Category: Meniere’s Disease

Guess where I spent last night.

On By WendyIn Meniere's Disease6 Comments

Ok, can you guess where I spent from 9:10pm to about 1:00am last night?

 

Mr. Pumkin Head

You may have guessed, “A great Halloween Party?”, or possibly “Sound asleep in your comfy bed?”, or maybe even “Having Wild Monkey Love with your hubby?”   Well all of those would be wrong.  Darn it!  The Wile Monkey Love sounded kinda interesting.

 

I was at:

Duke Hospital Emergency Room

At 8:45pm last night, after giving out candy and other treats to over 30 some odd trick-or-treaters, I sat down in my living room and I started feeling funny.  I felt like my heart was going to beat out of my chest.  When I tried to take my pulse my heart was beating so fast I couldn’t count it.  I couldn’t take a deep breath without excruciating pain.  It hurt all up my jaw line on both sides of my face, and the tightness in my chest was nearly unbearable.  So my dear husband rushes me to the emergency room.  I wouldn’t let him call an ambulance, because it cost too much.  Of course, about the time we get there I’m feeling much better.

(I should put in that I have had these episodes before, but this one lasted much longer than the others have.  They don’t happen very often.  My doctor had me wear a heart monitor for a week and, of course, it didn’t happen.  I did have some times when my heart would flutter, but she said most people have that happen, usually they don’t even notice.)

My heart was still a bit fast when they hooked me up to the heart monitor, about 120 beats per minute.  Now I usually have a fairly high heart rate, it’s usually in the high 80’s and into the 90’s, occasionally it’s even been a little over 100 when I’ve been to see the doctor, but only when I was too hot and too nervous.  My blood pressure was a little high too, which is surprising because my blood pressure is usually on the low side.

So they had to take lab work.  This is much easier said than done on me sometimes.  The poor nurses could not find a good vein.  They finally got an IV started in my right inner wrist.  Let me tell you, that is a very painful place to have someone stick you.  I said words I try very hard not to say, especially when someone is only trying to help me.  But, oh my goodness, that did hurt.

Of course, then the world started to spin.  They didn’t like it at all that my husband gave me a Valium right then, instead of waiting for them to order one from their pharmacy and giving it to me themselves.  We explained by the time it came I would be having total vertigo with vomiting and it wouldn’t stop until it ran its course.  They decided they really didn’t want to deal with that too.

All of my blood work came back normal.  My heart was beating a little fast while I was there, but it had a steady rhythm.  After they gave me a bag of fluids, my heart rate came down a little.  Probably, because it was so cold.  So after being poked and prodded once again, the doctors come in and tell me that they found nothing wrong.  All of my blood work came back normal.  Everything was just find.

My diagnosis?  1. Chest pain (Unspecified)  2. Tachycardia (Unspecified)

It appears that some people have an abnormally rapid heart rate (Tachycardia) occasionally for no known reason.  If it last for a long period of time it can be very dangerous, but if you just have it happen now and then, it’s not supposed to be a big deal.  Especially, since I don’t have any of the other risk factors for heart problems.

Then she gave me a prescription for anti-reflux medication.  This makes no sense to me.  If they don’t think I was having heartburn why give me a prescription for a drug to prevent it?  I think most people think doctors have to give them a prescription and so they just hand them out.  I told her, I don’t take anti-heartburn or reflux medications.  I think the  risk from the side effects are simply too high.  If I have a little indigestion I eat something that is alkaline and that takes care of it.

So I left the ER with these instructions:

“Make a follow-up appointment with your regular doctor within 3-5 days.”  Well, I have a Lumbar Puncture scheduled for Wednesday, and I see the Digestive Health Specialist (I’m not sure why.) on Friday.  Oh, and I go to see my ear doctor on Monday.  When is my husband supposed to take another few hours off work to take me to the doctor for a follow-up from this ER visit that showed nothing?

Emmmm.  Can we hear the negativity in my voice?

I try, I try so hard to keep a positive attitude, but sometimes, it just isn’t there.

Today is one of those days.

Warning,  I’m having a very hard day today and the following is a harsh view into how I’m feeling.

Continue reading “Guess where I spent last night.” →

What?

On By WendyIn Meniere's Disease1 Comment

I thought I was feeling better today.  I woke up ready to face the day.  I got up and started making pancakes, after about 4 I realized I hadn’t put an egg in the mix.  Yuck.  I tell you my husband will eat anything.  Burnt?  He loves it.  Ingredients left out?  He doesn’t really notice.  (Sometimes it makes me wonder if I really am a good cook.)  : )

So I started my pancakes over, of course I can’t make just 2 so there are 4 in the refrigerator for later.  Luckily, they are good warmed up.

Then I settled down to read a little email, and look up something I was wondering about on the internet.  I was reading an email from a good friend when all of a sudden the words moved.  Well, here we go again.

The attack right now is really hard for me because I love Halloween.  But now it seems there will be no Jack-O-Lantern carved, no costume, no party.  I’ll be lucky if I get my traditional treat bags ready to give to my trick-or-treaters.  Kids love coming to our house, we usually have the front all decorated, we are in costume, and I give out treat bags full of goodies like spider rings, crayons, Halloween themed coloring pages, glow sticks….  Fun things they can play with and if they have a food allergy no worries.  We also have a tub of candy for them to choose from, but if they can’t have some of it they don’t feel left out.  I remember wondering if they really appreciated the little treat bags, then a little boy came to our house and I gave him his treats, he turned to his mother and screamed, “MOM! I got a bag!”  That made it all worth it.

We’ve had a party at our house the past 2 years, but friends of ours got a new house and they wanted to have the party there this year.  I guess it’s for the best since I’m feeling so out of it.  Unfortunately, it doesn’t look like I’ll be able to even attend this year.  Oh well, we always have next year!

Today on Fleetly Dreaming’s Blog by Nicki, she asks “What CAN you do?”  She challenges us to stop thinking about what we can’t do because of Meniere’s, but think about what it is we still can do.  I decided to take the challenge and list  some of the things that I CAN do, and things I’m grateful for.

  1. I’m grateful that I have such a wonderful doctor who wants to help me live as normal as possible, and who isn’t satisfied with just treating Meniere’s, but he also wants to find the cause.  (Thank you Dr. Kaylie, thanks to you, I CAN have hope.)
  2. I CAN still keep in touch with my friends and family because of  the wonderful world of the internet.
  3. I CAN still hear, something.  That is better than living in complete silence.  (Sometimes it’s much better than others.)
  4. I may not always be able to hear my husband when he enters a room, even if he’s talking to me, but I CAN hear him tell me he loves me.  (He just has to look me straight in the face, and speak loudly.)
  5. I CAN hear much more during my bad episodes since I bought one of those little ear amplifiers that look like a blue tooth.  It’s not perfect, but at least I can hear something.
  6. Some days I CAN hear out of my left ear.  I’m very grateful for those days.  I CAN still hear the birds, I CAN hear water flowing, I CAN hear my friends talking to me on the phone…
  7. Some days I CAN keep my balance.   I’m very grateful for those days.  On those days I CAN cook,  go for a walk, dance with my husband, laugh so hard it hurts, play with my dog and cat, and simply enjoy life.
  8. I CAN still be creative.  Not every day, but some days I CAN work in my studio, I CAN paint, draw, take pictures and even work in my fused glass studio.
  9. On days I can’t work in my studio, I CAN often still work on the computer.   I can write, and even draw thanks to a great friend for giving me Photoshop.
  10. Even on my bad days I CAN usually cuddle with my dog, and cat.  They always seem to know when I’m not feeling well and will pay me much more attention.
  11. On the days when all I can do is throw up, I CAN still be grateful to my wonderful husband that I don’t have to go through this alone.

Thank you to Nicki, for making me remember all the things I CAN still do, and many of the things I’m grateful for.

I did get out and do some things today.  My husband took half a day off so we loaded up the Element with things to go to charity.  We dropped those off by the mission, and then had lunch out.  We picked up things at Petco for Sandy and Max.  Picked up a prescription for me (no not at the same place), and headed home.

I was pretty tired after all that so my husband started dinner.  He warmed up  some mariana sauce and put on a pot of Tinkyada noodles.  While the noodles were cooking I decided we needed more vegetables.

I cut up some zucchini, and some collard greens then sautéed them up with grape seed oil and garlic with a splash of balsamic vinegar at the end to deglaze the pan. I’ve never really eaten collard greens cooked any way but the old Southern way of boiling them with fat back and then seasoning them with vinegar.  Sauteing them was so much better.

I'm so Dizzy, My Head is Spinning…

On By WendyIn Meniere's DiseaseLeave a comment

I couldn’t even lift my head long enough yesterday to make a post.

I have lot’s of things I want to share.  Things I’ve recently cooked.  Certain Sites I’m learning a lot from.  Just lot’s of things.  But I feel so bad.

Yesterday I woke up with my head spinning.  I couldn’t even reach up to the shelf right above my head on my bed to get my pills, I had to call for my husband.  Luckily, he heard me on the first call.  I got the pills in me but I desperately had to go to the bathroom.  That is not fun when the world is spinning.  It’s so awful to need help to use the bathroom.

I couldn’t hear hardly at all yesterday, and I couldn’t stay awake.  I slept until nearly 7pm.   Waking only to use the restroom and eat a little.  I got up for a couple of hours, ate a little something, then I was off to bed again.

This is day 5 of this attack.  I really wish it would go away.  Years ago when this first started I would have a horrible attack one day, zonk out for hours, then I’d feel find.  It’s not like that any more.  I don’t know if it’s because I have bilateral Meniere’s or if things just get this much worse as you get older.

Today was supposed to be my appointment with the Naturopatic and Holistic doctor, but there was just no way I am able to ride in a car.  Especially since her office is about 40 mins away.  Plus, I wouldn’t be able to hear her.

I was reading about adult onset hearing loss today and it’s affect on people.

Here’s how I feel about hearing loss:

Since my fluctuating hearing loss often accompanies an upcoming Vertigo the first feeling I have first is FEAR. “Oh no, Not again.” is my first thought.  Then I take my medication, and sometimes the vertigo doesn’t come.  However, I almost always have disequilibrium even it I don’t have full-blown rotational vertigo.

I also have severe hearing loss in my right ear all the time, and my left ear has moderate to severe with some frequencies.  I can handle one on one conversations most of the time, even when my hearing has really dropped.  A person has to look at me, be close to me, and talk slowly. This is very hard for people to get used to doing with me, because sometimes I can hear pretty good.

I have trouble in crowds., and with too much background noise. I can start having a conversation with someone, but if others join the conversation, I’m lost and generally just get quiet or excuse myself.  If I’m having an attack, it is impossible to hear with the TV on, or in a crowd.

I have to point my good ear at a person so I can hear. That is unless I’m having an attack, then I don’t have a good ear.

I can’t talk on the phone. Even if I’m starting to hear better after an attack, it takes a long time before I can talk on the phone.

I feel left out. If people are talking around me I feel so left out, it hurts and then I get angry.  How can they just ignore me that way?  Unfortunately, they don’t even know what they are doing.

There is so much I wanted to get done.  So much I wanted to do.  How can I work on getting healthy when I can’t even stand up without help?

I feel like such a burden, and I don’t feel like I can be a very good friend.

A good and very bad Sunday.

On By WendyIn Meniere's Disease, whole nutritionLeave a comment

The day started out well.  I still couldn’t hear, but I was feeling ok.  So we decided to take a trip to the NC State Farmer’s Market.  We were on a quest for pumpkins!  We spent nearly an hour and a half picking out the perfect pumpkins for us to decorate, or just use as decoration.  It was much fun.

Since there isn’t any organic produce at this farmer’s market, after we got our pumpkins we decided to make a run to Whole Foods.  Look at the wonderful produce we picked up.  The winter squash came from the farmer’s market, the rest came from Whole Foods.  Most are organic and local, some are just organic, and well, a few are grown conventionally.

On the way home from Whole Foods I started having a vertigo attack.  At the first sign of dizziness I took my medication, but it didn’t really help.  The swaying and bumping in the car was horrible on our 40+ minute drive home.  I will never go that far from home when I’m having Meniere’s trouble.  I should have known better.

Shortly after we got home I started throwing up.  The attack started around 4:30pm and finally stopped around 7:00pm.  Actually this was a fairly short attack, considering I’ve had them last over 8 hours before.   However, it was particularly violent.  I’m so sore and tired today.  I will have to just rest and recover.

What Having Meniere's Means to Me.

On By WendyIn Meniere's Disease4 Comments

Having Meniere’s means:

You can never make definite plans. You never know when a Meniere’s attack my hit so you simply can’t make plans that can’t be broken.  I’m very lucky that most of my friends are very understanding about this.  I was invited to 2 parties today and I had to cancel on both of them.  I am so grateful that my friends will continue to invite me to things, even though they know I may not always be able to come.

Sometimes you lose friends because you aren’t reliable. (or I should say, You find out who your real friends are.) Recently I found out why a friend of mine hadn’t been in touch with me for months, hadn’t replied to my reaching out…nothing.  She feels that it’s a 50/50 chance that I’ll ever keep plans.  I’m simply too much to deal with.

I have to be prepared for the worst. My doctor calls this a disease of Random Punishment.  That means an attack could hit at any time, no matter what I do, no matter where I am.  This means not driving more than 15 minutes away from my home, on good days.  Often, not driving at all.  Having a walker by my bed and downstairs in case an attack comes on, I found this really helps me when I have the disequilibrium, I’m not completely incapacitated, I still feel partially independent.  Always having my medication with me.

Take my daily medications every day. I don’t know if the diuretic really works, but I’m afraid to find out if I would be worse if I didn’t take it.

Stick to a Low Sodium Diet. Again, I don’t know if this actually helps me, but I’m too afraid to find out what would happen if I didn’t do this.  Besides, people eat way too much sodium.  We all really need to be aware of how much sodium is in the foods we eat.

Keep my emergency medications with me at all times, and take them at the FIRST sign of vertigo. I know I mentioned before that I should always keep my medications with me, but I felt this needed repeating because it is so very important.

Living in silence some of the time. Since my Meniere’s is advanced, and in both ears, if I have an attack in my left ear that really diminishes my hearing, I simply can’t hear.  I have a little ear piece that amplifies sound, but often it is distorted due simply to the fact that my hearing loss is different on different frequencies.  This is very hard on me and I’m sure it’s hard on my husband and friends.  One day I can hear fine, the next day I can’t hear them at all, that has to be confusing.  And I get so frustrated.

Feeling left out some of the time. Sometimes I feel left out simply because I can’t hear what people are saying.  Other times it’s because I can’t attend functions I’d like to with my friends because I can’t hear, drive, am too dizzy…

Feeling hurt and angry some of the time. I think part of this is a because I not only have Meniere’s but I also have other chronic conditions.  It’s hard not to get mad at the world sometimes.  It’s also hard not to be hurt when you are all alone and don’t feel like anyone could possibly understand.

Finding out how very lucky I am. Every time I have an attack, I am amazed at how well my husband handles it.  If I had to do this alone I think I would go insane.  I’m also very lucky to have the wonderful friends I do.  They are very understanding, treasure the time we get to spend together, and never forget about me.