Tag: Meniere’s Disease

Treatments for Meniere’s Part 2 – Medication

On By WendyIn Meniere's Disease7 Comments
image from zazzle.com

Treatment with Medicine – I’ve tried both Antiviral and Immuno-suppressant drugs, neither of them worked for me.  The thought behind these treatments?  Some doctors believe that there could be a link between Meniere’s and the Herpes Virus, or that it is an auto-immune disease.  I don’t know if either of these are true, but some people get relief from these treatments.

Other drugs I’ve been on: Antivert or Meclizine (meclizine hydrocloride)- this is a vestibular sedative, it is prescribed to help with the dizziness.  (I think it rather ironic that one of the side effects from this medication can be dizziness.)  This worked for a while, when I was having slight dizziness, but it didn’t help stop the vertigo.  As my symptoms progressed I was put on Valium (diazapam), this is another vestibular sedative.  I had much more success with this drug at preventing the vertigo.  However, I had to take more than was recommended to help stave off an attack.  Another drug that has been very beneficial to me has been Phenergan.  This is an anti-nausea drug that is also a vestibular sedative.  I had it in pill form and suppository.  If I start to feel dizzy I immediately take a Valium and a Phenergan, sometimes that’s all I’d need.  Other times, I would continue to feel bad, like an attack was imminent, and I would need more.  I would then take another Valium and a Phenergan suppository.  I don’t know if it’s just me or not, but often I would feel like I desperately needed to go to the bathroom and the first suppository would come right out.  I would then use another and often that would do the trick and an attack would be averted.

However, sometimes I would have an attack no matter how much I tried to avoid it.

I’ve also been on a diuretic.  I know I’ve been on more than one, but the last one I was on was Dyazide (hydrochlorothiazide and triamterene).  The thought behind this treatment is the same as with a Low Salt Diet.  It is used to reduce bodily fluids especially the fluid in the endolymphatic area.

As with the low salt diet, I’m not sure if this worked or not for me.  I was always afraid to stop either the low salt diet or the diuretic for feat that my symptoms would increase.  I was taken off of the diuretic after my latest treatment  (the Cerebral Spinal Fluid treatment), and my symptoms have been under control.

Not really Medicine, but thought I’d include Supplements – I’ve tried many supplements that promised help with tinnitus and Meniere’s.  I didn’t find any help from these.  However, some patients swear by them.   (Dr. Kaylie said there were no scientific evidence that any supplement actually helped, but if some people found relief he was all for it.)

For even more information on these therapies and other treatments for Meniere’s go to Meniere’s Info.com.

Please leave a comment telling what Medication Therapy you have tried, and how it has helped, or hasn’t.  If you have a blog, be sure to leave that address so others can read about your experiences.

Next Post: Treatments for Meniere’s Part 3 – Endolymphatic Surgery

Treatments for Meniere’s Part 1- Diet

On By WendyIn Meniere's Disease4 Comments

In the next few posts I’m going to focus on some of the many treatments for Meniere’s and direct you different personal blogs for people who have tried these treatments so you can go and read how they have worked with other people.

Remember, different treatments for different people.  Treatments that work (or don’t work) for some people, may not work (or work) for others.  The important thing is that there are many options to help control our symptoms, and there are new options being developed.  Don’t give up hope.  I almost did and it nearly killed me.  There is a big difference in accepting that we have this illness and giving up hope that something may help.

Of course the first treatments I should talk about are the treatments I have undergone.

image from newsformyhealth.com

Change your Diet – Normally, when you are first diagnosed with Meniere’s you are put on a Low Sodium diet.  I’ve heard differing opinions as to how much sodium is enough without getting too much.  At first I was told to keep my sodium intake at about 2,000 mg per day (1 teaspoon), then it was lowered to 1,000 a day, then I was told that wasn’t enough and I should shoot for 1,500.  You should discuss with your doctor about a recommendation for you.  The theory behind this treatment is that we have too much fluid in the endolymphatic system, and staying on a low sodium diet should reduce this fluid.  This seems to work for many people.  Even if it doesn’t totally relieve their symptoms, it helps, and I’ve heard many people say that when they have eaten too much salt their symptoms gets worse.  How did this work for me?  I continued to have attacks despite how little sodium I ate.  I really didn’t see a difference for me.  I don’t think a lot of sodium is good for anyone and I still don’t eat a lot of salt.  I’ve gotten so used to not eating salt I really enjoy the taste of the food I’m eating without salting it.  My total sodium consumption per day is normally between 1000mg and 1500mg.

I was also told to avoid alcohol and keep caffeine consumption to a minimum.  I found that alcohol in a trigger.  I can have a glass of wine now and then, but that’s about it.  If I consume too much alcohol, for me that means a couple of drinks, then I get dizzy and that can trigger a vertigo attack.  I don’t consume much caffeine at all.  I will have the occasional small piece of Dark Chocolate, and I may drink one drink with caffeine in it once a week or less.  I don’t feel great when I consume too much caffeine, but I’ve never felt like it triggered my Meniere’s.

Some people have a hard time with too much sugar, chocolate, nicotine…

I don’t eat a lot of sugar, if I do have too much I find that I get very jittery and can get dizzy.   I love a good little piece of Dark Chocolate.  I only have a small amount when I eat chocolate, usually less than an ounce.  It doesn’t seem to cause me any problems.  However, Milk Chocolate has too much sugar and I can only have it in very small quantities.

I’ve never smoked, so nicotine isn’t a factor for me.  However, I have problems being around cigarette smoke.

Avoid triggers – I know this isn’t necessarily diet, but it could be if you are allergic, or intolerant to different foods.  Different people have different triggers.  Some people have food allergies and they can be a trigger.  I have a wheat allergy and can’t tolerate gluten at all, so I have cut that out of my diet.  This did improve my symptoms.  Especially the brain fog.

I also have asthma, but it isn’t bad.  However, if I am around strong scents (like perfume, cigarette smoke, or gasoline, among others) I will have an asthma attack.  I have found this to be a trigger for me, so I try to stay away from strong scents.

Many people who have allergies find that they will increase their symptoms.  I suffer from allergies (grass, some trees, dust…).  Whenever my allergies are acting up, my Meniere’s symptoms get worse.

Stress – Stress is often a trigger for Meniere’s patients.  I think stress can be a trigger for me, but I’m not sure.  Sometimes when I had increased stress I would have an attack, other times I wouldn’t.  I think stress is hard on anyone for many reasons, not just Meniere’s, so I suggest you try to reduce your stress as much as possible.

Again, this is just my experience.  Everyone is different.  You can read more about treatments for Meniere’s on Meniere’s Info.com.

Next post: Treatment of Meniere’s Part 2 – Medication

Please comment on your experience with changing your diet.  Have you tried this?  Did it help?  Did your doctor tell you something different?


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?

Feeling Better and Worse

On By WendyIn Hip pain, Life, Meniere's Disease8 Comments
The Dance, by Wendy Holcombe

Great News, the Meniere’s is still staying calm!  Virtually no symptoms!  Yes, I feel like Dancing!!  Since I’ve been feeling better I’ve been doing much more.  On Saturday we went to the new outlet mall that recently opened not too far from us.  Actually, it was farther than I thought, but we made it.  After that long ride, we walked around for a long time.  Then we left there, got some lunch, and went to the grocery store.  Next, we stopped at the library to pick up a few books I had on hold.  Finally, we headed home.  I went upstairs to get in more comfy clothes, and saw a print out for an exercise routine that I got off of Faith, Hope, and Fighting Spirit’s Blog. I decided, to try it out.  Whew! for someone who hasn’t been exercising, it was intense.  Really, it wasn’t so bad, but it calls for many push-ups and I’m really not good at doing push-ups.  I am very proud that I got through the whole Total Core Pyramid, and I only skipped a few push-ups.  I rested for a while, then made dinner and a friend came over and we watched movies.

What a busy day!

After all of that my hip was hurting so much!  It popped and everyone heard it!  Ouch!  I guess I haven’t been having hip troubles, simply because I haven’t been doing much.  When I went to bed my shoulder was hurting so bad after all those push-ups I couldn’t get comfortable.  I finally decided to take a pain pill, and it helped.  (I took a total of 3 hydrocodone yesterday.  The first because I had a headache, the second because of my hip, and the third because of my shoulder.)  I don’t think it’s a good thing that I have to take pain pills to get through an active day.

I don’t want to have surgery on my hip again, so I’m going to try to build it up with light exercise, working out in the pool, and having massages.  I’m hoping to be able to start going to the pool next week.

My husband is starting a new job on March 16th.  He will be working as a contract employee for the first 3 months, then he will be full-time.  It’s an exciting and nervous time.  This is a much more stable company, and it has better insurance.  Of course he won’t have this insurance for the 3 months he is a contract employee, and for the first 30 days after he is full-time, but we will still be on his old company’s insurance, we just have to pay for it.  He will still be able to work at home, with great flex time.   I just hope he will end up loving what he’s doing!  It’s very hard to have a job that you hate, no matter how good the benefits.

To Sum Up:

  • Meniere’s is doing great.
  • I’m being much more active.
  • Hip is not doing so great.
  • Hubby has a new job.

Oh, by the way, I’m looking forward to my appointment with Dr. Kaylie on the 14th.  I’ll  be getting a hearing test and we’ll find out just how much better I really am.

No New Punctures for Now

On By WendyIn Medical Tests, Meniere's Disease3 Comments
image found at http://coffee-shop-dharma.blogspot.com

I just got off the phone with Dr. Gray.  I told her how much better I’m feeling, and she said she didn’t want to even test my pressure if I’m feeling this good.  She doesn’t want to mess around with things.

She is very hopeful that I will continue to feel better.  (me too!)

I am wondering if the reason I’m feeling so much better is because I stopped taking Topamax.  It can lower your pressure, so it could have been causing my pressure to be too low.  Or it could also be because I started taking B12 shots.  Tomorrow will be week 3, so I should really be starting to feel a difference there.  I have much more energy, and I just feel better.  Perhaps a combination of the two has really made the difference.  I don’t know, but I’m just grateful to be feeling so very much better!

What a difference from just a couple of months ago, huh?

Oh, I am talking on the phone again!  I had 3 conversations on the phone today and I was able to hear the people, and I didn’t get nauseous.  (often when I tried to talk on the phone before, even when I could hear, it made me so dizzy I would get sick to my stomach)

What a nice day!

On By WendyIn Life, Meniere's Disease5 Comments

I had such a nice day today, I just had to share it.

My hearing is better.  No symptoms at all really!  Yay!

Today we went to the co-op first and stocked up on groceries for the week.  We came home and made burgers.  We cooked them on the grill, and then we ate outside.  It was about 80F!  So cool.

Then we went to look at cars.  For ME!  Yes, we are looking at buying me a car.  For years we’ve been a one car family, but one of the biggest reasons I don’t drive is because I’m afraid that I will get out and have an attack and won’t be able to get home.  I would just feel so much better I knew I could call Stuart to come get me if something happens and I feel like I can’t drive.

This is the car I test drove today:

2004 Volkswagen Beetle

How cool is that?  We drove it with the top off, and it was so much fun!

Not sure we’ll get this car, but it sure was fun test driving it.

Another nice thing about today…my husband has been flirting with me all day.  It’s so nice.  He so often has to be my caregiver, it’s so very nice for us a day where we are just a married couple, in love, and having fun together.

I’ve been feeling great lately.  I still have my lumbar puncture scheduled for Wednesday, I think I’ll try to do as much as I can from now until then.  That way if over doing it is what caused my last set back, it should do it again.

Tomorrow, I have another one of those Breath Tests.  On Friday when I could finally eat I had such a horrible headache I was forced to bed for hours.  I hope tomorrow’s experience is better.

Today was such a nice day.

A Different Thursday

On By WendyIn Life, Meniere's Disease3 Comments

Today I don’t have anything particular to write about.

Health wise things are about the same.  I’m feeling a bit better.  Hearing has improved, but still not up to its normal standards, and I’m still nursing a headache.  However, the weather has been crazy here.  Warm one moment, cold the next, and now it’s raining.  So all in all things are pretty good there right now.  Just waiting on the next visit to see Dr. Gray on the 2nd.

Every year about this time our master bathroom gets invaded with lady bugs.  I’m not sure how they get in there, the window doesn’t open, I think they just came with the house.  : )

Lady Bugs in my Bathroom

Yesterday I took a picture of myself.  Don’t know why, I just felt kind of pretty.

That's me!

Today I had a first: I was served with a Subpoena.   Of course I’ve seen people get served on TV many times, but I got mine in the mail.  How weird is that?  It is such a strange feeling to see on a piece of paper that I am COMMANDED to appear and testify in court the week of March 28th.  I have to testify against Paul Seelig, former owner of Great Specialty Products.  He was selling bread as Gluten-Free bread and it wasn’t.  I was one of the people who bought some and got sick.  It’s a much longer story than this, and I may tell more later, but for now you can read the initial news report about it here: http://www.wral.com/news/local/story/6949028/ if you would like.

I won’t bore you with the details of how involved I got in this case.  But I feel so betrayed, and hurt.  I believed this man, and he could have killed people.  I got sick and convinced myself that I must have gotten gluten somewhere else.  I feel like I am such a bad judge of character now.

Love Makes It So Much Easier.

On By WendyIn Disability, Life, Meniere's Disease1 Comment

I’d like to dedicate this post to everyone who loves me, or who simply shares their love with me.

I often mention how much my husband does for me.  He not only takes care of my physically when I can’t, he does housework, and he also holds down a more than full time job.  He also puts up with me when I am having a very short-tempered day because I’m not feeling well.  He does all of this because he loves me.  I can’t imagine how I would get through all of my trials without him.  (I’m really glad I don’t have to.)  Thank you husband, for being there when I’m my sickest, for listening to me when I just need to scream, for encouraging me, for being strong for me when I don’t feel very strong myself and for still flirting with me and making me feel like I’m sexy.  Your love is very important to me.  I hope you know how much I love you.

To my dear friends who still accept me as I have changed with this disease.  I know I’m not quite the same friend you originally met, but I sure am glad you stuck by me.  I love it when you share your life with me, and tell me what is going on with you and just don’t even pay attention to my illness.  Those are special days to me.  However, I am also grateful for the days you let me cry on your shoulder and tell you  how hard things are, it’s nice to be able to talk about it and know you aren’t being judged.  You have been a great friend.  Thank you for loving me.  I love you too.

To my wonderful blogging friends.  You have listened to me possibly more than anyone.  You have heard mostly my down times, and you are still here.  I love you for that.  You encourage me, and have helped me to come to terms with my illness.  You may not know me personally, but you have shared your love with me, you have reached out over many miles and given me hope, knowledge and friendship.  I thank you, and love each of you.

I would be remiss in this post if I didn’t mention the love of my pets.  Our darling dog Sandy, and loving cat Max.  They are always looking out for me.  They know when I don’t feel good and always try to make it better.  I often feel like I’m a pet pillow (at least I’m not a Pillow Pet!), but they just want to be as close to me as they can.  They are always there for me.   They warm my heart, I love them so and can’t imagine my life without them.

I’m a very lucky person to have so much love surrounding me.  It really makes living with a chronic illness easier.  At one point I thought it would be easier if I was alone, if no one cared.  Then I could just drift away and it wouldn’t matter.  I was in a deep depression and felt my life was over.  I couldn’t see how I could possibly be of any use to the world being in the condition I was in.  I’m very grateful I had some wonderful people who loved me and made me realize I had something to live for.

I love you.

This post is part of Patients For A Moment blog carnival, hosted this time by Chronic Babe.

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.

What?

On By WendyIn Meniere's Disease3 Comments
photo courtesy of funnycorner.net

Yesterday started off being a very good day.  I woke up looked in the mirror and thought, “Hmmm, my face looks a little thinner.  Nah, must be the light.”  So I stepped on the scales, and I have lost some weight!  I lost 5 pounds!  I was so tickled.

Then I had much to do, a friend was coming over to make us dinner so I wanted to clean up the kitchen a little and run to the grocery store for a few things.  Yes, I planned to drive to the store myself.

I did actually DRIVE to the store, but Stuart did go with me.  He wanted to get out of the house too.  I came home, cleaned the kitchen, and even did a little out in the yard.  Our friend came over and made us dinner.  It was very nice.

I kept noticing that I really couldn’t hear our friend very well, but I often have trouble hearing him so I wasn’t worried.  He and Stuart were talking and I decided to just concentrate on something else because I couldn’t keep up with 2 people talking, it was very hard, but I wasn’t upset or anything.  I was glad they were having a nice discussion.

We decided we’d watch a movie.  We picked one that had subtitles and I was fine with reading the movie.  I was getting tired, but not overly so.  I was using my amplifier in my right ear (the ear I can’t hear anything really out of without the amplifier).  After the movie I took off the amplifier and realized my hearing in my left ear had dropped significantly.

We went to bed, I thought perhaps after a good nights sleep things would be back to normal.  Unfortunately, when I woke up this morning, my hearing is still down.  I don’t feel bad.  I’m not dizzy.  I do have a slight headache…still, but I often have headaches this time of year because of the weather changes.

I won’t lie, I’m scared.

I looked back at my posts after the last spinal fluid patches and the first symptoms to come back were, headaches and hearing loss.  Within 3 days after my hearing dropped last time I had a vertigo attack.

We’ll just wait and see….and call Dr. Gray on Monday and see if I can get in to get my pressure checked.  I think it would be better to know what we are dealing with on that front.