Oh What a Night! (and not in a good way)

On By WendyIn Meniere's Disease5 Comments

I had a horrible attack last night.

All day yesterday I was following a weird diet because I was supposed to have a hydrogen Breath test today (this checks to see if you are digesting your food properly), then I was supposed to have a breath test for Lactose Intolerance and Fructose Intolerance.  So all day I couldn’t have dairy, soy, fruit, most veggies (I could have overly cooked or canned Asparagus, Green Beans, Spinach, Carrots, and baby Okra.  Ewww, canned veggies.)  I could have lot’s of carbs, but I had to limit them to 30grams per meal.  It was crazy.  I could eat meat, but I don’t usually eat that much meat.  So yesterday I had more meat than I usually eat, and some canned veggies…I know I said ewwww, before but…ewwww.  The Asparagus was slimy and had too much sodium, the Spinach tasted like dirt, I didn’t even try anything else.  Just too icky.

Around 8:15pm I started to feel a little spinny.  Stuart got me a Valium and I thought that would do it, but then it started getting worse, I took a Phenergan, and a Diamox (this is the pill that lowers your pressure), I thought perhaps since I had more sodium than usual yesterday it might have spiked my pressure.  Well, I think taking that pill may have been a huge mistake.

The spinning got much worse, and no amount of trying to keep myself calm was working.  Then came the heat, I know when you start to get really hot, I’ll probably be throwing up soon.  Well, first diarrhea hit.  Yes, I was spinning, about to toss my cookies and I had to run to the bathroom.  Thank God for my husband and my walker.  I made it back to the couch, and started throwing up.  For over 2.5 hours I was throwing up, long past the point of anything being left in my stomach.  And the pain…oh the stomach pain.  The burning and gnawing feeling, and all my muscles working in over time. I was shaking uncontrollably.  I was to the point where I was choking, and couldn’t breathe at some points. Everything was pushing out, and I couldn’t take a breath in.  I hate to admit this, but I couldn’t hold my water at one point when I was throwing up, all the muscles were just not working like they should.

I realized last night how much this would kill me if I had to watch my husband go through it.  He works so hard to make me as comfortable as possible, and allow me to still keep some of my dignity.  He keeps a clean bucket for me to throw up in and switches out the moment there is a break so I won’t have to smell it.  He even puts a little mouth wash in it in case some of the smell lingers I won’t smell it.  He cleans me up, keeps wet wash cloths close by, and holds me tight and lets me squeeze his hand when things get bad.  When I wet myself he simply put a pad under me and when things calmed down he helped me get cleaned up.  He even puts in the Phenergan suppositories for me.  Every time this happens I am so amazed at how well he handles it, you can tell it’s tearing him apart that he can’t make it stop and help me more, but he tries so hard to do everything he can, and tells me that he is just grateful that he can be here for me.  I don’t know what I’d do without him.  I feel like he does so much for me, and I’m just dead weight.  I feel like I’m worthless, I just don’t know how to make things better.

I know, I have hope that things will get better.  I will once again be able to get off of this darn couch.  But today, I just feel awful, and I’m wallowing a little.

I realized the other day that if/when they do make me better, I don’t have any skills to do anything.  I thought about going back to school, but I’ve been out for so long that none of my credits would count now, and since I haven’t been working they can’t take my experiences there into account.  I just don’t know what I would do with myself.  But I would like the opportunity to find out.

Sorry this is such a scattered post.  I usually feel better than this the day after an attack, but I barely have the energy to stand up, and can’t think about walking without my walker.  (of course, I’m still running to the bathroom, but there is so very little coming out.)  I’m pretty miserable today.  I hurt all over, my head hurts, my chest, stomach, bowels….I just feel bad.

So lot’s of Gatorade, and bland foods.  Snuggling on the couch with my dear sweet dog, and sometimes the cat joins us too.  Perhaps I’ll finish the book I’ve been reading.  But for now, I think I’ll take a nap.

Thanks for listening to me rant.  I feel better already just getting it all off my chest.

I have a Freight Train in my Head!

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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

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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

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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.)

Gluten Free Frenzy is having a HUGE Giveaway!

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25 Days of Christmas Giveaways, Gluten Free of Course! Event…FREE, EASY way to snag some gluten free swag!!! 🙂

25 Days of Christmas Giveaways, Gluten Free of Course! Event
When: Dec. 1-31 2010

Where: www.glutenfreefrenzy.com

What: During this AMAZING event we will be doing gluten free (and much more!) giveaways EVERY day!!! We know that gluten free living isn’t always cheap and especially at this time of year we thought all of our amazing readers deserved a little gluten free TLC!

A new giveaway will be introduced EVERY day but all giveaways will be open through the end of December. Entries for these giveaways will be one or two EASY steps. Winners will be drawn the 1st wk. of January.

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….

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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.