexpected helpful effects for those with Meniere’s
Meclizine – Emergency anti-nausea anti-vertigo med for when I have an attack.

Unfortunately, as with the past few days, we’ve discovered that the Elavil – a second round after a 1 month break – is no longer working.

And, thus? The search continues. I’m only 26 – there’s time, right? 😉

Thankful that I know…

On By WendyIn Chronic Illness, Dietary Fructose Intolerance, Disability, Fructose Malabsorption, Meniere's Disease11 Comments

When you are suffering for a long time and don’t know what’s wrong, when doctors look at you like it’s all in your head (and some even tell you that), when it takes years and still no one knows…it’s so nice to be diagnosed.

art by Aquatic Fishy at Deviant Art.com

Some of my illnesses were diagnosed fairly quickly, and still some things are still pretty vague. (chronic hip and pelvic pain – ummm, why?)

I know it may sound weird but I was so happy when I found out that I had a wheat allergy, gluten intolerance, hypothyroidism, Meniere’s, hypoglycemia, a B12 deficiency, a Vitamin D deficiency, and finally and most recently fructose intolerance.

Each of these diagnosis took a long time to discover.  Especially the wheat allergy (gluten intolerance) and Meniere’s.

For years I was sick.  I saw a note in my medical records one time from a doctor that said, “This patient comes in with a laundry list of complaints….”  I was shuffled from doctor to doctor.  I was told I had Fibromyalgia, chronic fatigue, and IBS.  I had to learn to live with it, and I did for years.  I even started a local Fibromyalgia support group.  (I’m so very thankful for one very special friend that came from that group.  You’re great Lisa!!)  But I never stopped looking for an answer, or something that could help.

Finally, I was reading about food allergies and asked my doctor to test me.  Come to find out I have a wheat allergy.  Thank Goodness, I found out.  I stopped eating wheat immediately, and started feeling so much better within weeks.  Then I read about how many people can not tolerate gluten, and the symptoms for celiac disease.  A lot of these symptoms fit me, so I decided to stop eating gluten, and it was like a light switch came on in my life.  I no longer felt like I had the flu all the time, or that I needed to sleep most of the time.  I had a new lease on life.  I’m so grateful.

I had vertigo attacks on and off for years, with a full feeling in my ear and a constant ringing, but no one could tell me why.  One night after having vertigo and throwing up over 8 hours my fiance (now my husband) took me to the emergency room.  The doctor there told me that he thought I may have something wrong with my ears.  Perhaps the crystals that some people get, or something else that causes vertigo…he even mentioned the possibility of Meniere’s.  I loved this doctor.  I was so grateful that he believed that there was something wrong with me, and I wasn’t just getting food poisoning over and over.  (yes, that’s what I had been told.)  So I went to an ENT, and he said I have Meniere’s Disease.  I was so thankful to know something.  Am I happy that I have Meniere’s? NO.  But I am just so thankful that I have a diagnosis.

I’m so happy to be involved in the research going on at Duke to find out if an imbalance of Cerebral Spinal Fluid (CSF) may be one of the causes for vestibular vertigo in some Meniere’s and Ramsey Hunt Syndrome patients.  I was so very happy to find out that I had CSF leaks and they could patch them. My life is a new again.  (no vertigo for over 2 months now!)

Most recently, after 7 months of chronic, almost daily, diarrhea; and a battery of tests, I am so thankful to find out that I have Dietary Fructose Intolerance (or Fructose Malabsorption).  Yes, it makes eating much more difficult, but I’m already feeling better after just one week.  What a difference knowing can make.

Am I thrilled to have so many chronic illnesses?  Of course not.  But I’m so thankful that I know.

I’m also thankful for all that I’ve learned from having chronic illnesses.  I’ve grown so much as a person.  But that story is for another day.

Thank you all for supporting me through all of time trials.  Isn’t it great to know?

Meniere’s Treatments Guest Post – Susanna

On By WendyIn Guest Post, Medical Tests, Meniere's Disease7 Comments
Susanna, on a trip to see her son in England May, 2010.

Today my guest is Susanna, a lovely woman from Linköping in the southern part of Sweden.  She is married and has three “almost grown up kids”.  She was working in the school system, but last year she went on permanent sick leave from work.

Susanna has had Menières for about ten years, bilateral for three years.

She stresses that “with the support from my family and relatives life is pretty good today!”

Coping with my Menières by Susanna Ahlström

I had my first bad vertigo attack the summer of 2002.  Before that I had tinnitus, fullness in my ear, and a few minor dizzy attacks.  But this time I was really ill and the ENT doctor told me this was Menières.  I was sent home with a diuretic and some pills for seasickness.  And of course I was told to keep a low sodium diet.  I felt better after a few months and started working again.  But I never got rid of the tinnitus or the imbalance and the anxiety I felt was limiting my whole life.  My boss saw how I felt and helped me to see a therapist.  I meant to see her about 10 times – we had our sessions for two years.

After about 5 years I felt so much better and I started full time at work.  My tinnitus didn’t bother meat all, I felt almost normal then I got a new chief at work.  Let’s say this became a hard time at workand my Menière started bothering me again, now with several attacks a week.  A period of trying different treatments started:

Betaserc, the Serc
I´ve taken the pills for many years now, increasing the dosage several times from 8 mg per day till today when I take 64 mg.  This medication is meant to increase the blood flowing in the small vesselsin the inner ear.  I’m not sure if it really helps, but I don’t dare to stop taking it.

Diuretic
I´ve been taking this for many years now on a low dosage.  I can take an extra pill the days before myperiod begins when the body feels a bit swollen.  And I keep on taking this medication, maybe it helps a bit.

SPC-flakes
I´ve been eating these oat flakes with my yoghurt every morning for many years.  You take 1 gram of the flakes for every kilo you weigh, every day.  The oatflakes have been processed in a special way, malted, and contains something called Anti Secretion Factor which helps the body’s fluid and secretion level to be stable.  It´s rather expensive but my doctor prescribes it for me.  My stomach has never been better!!

Tube
I had a tube put in through my eardrum in one ear while I was waiting for the Meniett.  I was able to borrow the Meniett from the hospital to see if this was something for me.  I felt less pressure in my ear while I had the tube, but this was about it.

Meniett
I tried the Meniette for one ear for some months.  I had so much hope before I started but this was nothing for me.

Carbamide/Urea
White crystals in a small plastic bag make me think about other things than medication but this is something you take with some water as soon as possible when a vertigo attack is coming.  It helps the fluid level in your ear (and of course in the entire body) to become lower.  It tastes really bad and almost made me throw up and it didn´t prevent the attack from coming.

Cortisone
When I got Menières in the other ear I took cortisone (prednisolone) on a very high dosage for a few days.  I will never take it again if I don’t have to. I got hyperactive, had a high pulse/heart beat, got a gastric catarrh so bad I fainted at work and ended up at the hospital.  And this treatment didn’t help me at all.

Cortisone injections
A rather new treatment here in Sweden is cortisone injections through the eardrum and into the middle ear.  If the tissue in the middle and inner ear is swollen the cortisone can help.  The injections are given 5 days in a row and you have to lie still on your side for about an hour.  Before the injection I had anesthesia ointment on the eardrum to make it numb.  This treatment was just a little painful, a quick pain while the doctor injected the cortisone.  I got it for both my ears with a few weeks passing between, and then we tried it once again on one ear.  I cannot say it helped much though.

Gentamicin
This is a treatment I didn’t really want to try so when my doctor recommended it I wanted to wait and think about it.  Then I became bilateral and gentamycin injection is no longer an option.  Neither is surgery.  I know they do the saccotomi shunt surgery sometimes but I’m told that many Patients who had the surgery are only helped for a short while.  When I had my worst period of illness I believe the doctors could have done what surgery or treatment they wanted if I only got rid of the vertigo!

This seems to be my story.  I’ve tried so many treatments without any success at all.  For every new treatment I’ve tried my hope has diminished.  But there are a few things I’ve tried which have made iteasier to cope with this illness:

Acupuncture
This has helped me to relax and even to take away the constant dizziness in my head.  Not for long only half an hour or so, but a very good half hour.

Chiropractic and massage
The constant dizziness makes my neck and shoulders stiff, and the stiffness in this part of the body seems to increase the dizziness.  A chiropractor has helped me to make my neck better.  A goodmassage has also helped.

Therapy/counseling/medication
First I met a counselor at the hospital who works with patients from the ENT department.  Later, I’ve seen a psychotherapist for two periods.  When I got ill again four years ago it really made me depressed.  Life was not worth living although suicide was not really an option.  The therapy has helped me to deal with being chronically ill, not being able to work, the guilt I felt of being a lousy mother and wife.  At the therapist I learned not to fight so hard against an illness you cannot win the battle with.  Now I try to walk along and follow the illness.  We haven’t “made friends” but Mr. Menière is not my enemy any more. He is more like the annoying neighbor you have to live beside.  I´ve also started medication to increase the serotonin level, with medicine also called anti depressive pills, on a low dosage.  It doesn’t make life a feast but it certainly makes it easier to deal with the hard issues in a better way than being over whelmed by the problems.

Life today is rather good. The illness has taken a lot from me but also given me something.  New experiences, new friends, new hobbies and I certainly have had to get to know myself!

**Please note that I (Wendy) have added links the treatments that Susanna tried.  The links will lead you to sites that I found giving definitions of the terms, or to studies about the treatment.

As always remember that different treatments work for different people.  We are not doctors and we aren’t telling anyone what they should do.  This series is to allow people with Meniere’s to see how others have dealt with this disease.

Meniere’s Treatments Guest Post – Deb

On By WendyIn Meniere's Disease7 Comments

Deb from Faith Hope and Fighting Spirit is my Guest writer today.  Like many of us she suffered with Meniere’s for several years before she was diagnosed.  Deb is a teacher in Barrie, Ontario, Canada (1 hour north of Toronto).

This is the story of her trials with the treatments she has tried, and what is working for her.

The Meniett Device

Here is the readers digest story of my fight with Meniere’s. I have found the Meniett Device extremely helpful as a treatment, albeit, not a cure. I have tried various treatments over the years, but so far this treatment seems to work the best for me.

It is difficult to track exactly when Meniere’s first hit me but it was likely December 2001.

For 7 years I had attacks but I didn’t know what was wrong with me. Doctors thought they were vertigo migraines. It was not until 2008 that I was diagnosed with Meniere’s Disease and my Oto/ENT prescribed a low sodium diet and Serc. For over a year this helped but by the spring of 2010 I became very sick and began to miss work for weeks at a time. I am a teacher and in the fall of 2010 after a long hot summer I could not return to work. I couldn’t walk. I couldn’t even get dressed by myself or go to the washroom alone. I was desperate. I know I was depressed.

My Oto/ENT just kept giving me more and more Serc that wasn’t doing anything so I tried everything. At one point I was seeing my Oto/ENT, my family doctor, a chiropractor, a natural path, an acupuncturist, a massage therapist and an osteopath! I needed  a secretary to keep me straight with my appointments.

I was then given the opportunity through my Oto/ENT to be fitted with a ventilation tube so I could try a Meniett device. I had read about the device and wanted to try it, even though I wasn’t sure my insurance would cover the $3500.00 cost! This was on September 20th, I was not well enough to go back to school so what a Godsend this Meniett was! Miracles happen daily and I have been fortunate enough to be part of one. God heals in all sorts of ways and with me He chose the Meniett!

After using the machine just 5 days I was well enough to run again! I had missed this desperately. Three weeks after that on October 12th I was able to return to school. I was so happy to see my students and to lead a “normal” life. I hope I remember this feeling always. Illness really can be a blessing, especially when you can be so thankful for the healing in the end.

Since then I have used the machine 3-4 times a day. Each session takes about 5-7 minutes and it is small enough that I just carry it to work with me and use it on my lunch. My original tube was blocked recently but my Oto/ENT replaced it with a larger one that should last me 18 months. The procedure for getting the tube inserted takes about 5-10 minutes and is not that painful. My doctor just used a local anesthetic that burned a bit when it was put on but that’s it.

The premise behind how it works is that the air puts pressure into the inner ear which then moves the excess endolymphatic fluid to the endolymphatic sac.

You can check out more information on the Meniett and how it is used at:  http://www.meniett.com/

They will usually give you a 60 day trial period. If it doesn’t work for you, just send it back and they will not charge your credit card.

I am not entirely drug free. I still use meclizine periodically and I take Ativan at night if I am feeling extra stressed or I can feel the spins lurking in the back of my head. The really good news is that after a good fight with my insurance company it looks like they will finally pick up the cost!

I hope this helps. I wish all of you good health and strength to continue the good fight!

**Please note that I (Wendy) have added links the treatments that Deb tried.  The links will lead you to sites that I found explaining the premise behind these treatments, or to definitions of the terms.

As always remember that different treatments work for different people.  We are not doctors and we aren’t telling anyone what they should do.  This series is to allow people with Meniere’s to see how others have dealt with this disease.

To keep up with Deb’s progress please check out her blog Faith, Hope, and Fighting Spirit.

Next Post: Meniere’s Treatments Guest Post – Susanna

Meniere’s Treatments Guest Post – Angelea

On By WendyIn Medical Tests, Meniere's Disease5 Comments

Angelea is a fellow Meniere’s Warrior and Blogger.  Visit her blog at A Day In The Life With Meniere’s to keep up with her story.

Angelea lives in San Diego, California and is a wife, mother of three, and works as a nutrition support dietitian for a home infusion company.

This is her story:

When you are miserable and living in fear of leaving your home because of recurrent vertigo, you will try almost anything to feel better and get your life back.  From the day I was first diagnosed with Meniere’s disease, this is how I have felt.  Initially, I was confident I would respond to “conservative medical management.”  The odds were in my favor if you believe the statistics that 80% of people with MM (Meniere’s) do, in fact, manage pretty well on diuretics and a low-sodium diet that includes little to no caffeine or alcohol.  Even though salt, caffeine, and alcohol in the form of a glass of red wine with dinner were the cornerstones of my otherwise healthy diet, I was up for the challenge.  Bring it on! 

Unfortunately, despite a complete overhaul in my diet that resulted in an almost ten pound weight loss, vertigo episodes lasting 8 to 12 hours continued to plague me anywhere from two to four times weekly.  During this time, my dedicated husband scoured the internet and came up with some alternative treatments for me to try.

The first alternative to my doctor’s first line of defense (diuretics and diet) was to try antivirals.  There are a few published studies on relatively large populations of MM sufferers that suggest a strong correlation between the herpes class of viruses and MM and a significant improvement in symptoms with antivirals.  My doctor was familiar with these studies, however he is not convinced of a link just yet.  Regardless, antivirals being a relatively safe class of drugs, he was agreeable to prescribe a short course of Acyclovir.  I started off following the American (Gacek, et al) study’s protocol of 800 mg 4 times a day for 3 weeks.  By the end of the first week, my symptoms seemed to greatly improve.  But the vertigo returned with a vengeance once I began tapering to 3 times a day.  At that point, I asked to increase to 5 times a day consistent with the common dosage given for other herpes infections.   Again I improved over the course of the next 2 weeks.  But my prescription ran out and my doctor was not comfortable allowing me to continue on the high doses indefinitely.  Honestly, I didn’t want to be dependent on taking pills for who knows how long and continue to live in fear every time I tried to taper to a maintenance dose.  I just wanted this nightmare to end.

The next alternative treatment was a supplement regimen promoted by a guy on-line who calls himself John of Ohio.  Apparently a retired biology teacher, he did some of his own research and claims to have gained control of his own MM symptoms by taking a plethora of dietary supplements.  His logic was, well, logical so it seemed to be worth a try. It turned out not to be for me.   First of all, I was popping pills all day.  A couple had to be taken on an empty stomach, a couple more with food.  Some were familiar vitamin supplements and others were obscure to the point that they could only be found from a small handful of on-line suppliers.  Nonetheless, I stuck with it for a couple of months.  Some followers claimed relief almost immediately, yet others didn’t notice results for months.  It all sounded really good in theory; however, I have my reservations about the supplement industry, as well as the purity and long-term safety of their products.  Time and again, private testing companies have proven that many supplements are contaminated with potentially dangerous ingredients and/or contain significantly more or less of the active ingredient than what is stated on the label.  Then there are the studies that found that Beta Carotene supplementation, for example, promotes lung cancer cell growth and folate supplementation is linked to an increased incidence of colon cancer.  Finally, if one is taking a bioactive agent in high enough doses to have a therapeutic effect on the inner ear where blood supply is low, imagine the potential effects, good or bad, on the tissues in the rest of the body.

The way I saw it at this point was that it was only my ear that had a problem, so why not localize my treatment approach?
But, at the encouragement of my husband after having had read some pretty convincing testimonials on-line, I had to exhaust one more alternative treatment: upper cervical chiropractic adjustments, aka NUCCA.  The theory here goes that the nerves between your cervical vertebrae can become compressed and this can contribute to everything from MM to MS.  Again, logically, it could be possible, especially since this is the segment of the spinal cord innervating one’s ears and eyes, among other things.  Of course there were only two NUCCA chiros in my area and neither was covered by my insurance even though I have chiropractic coverage.  So out came a boatload of money for a 3-month course of adjustments and, somewhat worrisome, x-rays.  Yes, my posture improved a bit, I think, and it was completely painless to the point that it was hard to really believe this guy was doing anything at all except laying of hands on my neck.  A nice enough (young) guy, but as I got to know him over the weeks I found him to be quite naïve and really just not very smart.  I would say it was a relatively harmless thing to have tried except for the exposure to all the unnecessary radiation and the huge hit to our credit card.  And I continued to have vertigo as bad as ever.

By this time, I was 7 months into this nightmare and I just wanted to wake up!  Back to the doctor I went and it was decided the next best course to try was intratympanic dexamethasone injections.  I got one in October with some improvement and another in November.  I made it through December and January vertigo-free and finally feeling like a normal person again.  Then the week before my son’s 9th birthday, wham!  The nightmare returned.  I went in for another series of dex injections, as well as a trial of another diuretic (hydrochlorothiazide to Neptazane and back to HCTZ).  The dex failed miserably and I developed an allergic reaction to the new diuretic.  At this point, my doctor suggested adding high doses of oral steroids to another intratympanic dex shot.  Having worked with patients on oral steroids, I was all too familiar with the nasty side effects of these potentially dangerous drugs.  Plus, I was devastated to have experienced such a wonderful period of remission followed by complete failure and misery.  I was done.  I wanted off this rollercoaster.  I wanted to move on to something that had the hope of offering permanent, or at least long-term, relief.

I had been reading about intratympanic gentamicin treatments for months by now and this treatment strategy seemed to offer the best of both worlds: it was noninvasive and potentially permanent.  I had no fear.  My life was severely limited by now and I had nothing to lose.  So on March 25th, 2010, I had my first gentamicin injection.  It was a nonevent, painless as the dex had been.  I went home and waited.  I had a couple more vertigo attacks, but about 10 days later I began feeling the telltale signs that something was happening.  My balance was very poor and I felt really weird, but the vertigo and nausea were gone!  I would say it took about 3 months to regain a pretty decent sense of balance and another month or two for my hearing to improve a bit to a new baseline.  I still felt the episodic pressure in my ear, as well as fluctuating tinnitus just as I had before with my vertigo attacks, but I could function and life went on.  I continued to work, run the kids around town, and no longer lived in fear.

My doctor was surprised I had responded after just one gent shot.  He gives a lot of them and said the average number of shots patients needed before they got relief was 2.something.  I had read, and he concurred, that the vertigo could return, usually within the first year.  And sure enough, it did.  I got 8 beautiful months of relief and then my world turned upside down once again in November, 2010.  While it was disappointing, I was not defeated.  I knew what worked and went back to the doctor for another shot two days later. Then I waited and waited and waited.  Six weeks later, I was again confined to my house and suffering long episodes of vertigo several times weekly.   This had to be one of my lowest points.  The what-ifs reared their ugly heads and I had to seriously consider surgery.  I got a second opinion at the House Ear Clinic, even though my own doctor is a world-renowned specialist in treating MM.   They had nothing particularly new or better to offer me.

At my follow-up appointment with my regular neurotologist on December 30th, I was prepared to sign on the dotted line to have surgery: either endolymphatic shunt surgery or the more invasive, but more promising, vestibular nerve section (VNS).  But my doctor was agreeable to try one more gent shot, even though my hearing had diminished quite a bit over time.  The risk of too much gent being deafness.  But this, to me, was preferable to the possibility of a failed sac surgery or to anyone poking around behind the protective barrier of my skull.

This time I waited 3 long weeks and then, success!  I have been vertigo-free since the 3rd week of January.  I still feel off-balance and have lots of little mini-spins lasting a second or two several, several times a day.  I still want to complain many days, but I can’t.  I am vertigo-free!  Hallelujah!
I don’t know what the future holds, but I am just grateful for today.

Be sure to follow Angelea’s progress on her blog A Day In The Life With Meniere’s.

Treatments for Meniere’s Part 4 – CSF adjustment

On By WendyIn Meniere's Disease7 Comments

If you’ve been following my blog you probably already know much of what I’m going to say here.  If you haven’t been following my blog, you can read even more about my experience with this treatment over the last few months.

In November of 2009, I started seeing Dr. Kaylie at Duke University Hospital’s Vestibular Clinic.  “Physicians at the clinic conduct clinical research to learn more about vestibular function in people who suffer from balance disorders such as Ménière’s disease, migraine-associated vertigo, and viral inner ear diseases. Several studies are ongoing that will provide insight to help improve therapies.”  They are also “conducting research into chronic, disabling disequilibrium after Ramsay-Hunt syndrome and Ménière’s disease.”

In October of 2010, I went to see Dr. Kaylie about possibly getting the Endolymphatic Surgery in my left ear to try to control the vertigo I was experiencing.  At this time he asked me if I’d rather have the surgery, or try to find the cause of my Ménière’s.  Of course, I chose to try to find a cause.

Dr. David Kaylie and another doctor at Duke, Dr. Linda Gray Leithe, are doing research trying to find a cause of Ménière’s.  Dr. Gray is a neuro-radiologist, she is researching how increased or decreased spinal fluid pressure can cause different disorders, including Ménière’s Disease.

On November 3, 2010 Dr. Gray performed a lumbar puncture on me.  Before the procedure she told me that the normal rage for Cerebrospinal Fluid (CSF) Pressure was between 10 and 20.  I measured exactly in the middle, 15.  However, Dr. Gray doesn’t think that everyone should have the same “normal” baseline.  She does empirical testing to find out if her patient may indeed have low or high pressure even though they have “normal” readings.  First she added some artificial CSF and all of a sudden I was able to hear her talking behind me, when I couldn’t just seconds before.  My dizziness disappeared, and I felt great.  I was so excited.  (If this hadn’t worked she would have given me a medication to lower my pressure to see if it helped, but this wasn’t necessary.)

That night, I had a horrible vertigo attack.  It lasted for hours.  After talking with Dr. Gray she felt that the fluid she had added was leaking out and that caused me to have the attack.

Photo taken my the Blood Patches.

On November 24th, she did another lumbar puncture, I was at 17.5.  She then performed a Myelogram.  During the myelogram Dr. Gray inserted a contrast dye in my spine, I then had to roll over and over and lift my butt in the air…to make sure the contrast dye was distributed evenly.  I was then given a CT scan that showed I had 6 leaks.  She then patched 4 of leaks that they found.  She didn’t patch them all because it could have caused my pressure to get too high.  She used my own blood to patch the leaks.  Immediately after the patches I could shake my head and not get dizzy.  I felt so much better…I felt normal.   (to see more photos and read more about this procedure see my post from Nov. 27, 2010)

Unfortunately, just 10 days after the blood patches, I started to have symptoms again.  Dr. Gray wasn’t sure if I had low pressure again or if I was starting to have high pressure.  So I took some of the medication that lowers your pressure.  I didn’t feel better, if anything I felt worse.  It took much longer to schedule my next lumbar puncture and patches because of the Holidays.  I had a very hard time during this wait.  I felt I had been abandoned.  The depression that consumed me was horrible.  Finally, I started to take the advice of my therapist and other Ménière’s friends, I decided to accept my disease.  I believe the Ménière’s will always be with me.  I don’t think I’ll ever be happy with this disease, but I accept that it is a part of me.  Even when I’m feeling good, I know it may come back.  This has really helped me to overcome my depression.

On January 28th 2011, Dr. Gray did another lumbar puncture and patched my leaks with something called Tisseel, a tissue glue.  Since she didn’t use the blood patches I didn’t have any extra fluid added during this patch.  It took me about 2 weeks to start feeling a lot better.  (To read more about this procedure please see my post from Jan. 28, 2011.)

I am now feeling so much better!  NO vertigo!  My hearing in my left ear is staying up and stable, my right ear’s hearing didn’t come back, and I still have tinnitus.  They think my right ear was probably just too damaged after having so many attacks.  I can deal with the symptoms I have left.  I’m leading a much more “normal” life.

Since the hearing in my right ear has stabilized, next week I will be evaluated for hearing aids.  I’ll let you know how that goes.

I’ve been asked a few questions about this procedure, I thought I’d try to answer some of them here.

  1. What caused the leaks? I don’t know.  It could have been caused by an accident, or it could be simply genetics.  Unless CSF leaks are found right after an accident, they rarely figure out what causes them.  It’s funny, until someone asked me, I didn’t even think to ask.  I was just so happy they found something tangible that could be causing my symptoms.
  2. Do my doctors think this could have been the cause of the Unilateral Ménière’s or was it something that happened later on? It’s my understanding that they are thinking this would have been the cause all along.  I know they are not just testing this on bilateral patients but also on unilateral Ménière’s patients as well.  Only one person they tested ended up not being helped by this at all.
  3. What’s next? Well, I have the evaluation to possibly get hearing aids next week.  But I don’t see Dr. Kaylie again for 6 months.  Unless something happens, then I’ll see him and/or Dr. Gray before then.  However, they feel that they know what is causing my symptoms now, and if I have a relapse they know what to do to fix it.  (Yes, I could get another leak at some point in the future.)
  4. What about people who have high pressure how do they treat them? I’ve met another of Dr. Kaylie and Dr. Gray’s patients.  She has Ramsey Hunt Syndrome and was the first person brought into this research.  She wasn’t responding to normal treatments, so they decided to try this.  She has high pressure.  She was put on medication to lower her pressure.  It worked for a few months, but it hasn’t been able to control her symptoms.  Recently, Dr. Gray gave her another lumbar puncture and lowered her pressure.  She is now on more medication.  However, she may have to have a little tube (called a shunt) put in so she can drain the excess fluid when necessary.  They only do this if a patient’s pressure is very high and they can’t control it.
  5. How can I find out more information about this procedure? Feel free to ask me anything about my experience.  Also,  Dr. Kaylie and Dr. Gray, don’t mind answering questions.  Just click on their names and it will take you to their pages on the Duke site, where you can get information to get in touch with them.  If you need to email them, just write to me and ask me their email addresses.

I’m sure I’m forgetting something, so if you have any questions, please feel free to ask.

Up Next:  Treatments for Ménière’s – Angelea’s Story

As always remember that different treatments work for different people.  I am not a doctor and I’m not suggesting to anyone that they should try this or any other treatment I’ve tried.  This series is only meant to allow people with Meniere’s to see how others have dealt with this disease.

Treatments for Meniere’s – Part 3 Surgery

On By WendyIn Meniere's Disease48 Comments

There are a few different surgeries that are performed as a treatment for Meniere’s, this post will focus only on the 2 that I have undergone.  Getting Tubes in my ears, and Endolymphatic Sac Surgery.

Tubes – A Tympanostomy tube (sometimes called Pressure Equalization tube, a Ventilation tube, or a grommet) is inserted in the eardrum to maintain a tiny hole.  This procedure is often used to help people with chronic ear infections, especially children.  Since patients with Meniere’s normally have fully functional Eustation tubes placing “ventilation” tubes in the ear shouldn’t do anything.  However, many doctors still try this, and many patients say that it helps.

I first had a tube put in my right ear in the doctor’s office.  No anesthesia at all.  I will never do that again.  It was a horrible experience.  This tube fell out within just a couple of months.  I then had a T-tube put in, they are more permanent, often lasting years, and that was done under general anesthesia.  This did seem to help my symptoms for a long time.  When my symptoms returned we found out my tube had fallen out, at this time I was having trouble with both ears.  So I had T-tubes put in both ears.  The symptoms did not get better.  At this time my old ENT told me he didn’t really know that much about Meniere’s.  I immediately found a specialist.  Dr. Kaylie, an otolaryngologist told me the reason I felt better could have been that I was just having a period of remission.  He pointed out that my tube could have been out a long time before I started having the attacks again, and we simply didn’t check it until the attacks came back.

So did the tubes work for me…maybe, maybe not.  I thought they did for a while.  (over a year)  But the symptoms came back, and the new tubes didn’t help.  So I just don’t know.

Me right after surgery, getting ready to come home.

Endolymphatic Sac Surgery –  There are a few different Endolymphatic Sac Surgeries:  Endolymphatic Shunt Surgery, Endolymphatic Sac Decompression, and Endolymphatic Enhancement Surgery.  Often these terms are used interchangeably, but they can mean very different things.

Endolymphatic Shunt Surgery normally means that the surgeon puts in a tube to “shunt” the fluid from the endolymphatic sac to either the cranium or the mastoid cavity in the middle ear.  Most people think that the tube is a “shunt”, but the definition of the word shunt is to move fluid from one area to another.

Often the term Enodymphatic Shunt Surgery is used for each of the endolymphatic surgeries, since the fluid is being “shunted” to a different area in each.

Endolymphatic Sac Decompression Surgery is a surgery in which the surgeon cuts a hole in the endolymphatic sac and drains it, but doesn’t put in a tube.

In Endolymphatic Enhancement Surgery the surgeon doesn’t normally drain the sac, he or she will enlarge the area around the endolymphatic sac so the sac will have more room to expand during an attack.  Therefore, the fluid will have more room within the membranes and sac without causing it to leak or burst.   This is the surgery that I had, however, my doctor often called it a “shunt” surgery.

Dr. Kaylie put an incision around the back of my ear.  He went in and removed part of my temporal bone and skull around the Endolymphatic Sac and Dura Mater.  Now my membranes should have plenty of room to become dilated without harm.

We decided to do the right ear because it was the original ear affected, and it was causing most of my vertigo attacks.  For months I had very little vertigo, and even when I started having attacks again they were being caused from my left ear.  I think my hearing dropped in the right ear after the surgery, however, it has been stable since then.  I will now be able to get a hearing aid for that ear since the fluctuations have stopped.

I was very pleased with the results from this surgery.  It drastically reduced the number of attacks I was having in my right ear, and it stabilized the hearing in that ear.  However, the recovery was difficult.  I was in and out of the hospital the day of the surgery, but this is a very invasive surgery.  It was painful for months.  I think the pain would have been lessened if I didn’t have to wear glasses.  My glasses would irritate the incision.  I had to take the arm off of my glasses for a long time.  I do however, want to stress that this was not an easy in and out surgery.  At least it wasn’t for me.  The recovery period was much longer than I thought it would be. (over a month)  However, I’m not sorry that I did it, and I would do it again if necessary.

***update*** after a year, I ended up having the endolymphatic sac surgery in my left ear too.  The vertigo was cut by about 75% for about a year and a half.  Then it came back full force.  I do not feel this surgery was worth it.  If asked at this time, I would not have the surgery again.  I’m glad I had less vertigo for about 2 years, but there is a possibility I may have had less anyway, and the surgeries were very difficult (for me)  The first was very painful, the second caused severe vertigo for over a week.

I started having attacks again within 5 months of the surgery, but they were being caused from my left ear.  It was causing attacks as often as 3-5 times a week.  I went in to talk to Dr. Kaylie about having the surgery on my left ear, but he asked me if I would be interested in possibly finding the cause of my Meniere’s.  Of course I was interested…

and that will bring us to my next post:  Treatments for Meniere’s – Part 4  Stabilizing Abnormal CSF pressure.

I’m also happy to announce that I will be having a few Guest Posts coming up after my next post from fellow Meniere’s patients who will talk about the different treatments they have undergone.

To read more about different treatments, there is an intensive list at Meniere’s Info.com.

If you have any questions about the treatments I have undergone, please feel free to ask me about them, either in a comment or feel free to email me!