Category: Meniere’s Disease

I have a Freight Train in my Head!

On By WendyIn Meniere's DiseaseLeave a comment

I simply can not believe how bad the tinnitus has been lately.  First, I got that dang pinging sound….drives me insane.

Last night my left ear started roaring so loud I couldn’t concentrate.  I get loud noises and squealing sometimes, but that never last that long.  Usually, I just have this electronic sounding hum…annoying enough, but I’ve gotten used to it.  But the noise last night lasted for hours.  I was surprised I fell asleep, but I think it simply exhausted me, and it was a steady noise and I’ve found those aren’t as hard to sleep with.  That pinging sound, now that keeps me awake.  Every time I start to doze off, PING, and I am startled awake.  I swear it’s getting worse.

I went to see Dr. Kaylie yesterday.  He’s my otolaryngologist.  He’s optimistic because I had such good results from my blood patch at the beginning, but he thinks I may need another patch.  He was going to be meeting with Dr. Gray last night to discuss their patients.  (they now have 22 patients together.  I don’t think they all have Meniere’s.  I am only one of 2 that have Bi-lateral Meniere’s.

He told a story of a woman who was found to have high pressure and she was taking the medication to keep it under control.  She was symptom free for 6 months and the medicine stopped working.  All her symptoms came back.  I know I’ve been having a hard time having a relapse after 10 days, I can’t imagine how I would have felt if I was better for 6 months and then it all came crashing back down.

Christmas Parties

On By WendyIn Life, Meniere's Disease2 Comments

I had 2 Christmas parties to attend this week.  One on Thursday night and another on Saturday night.  I am very proud of myself that I made it to both of them.

The first party was full of people who know me well and understand my situation.  My hearing deficit, my dizziness, my Celiac disease…  They are a wonderful bunch of people who tried hard to make me as comfortable as possible.  I was suffering from disequilibrium pretty bad, and my hearing was much less than desirable, but I had my amplifier in one ear and it helped a lot.  I pretty much sat in one place and if anyone wanted to visit with me, they came to me.  When I told them I couldn’t hear them very well, they would make sure to come closer, speak clearly, and be sure to face me.  I’m not great at reading lips, but if I can hear part of the conversation I can read lips a little, and then I can piece things together.

These friends were also wonderful about making sure I had gluten-free food to eat.  I did make sure and fill my plate before anyone else to avoid cross contamination. (There was a lot of bread and cookies and such on the tables too, and just one crumb is all it takes.)  One friend was even kind enough to make gluten-free brownies for me!

The party on Saturday night was a completely different story.

I wasn’t feeling well…a little unsteady.  My hearing was horrible.  There was so much noise in this house, and unfortunately I didn’t charge my amplifier enough so it was dying very fast.  With in the first hour I was almost completely deaf.

I was lucky enough to be sitting by a friend for most of the time and she would interpret what was being said for me so I would know what was going on.  We also left the party right after we opened gifts.  (I will say I was thrilled with my gifts!  I felt like I had Christmas a little early.)  I just wish I could have heard all the Christmas wishes from my friends.  I also knew to make sure and eat a full meal before going to this party, because there wouldn’t be anything there that I would be able to eat and be assured that is was safe.

I did have one heart warming experience.  I was sitting on a little couch after we opened our presents and my friend’s son, Nate, came running up to me and hugged me and said, “I love you!”  Nate is a very special little boy.  He is often very shy, especially when there are a lot of people around, so this just thrilled my heart.  I haven’t been able to spend as much time with him as I would have liked over the past year.  He is 2 1/2 years old, and has a huge part of my heart.

How do you handle a party situation?  I know many people don’t want to feel different, and avoid these situations because they can’t hear or because they are afraid they may have an attack.  I did have to take Valium while I was at the party Saturday night, but I didn’t feel bad enough that I thought I was going to have a full-fledged attack.  I also prefer it if people know what is wrong with me.  I want people to know how to talk with me so I’m more likely to hear them.  I want people to understand that I might grab a hold of them if I get off-balance as I walk by.  This made the party on Thursday night much easier than the party on Saturday night.

Does it embarrass you that when you can’t hear someone?  (I sure get frustrated some times!)

Do you avoid social situations? (If I’ve recently had an attack, or feel like I might have one,  I stay home.  But lately, I’m pushing it a little bit more and trying to be more social despite my fears.)

Do you have warning signs before you have an attack?

Vertigo

On By WendyIn Meniere's Disease3 Comments

Well I guess the title says it all.   I had a vertigo attack yesterday.

Dr. Gray isn’t sure whether my CSF (Cerebral Spinal Fluid) pressure is to high now, or if the blood patches didn’t take and it’s too low.

When the world started to spin yesterday I took a Valium and a Phenergan immediately.  Then I decided I’d try one of the pills that she gave me to reduce the CFS pressure.  The spinning lasted for a little while, but it never got really bad (by that I mean I didn’t throw up).  Every time I would close my eyes the world would spin much faster and I would start to feel sick.  At one point I got all hot, the world was spinning…I just knew I was going to see my lunch at any moment.  But I really tried to stay calm.  I stared at the corner of the ceiling and willed it to be still.  I just concentrated on staying calm and not throwing up.

Usually, I get very upset when all this starts and start to freak out.  I did get very upset at first when right after I took the pill to lower my CSF pressure my husband looked at me and said, “I hope your pressure isn’t already to low because that could really make things a lot worse if it is.”  I was so scared, I just burst into tears.  He felt so bad.

During this attack I kept repeating the words “calm”, “peace”, and “relax”.  I felt much more at ease.  Even if things had gotten all out of control and I’d been throwing up like crazy, I think trying to keep my head about me and staying calm helped me feel better about the situation.

Yes, I’m still scared.  I’m tired of being poked and prodded.

I went to see the Digestive Health doctors last week, and I have to go through a whole other battery of tests.  The first one was supposed to happen today, but I had to cancel it.  But I am so overwhelmed by everything that is going on with me and the Meniere’s I just couldn’t handle anything else right now.

That dang ticking sound is back.  It is driving me crazy.  I know the biggest reason it bothers me is that it sounds like it is coming from outside of my head.  All the other noises I can tell are just coming from my ears.  This noise tings, and it has no rhythm, it’s just arbitrary.  I feel like it’s a frequency I might be able to hear, and that make s it even worse.  I keep thinking maybe Stuart can’t hear it because of all the other noises he can hear, but then I put in ear plugs to keep it out and it’s still there.  I had such a hard time sleeping last night, thanks to the mysterious tinging sound.  (and we all know how important sleep is to us.)

Thanks again for all the support and for just listening to me rant.  I really appreciate all the comments that you leave me.  It makes me happy to know that there are people out there who understand, and people who are pulling for me.  I’m very humbled and grateful for all of you.

I’m scared.

On By WendyIn Meniere's Disease3 Comments
Snow falling in my back yard, December 4th, 2010

Last night I went to small Christmas gathering, I even drove myself!  I was very proud.  Unfortunately, during the party I started getting a pretty bad headache, and then I noticed my hearing dropped.  Dramatically dropped.

I came home and my stomach was killing me, something I ate at this gathering had caused me a lot of distress.  I ate half of a sandwich and was feeling much better.  Well, my stomach felt better….not my head, and the hearing was still way down.

I decided to take one of the pressure pills. (the pills Dr. Gray gave me that would reduce the spinal fluid pressure if it started building up too high.  She said to take one if I had a headache.)  My headache did not get better, I decided to take 1/2 of a pain pill and try to sleep.  I slept for 3 hours and woke up in horrible pain.  My neck, shoulders, and head all hurt.  Plus, my hands felt all tingly.  I took a couple of Tylenol, and tried to massage some areas and stretch and finally I was able to go back to sleep.

This morning when I woke up my hands were still tingling, and soon the headache started.  I’ve been fighting a headache all day.  Stuart and I went out for a while today,  we went to buy him a pair of jeans, then we went to the grocery store.  The grocery store was packed because it was snowing.  People in NC freak out when it calls for snow.  Unfortunately, we really had to get some groceries or I never would have braved that mob.

When we got home my head was about to pound off.  I again started with the pressure pill.  It didn’t help my head at all, and soon my neck and shoulders were cramping again, and my hands were all tingly.  I looked up the side effects of this medication.  It says that these are “Serious Side Effects – seek medical attention immediately”.  Well, I knew that it would wear off soon, so I didn’t seek medical attention immediately, but I won’t be taking any more of those pills.   Stuart is going to call Dr. Gray tomorrow.  (Yes, I know it will be Sunday, but that’s what she gave me her pager and cell phone number for, right?  She can always decide not to call me back until Monday.)

I’m so scared that the blood patch didn’t take, or maybe I was just starting to feel better because it was my time to start feeling better and now I’m starting to feel bad again.  Yesterday, I was so happy.  I had a long conversation with a friend on the phone, and I drove myself to a party…I actually went to a party, by my self, at night!   Today, I can’t talk on the phone, and I’m afraid to push it.  I’m really scared the procedure didn’t work.

Well, if it didn’t, we’ll figure out something.  It may not be the cure that this procedure was hoping for, but it will be something.  My doctors will have learned a lot more about this disease, and I will have had at least a small reprieve.  I will pick myself up, dust myself off, and find a way to have a life despite my illness.

"The most common way people give up their power is by thinking they don’t have any". Alice Walker

On By WendyIn Life, Meniere's DiseaseLeave a comment

I saw this quote by Alice Walker, and I thought about how much I believed I had no power over anything in my life when the Meniere’s was bad.

I was so dependent on my husband for EVERYTHING!  From paying all the bills, to helping me get to the bathroom.  I had no choice for anything in my life…but that’s not exactly true is it?  I could have completely given up and just packed it all in.  I could have stopped trying to get out of bed.  I could have stopped caring that I had to be taken care of and just given in, but I fought it every step of the way.  Sometimes, it hurt my husband, but most of the time when I really needed him I let him help, but when I didn’t need help, I let him know in no uncertain terms.  (My biggest regret is that I wasn’t easier on him.)

There were a few times when I thought it would easier just to give up and take a bottle of pills and stop being the burden that I felt like I was.  Those are the times I gave up all my power.  But then I’d realize that just because this disease had control of my body, it didn’t have control of my mind.  So, I worked as hard as I could to find a way to live a better life with Meniere’s.  I never thought that I would have the chance of getting rid of the vertigo, and living a mostly normal life again.

Getting on with my life…

On By WendyIn Meniere's Disease3 Comments
I've been doing nothing for so long, I think I can cross it off my list.

 

So, now that the blood patch is over, and I’m feeling better….now what?

I still have a long way to go before I think I’m healthy.  So I think it’s time to buckle down and start paying attention to the title of this blog.

Questions I need to find the answers to:

  1. Why am I having lower GI issues every day for almost 4 months?
  2. Why am I hungry all the time?  (could it be because of Number 1.?)
  3. How can I start exercising with my hip problems?
  4. How can I lose some weight?
  5. How can I improve my diet?

Now, a list on how I’m working on the above list:

  1. I have an appointment with the Digestive Health specialist on Thursday to discuss Numbers 1, 2, 4, and 5
  2. I found a pool nearby that I can exercise in, I’ve added ankle weights and a flotation belt to my Christmas list to make it even easier to exercise in the water.
  3. If the people at Digestive Health can’t help me, then I’m going to make an appointment with the naturopath/dietitian that I found.  (since I had to cancel the last appointment I made with her because of a vertigo attack).

We also made a huge step tonight in starting to change our lives considerably.  For a long time my husband and I have talked about Fostering.  Unfortunately, with my health issues I was afraid I wouldn’t be able to give a needy child the attention he or she needs.  Now that things look like they may be changing, and I won’t have to worry about having a vertigo attack once or twice a week, we decided to take the first step.  We went to an orientation tonight to find out more about becoming foster parents.

We plan to start taking the classes starting January 4th.  I will take a month of classes (30 hours of training all together) before we can be considered to get a license.  We also have to have a background check, be finger printed, have a physical…..there are a lot of things to do, and I’m glad.  I’d hate to think they gave just anyone a license to be foster parents.

I’m pretty excited about getting my life started.  I hope I’m not jumping the gun, but I really think this worked.  My head just feels so much different.

I have a lot to do to the house to get it ready for a child.  Starting with just giving it a good cleaning.  I don’t know how so many people with Meniere’s can keep up a house, and a family, and some even work.  Well, I guess I managed for years, but when I went bilateral, my life as it was pretty much stopped.  I even started seeing a therapist to help me deal with it all.

I will say one thing about therapy, it really helped my husband and I be able to talk about our feelings about my disability in a safe environment.  Then we were able to talk about it all much easier when we were at home.  When I felt like a burden, when I felt like he just didn’t understand.  When he would feel like he really wanted to help, but just didn’t know how.  I simply didn’t think anyone could love me enough to put up with as much trouble as I felt like I was causing.  I felt like a prisoner in my own home.  I couldn’t work, I couldn’t drive, I often couldn’t even help clean house or cook.  Yes, my prison is lovely, and I have a wonderful husband who is here with me, but he’s free to leave at any time.  I was completely dependent on him, and his generosity.  I understand the phrase, “feeling like a bird in a gilded cage.”  No matter how nice a prison is, it’s still a prison.  I had to come to the understanding, that is was my disease that was keeping me a prisoner, not my husband, and I didn’t do anything to cause it.

I hope all of you know, this disease is not your fault!  You didn’t do anything to cause it.  Let the people who love you, care for you, it’s the only way they feel they can help.  My husband felt so helpless, but at least he could be here for me, and help care for me.  He told me he is just so grateful that he could be here to help me through this.  He will never know how grateful I am that he has been here, and continues to be there for me.  I hope he never needs the same kind of attention I have for the past couple of years, but I hope he knows that if he ever does, I will be more than happy to help him.

(I love you Stuart.  Thank you for being the best husband a woman could ever hope for.)

Pictures taken during the Blood Patch, for CSF leak.

On By WendyIn Meniere's Disease12 Comments

During the Blood Patch Stuart asked if he could take some pictures.  They said it would be no problem as long as he didn’t show anyone but me, and as long as the screen showing my name wasn’t in any of the pictures.

In this photo you can see me in the CT Scan, they are lining up the next leak to patch.  You can see the screen on the left hand side that shows the pictures from the CT scan.

This photo shows how the CT scan has a laser light that shows them exactly where to put in the needle.

Here’s a better view of the laser light, it’s even shining off of the needle they have placed in my back.

Here you  can see the blood being put in.

This photo is very similar to the previous one, but you can see the needle in this one, and see just how very thin it is.

It’s all over at this point, except for the washing up with the nice warm wash cloths.   You can see where they marked my back, and the puncture marks.  You can’t see that each puncture is raised a bit.  The puncture the lowest on my back, almost out of the picture, is the sorest one.  That’s where they did the pressure test, put in the dye, and then patched that spot.  It’s still a little sore, but really only if I try to over do it.  This was not a hard procedure to go through.  The doctors made sure I was as comfortable as possible.  The pain afterward has not been hard to deal with.  The hardest thing was that I couldn’t get up and cook on Thanksgiving.   I love to cook, and I admit, I love to show that off on Thanksgiving.  : )

Thank you to everyone who sent me good wishes for going though this procedure.  I’m happy to say that I do think it has done some good.  I’ve been able to close my eyes and shake my head without getting dizzy….That was amazing.  This evening, I’m feeling a little off, but I over did it today.  I was supposed to do very little to nothing for 3 days.  Today, I went with my husband up to a little mall near here…NO we did not go Christmas Shopping.  He needed to look for something at the computer store, then we decided to get some lunch.  Well, I did run in one store and buy a Christmas present, but I had a coupon, and it didn’t take long.

Oh, who am I kidding, by the time we got back to the car and I sat down I was in enough pain that I wanted a pain pill.  (I’m not a big fan of pain pills.)

Still no headaches, no real dizziness (I don’t think I’d really count the fact that I feel a little off this evening, I think I just wore myself out.)  I’m hearing better out of my left ear.  I still can’t hear from my right ear, I still have tinnitus, and I still have that full feeling (mostly in the right ear).

Right now, I’m feeling good about things.

The Spinal Fluid Leaks are patched….

On By WendyIn Meniere's Disease1 Comment

I’m here on the couch trying to figure out if I feel different.  I can say I don’t have the disequilibrium as much as I usually do, I can turn my head around and around real fast and I don’t start getting sick!

The hearing in my right ear doesn’t seem to have changed much, but the left ear seems better.  However, it is the ear that fluctuates any way.  Also, it’s over cast today, I didn’t sleep well at all last night, and I still don’t have a headache.  (that is very unusual.)

Now ….What did they do?

First, they had to insert an IV, to give me a sedative and so they could take blood out of it.  Finding a good vein on me and getting an IV started took close to 30 minutes.  I do not have good veins, especially if I haven’t had anything to eat or drink for about 11 hours.  But she only stuck me twice, and she did a good job.  I do have a big bruise today, but that’s not unusual.

Dr. Gray took another opening fluid pressure check.  My pressure was higher, 17.75.  I think she was surprised about that, I know I was.  That is pretty high in the “normal” range.  But, she said, “maybe you need more.”

They inserted the dye, it causes an ache on one side until they move you around and get it moving, then the ache goes away, but it did give me a headache.

I was put on my stomach on the CT scan, all I could see was the “bed” below me.  I had to have my arms up over my head, this wasn’t the most comfortable I’ve been, but it isn’t the least comfortable I’ve been either.

They then started putting me through the CT scan to look for leaks.  They found a few.  She said she didn’t want to over patch me, because she was afraid my body wouldn’t be used to the higher pressure and would start feeling worse, especially the headaches.

They did 4 Blood Patches.  I’m very sore today.  Dr. Gray called me this morning to check on me, and she said she would call again tomorrow.

I think I may have tried to do a little too much in the kitchen, I just hate not being in charge in the kitchen.  I love to cook, and leaving it to someone else is hard, especially on Thanksgiving.  But, I did get everything started, so I hope Stuart won’t have too much trouble.

I will be posting some pictures of my procedure as soon as I can get them off my husband’s phone.  I think they are very interesting.   I will also give you more information on the procedure when you can see the photos.

I’m really tired now, and think I should rest.  Perhaps another pain pill soon.  (I’m only taking 1/2 at a pill at a time, I don’t like feeling dopey.)

I hope everyone is having a wonderful Thanksgiving.

We will just have to give this some time to see if it worked.

Thank you all for checking on me, sending me notes….  You have no idea how much it meant to me.

 

A very hard day.

On By WendyIn Life, Meniere's Disease2 Comments

I tossed and turned last night and had a hard time waking up this morning.  Finally, I forced myself to get up around 11am.  (I should have stayed in bed.)

After breakfast and a quick trip to the store to see if I could find a dish that would fit in one of the slow cookers at the house, so we could make the cheese cake, I started preparing things for Thanksgiving.  (No, we didn’t find anything that would fit, so I had to make 2 small cheese cakes.)

When we came home I started to work in the kitchen.  First, I needed to print out my recipe for GF Stuffing.  The biggest mistake I made was checking my email.

OK, this is the 3rd time that I’ve tried to write about this.  But without getting into details, it appears that I will no longer be able to have a relationship with my niece.  My husband’s sister is mad at us because we got upset when they defaulted on something we co-signed on for them.  It’s horrible.   I love my niece dearly, she will be 3 in February, and now I won’t be having a relationship with her.

So then I cut up the veggies for the stuffing, I should not have used the food processor, because the onions and celery now look more like soup than chopped.  I toasted the bread for the stuffing, and cut it into little cubes.   I made an herbed butter to put on the Turkey,  I made up my own Poultry Seasoning, after reading what was in the poultry seasoning I bought I didn’t want it in my food.  I made the cranberry sauce, and the cheese cake.  My husband trimmed the asparagus and the green beans.

Then we went to the store and picked up our turkey, and Brussels Sprouts.

When we got home, we saw our neighbor, who was telling us the latest scoop on our HOA.  You would not believe the power trip these people are on.  They are breaking so many rules, fining people for nothing, and taking away rights.  I simply do not understand, we live in a small neighborhood (only about 85 houses), you would think we could all get along.  So this got me all upset too.  We feel so helpless.  There are so many ridiculous things going on in this neighborhood, and even if we could do something about it, right now we just don’t have the energy with everything that is going on with me.

Well, at least the cranberry sauce is done, and the cheese cakes are cooling.  Everything is pretty much ready to go.

Except me.  I’m absolutely terrified about tomorrow.  And all this stress from today is not helping things.  I don’t know how I’ll sleep tonight.  I’m happy I was able to go by the library today and pick up a bunch of books that were on hold for me.  At least if I can’t sleep, I won’t be bored.  I do so love to read a good book.

I just finished American Gods, by Neil Gaiman.  A very thought-provoking book, of course I’ve liked everything I’ve ever read my Neil Gaiman, so it was pretty much a given I’d like this book.  (my favorite of his is a young adult book, called Graveyard.  A great book!  of course Good Omens with Terry Pratchett is awesome too.)

Reading is one of my stress reducers.  What do you do to reduce stress?

Just a couple more days…

On By WendyIn Meniere's Disease2 Comments

On Wednesday I go in for Dr. Gray to look for my spinal fluid leak and give me a blood patch.  (I think it’s so cool that they can repair it with your own blood.)

I’m so nervous, excited, scared, apprehensive…….

I want this to work so much.  I keep envisioning my life without all the turmoil caused by Meniere’s, and all the pain caused by my migraines.  Do you think if I believe it enough it will come true?  Or am I just setting myself up for heart ache?  Either way, I’m trying to be prepared.  And I’m trying to stay busy until Wednesday, so I don’t think about it too much.

Today I went Christmas Shopping with my cousin.  I was so nice to spend some time with her.  After about 3 1/2 hours, of shopping, and lunch, and just visiting I started feeling off.  You know that feeling, I’m not quite at vertigo, but if I moved my head too fast I’d probably fall down?  So I took a Valium, and we headed home.  We made sure to just go shopping close to my house, just in case something happened Faith could get me home in a hurry.  Luckily, everything calmed down after I got home and started to rest and got a little something to eat.  I still hate it when things like that happen though.

Tomorrow, I’m going to be preparing for Thanksgiving.  I’m going to cut up all the veggies I need, toast the bread for my stuffing, mix up a herb butter to rub on the turkey, make the cranberry sauce, and make sure we have everything we need.  I’m also going to plan out a time schedule for all the dishes.  When each crock pot should be turned on, so that everything is done at the same time.

Thankfully, the friend who is coming for dinner doesn’t care if my house is messy.  I know Stuart will straighten up some, and I’ve begged him to vacuum.  The pet hair is out of control.  It’s funny, I said that to my husband, and he said he hadn’t noticed.  I see hair everywhere.

May you all have a very Happy Thanksgiving.

I will let you know how the spinal fluid blood patch goes, as soon as I feel like getting on the computer after the procedure.  Who knows maybe I’ll have pictures from the hospital.

I already have a lot to be Thankful for, but it would be nice if we had a whole lot more to be thankful for in a couple of days.

This is the time of year to remember to be grateful, and thankful  for all that we have, and remember those who are less fortunate.  May your Thanksgiving find you with much to be grateful for, and realize how much people are thankful for you.   Also, may all your Thanksgiving meals be scrumptious.