Category: Meniere’s Disease

Shopping, Sleeping, and Heartburn

On By WendyIn Acid Reflex, Life, Meniere's DiseaseLeave a comment

Yesterday my husband had the day off because he has to work this Saturday.  It’s neat to have him all to myself on a day during the week, but it’s sad we won’t have Saturday.  So we decided to do some shopping!

Streets at Southpoint Mall, Durham, NC

 

The Christmas shopping sales started a little early this year.  We got a flyer from Macy’s and they had a Cuisinart Immersible Blender on sale for $18.99, I was excited because I really needed to replace mine.  I was also looking for a mini-slow cooker. One that’s only about 1.5 quarts, I found one at J.C. Penney for only $9.99!  What a great find.

We walked the huge halls of The Streets at Southpoint Mall for a couple of hours, checking prices, deciding on if we really needed something, and finally having lunch.  I was so tired.  But we had 2 more stops to make.  One at Target to see if they had a couple of things we needed, that trip proved fruitless.  And a stop at the hardware store to pick up a timer for my crock pot, so I can now leave it on when I leave the house and don’t have to worry about getting home to turn it off, and a couple of other things we needed around the house.   We got a call while we were in the hardware store and found out it would be a good time to go and pick up one of the Crock Pots I’m borrowing for Thanksgiving.

So off to pick up the Crock Pot….and a nice visit with our friends.  Including seeing their new baby.

By the time we got home I was exhausted.  My whole body hurt.  Especially my hip.  When I tried to sleep last night my hip hurt so much I just couldn’t sleep, even after taking Trazadone.  I also had to take a pain pill.  I hate taking all that medication.  Finally, I got to sleep, and it wasn’t really that late.

Just like me asleep with the dog and cat.

This morning I got up and ate some breakfast, but I felt so droggy.  I felt like I was still feeling the effects of the drugs I took the night before.  So I put some beans, BBQ sauce, and Chicken hot dogs in the new small cooker and I went back to bed, I did not want a repeat of the way I felt on Sunday.  I slept until about 3pm.

When I woke up, I felt much better, and the house smelled like someone was cooking. Of course, it was my slow cooker telling me I could eat any time I wanted.  I was surprised that it was pretty good.  There was a lot more liquid in the mixture than I put in, so I would have liked it more if it was thicker, but it was still good.  I ate my Beans and Dogs with my home-made Sauerkraut.  It was very good.  However, before I was even finished I was running to the bathroom, again.  Every day, it’s crazy.  I keep having to run to the bathroom from 1-5 times a day.  (3 today)

So later, I wanted something else to eat but I was afraid of eating anything too heavy.  Unfortunately, I’m out of bread and haven’t made any, and I’m also out of any plain crackers.  So my darling husband make me a few pancakes.  After eating I’ve had the worst heartburn.  I took Maalox, something I don’t like to do, I stretched, my husband patted me on the back, I burped a lot, but nothing seemed to help.  Finally, I ate a little apple sauce, and everything is calming down.

I read about an Acid/Alkaline diet a while back and the main part of it I didn’t really pay attention to, but I did decide to try some eating some of the foods that they have on the highest Alkaline list when my stomach starts to scream with too much acid, and acid reflux.  During the summer, this is easy because Watermelon is a very alkaline food, but now that it’s fall, I didn’t know what to eat.  So of course, I searched the handy-dandy internet (how did we ever get along without it?), and found that apples are also a highly alkaline food.  Not as alkaline as watermelon, but still pretty high.  And the pectin in applesauce is supposed to help with GI problems.  Maybe I should eat more applesauce, or perhaps I should make another apple crisp?  Ummmm, apples.

Ups and Downs of the Weekend

On By WendyIn Meniere's Disease2 Comments

Saturday was an ok day for me.  I had a bad attitude, but other than that, I was able to go out to lunch with my husband, and run some errands.  We even ordered our little Organic Turkey Breast from Earth Fare, for Thanksgiving.  I’m pretty proud of myself that I really think I can pull off having a Thanksgiving dinner without getting off the couch.  More about that in my next post.

Me and Sandy

Sunday, was not a good day.  I know it was because I couldn’t sleep Saturday night so I was all out of whack on Sunday, but knowing why, and having it happen, really doesn’t help that much does it?  I didn’t get to sleep until after 4:30am.  Then my dear dog woke me up around 11am.  She really doesn’t bother me much, she usually goes to Stuart for everything when I’m asleep because he will wake up and give her things, I often don’t even hear her.  However, I was sleeping a little too late for her, and she decided she had to check on me.  She cuddled up right at my face, she was so cute, but I really wasn’t awake enough to get up.  But I did anyway.  Straight to the couch.

My hubby made me breakfast, but I was still hungry.  But I was also very dizzy.  He said he was going upstairs to take a shower, so I decided to go upstairs too, just in case something happened he would be able to hear me.  I ended up crawling up the stairs, and hobbling to the bed with much help from Stuart.  I took a Valium and Phenergan.  After about 20mins, I still felt bad, so I used a Phenergan suppository too.

I was so sleepy, but every time I closed my eyes the world would start to spin.  Does anyone else ever have that happen when you are really tired?  I don’t feel well even with my eyes open, but at least the world isn’t going round and round, then as soon as I close my eyes I feel like everything is moving.  It’s hard….I’m so sleepy yet I’m afraid to close my eyes.

I was still hungry though, if I’m hungry my symptoms get worse.  So Stuart brought me half of a sweet potato.  It helped.  He then left to start grilling chicken.  I had left over Wild Rice Blend I’d made in the crock pot the day before, and I made a pot of black beans over night on Saturday night.  We also had broccoli we bought the day before.  It was starting to smell very good downstairs, but thankfully, I dozed off.  And slept for a couple of hours.

So, the great lunch my darling husband was making, became my dinner.  It was very good.  I was feeling much better, but I was still suffering from some pretty serious disequilibrium.

Today, the disequilibrium is still there, but I am hearing better out of my left ear than I have in months.  What’s up with that?  I even did without my amplifier when Stuart and I were having a chat over lunch.  That was nice.

My hearing is still pretty tinny, and it’s not picking up all frequencies just right, but I can understand what my husband is saying.  I love that.

I need an attitude adjustment.

On By WendyIn Meniere's Disease2 Comments
Confucius said...

I’ve noticed lately that I’ve had a very bad attitude about my life in general.  I’m not usually like that so I was trying to think about what may have changed.

I have been dealing with an unusually long Meniere’s attack.  Well, not an attack per se, I’m not having constant vertigo and throwing up, I don’t really know what to call it.  I think you would say I’m in an Acute mode.  My hearing is down, the full feeling and tinnitus is up, and I feel like at any minute I might start having vertigo.  I’m also having disequilibrium all the time.  You know that feeling where if you turn your head too fast, or look down,  the world moves a little all on its own, but it doesn’t keep moving like it does when you have full-blown rotational vertigo.

Yeah, that’s been happening, but it’s happened before.  What’s the biggest difference this time?

I have hope that it may end for good.  And I’m very, very scared about it.

When I had the endolymphatic “shunt” surgery, I had hope that the vertigo would end.  At least the vertigo being caused by my right ear.  But I knew I would still have to deal with a lot of other issues, and I also knew that often this surgery doesn’t last forever.  So, yes, hope, but not like this.

This time I think I may have a “cure”.  And as much as I’m trying not to believe, not to get my hopes up, it’s just not working.  Then I get so scared.  What if it doesn’t work?  What if nothing changes?  Yes, I will have the opportunity to have  the “shunt” surgery on my left ear, but it won’t be the same.  When I go through this procedure on November 24th, I’m expecting some kind of a miracle.  I’m not expecting to get all of my hearing back, I do expect to get some of it back, and I expect the loss the stabilize.   I’m not sure what I expect about the vertigo, but I have such hope.  And I half expect my migraines to be a thing of the past.

If this doesn’t happen I’m afraid I’m going to lose it.  I’m really afraid I will drop into a deep depression and hate the world for a while.  Already, due to the fear from all of this, I find myself mad a lot.  I have been re-evaluating my life and it has come up lacking.  So if this miracle doesn’t happen, how will I feel then?

I had accepted that I had Meniere’s Disease.  I accepted that it was not curable, that no one knew the cause, and I was disabled because of it.  Don’t get me wrong, I never stopped looking for answers.  I kept looking for anything that would change this, but I accepted that it may not change.

Now, I have hope.  And I’m afraid, it’s false hope.

I’m simply not too sure if I’m strong enough for the let down.

I need to remember, if this causes me to fall down, I simply have to get up again.

Even if this doesn’t work for me, I hope it will at least give the researchers more information where they will someday be able to help more people like me.

Let’s face it Meniere’s is a rare disease.  It is listed in the National Organization for Rare Disorders.  Rare diseases do not get the big research bucks.  There isn’t enough money to be made off of them.  Yes, it seems like there is a lot of research going on with Meniere’s right now, but the prosthesis they are making are not just for people with Meniere’s, it will be used to help people with countless other balance disorders.  Even the research that Dr. Gray is performing, it didn’t start as a search for a cause for Meniere’s.  She is finding out that an imbalance in Cerebral Spinal Fluid is the cause for a lot of problems.

I’m extremely grateful for this research, and I hope it will find a way to help more and more people with Meniere’s.  I was just having a little reality check there.

So, if things don’t get better after my procedure I may need a little hand holding, and possibly a swift kick in the pants to tell me to get up and dust myself off, I can make it anyway.

Thanks for listening.

More questions about CSF and Meniere's

On By WendyIn Meniere's Disease3 Comments

Courtney had some questions about my procedure and I thought I’d answer them here, just in case other people had the same questions.

I really don’t mind the questions, I’ll answer any that I can, and if I can’t I’ll try to find out the information from my doctors.

First, let me say that I am the first patient with Meniere’s that they’ve tried this on who has low spinal fluid pressure, but my doctor said that this is so new they don’t know if that is unusual or not.  Everyone else they’ve tested with Meniere’s had high spinal fluid pressure.
Getting the spinal fluid pressure regulated (in my case, getting the patch so I’ll stop leaking fluid) will hopefully get rid of all the icky symptoms including the Vertigo.  That’s the biggest hope.  It will possibly restore some of my hearing (this one I’m kind of expecting after the test, but I’m really trying not to get my hopes or expectations up at all).  However, it may not “restore” my hearing, it may just make it a little better and stabilize it enough where I can get hearing aids.  It also may stop my migraines.  (wouldn’t that be fantastic?)
Even if this doesn’t work for me, it doesn’t mean that it won’t work for other Meniere’s patients.  As I said, I’m a little strange because I have low pressure.  It has helped other Meniere’s patients.  However, this is very new.

Oh, she also asked me if it was just my hearing that improved during the test…No.  I was dizzy when I was lying there while she was performing the test, and I had a horrible headache.  The first thing I noticed was that my headache was gone, then I realized I wasn’t nauseous or dizzy any more.  Then I really noticed that I could hear everything that people were saying in the room.  It was still muffled, and my right ear was doing better than my left, but I could hear!  Dr. Gray was behind me and I had only been able to hear bits and pieces of words, then all of a sudden, I could hear every word she said.  (unless she whispered, which she did just to test, and play with me.)  Her assistant kept moving his mouth like he was talking and wasn’t really saying anything, just to pick on me.  I actually smacked him one time.  I was in a much better mood after the test.

If this doesn’t work for me, if for some reason they get in there and can’t find a leak, I don’t want that to discourage anyone of you who may be looking at this.  Dr. Gray told me of 2 remarkable cases she has worked on recently.  One lady had been deaf for over 18 months and on the table she began to hear again.  Another patient already had cochlear implants, and when they were finished she had to have her implants adjusted because she could actually hear better.  That was amazing to me.  I don’t know if either of these women had Meniere’s or not.  But I do know that the patients they’ve treated with Meniere’s so far have seen drastic improvement.  I also don’t know if the patients have had unilateral or bilateral Meniere’s.  I have a feeling it has probably been mostly unilateral, because I’m one of the less than 20% of Meniere’s patients who has bilateral, so I can’t imagine that they would have that many bilateral patients.  However, they may have been trying this on bilateral patients first.  I don’t know the answer to this, but I will ask Dr. Gray when I see her on the 24th.

I told Dr. Kaylie about my blog, and he jokingly said, “So, if this is a success we are going to have a lot of people calling us huh?”  I told him that I hope so.  : )

There is one thing you can really tell about both Dr. Kaylie and Dr. Gray, they get excited when they can find out the cause of something.  They care.  If they can find out what is causing our symptoms and help us, they will be so pleased.  When I had such a positive reaction to the increased spinal fluid that Dr. Gray gave me, she actually gave me a high-five.  She loves what she does, and she’s darn good at it, and she gets really excited when she finds a way to help someone.

OK, enough praise for my doctors.  If any of you are interested in this testing, I would say to get in touch with Duke.  Either Dr. Kaylie’s office, or Dr. Gray’s.  If you can’t come to Duke, they may be able to suggest a doctor in your area who could do the same testing.

Ear Doctor Apt. and exercise.

On By WendyIn Meniere's Disease8 Comments

 

cartoon courtesy of Joe Kohl

 

 

I saw Dr. Kaylie today.  He is such a nice doctor, he really listens, will joke around with you, and just has a great bed side manner.  It’s so refreshing after some of the doctor’s I’ve seen.  Here’s a link to a story about the Vestibular Testing that they do at Duke I thought you might find interesting, it also mentions a bit about Dr. Kaylie.  I went through all of the Vestibular testing except for the test where they run warm and cold water in your ears (I had tubes in my ears so that test wouldn’t have worked).

I had a few questions for him about the procedure I’ll be having on November 24th, (the Cerebral Spinal Fluid Patch), and I found out a few things that are different about my case.

I wanted to know how soon I should feel a difference after the patch.  He said if Dr. Gray “tops me off” with the artificial CSF I will feel immediate improvement.  However, even if she doesn’t our bodies are always making new CSF so I should feel improvement within hours of the procedure.  That’s exciting.  But I’m trying so hard not to get my hopes too high.  As he said, even if it will slow the vertigo, or get rid of it, and stop the hearing loss, that will be great.  Because if the hearing loss is halted or improved a little, I could get hearing aids since it wouldn’t be fluctuating any more.  The best we can hope for is, no more vertigo, hearing restored, and no more migraines.  But I am just hoping to stop the vertigo, and make it where I can hear again.

There are 2 things about my case that are different from other Meniere’s patients he has seen.  1- I developed bilateral Meniere’s almost 15 years after my first attack.  He said I’m the first person he’s ever seen that it has taken that long.  If a patient is going to get bilateral Meniere’s it usually happens within the first 5 years.  2- I’m the first Meniere’s patient that they’ve done the CFS pressure test on that has low pressure.  Of course, there haven’t been many yet, so he can’t say I’m an anomaly, but so far I’m different.

Usually, Meniere’s patients have high spinal fluid pressure, that can be treated with a drug.  It makes sense since Meniere’s is thought to be caused by too much fluid in the ear.

I asked him if I should stop taking the diuretic since I have low pressure and at first he said yes, then he said maybe we shouldn’t change too many things at one time.  I can understand that, we want to make sure my progress is because of the CFS patch and not something else.

Stuart asked Dr. Kaylie about my hearing voices when I’m having vertigo, and he said it’s not too unusual.  He said he has one patient who hears music, and not just little bits of music like I do, she hears a whole orchestra.  Unfortunately, she hears the same song most of the time.  Talk about having a song stuck in your head!  I bet you never thought you would hear of someone who could say that literally.  : )

I have decided that I should email Dr. Gray and ask her how I’m going to feel the day after this procedure.  It is Thanksgiving after all.  We are invited to friends’ house to celebrate, but I’m not sure if I’ll feel like the 30 minute drive, and then sitting around with people.  If not, I’ll whip up a nice Thanksgiving meal for Stuart and I the day before my procedure (I refuse to call it surgery), and we can eat it on Turkey day.

I am so proud of myself today!  First Stuart and I went to the little Mall near us on the way home from the clinic, and we had a nice little walk before eating a small dinner.  Then we went to Whole Foods – I found Coconut Secret’s Amino Acids.  This is a gluten free and soy free sauce that is a soy sauce substitute.  I can’t wait to try it!  I really think I’m having trouble with soy, but I just can’t stay away from Tamari.  I love stir fry’s and just soy sauce flavor in general.  This not only has no soy or gluten, it also has significantly less sodium.  I also found Bob’s Red Mill’s Gluten Free Quick Oats, I’ve tried their GF Rolled Oats before, but it just seemed to have too many hulls in it.  (I didn’t feel like the quality control was very good.)  I usually put those in the blender first for a little while before I use them.  (Oh, and the Quick Oats were cheaper than the Rolled Oats! Score!)

Mainly I’m proud of myself because I did more exercise than I’ve done in a long time.  I did about 20 reps of each of the following:

  • partial push-ups *this was very hard for me, I was surprised and embarrassed with myself.
  • outer leg lifts
  • inner leg lifts
  • bridge
  • clam shell
  • rear leg lifts (to help with  the glutes)
  • tricep curls

Then I did some yoga stretches.  In all I worked out for about 30 minutes.  I didn’t realize it was this long until I noticed a whole program of Cash Cab had come and gone and I missed reading any of the questions.  I didn’t do great with my diet today, but I was still running to the bathroom so much I was just happy to get something in me that didn’t hurt, and would stay in.

I think the hearing in my left ear is coming back a little, but often that is more annoying than when I can’t hear anything out of it.  It is so tinny sounding until it comes back more.  If I put the amplifier that I have in that ear, everything sounds high pitched and down in a barrel.  It’s horrible.  But wearing the amplifier in my right ear all day gets sore after a while.  So I just mute the TV and read the captions, or I get on the computer, or read.

What do you do when you can’t hear?

Do you feel awkward about other people?

Do you feel left out of things because of your disease?  Not necessarily because you aren’t invited to things, but because you feel like you can’t go.

 

More on Cerebrospinal Fluid leaks and Meniere’s

On By WendyIn Meniere's Disease2 Comments

After my last post I was asked a few questions about what this means and how it works.  I will admit that I don’t really understand everything about how decreases or increases in Cerebrospinal Fluid (CSF) affects Meniere’s but I think I can answer some of the questions.

Nicki asked:  “if they find the leak, could your hearing come back?” From my understanding, yes, at least part of it.  And it would stop deteriorating.

“what’s their theory behind all of this?” I found a pretty decent explination on Dizziness and Balanace.com “The hearing loss of CSF leak likely results from lowering of CSF pressure, which lowers perilymphatic (inner ear) pressure, and results in a picture similar to Meniere’s Disease.”  (Walsted et al., 1991)  My doctors also think that too much CSF could cause Meniere’s symptoms, that explains why a low salt diet and diuretics work for some people.  They may be the people who have just a little too much CSF.

“is this something they think would work for all meniere’s patients or just certain subsets?” I don’t know.  I will ask my doctors when I see them again.  Since there is still no known cause for Meniere’s there may be many different causes.    I’m sure a lot of doctors who would have checked my opening pressure would have said, “oh, you are in the normal range, so it can’t be this.”  This is one of my biggest complaints about most doctors, they believe everyone has the same “normal” range.

“could i think of anymore questions to ask you?” Probably, but I don’t know if I’d have the answers.  : )

Some of the information from the Dizziness and Balance.com site sounds like what my doctors have said, other parts do not.  They don’t mention that an increase in CSF can also cause these symptoms.  I know my ear doctor originally expected me to have higher spinal fluid pressure.  They think it may also be why shunt surgery works on some people, because they are displacing some of the CSF.

I had a freak accident when I was 28 years old, I was in a commercial kitchen at a nursing home and one of the huge exhaust fans had a blade break and it knocked the cover of the fan off and they hit me in the back of the head and neck, it actually fractured the C-7 vertebra.  Dr. Gray thinks this is probably where they will find my leak.  The first Meniere’s attack I can remember happened a little over a year after my accident.

I will see my otolaryngologist, Dr. Kaylie, on Monday.  I’ll see if he can explain things better to me.

A little good (lumbar puncture results) and a little bad (a very bad night).

On By WendyIn Meniere's Disease3 Comments
Dancers - painting by Wendy Holcombe

I thought about posting a picture of a lumbar puncture here, but it’s really kinda scary looking.  So I thought I’d just post a picture of something happy.  After all, the results were pretty amazing.

I went to Duke University Hospital’s Neuroradiology department yesterday and had a lumbar puncture to measure the opening pressure of my spinal fluid.  Dr. Gray does this with the help of a CT scan to make sure she is in just the right spot.  She also completely numbed the area so I didn’t really feel anything.  (Except the stinging from the numbing medicine, but it doesn’t last.)  The hardest part of this test for me is that I couldn’t talk and I couldn’t see what they were doing.  When I’m nervous I crack jokes and generally just talk a lot, so keeping quiet was not easy for me.  I’m so very grateful to Dr. Gray for allowing my husband to come back with me during the procedure.   He stayed right there and held my had the whole time, he really does doat on me during times like this.  (Thank you honey.)

The insertion of the needle doesn’t take very long at all, but it takes a long time to actually measure the opening pressure.  Before the procedure Dr. Gray told us that “normally” below 10 is low and above 20 is high, but she realizes that not everyone has the same “normal” reading.  So my opening pressure was 15!  Can you believe it?  How much more in the “normal” range could you get?  Luckily, Dr. Gray uses emperical evidence instead of just saying, ok, you’re normal when test read normal.  She decided to add a little artificial cerebral spinal fluid in to see what happened.  At first I didn’t really notice anything, I was concentrating so much on my back, I didn’t realize my headache was gone.  Then she kept talking to me and I realized I could actually hear her.  Not just a word here and there so I could figure out what she was saying, I could HEAR her!   More than that, I could hear her out of my right ear, the ear that I have severe hearing loss and haven’t been able to hear someone’s speech clearly in that ear for a very long time.  No, my hearing wasn’t perfect, it was still a little muffled, but I could hear.  I had been getting pretty dizzy during the procedure and it was gone.  How cool is that?

The results?  Dr. Gray says I am leaking spinal fluid and she needs to find it and patch it.  So I will be having a myelogram on November 24th.  They will insert a contrast dye in the fluid filled space around the spinal column.  Then I will have a CT scan and the leak should show up.  Dr. Gray will then patch the leak(s) with my own blood.  (I thought that was cool.)

I asked Dr. Gray, “What if you don’t find a leak?” She answered, “We will.”  She is a very up beat doctor who gets so excited when she discovers something.  She is making such a difference in so many people’s lives.  She told us about a couple of her patients, one had not been able to hear for over 18 months, during her procedure she started hear again.  She has taken the pain of migraines away from many patients.  She is a very open and caring person, you just can’t help but like her as soon as you meet her.

I stayed in recovery for an hour, got a little to drink and ate a banana.  Then I walked myself out.  On the way home we stopped and got something to eat.  My back really started hurting while we were sitting there, but as soon as I got up it helped, and when I got home and lay on the couch I felt much better.

 

Chilled Disequilibrium by Wendy Holcombe

 

Unfortunately, about 12:30am I woke up with the vertigo starting.  I took Valium, and Phenergan but everything just got worse.  I had the complete spinning fast rotational vertigo complete with some of the most violent vomiting I’ve ever had until about 4:30am.  At that time I simply collapsed from complete exhaustion.  (during all of this I had 3 Phenergan suppositories, the first was lost with diarrhea.)  I do not remember being that bad off since the time my husband called for an ambulance because I was scaring him so much.  He asked many times last night if I wanted to go to the hospital, but he had to agree with me that the last time I went they couldn’t do anything that we weren’t doing here.

Does anyone else hear unusual sounds during an attack?  I don’t mean just tinnitus (the roaring was so bad last night it was driving me insane).  But I hear things that sound like words off in a distance.  It’s most disconcerting.  Lately, with my tinnitus I’ve been hearing a tick.  When I’m trying to go to sleep at night I really notice it.  It’s not a rhythmic ticking sound, just once in a while I’ll hear something tick or click.  I’ve asked my husband if he can hear it and he can’t, I thought maybe I was just hearing a certain frequency when I couldn’t hear the others so I put in an ear plug and I could still hear it.  This new noise is most annoying, I’ll be almost asleep and then, Tick, and it startles me awake.

Today, I feel horrible.  I haven’t been out of bed, except for the many trips to the bathroom with diarrhea.  My stomach hurts so much every time I eat or drink anything.

Stuart talked to Dr. Gray today.  She is sure that this severe attack was caused because she made things better yesterday and now it is leaking out again.

I will be so happy when this is over.  I don’t know if she will find a leak, I hope so.  If she doesn’t, I’ll cross that bridge when I get to it.

Right now, this looks so very promising.   Of course, I will keep you informed.

It just amazes me at how much we have to search and search to find the right doctors.  I’ve seen so many doctors and, let’s face it, some of them shouldn’t be practicing medicine.  Many are just in it for the money.  Many get very uncomfortable when your symptoms are out of their comfort zone and they just drop you.  I’ve had a doctor who did that, he actually called me on the phone and said he couldn’t see how to help me and didn’t think I needed to come back.  No referral to a doctor he thought might be able to help, no option to for my medications, nothing.  Those are doctors who just don’t care about their patients.

You could also do a lot of research trying to find the right doctor, but then not have the resources to go and see him or her.  This really bothers me.  I wish there was some way I could help.

I feel very fortunate I finally found Dr. Kaylie, who sent me to see Dr. Gray.  These 2 doctors have given me hope that I haven’t had for a very long time, and they treat me like a person, I believe they really care about what they are doing and want to help people.   I’m also very lucky because I only live a few miles from Duke.  (I know I give Duke a lot of praise but I know, not all the doctors at Duke are as caring and through as these two are.  It was a doctor from Duke who dismissed me as a patient over the phone.)

 

 

Waiting…

On By WendyIn Meniere's Disease2 Comments

I get the Lumbar Puncture today at 3pm.  I’m nervous, a little excited, and getting hungry.

As I said, the procedure is at 3pm, they don’t normally sedate you for this procedure, but just in case they have to they don’t let you eat anything for at least 6 hours before the procedure time.  So I had a pretty big breakfast at 8:50am and I can’t eat anything else until after they are through with me.

I’m really not a good person without food.  I already have a headache, and I’ll get dizzy, my stomach will actually hurt, and I’m just not going to be a pleasant person to be around.  Right now I think I’ll go take a shower and then, I’m going to try to take a nap.  If I’m asleep, I won’t notice I’m hungry, right?

I’ll let you know how it goes.  I probably won’t find out the results until Monday when I see Dr. Kaylie.  It would be such a miracle if this is what is causing the Meniere’s.  I’m very grateful that I’m seeing a doctor who is working on finding a cause for Meniere’s.  It’s so exciting to be a part of this.  I’m trying so hard not to get my hopes up, but it is very hard not to.  After all the suffering that this disease causes, we all need a little hope.  If not this, then there will be something else.  I’ll keep on trying, and I know my doctors will too.

On another note.  I think I’ve figured out another trigger for my GI distress.  Anything with fat in it.  It seems that every time I eat meat I get sick.  The lower the fat in the meat, the less GI distress I have, but still.  I think it’s time to seriously look into becoming a vegetarian.  I’d like to go vegan at some point, but one step at a time.  I really like cheese, and eggs.  I don’t look forward to figuring out how to bake without eggs.  Maybe I’ll just do egg whites for a while, after all the yoke is where all the saturated fat is.  I already buy my eggs from a local farm where the chickens are allowed to roam and aren’t feed all that nasty stuff.  We are very lucky here in Durham, NC because there are a lot of local farmers who are very eco-conscious.  It’s easy to find local organic produce.   You can even tour the farms and on some you can go and work.  (you can literally work for food – haha)

I do have a hard time in the winter with local produce though.  I like winter squash and stuff, but long before spring, I am really missing the summer fruits and vegetables.  We lived in Palm Springs, California for a couple of years and it was just so nice in the winter you could go out and just pick lemons and oranges and limes right off the trees.  The streets were lined with fruit trees and they would be so heavy with fruit, when I would take my afternoon walk I would often just reach up and grab an orange to snack on along the way.  We had a lemon tree in out yard, I loved having fresh lemons to keep the house all fresh smelling and fresh lemonade!  (of course, summers there weren’t any fun at all)

If I could just spend the spring – fall here and the winter out west I think that would be ideal.  I must say, when we were in CA my Meniere’s didn’t give me near as many problems.  But who’s to say I wasn’t just having a good spell anyway?

Off I go on my little adventure for the day….

The Importance of Organ Donation

On By WendyIn Meniere's DiseaseLeave a comment

As you may have noticed I added a Social Vibe Badge to my blog.  If you participate through my blog you will be helping to educate people about organ and tissue donation.

I signed up to be an organ donor years ago.  Why?  That’s simple, there are many people who will not survive if they don’t receive a new organ.  If I die, and any of my organs are healthy enough to help a person survive, I think it would a miraculous thing.  All you have to do in most states is register when you get or renew your driver’s license.  Or you can go to Donate Life.net to find out more about organ donation and how to register in your state.

There is one thing that anyone with Meniere’s should consider donating.  Your Temporal Bone.

The following information comes from the  NIDCD (National Institute on Deafness and other Communication Disorders) National Temporal Bone Hearing and Balance Pathology Research Registry.

“Millions of people have a hearing or balance disorder. The Registry is a non-profit research organization seeking new knowledge to help such individuals. You can help to find new treatments and cures for ear problems by donating your ears (temporal bones) to scientific research.”  – 

“Millions of people are affected by hearing loss and other ear problems.  Research into the causes of these problems is difficult.  That’s because our hearing and balance organs are found deep within the skull, hidden and protected inside the temporal bones.  For researchers trying to learn about ear problems, it is not easy to examine these hidden organs directly in living people.  So, studying donated temporal bones after death is one of the best ways to learn about the causes of ear disorders, and to devise new treatments and cures.”

How had Temporal Bone Donation Helped with Meniere’s Research?

“People with Meniere’s disease suffer from bouts of dizziness, ringing in the ears, and hearing loss that comes and goes.  In studying temporal bones donated by people with Meniere’s disease, researchers found the condition was caused by an increase in the amount of fluid in the inner ear.  This knowledge has led to several medical and surgical approaches to relieve the symptoms of this disease.”

Donation of your temporal bone is easy.  You simply fill out a few forms and the Registry does the rest.  Please take the time to look into the possibility to donating your Temporal Bone.  Here’s the link to The NIDCD National Temporal Bone, Hearing and Balance Pathology Resource Registry, you can find out information about donation there, and you can find out about all the ways donating your Temporal Bone can help with the research of Hearing and Balance Disorders.

I haven’t filled out my paperwork to register to donate my Temporal Bone yet, but I vow to get this done by the end of the week.

Won’t you join me and help researchers find help for people with Hearing and Balance Disorders?  Sign the Registry to donate your Temporal Bone.

Also please consider signing up to donate needed organs when you no longer need them.  Go to Donate Life.net for more information, and read some very inspirational stories.

How I made it a better day.

On By WendyIn Meniere's Disease, Recipe, whole nutrition1 Comment

One of the things I do when I’m having a down day is create.  Sometimes I work on my artwork, other times, like today, I create in the kitchen.

Organic Kale from Durham's Farmer's Market

It all started with a bunch of Kale.  I decided I’d try my hand at Kale Chips.  I’ve heard so much about them but I’ve never tried any.

Simply tear the Kale into small pieces, and arrange them on a cookie sheet covered with parchment paper.  I then sprayed them with olive oil.  (I used one of my favorite products, Pampered Chef’s Spritzer)

Bake them at 350F for about 10 minutes.  You want them crisp, but not brown.   I found if I put a little bit larger pieces around the edges and smaller pieces in the middle of the sheet they get ready about the same timeSprinkle them with your flavoring of choice.  Many people just use salt, but you know I don’t eat much salt, so I used a mixture of Onion Powder, Garlic Powder, and a little of regular Mrs. Dash.  Even Stuart liked these, and he has an aversion to most things green.  : )

Then I decided to start a batch of Raw Sauerkraut.  I got the recipe from my new Whole Life Nutrition Cookbook.

It’s really very easy, and I hope it turns out.  I’ll let you know in a few days.

Here’s the mess I was making while getting the cabbage the way I wanted it.   You have to pound shredded cabbage and make the juice come out to make Sauerkraut.   I started doing this in a bowl, and decided this was just way to hard for me.  So I decided to try putting the plastic blade in my food processor and let it do some pounding for me.  Then I transferred it to my jar.

I used the mortar from my mortar and pestle to pound the cabbage down in the jar.

I was so surprised at how much liquid there was in this cabbage.

It only takes cabbage and a little salt to make sauerkraut.   I didn’t use as much salt as they called for in the recipe, I hope my cabbage ferments well and turns into some wonderful sauerkraut.

Then came time to fix dinner.  I had some chicken left over from cooking some Split Chicken Breasts with about 30 cloves of garlic in the slow cooker this weekend.   All I did there was oil my crock, then I put the breast in skin side down and threw in all the peeled cloves I got out of one big head of garlic.  Put the cooker on low for a little over 6 hours and that’s it.  The chicken just fell off the bone.

I decided to stir fry up some veggies with San-J Gluten Free Asian BBQ sauce.

I threw these plus some onion and garlic in a wok with the left over chicken and the San-J Gluten Free Asian BBQ Sauce.

We had this over brown rice.  I wasn’t very impressed the Asian BBQ Sauce.  It tasted like I had a stir fry with regular BBQ sauce on it.  It was ok, but it wasn’t the Asian flavor I was looking for.  I don’t think I’ll bother with this sauce again.

After a day of not only feeling creative but also productive, I feel much better than I did at the beginning of the day.

I was very lucky today that I was able to work in the kitchen.  When I have these feelings and I can’t get around enough to really work them out, it makes things much harder.  On those days, I try to write, or read.  Usually, even when I’m not able to walk, if I focus on something up close to me I can usually accomplish something.  Those are the days I’m so grateful I have a laptop, and that I love to read.

What do you do to help when you are having a bad day?