Tag: hearing loss

Gardening, Fostering Classes, Housework, Hearing Aids…a busy week.

On By WendyIn Chronic Illness, Life9 Comments

What a long title huh?

Boy am I busy this week.  Just think a couple of months ago I wouldn’t have thought about doing any of the things I’m doing lately.  (or planning to do…heck, I wouldn’t have made plans.)

So yesterday and today we started working in our little garden patch in the front of the house.  When it rains we have a river running through there so we had to be inventive.

Front Yard Garden, in progress.
Sandy walking through front garden.

I wish I had a before picture, then you would know just how much work we have done.  We decided to work with the water flow instead of against it.  We put some small pebbles to help the path of water, so it won’t tear up the garden, then sat potted herbs on top of the rocks.  (We still need 2 more pots to fill the area, but our local gardening center was out.)  The pots contain herbs, we have day lilies coming up from last year, and we put out wild flower seeds to fill in.  We’re also going to put a rock border around the front.  (We found a lot of cool rocks in the woods right behind our house!)

Tomorrow night we start fostering classes.  They will need to do a house visit to inspect where we live, so we need to get the house in order…and ready for a child.  We also need to sign up for CPR classes, including CPR for children.  And we each need to make appointments to bet a physical.  Lot’s to do, but totally worth it.

On Friday I’ll be getting my hearing aids.  How cool is that?  I just can’t wait to hear what I’ve been missing.  I wish I was getting them before we start our classes, I’m afraid I won’t be able to hear what’s going on.  Luckily, I’ll have Stuart there to help.

I’m still having too many headaches.  I do wish they would go away.  Perhaps the next time I see my neurologist she will be able to do more.  I’m also having more hip pain than usual, of course I’m doing more.  But that doesn’t mean I should be in pain all the time.

What is everyone else up to?

Thank you! and What’s up with Wendy?

On By WendyIn Diet, Dietary Fructose Intolerance, Fructose Malabsorption, Gluten-Free3 Comments

First I would like to thank all of my contributors to the Meniere’s Treatments Series.  I hope we all learned something (I know I did).  I’m also hoping that this series will help those who are going through all of this understand that they are not alone.  That not all treatments work for everyone, but there are many treatments out there and hopefully one will work for them.

Thank you to all who contributed, either through a guest post, or by commenting.  This could not have worked without all of you.

It’s been a while since I posted about what’s going on in my life.  So, on at the risk of boring you, here it is:

NOT Gluten Free!

The biggest thing that is consuming my mind today is the trial against Paul Seelig.  The man who is accused of selling bread as gluten free when in fact is wasn’t.   I have to testify against him on Thursday.  This is just so hard.  I don’t want to see this man again.  I don’t want to relive what he put me through.  I read a post on Facebook by a woman who was at the trial yesterday.  They were selecting the jury.  She said that he kept chuckling.  What could possibly be so dang funny?  She also said that many potential jurors said they couldn’t be impartial because what he did was so horrible.  Hmmm, what about innocent until proven guilty.  I mean I know he’s guilty because I was there, but if I wasn’t I don’t think I could say that.

Of course, that is what I said the whole time all of this was going on.  People were saying they were getting sick from the gluten free bread this man was selling, heck I was sick.  But there was only a few people, and I thought I was sick from Meniere’s.  I felt that people were publishing things on their blogs about his selling bread as gluten free before they really had any proof.  Plus, he kept telling me that he was setting up a time for me to come in to his bakery and be there when he had testing done, so I could witness it.  He even applied with the Gluten Intolerance Group to have his facility certified gluten free.  I kept thinking, why would he do this if his products were in fact not gluten free.

However, even if he was guilty (as I now know he is) I felt that it was irresponsible for people to be publishing this without proof.  And I didn’t feel like a home gluten test was enough.  After all, we wouldn’t know if it was cross contaminated or not.

But the sad fact is, I believed him. He told me that he sold to the government and to hospitals.  He said he only sold to the public because he wanted people to be able to have good gluten free bread.

I look back at the emails we wrote to each other and I feel so very stupid.  Why did I believe this guy?  I think I just couldn’t believe that anyone would purposefully contaminate people.  And how could he be so stupid that he didn’t think he would get caught?  He was making people sick, did he think they wouldn’t eventually put it together?  I fell so betrayed.  He must really have been thrilled to have had someone who was so gullible on his side.

Ok, enough about that.  I’ll let you know how it goes after I testify, and then after the trial is over.

making a mold of my ear for my hearing aids

I have some good news.  I was fitted for hearing aids last week.  I will be getting them on the 8th.  I’m very excited.  Think of all the things I’ll be able to hear, that I can’t hear now.  hehehe.

The fructose intolerance diet is going well.  I saw the nutritionist on the 23rd.  She put me on a pretty strict fructose elimination diet for 4-6 weeks.  Then after my body starts absorbing nutrition again, I can try to add in new foods and see how I do.  Right now, I’m doing so much better.  No GI upset.  I did have a little of one thing on my NO list, and I got so bloated, and gassy.  Then within an hour I had a horrible migraine.  I’m really hoping that once I get this food intolerance under control I will stop having so many migraines.  (one can hope right?)  According to our scales, it looks like I’ve lost about 2 pounds this week.  Oh, I forgot to mention, the nutritionist told me I’m not eating enough.  I’ve been trying to eat more calories since I saw her, but it’s really hard for me.

I joined Spark People, an online weight loss community, so I could log everything I eat and keep up with my symptoms and my calories.  If you happen to be over there, look me up, my username is ONEARTSYCHICK.

One more piece of news.  Stuart and I are starting classes on April 5th, to become Foster Parents.  I may need a lot of advise from you who have children.  Wish us luck!

As you can probably tell, the patches are still holding, and I’m not having any vertigo, and the disequilibrium is gone.  Hearing is stable.

My hip is bothering me much more.  I’m sure it’s because I’ve been doing more.  But it’s a real pain….literally.  I’m also having more trouble with the pelvic pain, I’m sure that’s because I’ve been feeling a little more amorous lately, since the world stopped spinning.  However, just because I know why these things are bothering me more doesn’t mean it should be that way.  I should be able to walk and not hurt, or have sex without pain.  One thing at a time.  Perhaps I will get there.

What’s going on with you these days?

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.

Movie Date

On By WendyIn Life, Meniere's Disease7 Comments

I’m so excited.  My husband tool me to see a movie today, and I started crying while we were sitting there, I was over whelmed with the fact that I was watching a movie in a theater without closed captioning!  I could hear every word.  In fact, I thought it was a bit too loud.

It’s been so long since I dared go to a movie.  I realized the other day that I didn’t need to “read” the TV show I was watching and was so tickled.  So today when my husband asked if I wanted to go see Gnomeo and Juliet, I said, sure.  But I was nervous.  I hated the thought that we might get in the theater and then I wouldn’t be able to hear the film, what a waste of money.  No worries though, I heard every word.  Yay!  My left ear is doing great!  I still can’t hear much in my right ear, but I can handle that.  Heck, I just wanted the vertigo to stop, so I’m super excited!

One thought though.  I can’t remember the last time I went to a movie that the person behind me didn’t keep kicking my seat.  What’s up with that?

By the way.  The movie was very cute.  I have always been a fan of Shakespeare, and there are little things that allude to him and his plays.  They even have a Shakespeare statue that talks.  (voice by Patrick Stewart, how cool is that?)   I also enjoyed the music, mostly old Elton John songs with the words slightly changed to fit the movie.

Seen any good movies lately?

Here we go again.

On By WendyIn Meniere's Disease1 Comment

Still can’t hear.  It’s so much worse now that the Meniere’s is in both of my ears.  Since I can’t ever hear out of my right ear when my left ear is having problems I am at a major disadvantage.  I’m trying very hard not go get frustrated, but I get so tired of saying, “What?” and “I’m sorry, but I can’t hear you.”  I have to admit I often let my frustrations out on my husband, he will talk to me and I just yell at him that I can’t hear him.  It’s not his fault, just two days ago I could hear him.  I just get so frustrated.  I’m trying to get better.

We went to the mall today to pick up some dog food from a non-profit store that we like to give business.  This mall is a good ways away from our house, but I think it’s worth.  Normally.  When we got there we decided to walk around for a while and get something to drink, do some window shopping.  I have a huge weakness for shoes and just had to look.  We are trying not to buy anything new right now, so I was just looking, however I was being mighty tempted.  I tried on a pair of shoes, really I wasn’t going to buy them, usually when I try on a pair I change my mind….and I did.  However, when I went to put the shoes back I had one of those “Oh shit, the world just moved much more than I did.” moments.  I immediately took some Valium and Phenergan and decided it was time to leave.  I did start to feel better on the way home but was in no way stable.

After we got home I hit the couch, and I’m still here.  I went to the bathroom and things went a little merry go roundish again.  So, I took some more meds and just had a Phenergan suppository too.  I’ve also had a horrible headache today.  I took a Maxalt (a migraine abortive) a little while ago, it eased it but didn’t take it away.  I’m afraid to take a pain pill, I’m afraid I’ll get dizzy since I’ve already taken 2 Valium.

I thought about taking the Diamox, the medication Dr. Gray gave me if my pressure went too high, but last time I took that it made things worse and I had horrible side effects from it.  I don’t want that to happen again.

Thank you all for the encouragement.  I do want to let you all know, I’m really not that stressed about this.  I’m not afraid of an attack coming on.  If it does it does.  I am afraid I’ve gone through all of this for nothing.  I am afraid I will have to suffer through the attacks and feeling awful for months before they will do anything else.  I wonder sometimes if I shouldn’t have just gone ahead and gotten the surgery on my left ear like I did my right.  At least it helped the vertigo.  But then I think.  How else would they learn if not for people like me, taking the chance to risk a different type of treatment?  It may not work for me, but it has worked for others.  And who knows it is still too early to tell, it may work for me too, it may just take a bit more tweaking.

On top of this I think my kidney stone my be moving.  My left side is hurting, just where the doctor told me it would, and I keep feeling like I’m going to explode if I don’t pee, but when I go in there I just get a few drops.  Hopefully, it will just settle back down and won’t decide to come out right now.  I really don’t need to deal with that right now.

Well, I’m really tired now and think I will rest some more.  Perhaps even just go to sleep.

I mainly just wanted to vent a little, and let everyone know I’m OK.   Thank you all for all the well wishes.

(My thinking is a little muddled right now, so I apologize if this post isn’t up to par.  Please forgive grammatical and spelling errors, or rambling.

Feeling Better

On By WendyIn Medical Tests, Meniere's Disease6 Comments

 

Happy as a Monkey (I did this painting for a friend's nursery.)

It’s been 12 days since the Cerebral Spinal Fluid Patches, and I am feeling better.

 

I still feel better in the mornings, and then fade in the afternoon.  By the evening I often just feel a bit icky.  Kind of off kilter.  (you know, a little off-balance, not much, a little nauseous…)  However, over all, I do feel much better as far as the Meniere’s is concerned.  Not so much with my GI stuff, and my hip pain, but that is a story for another day.

Stuart talked to Dr. Gray a couple of days ago and he told her how I felt so much better in the mornings, then as the day goes on I start to feel worse again.  She said that is a sign of low pressure.  She suggested I come in and have her patch the last leak.  They didn’t patch them all because they were afraid they would spike my pressure, and/or cause it to raise and stay too high.  We decided to wait a few more days to see how I’m doing.  I’m thinking I should probably stop taking Topamax all together (after discussing it with Dr. Gray) before I go in to have the last patch.  Topamax is used to help control migraines, and it also treats bi-polar disorder, however, it can also be used to lower your spinal fluid pressure.  Since I’m taking a small dose every day, I think it’d probably be a good idea to get off of it if I already have low pressure.   : )  Then we will see if I still need to go in for the last patch.

How much better do I feel?

  • I haven’t taken any Valium or Phenergan in days.
  • The dizziness and feeling of being off-balance (disequilibrium) is minimized.  In the mornings I don’t feel it at all.
  • No headaches.  (well, I had a little one today, but I think it’s because I didn’t sleep well last night.  No migraines though!!)
  • Hearing is staying pretty steady in my left ear, I can hear pretty good out of it, but some frequencies are dull.  My right ear is still pretty gone, but in the evenings the tinnitus is much worse in that ear.

So what do you think?  Sounding good so far?

I learned from my last experience with the blood patch that I don’t want to jump the gun and think I’m ok before I have a long while feeling that way.  I’ve been conversing with another patient of Dr. Kaylie and Dr. Gray.  She has high pressure (and she doesn’t have Meniere’s she has another vestibular disorder).  She felt “normal” for over 2 months then the meds stopped working and her symptoms started to return.  It was so hard for me after just 10 days of feeling normal to go back to having the symptoms again, I can’t imagine how she must have felt after 2 months!  She is still being treated, and there is hope she will get back to that “normal” state too.  Just as we are hoping I will.

This time I’m looking at things differently.  Before, I looked at this as a possible cure.  I don’t know if I want to think of it that way.  That would mean that it couldn’t come back, and we have seen that it can.  I have finally come to accept this disease as a part of me, that I have to live with for the rest of my life.  I will always look for the best way to deal with it, and right now I think this treatment is it, for me.  However, I know that the Meniere’s is still there.  If something gets off-balance again, it will all come back.  One of my lovely readers advised me to not fight it so hard, but walk with this disease and accept it.  I’ve taken her advice.  It will never be my friend, but it will always be a part of me, and I can deal with that (at least I’m learning to).  It has made things much easier since I started thinking this way.

Another thing I’ve been thinking about a lot lately.   Friends.   I feel like I’ve lost touch with so many of my friends since I started getting really sick.  (I say really sick, because I’ve been sick for a long time, but I was functional.  This past 2 years have been much harder.)  I was taking that very hard.  But I really needed to look at it and realize, that most of it had nothing to do with me.  Most of my friends also had children over the past 2 years.  I can’t drive, and their lives are so busy with their new families they just don’t have the time to make for me.  And that’s ok.  I’m still here.  You know, even if it is because they don’t want to be around a sick person, that’s ok too.  I’m not going to take it personally.

I decided I’ve had some really great friends in my past, and I love them and want the best for them.  We may not be in touch as much right now, that’s ok.  We may be more in touch in the future and that would be great, if not, then it wasn’t meant to be.  I will still love and cherish the time we spent together.  I know there will be new people in my life, and in theirs.  We grow, sometimes we grow apart, sometimes we grow together.   Sometimes we simply grow up.  I think I’m doing a lot of that right now.  (at 47, you would think I was all grown up….but I’m learning new things all the time, especially about myself.  And heck, I don’t think I’ll ever see myself as a “grown-up”. *shudder*)

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.

small update and Sauerkraut recipe

On By WendyIn Gluten-Free, Medical Tests, Meniere's Disease, Recipe, whole nutrition1 Comment

I have an appointment with Dr. Gray on January 28th at noon.

I don’t know why all of a sudden they were able to get me in sooner, but I’m glad.

We’ll find out what’s going on with the Cerebral Spinal Fluid Pressure.  Hopefully, she will be able to get something straight.  Even leveling things out a little would help a lot.  3-4 attacks a week are driving me crazy.  (as you all know.)

On a side note.  I made Sauerkraut today….well I started the making of Sauerkraut today.  I thought I had pictures of it from the last time I made it but I can’t find them.  : (  So I didn’t take any today.  But I will tell you what I did.  It is so easy!!  (especially if you have a food processor) *this recipe was inspired by the recipe for Raw Sauerkraut in the Whole Life Nutrition Cookbook.

Sauerkraut

  • 1 head of Cabbage
  • 1 – 2 Tablespoons of Sea Salt (I use 1, but the original recipe called for 2)

Peel off a few of the out leaves of the cabbage head.  Save these you will use them later.  Chop the head into small enough pieces to fit in your food processor. (be sure to remove and discard the stalk. I really like the center of the stalk, I always just gobble it up.)

Slice up the cabbage in your food processor with your slicing blade. (if you don’t have a food processor you can do this by hand, but it will take a while, you have to cut it up really small.)  Transfer the cabbage to a bowl and toss with the salt.

Here’s the really hard part if you don’t have a food processor.  Remove the slicing blade from the food processor and put in your little plastic blade.  Return cabbage to food processor in small batches just smashing it up and making it all juicy.  (if you don’t have a food processor you need to just keep smashing he cabbage with a mallet until you get a lot of the juice out.  Of course, this is a great way to get your frustrations out.)

Just spoon your juicy cabbage into a clean jar, and cover with those outer leaves you saved from the beginning.  Press the mixture down so the is some juice covering the leaves.  This won’t be hard.  Keep in a dark dry place for 3-7 days, I like to keep mine in my pantry.  (I do put the lid on the jar, but I don’t tighten it.)  Every day you need to press it down some more so even more juice will cover those leaves.  (eventually the leaves will start to just fall apart, don’t worry about it.)  The original recipe says to start tasting it after about 3 days, mine tastes nasty that soon.  Just smell it, if it smell like sauerkraut, then taste it.  If it taste like you like, then put it in the refrigerator the slow/stop the fermentation process.  If you get a funky scum on the top of your sauerkraut, just spoon it off.

I use a wooden pestle from a mortar and pestle that I have to press my mixture down every day.  Since I don’t use this mortar and pestle any more, I use it exclusively for this, now it smells like pickles.  : )  If you used a pestle made from a different material, or perhaps a mallet, you probably wouldn’t have this problem.

They do make crocks just for making sauerkraut, and I’ve seen much more complicated recipes, but I’ve never tasted better sauerkraut.

I may make it a different way some time, I may even get a fermenting crock so I can make more than one head of cabbage at a time.  But for now, this method does well for me, I just start a new jar before the one in the fridge gets empty.

(If I find those pictures, I’ll post one.  Maybe I will take a picture of the jar I have started at least so you can see what it looks like.)

Tomorrow may be hell, but today was a good day.

On By WendyIn Disability, Gluten-Free, Life, Meniere's Disease2 Comments

I woke up this morning and I heard water dripping.

Most people wouldn’t think anything about that, most people may even be annoyed by that, I thought is was great!  The great thing about it was I HEARD water dripping.  At that moment, I knew it was going to be a good day!

I looked at the clock and realized I slept 8 1/2 hours without waking up (well if I did wake up I don’t remember, so it doesn’t count.)  I turned over and went, Ouch! My head hurts.  I was not going to let that get me down, so I started to think about what I wanted for breakfast.  I knew we went to the Farmer’s Market yesterday and got a box of veggies, including spinach, oh, and there are some wonderful green onions in there….I can do something with that.  (But, dang my head hurts.)

I cuddled up with Stuart and asked if he would like a wonderful breakfast and he said, “we only have one egg, how do you feel today.”  “Much better thank you, but my head really hurts.”  He replied, “Well, then I’ll run get your medicine and pick up some eggs and be back in about 45 minutes and we can have breakfast.”  Oh, how I do so love my husband.  About that time, the cat pounced on me to say hello, then Sandy dog runs in after Stuart has finished feeding her and letting her out for her morning business (yes, he is wonderful)…and I am surrounded by love.  What more could you ask for on a Sunday morning?

So, I play with my “children” for a while, and then get dressed and come downstairs to have everything ready for the eggs (and the potatoes I decided to have him buy) when he got home.  And this is what I made for breakfast:

Scrambled Eggs with Spinach and Green onions with Hash Browns

After seeing the picture it really doesn’t look quite as appetizing as it tasted.  However, I was so thrilled with breakfast, it was one of the most tasty meals I’ve had in a very long time.  (perhaps I shouldn’t say that about my own cooking, but oh my goodness, it was good.)

Today we also went to Home Depot and looked and Tile Saws.  Yes, that really is exciting.  There is an art project that I really want to get started in, and I need a tile saw.  If you read this blog, or know me personally, then you know I like to recycle things.  I saw the most beautiful set of glasses made from wine bottles, and I thought, “What a wonderful idea, I’d really like to do that.”  Well, cutting wine bottles, is not as easy as you would think, especially if you want to have them match, and you want to be able to drink out of them.  So after much research, I think I’m finally ready to get started.  (Luckily, one of my dear friends is a member in a Wine Club, so I have a good resource for wine bottles, and I don’t even have to drink.)  If this works, I plan to talk to a few bars in town and see if they will save their wine bottles for me too, so I can have an even bigger supply.  I plan on making beautiful glasses from wine bottles and hand etch designs on them to make them even more unique. (what do you think?)

We also went to Weaver Street Market today.  (It’s a local co-op, and I can find local, pasture raised meats and eggs there.)  For some reason I’ve been craving beef.  A nice juicy steak.  So we bought steaks.  We also found Stew Beef on sale…so you know what we will be having later this week.  Oh, and we found a delightful Hoop Cheese on sale.  They let me taste this cheese, and it has a mild taste, a bit like a medium cheddar.  I was so pleased to find a local cheese that I really like.  (We have really become locavores.)  We do try to support our local farmers, and we try to eat organic and ethically.  It’s a challenge, but we think it’s worth it.

I’ll be posting the recipe for dinner tonight on Wendy Cooks.  But here’s a picture:

Petite Sirloin, Sautéed Italian Broccoli Greens with Baby Turnips and Carrots

I do so love to cook.  I sing, or hum the whole time I’m cooking, I dance around the kitchen.  It’s just so much fun to create something that brings such joy to my husband (and sometimes other people), and I have to admit I really like to eat good food too.  It’s also fun, to create something really tasty that is nutritious.  One of the most fun things for me to do is to say, “OK, I have these ingredients, what can I make?”  And actually come up with something that people like.  That used to scare me to death, now I think it’s so much fun.  Isn’t it funny how life changes?

I have a phone consultation on Wednesday with a nutritionist to see if we think she can help me with my issues.  (Let’s keep our fingers crossed.)

Tonight, I have a movie date night with my husband.  We’re just going to watch a movie on Netflix, but I can watch a movie on Netflix with my husband tonight because I can HEAR it.  What a treat!

**One big side note.  I realized something yesterday.  I think I know something else that may have majorly attributed to my depression day before yesterday.  I started having really bad cramps yesterday.  I feel like I’m trying to have my period.  This would explain the extreme moods, and my headaches.  At 47 and a half, I’m peri-menopausal.  I’ve found that my hormonal symptoms have gotten much worse since I’ve started skipping periods, and then having heavier periods sometimes.  Hot Flashes, Night Sweats.  (more night sweats than hot flashes.)  The moods are much more unpredictable.  (poor Stuart.)**  Just a thought.

Meniere’s and Menopause…what a combination.

Accomplishments

On By WendyIn Life, Medical Tests, Meniere's Disease1 Comment
Sandy out in the snow.

The last couple of days have been filled with accomplishments.

  1. The biggest one first. Yesterday I didn’t have to take Valium or Phenergan all day long.  (I did take it once today, but only once, I’m not positive I needed them, but I was starting to feel a little dizzy and better safe than sorry.)  That’s a huge improvement.
  2. I made dinner last night.  To read all about what I made, check out my blog post on Wendy Cooks.  (a little teaser here: it includes Acorn Squash and wild rice.)
  3. I cleaned up the kitchen today.
  4. I completed messed up the kitchen again today.
  5. I made experimented with dinner again, and made something that I was very pleased with.  I will post about it on Wendy Cooks tomorrow.  (Yes, I made Pesto out of Kale! can you believe?  I served it over penne pasta and grilled chicken…you must see the photos, I promise I will post them tomorrow.)
  6. Stuart talked to Dr. Gray today, and she is setting up an appointment for me to come and have another lumbar puncture (also known as a spinal tap.)  She mentioned that my pressure may still be a little high, but the Diamox is just too strong and they might put me on Topamax instead.  Stuart mentioned that my psychiatrist just put me on Topamax, and she thought it was interesting that within the past few days I’ve started feeling better.  They are now taking me off of the diuretic that I’ve been on from Dr. Kaylie.  (I feel like such a trial and error patient….let’s see if this works…nope? well how about this?…a little…well how about this….)  I guess we’ll see what the lumbar puncture says.

When I look at my little list it doesn’t look like I really got all that much accomplished, but I really do feel like I got a lot done.  I didn’t have to lie still on the couch pumping in drugs praying not to throw up.  I even let the dog out a few times and didn’t have to call Stuart down from work to do it.

Oh, and we had another winter storm here last night.

This winter has been very unusual here in Durham, NC.  It’s never this white.