Category: Meniere’s Disease

The Challenges of Summer.

On By WendyIn Disability, Fructose Malabsorption, Gluten-Free, Meniere's Disease4 Comments
Phineas and Ferb courtesy of The Disney Channel

As Phineas and Ferb say:

There’s 104 days of summer vacation
And school comes along just to end it
So the annual problem for our generation
Is finding a good way to spend it…

Yes, it has been a long time since I’ve been in school and had a “summer vacation”, but I have always loved summer.  For as long as I can remember I’ve always felt better in the summer.  I hurt less, and I just want to get out and do more.  Longer Days and Warmer Nights…life is good.

The challenges of Summer?

  1. I over do it because I feel better, then I pay for it!
  2. I get over heated easily and don’t realize it because I love hot weather.  (although we lived in Palm Springs, CA for a while…it was too hot there!)
  3. I over extend myself.  I have a hard time saying “No”, I seem to think I can do anything during this time of year.
  4. I often end up eating things I shouldn’t, and get sick.  (I just don’t plan well.)
  5. Again, I get too hot before I realize it!
How I can over come these challenges?
  1. Well, this should be easy, just do less!  However, it’s often hard to tell when I might be over doing it.  I guess my best option here is to pay more attention to what my body is telling me.  And REST OFTEN.
  2. Limit the amount time I spend in the heat.  Don’t just trust that I can tell when I get too hot, or thirsty.  Set a time limit, and stick to it.  And DRINK A LOT of water!
  3. I need to remember, I can only do so much!  And sometimes, I can’t do anything.  I feel guilty when I tell people I will be somewhere and then I can’t show up.  I need to tell more people either, “No.”  Or “Maybe.”  If people don’t understand, then do I really want to be doing anything with them?
  4. Since I have gluten and fructose intolerance, there are a lot of things I can’t eat.  Too often I go out and don’t realize we may not be home when I get hungry.  I must plan better for this.  Make sure there will be food I can eat at parties.  The easiest way to do this is to bring something.  When we are going out and about I need to make sure we will be near places I can eat, or keep food with me.  I used to carry protein bars in my purse that were gluten free so I’d always have something.  Now, it’s more difficult.  I haven’t found a protein bar that doesn’t have things I can’t have because of the fructose.  I must find something!!
  5. I used to never get over heated.  I have a convertible, and I love to drive and feel the heat, and wind.  On Wednesday, I was on my way home and got stopped due to road work.  I was sitting still for about 20 minutes.  When I got home I felt sick, and dizzy.  I got way too hot.  How can I prevent this?  I have to keep WATER with me.  Not soda, WATER!  If I get stuck in traffic, I need put the top up and turn on the AC.
What do I want to accomplish this summer?
  1. Complete all the requirements for becoming a licensed foster parent.
  2. Perhaps take a vacation…something we haven’t done in a very long time.  Even a long weekend would be nice.  But traveling scares me…I’ll have to be prepared.  And we really don’t want to leave our dog.
  3. Take care of me.  (read *pamper* here)
  4. Read more books.  I really don’t know if this is possible, but I’ll give it a go.  (I love to read!)
  5. Enjoy my birthday!  (July 2nd)
  6. Spend time with hubby.  (I don’t really care what we do, just as long as we do it together.)
  7. Enjoy my pets.  Especially Sandy, on July 2010, the vet told us that Sandy had 6 months to a year to live.  I don’t think anyone told her!
  8. Enjoy driving.  (something I haven’t been able to do much for the last 2 years.)
  9. Enjoy our garden!  This is the first year we’ve tried growing a vegetable garden.  I keep looking at a friend’s garden and think…”Wow, why does their garden look so much better than mine?”   Oh yeah, they aren’t using all organic practices.  Let’s just say I now understand why organic produce cost so much more.
No matter what your plans for the summer, be sure to take care of yourself.  Keep things close to you that make you feel good.  For example: I take a bath every night right before I go to bed.  It really helps me get to sleep, feel more relaxed, and hurt much less.   I put lotion on every night, often my husband puts special peppermint lotion on my feet.  (My feet get hot at night and the peppermint makes them feel cool.)
Spend time with people who are good for you.  Avoid people who are toxic.  (you know who they are, you may feel like you have to spend time with them for some reason or another, maybe they are family, but you don’t.  Just say “NO”.  You can do it.  I know you can.)
Enjoy yourself.  That’s the most important thing.  Find ways to make your life easier, and more enjoyable.
Then pass it on.  Let other’s know what secrets you have found that make you feel better.
What’s your plans for the Summer?

Hearing fluctuations

On By WendyIn Meniere's Disease4 Comments

I woke up yesterday and the hearing in my left ear is down, and I felt a bit off-balance.  I slept for 4 hours in the middle of the day.  Then I felt much better, but still my hearing was off.  I went on to have a nice night with my friends.

This morning I woke up and my hearing in my left ear is still diminished quite a bit.  When I turn my hearing aids on it plays 5 notes, I could only hear 2 of them in my left ear.  So, I’m simply not hearing certain frequencies.  Today I took it easy.  Still no spinning, but I’ve got the advanced warning signs.  Hopefully, it won’t happen…but.

I’m very stressed tonight, and got very upset earlier.  I know stress can exacerbate Meniere’s symptoms, but we all know, you just can’t turn off our emotions or what is going on around us.

My friends who were visiting this week left this morning.  I will miss them.  I wasn’t able to do a lot this week.  We went to a very nice party on Monday, but on Tuesday I woke with a sore throat and just didn’t feel well.  I thought I was in the sun too much on Monday and didn’t drink enough, but the symptoms continued.  I still have a scratchy throat.  I don’t know if I have a very, very slight cold, or if I have allergies.  My bet is on the allergies, but really I just don’t know.

Wish me luck that my Meniere’s warnings don’t turn into an attack.

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.

Rainbow, Tears, and feeling Dizzy

On By WendyIn Chronic Illness, Life, Meniere's Disease7 Comments
I don't know if you can see it in this picture, but this was a beautiful rainbow, with a second rainbow right above it.

We had a nice rain on Friday.  Stuart went to leave the house and called me out to see this beautiful rainbow.  How fabulous.

Thursday was our last Model Approach to Partnerships in Parenting (MAPP) class.  For the past week I’ve cried and cried.  I was grumpy, argumentative, and just plain scared.  I finally realized that I was letting what my father said get to me.  I read a lot between the lines.  He really didn’t say that much, but I could just hear the disapproval.

I’m venting here, so forgive me.

The classes ask you a lot about your relationships.  They ask about your support system.  They ask how your family will react to you having a foster child.  I knew how my father feels about African Americans.  I know he’s a bigot.  But I felt I needed to ask him.  After all, this is going to be my child, perhaps he would feel differently, perhaps he would support us.  (I know unrealistic dreams.)  When I told him it was highly likely that the child we would get would be an African American, and wanted to know if he could accept that.  He told me that I knew how he felt about things like that.  This hurt and I continued to think about it.  Finally, I felt I needed to ask more.  I asked him if he could accept any child that wasn’t white?  If he could accept a mixed race?  Anything?  This is the answer I got: “As for as your question
about the Foster care thing I don’t really know how to answer that because that is really up to you what you want to do.  I don’t think in the long run you will be happy with it but I am wrong a lot of the times.
So I am just saying do what ever you and Stuart want to do and don’t worry about what anyone thinks.”

Don’t worry about what anyone thinks.  That includes him.  And telling me that he doesn’t believe that I will be happy with this.  Yeah, Pop, thanks for the support.

I hate to admit it, but his words made me doubt myself.  This isn’t unusual, but I thought I had grown past it.  I realize that I need to just back away from my immediate family, but this is very hard.  It’s hard to not want my family to support me.  However, I’m not surprised.  The only person in my family who ever supported me was my mother.   I miss her.

Now that I realize what was really going on inside of me, I’m feeling much better.  I’m very happy with my little family right here.

On Thursday I was having a lot of ear pain.  When we left our class that night I started feeling dizzy as we went down the elevator.  As we walked out to the car, I was scrambling for some Valium.  (can’t be too safe, right?)  When I got to the car, I took the Valium with some watered down warm diet Dr. Pepper that was in the car.  Yuck.  But it was wet, and it worked.  Don’t you hate it when you really need to take a pill, and you don’t have anything to drink?

The disequilibrium subsided, but the pain continued through that night.  The next day it was better.  Today is the last day of antibiotics for my ear infection.  I really hope it has knocked it out, and I won’t have to take any more.  I’m thinking the pain was mostly from all the tears.

The dizziness has been a bit scary.   I’m sure it’s because of the ear infection and the crying.

As another Meniere’s warrior said this week, “I am so utterly grateful and do not take one day of freedom from vertigo for granted.”   (Thanks Angelea for all the inspiration.)

Working Girl

On By WendyIn Chronic Illness, Meniere's Disease7 Comments

First, I’d like to thank all of my friends for checking on us after the storms hit North Carolina.  We were very fortunate, all we had at our house was a lot of rain.  The tornadoes came through the next town over.  Raleigh was hit pretty hard, but Durham wasn’t hurt.  It means a lot to me that so many people cared enough to check to make sure we were alright.

This week I’m working for my husband’s company.  His boss and wife are on vacation, and they needed someone to answer the phones and asked if I would be interested.  I was thrilled that I could say yes.  Just think a short time ago I couldn’t commit to anything like this.  Also, I couldn’t hear well enough to talk on the phone.  Thanks to my new iCom link for my hearing aids I can hear the phone right in my hearing aids, it’s great.  It’s like having a blue tooth in both ears at the same time.

iCom
iCom

This little box connects my hearing aids to my phone, TV, iPod, and/or computer.  If I’m watching TV and the phone rings it will shut the volume for the TV off so I can answer the phone.  How cool is that?  I just love this little box.

I’m still so amazed at how much my life has changed.

However, last night I had something unsettling happen.  I was putting my hair up in a pony tail, I turned from the mirror and the world did a little dip.  Just for a second, and it didn’t come back.  But before I would have thought that was the beginning of a vertigo attack.  My stomach did a flip-flop, but that was all.  Hopefully, it’s nothing, but when you’ve had my past experiences you know it could mean something.

What Wonders I am Hearing.

On By WendyIn Meniere's Disease9 Comments

I’m so very happy with my hearing aids.  I had no idea I was missing so much.

My hearing aids, with a nickel and dime to show scale.

My right hearing aid has a larger ear piece because that ear has more severe hearing loss.

When I first put them in everything sounded so loud.  I could hear my own voice way too loud, but within just a couple of hours I wasn’t noticing my voice, and I was enthralled by all the little sounds I could now hear.  The audiologist told me that I might find some noises annoying, and she could program my hearing aids so they wouldn’t bother me.  Some people find the clicking of typing too loud, or high heels on the floor, or even news paper.  I’m more fascinated by the fact that I can now hear these things.   However, I have found one noise that is bothersome.

I told my husband a few days ago, “My hair is too loud.”   (he laughed and said it sounded as if I dyed my hair pink or something)  Seriously though, I hear my hair brushing against the hearing aids.  It makes this swishing sound that makes it hard to hear other things.  When I got my hearing aids I had my hair in a pony tail, I didn’t know my hair would be such an annoyance.  I hope she can program them so I don’t hear that as much.  The microphone is at the top of the part of the hearing aid that goes behind my hear, so when my hair is down my hair covers the microphone.

This is what my right hearing aid looks like in my ear.

Hearing aids are expensive, and unfortunately they weren’t covered by my insurance.  However, they are worth every penny.  I’m so thrilled with them already.

Next week I will be getting an iCom, it’s a device that makes it possible for my hearing aids to be able to interface with a diverse range of communication systems like telephones, televisions, MP3 players, computers or other audio sources.  I can’t wait to see how different talking on the phone will be.  I’m still having a bit of trouble with that.  It’s possible, but not ideal.  With this device my phone will ring in my hearing aids, and I can answer it by clicking on device and I will hear my calls in both ears through a blue tooth.

I’ll let you know how it works after I’ve tried it for a little while.

Oh, the things I can hear!

I’m really driving again now!

On By WendyIn Life, Meniere's Disease6 Comments

I’m so very excited, we bought me a car yesterday!!

It’s been about 4 years, give or take, since I had a car of my own.  Now that I can drive again, and we will probably be having a child in the house soon, it was time for me to start looking at cars.  It has taken about 2 months of looking, but yesterday we found the perfect car!

It’s a 2008 Convertible Volkswagen Beetle.  Isn’t it cute??

As a friend of mine said today, “Watch out Wendy’s on the road again.”

What a milestone.  Just think, I couldn’t drive just a few months ago, now I have my own car.  hehehe!

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? 😉