Tag: disequilibrium

Another Lumbar Puncture in my Future

On By WendyIn Chronic Illness, CSF, Meniere's Disease8 Comments

The headaches have gotten worse.  The tinnitus is mind-boggling.

image from Google images, not sure where the original is from.

 

Dr. Gray wants to test my pressure again.  If it’s low I’ll be getting another myelogram to look for new leaks.  If it’s high, I’ll probably be put on medication for a while, it may just be taking my body a while to get used to the higher pressure after patching the leaks.

I’m so tired.  And tired of just lying around.  Staying horizontal is helpful, so that’s what I’ve been doing most of the time.

Keeping a journal.  I can now go in with dated material saying how I felt each day.  This is thanks to the “morning pages” I’ve been writing for the Artist’s Way workshop.  I write about much more, but of course, my health is in the forefront of my thoughts right now, so I’m writing a lot about that.  Now I’m just going to go through my journal, and make a condensed diary of my symptoms.  I should have been doing this all along, but I hate it.  I don’t like to think about my symptoms on a daily basis.  They seem worse when I actually sit down and think about it.

I’m still trying to get my Day Zero list completed.  I’ve completed 3 things, and have 10 in progress.  Anyone else out there have a list of goals they are trying to complete?  I’m finding this very motivating.  I bought a Living Social offer for a local Art Class!  And we bought one for Swing Dance Lessons!  Yes the dance lessons will have to wait for a little while, but the offer doesn’t expire for 6 months.  I’m confident we’ll be able to do it before then!  I’ve been looking at the classes that are offered at Happymess (the place the offer is for), I’m hoping to learn how to Batik, or perhaps I’ll do a figure drawing class, or even a still life??  So much to do, so little time….just 978 days left, and 98 more things to complete.

Being a better Advocate – updated

On By WendyIn Advocate, Health, Meniere's Disease4 Comments
little butterfly on my Echinacea plant

I’ve always said that we must be our own best advocates.

We need to find out as much as we can out our illnesses, and make sure the doctors we choose are up to date, and caring.  For me, I like doctors who will think outside the box.  Who try empirical evidence, instead of thinking the normal is normal for everyone.

It’s also very important to make sure your doctors understand what is going on with you.  That has been a hard thing for me lately.

I didn’t want to admit that I’m not doing well.  I have been so happy with the results of the CSF patches, that I didn’t want to think that I might be taking a step backwards.  I’ve been keeping my doctor advised of my situation, but I have been downplaying it.  Stuart says I haven’t even been honest with myself.  I haven’t admitted that Meniere’s has been ruling my life again.   No, I haven’t been having full-blown attacks, but I’ve been feeling so bad that I spend most of my time lying down or sleeping.  I got the Wii Game Just Dance this week.  It’s so much fun, but every time I try to do it, I end up having mini spins and spending hours just wanting the world to be still.

So today I sent Dr. Kaylie an email, and told him just how much this has been affecting my life.

I realized that I have not been taking my own advice.  I have not been a good advocate for myself!  That is going to stop.

If I don’t hear from Dr. Kaylie by tomorrow I will have Stuart call his office.  (Yes, Stuart.  Another way this is affecting me?  I can’t really hear on the phone very well.)  I’ve also decided I don’t feel comfortable driving.  Feeling a bit drunk all the time, is not the way you should feel when you are driving.

I feel much more empowered now.  Just speaking up, and telling my doctor that I’m disturbed by what is going on, made me feel like I was doing something productive.

**update** Dr. Kaylie emailed me back, and a copy was sent to Dr. Gray (Linda).  He said, “It might be a good idea to get another myelogram.  What do you think Linda?”

I’ll keep you posted on the outcome.

Way Too Much Stress!

On By WendyIn Chronic Illness, Meniere's Disease, stress3 Comments

Another venting post.  If you are tired of hearing me bitch, please just ignore this post and come back next time.  : )

I think I’m dealing with things pretty well…considering.  Stuart says that I just brush things off, that I’m not realizing how much has been coming down on me.  Perhaps that’s why I haven’t been feeling well?  I don’t really feel stressed…but I think it’s coming out in other ways.  Deep Breath!!

As you all know I went through a scare with Stuart recently.  I must admit this has gotten to me more than I want to acknowledge.  I realized this yesterday when we were lying in bed, laughing about something, and I grabbed him and looked him in the eye and said, “DON’T YOU EVER SCARE ME LIKE YOU DID!” And yes, I was shaking him a little bit as I said it.  What the????  And I keep dreaming about it.  We will be together in my dream and I will look over and see him as he was when he walked in the door on that fateful day.  Not a good dream.

Now I have something else on my mind.  One of my best friends is going through marital troubles.  She has twin girls who just turned 3.  Her marriage has been strained for the past couple of years.  Night before last he was arrested for physical abuse.  I’m so worried about her.  I’m happy that she is on her way to her mother’s, and will be away from the situation for a while.  But I’m concerned.  And I’m afraid she won’t talk with me about it.  I knew things weren’t right between then, but she hasn’t talked to me about it really.  She didn’t want to “bother” me with everything because of what I’ve been going through.  That really bothered me.  It really bothers me that my friends don’t think I could still be a friend because of my health problems.  Am I not still the same person?  Am I not still the person she has confided in for years?  Or is she just using that as an excuse because she knows I never really liked her husband.  Or because she was embarrassed?

But she isn’t the first friend who has told me that they didn’t want to “bother” or “burden” me with their problems because of everything I’ve been going through.  That hurts, and I just don’t get it.  For one thing, I’ve been a lot better since January.  And even when I was more ill, it would have helped me so much if my friends still made me feel needed.  I had to start this blog to start feeling needed again.

I shouldn’t say I don’t get it.  I do.  But people just don’t understand.  I don’t need to be left alone to wallow in my illness.  I need to feel needed!  I need my friends.  Instead I’m often avoided.  Even now that I’m feeling better.  I feel like some of my friendships have not survived.  We are more like acquaintances now.

I’m still not feeling “normal”.  I have “slosh head”.  My hearing has been down for a month now.  So I’ve been on constant alert that I may be having an attack at any moment for weeks…heck, this is beginning to feel like my normal.  I am so tired so much of the time.  What is wrong with me?  I’m sleeping 10 – 12 hours a night, and often take a 2-4 hour nap during the day.  So some days I’m only awake for about 8 hours.  Oh, and the headaches.  I’ve been having more and more headaches.

OK, perhaps the stress is getting to me.

Much better.

On By WendyIn Chronic Illness, Disability, Life5 Comments

I wrote this post yesterday but for some reason I didn’t post it.  I still want to let everyone know what was going on, but I also want to say that the tinnitus has calmed down to a tolerable level, and my hearing is almost back to normal.  I’m feeling much better!!

But this was yesterday:

As we all know, I’ve been under a LOT of stress lately.  I’m really trying to take care of myself, but I still feel pretty crummy.

Last Thursday, I woke up and the hearing in my left ear had significantly dropped.  Now, it’s been over a week, and still my hearing is down.  I can’t remember a time this has ever happened before.  Normally, if my hearing drops I have an attack shortly afterward.  My last attack came after 4 days of diminished hearing, and that was unusual.

After the scare with my hubby, I have been so very tired.  I’ve been sleeping A LOT, and mainly just lying around.  I keep feeling off-balance, but not spinning.

Last night the tinnitus significantly increased.  And I really mean Significantly!  My left ear is roaring so loud I can hardly concentrate on anything else.  Sleep is almost impossible.  (I did doze on and off all night.)  It’s just so dang LOUD!  My head hurts.

I just want to scream, “What the F*%&?”

I’ve been feeling like I’m on the verge of an attack for over a week.  Hearing dropped, fullness increased, tinnitus increased, and disequilibrium is icky.  Being on constant alert is so tiring, and painful.  Yes, I said painful.  I am in knots, all over my body.  I am so tense I just can’t relax.  Every night before I go to sleep I have to take a hot bath to try to help the pain.

On top of that, I can’t stop thinking about how close I came to losing my husband.  I just don’t know what I would do.  He is just so much of my life.  My best friend, my lover, my care-giver, my provider….  Not only would I be losing the love of my life, I’d be losing my stability.  I feel horrible for thinking about those things.  It has been so hard for me to give up so much of my independence, and I finally came to terms that I can rely on him, and accept his help…but what if, in the blink of an eye, it was all taken away?  Yes, we have life insurance.  I would be provided for monetarily for some time, but money can’t give me what Stuart does.  He accepts me, he loves me, he is always there when I need him, and I need him a lot.

I’m working on it.  But that was a big scare, and it will take some time to deal with it properly.  I just hope it did some good.  I hope Stuart can find more in life to make him happy.  He has a career he’s not that happy in, but we need the money.  I would really like for us to be able to get in the position where he could afford to make much less money, and where I could contribute.  Having a job you love is much more important than having money.  Unfortunately, with the medical bills, and a mortgage, money is pretty important right now.  We thought about down sizing, and simplifying our lives, but selling the house in this market…not really possible.  But I want to have a plan.  A plan to change things.  I want for Stuart to find hobbies or volunteer work that he can find happiness in while he still has to work in a career he really doesn’t like.  We can do this.  I can help.

thanks for listening.  I feel much better today.  : )

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.

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.

8 Days after…still waiting…

On By WendyIn Medical Tests, Meniere's Disease3 Comments
image courtesy of http://www.artbywicks.com

I know I haven’t been posting as much as I usually do, and I haven’t been talking about my progress after my Cerebral Spinal Fluid patches, but I just haven’t felt all that different.

I wake up in the morning, and most mornings I feel pretty good.  (that’s not unusual)  I continue to feel a bit off balanced all the time.  As the day goes on I seem to start feeling a bit worse.  I don’t really know how to explain it.  It’s kind of like I’ve always felt, but different.  My head feels full, and I feel like if I moved my head too much I’d barf.  I feel slightly nauseous most of the time.  If I get hot, it gets so much worse.  I’m just not sure what it all means.  Stuart tells Dr. Gray and she seems content.  She says it’s good that I’m not having headaches.  I’m happy about that too.   I sure do wish I would see more improvement.

I do feel like my hearing is a bit better in my left ear, but I still have trouble hearing certain frequencies.  I don’t realize just how much I rely on closed captioning until I don’t have it.

So, my progress so far…not too much.  But I haven’t had any full blown Vertigo attacks!!  That says a lot.  One time I felt like I might start having one, I took a pill to reduce my pressure (like Dr. Gray advised) I was still having symptoms 30 mins later, so I took another one…and shortly afterward I couldn’t stand it any longer and took a Valium and Phenergan.  I started feeling better, but I’m not sure what caused it.

I had a Gastrointestinal CT scan on Thursday.  It was not a fun experience, but it wasn’t the worst I’ve had.  I think I had a reaction to the Contrast they had me drink before the scan.  I had horrible diarrhea starting before I started the 3rd cup.  (you have to drink 3 cups of this stuff, they tell you that, but they don’t tell you the cups are 20 oz.).  Well, they almost had a mess to clean off of their expensive machine.

The other bad thing about the test.  They were also supposed to put in an intravenous dye.  I told the nurse on the phone the day before that it is very hard to find my veins.   So she took me back in the very cold CT room and tried to start and IV, she looked at my arms and said, “Oh, yeah, you told me this would be a challenge.”  I said, “Yeah, I don’t know why people never seem to take me seriously.”  She said she did, she just forgot.  She then said she could see any veins, and she couldn’t even feel anything.  I said, well, it’s very cold in here, they had to use a hot pack last week to help out.  Well they didn’t have that.

So after 5 times of her trying to find a vein, and each time she would say something like, “I don’t feel confident about this, but I’m going to try.”  I felt that was not the thing to say to a patient.  She was very concerned for my comfort, but she was not confident in her job.  One time when she said that and was about to stick me (try number 4 I believe) I turned to her and said, “Honey, You need to get some confidence, you have to believe you are going to do this or you will never be able to do it.  Take control, tell that vein who is boss!  And just do it!  Don’t worry so much about hurting me, I’ve had much worse.”  She just said, “You are so funny.”

OK, well, I do believe, if you believe you are going to fail, you will fail.  It was obvious she believed she was not going to be able to do this and she never did.  Finally, she had to call the radiologist and tell him that she couldn’t do it, he said fine.  We just wouldn’t have that part, if they needed it later, they’d try again.  I said, “with someone else giving me the IV.”  : )

Luckily, it doesn’t seem to be a need for them to do that part of the scan.  Yay!

The results?  I have a Kidney stone!  Well, that was a surprise.  It’s small and not in a place where it’s causing any harm right now, but still, A Kidney Stone…crap.  I just wouldn’t think it possible with as much water as I drink.  Oh well.

The doctor also told me that I have a fatty liver, I don’t have liver disease though because my enzymes aren’t high.  So it’s just fat there because I’m over weight.  I told her, “Well that doesn’t surprise me since I gained 40 pounds in about 2 months, that is one of the reasons I came to see you.”  She said, “A low-fat diet….yadda, yadda….”  I told her that is what I was doing before all this started…she said I still needed to do the breath test to determine if I’m lactose or fructose intolerant.  And then come in for another office visit to reassess.   I told her I’m working with a nutritionist.  She was great!  (I thought, then why didn’t you suggest it?)  Can you tell, I’m not impressed by this digestive health office?

She just keeps telling me to take fiber.  Well, that didn’t work.  I tried.

I’m glad my nutritionist doesn’t believe in a one size fits all philosophy.  She is working with me to figure out the best diet for me, and how to get me healthier.  One step at a time.   Already working with her, my diarrhea has gotten better.  I’m still having it sometimes, but not every day!  Isn’t that exciting??

I’m still hopeful that the patches will work.  Again, one step at a time.

Tomorrow is my hubby’s birthday.  I gave him a gift certificate for a 90 minute massage.  He had it yesterday.  It was so nice to be able to pamper him for a change.  And I’m going to watch the Super Bowl with him.  (I’m not a sports person)  We’ll have fun.  Gluten Free pizza.  Possibly wings. Oh, and Ice Cream from a local Dairy.  (I won’t be having the ice cream, I’m not eating sugar right now, but it’s a great treat for Stuart. Perhaps I’ll put a candle in it.)

Please Don’t Judge Me

On By WendyIn Disability, Meniere's Disease6 Comments

This is something I read a long time ago that I have shared with friends and it seemed to help some understand this illness.  I don’t know who wrote it, I wish I did, I’d love to thank her or him.   (I recently found out…see comments, 9-5-2012….that Tina McDonald is the author of this essay….Thank you Tina for speaking for us!)

Please Don’t Judge Me

Author Unknown

Life with Meniere’s Disease : Before you judge me on one of my good days, you need to understand what one of my bad days is like.

Tinnitus – imagine having a headache caused by a fire alarm ringing or a bee buzzing in your ear continually for a long period of time. You can’t hear anything but that fire alarm or bee – It drowns everything else out.

Vertigo – Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off. Now imagine that with these two things, you’d be dumb enough to get on one of the super roller coasters that does loop-de-loops or the amusement park rides that spin in two different directions at the same time. I’m not that dumb, but unfortunately I have no choice in feeling these sensations.

During one of these vertigo attacks that can last from several minutes to several hours if not days. I can’t keep food or water down, I can’t walk, and in order to get out of bed to go to the bathroom, I have to crawl like a baby on my hands and knees. The movement makes me so ill, if I’m able to crawl back to bed, I’m covered in sweat from exhaustion. Otherwise, I keep a pillow and a blanket at the bottom of a linen closet in the bathroom so that I can pass out lying across the bathroom floor. I end up sleeping for days after one of these attacks, only getting out of bed to go to the bathroom or to get something to drink, if I think I can keep it down. I have to call my family to see what day it is when I wake up. That is, if I can hear.

You see, this disease while playing havoc with your balance and equilibrium, also reeks havoc with your hearing. It wouldn’t be so bad if the hearing loss was constant and predictable. But no, one day I can hear conversation fairly OK, and the next I can be virtually deaf, then the next day I can hear again. The hearing loss can fluctuate, but is usually progressive, and many with the disease end up severely hard-of-hearing or deaf.

Even on a daily basis, your mind is so confused by the signals it’s getting from your ears that your balance sucks. You run into things constantly because you can’t balance well enough to avoid walking into things, or your mind is telling you the object is a couple of inches from where it really is. I don’t know whether to laugh or cry when someone teases me about being such a klutz. I could make the Keystone Cops look graceful.

I also have days that my coordination just doesn’t seem to be together. I’m carrying something, and all of a sudden I drop it because my brain seems confused as to whether my hand is really attached to my body. I sometimes miss a step and fall because of the feeling that my legs are not quite part of me and I have to focus on them to realize they are there. Apparently this happens because the part of your brain that recognizes parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I’m not quite sure which), and you can lose coordination.

Ironically, the few high frequencies I don’t seem to have a hearing loss in can sound extremely loud, unbearably so. When a baby cries, an alarm goes off, or a microphone gives off feedback, I’d be willing to climb up a wall to get away if I thought I could make it. This symptom is called recruitment.

The disease also plays tricks on your vision. For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement. Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times. Your eyes tend not to be able to “track” movement at the same speed, giving you double vision, and a bad headache.

You can get confused easily and your memory and concentration aren’t reliable. It’s what some people with the disease refer to as “brain fog”. Many of them originally were afraid that they may have a brain tumor or Alzheimer’s because it can sometimes gets so bad. Finally they find either a doctor whose very knowledgeable regarding the symptoms, or they happen to ask someone else with the disease, and find that this too is a symptom of this blasted disease.

Now try to imagine living with this disease never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination, recruitment, disequilibrium, or “brain fog” is going to hit, or how bad it will be. At least with being drunk or riding an amusement park ride, you know what’s causing it, and you can make the choice not to do it again. With this disease, there’s very little warning if any for these attacks, you don’t know what’s causing it, and there’s no cure – only devices, surgeries, and some medications that can somewhat help alleviate the symptoms. And some of the surgeries are so radical, you think they came from a horror movie about a mad doctor. My ENT surgeon won’t even perform any more surgery on my left side, since I have the disease in both ears. He’s concerned about what would happen if my right side became worse than what my left side is now.

Understandably, anxiety and depression seem to go hand-in-hand with Meniere’s for many sufferers. We often ask how much worse can this disease get? For some strange reason, doctors aren’t very willing to give out worst case scenarios.

Now decide if you think I’d be able to do the same things you do on as punctual and regular schedule. For me, there’s no way. I’m being up front about my limitations. I try the best I can at living up to my full potential. Could you if you were in my shoes? They think now that Van Gogh suffered from this disease, and he cut off his own ear trying to escape it.

Yet on my not-so-bad days I may look like a totally healthy, able-bodied person. You ask me “why can’t you bend down – pick it up – lift it – drive – get a job – walk without a cane” It’s because I know these things can either bring on an attack – I couldn’t do them on a regular schedule because of the symptoms – or if I did do them, I could put myself and others in jeopardy if I should have an attack. You have to realize that with my friendship, love, dedication, and loyalty comes the fact that I can’t decide when I’m going to have a bad day, and the more stress I’m under, the more likely I will have a bad day.

So, please don’t judge me unless you’ve been in my shoes.”

(Of course, part of this is personal to this person’s situation, but it hits pretty darn close to mine.  I don’t walk with a cane, because I don’t feel like it helps.  I do find that a walker helps when I get dizzy.  It stays steady.  A cane just falls with me.  And of course, you all know that I do have some hope that things are going to get better because of fixing the CSF imbalance.  However,  It doesn’t look as if my right ear will regain it’s hearing and it looks like I will always have tinnitus in that ear too.  I’ll be very lucky if that’s the only symptoms that remain.)

I hope this little essay helps you in some way.  If you are a friend or family member of mine, perhaps it will help you understand me a little more.  If you are a fellow sufferer, perhaps it will help you in explaining things to others.

Recovering..a little slower this time.

On By WendyIn Meniere's Disease2 Comments

I was starting to get a little worried because I have been having some dizzy spells, and my hearing isn’t up to par.  Plus, I’m just really wiped out.

I knew Dr. Gray said to expect gradual improvements from these patches, instead of the instant improvement I had with the first patches, but I didn’t know how gradual.  Luckily, Dr. Gray called yesterday to check on me and she told Stuart it would take 7-10 days before I saw the same improvement I saw with the first patches.  (I thought it was kind of ironic that it may take 10 days before I see improvement this time, and last time I only had improvement for 10 days.)  I know it’s just coincidence , but I still thought it was kind of ironic.

So for now, still just resting.  Hardly any pain at all today, I feel like I’ve been getting over a pulled muscle.  Oh, and that cold I felt coming on…well, it doesn’t seem to be there any more.  I’ve been sniffling a little, and I’m very tired (but that could just be recovery, I think), that’s really it.

Yesterday I was so tired I got up around 10 or 10:30am, Stuart made me a lovely breakfast, and I was so tired that I laid down again by 12:30pm and didn’t wake up until 5pm!  I completely missed the only warm day we’ve had.

Stuart has been pampering me.  He’s been taking care of every meal.  Helping me with my every need, or want.  And we’ve been having the best time in the evening doing crossword puzzles.

Tonight, spaghetti and meatballs.  Yum.