Tag: Meniere’s Disease

The First Signs of Spring

On By WendyIn Gluten-Free, Meniere's Disease2 Comments

I went to the library today and there were daffodils blooming in front of the building.  Oh, I love the first signs of spring.  On Monday it was so nice I sat outside for a while and just soaked up the sun.  It was so beautiful.  I know we will still have some cold days, but the warm days are peaking through, and that is making me happy.  Time to start planning our garden!

I’m sorry I haven’t posted in so long.  My stupid headache lasted for days.  I literally slept for nearly 2 straight days trying to get rid of it.  I’d wake up and would still be in so much pain, I’d just take more meds and go back to sleep.  It has been much better, but I still feel like I have a nagging headache, just not one that will knock me on my butt!

On Monday, I had a good day.  I actually cleaned the kitchen, and vacuumed the kitchen/breakfast nook and living room.  It looks so much better.  Our new vacuum is so powerful, it needs a different attachment on it for the carpet, it is so powerful the suction makes it hard to get it to move along the carpet.  But, boy you really should have seen how much dirt it picked up.  I never would have guessed there was that much in there.  (Or maybe you shouldn’t see it…now should I be ashamed?  Or delighted that I was actually able to finally get it up?  I think I’ll be delighted!)  And today I’m working on the laundry.  I really hate doing laundry, but I’m so happy I am just able to do it.

I even made candy on Monday!  I was going to take a picture, but I put it in the refrigerator, and it turned a funny color, so I didn’t think it was photo worthy.  However, my husband was thrilled.  I made mint chocolate Lego Blocks for him…he is a huge Lego fan, and loves mint chocolate…no silly hearts for him on Valentine’s Day.  : )

We even made it out to dinner.  I had planned to cook, but we hadn’t made it to the grocery store, so out to dinner it was.  We got there early, so no waiting.  Then we spent the evening grocery shopping.  How romantic, right?  We did come home and have a nice quiet evening together and it was very nice.

So, how am I doing physically?

Better.  But the headaches aren’t good.  However, I think they are mostly hormonal.  I’ve been having a very light period, but it’s the first one I’ve had in months.  Also, I’m trying to go off of birth control pills.  (no I’m not trying to get pregnant, I just want my hormones to be my hormones and see where I’m at with all of that.)

I still start feeling worse in the evenings.  Dr. Gray is talking about testing my pressure to see where I’m at, I think that’s probably a good idea.

I did see my regular MD this past week.  (did I mention that before?  I should probably re-read my last post, I was in so much pain when I wrote it I really don’t remember much about it.)  Well, if I haven’t mentioned it we found out that I have a B-12 deficiency again.  I was getting shots last year, then I went to oral supplements.  It looks like I don’t absorb the oral supplements or B-12 in my diet very well.   A lot of people with celiac disease don’t.  So some of my icky feeling symptoms could very easily be caused by that.  My thyroid was also a bit low, so there we go with more of the same symptoms.  Fatigue, dizziness, GI symptoms…  It’s hard to know what is causing what.

My nutritionist started me on a diet to help regulate my blood sugar.  It is mainly just meat and veggies with very little fruit.  I am to make sure I have protein and fat every 2-3 hours.  I’m also to drink lots of broth.  I’ve been drinking the broth for a few weeks now, and it really seems to be helping my digestion.  I’ve actually had come normal bathroom habits.  I still have some diarrhea, but it is less that it was, anything that isn’t diarrhea is less that it was.  (I know icky subject.)  If I could just start losing some of this weight I would be a very happy girl.

The last couple of nights I’ve had a hard time sleeping.  I’ve read 3 books this week.  One was pretty short, but still, that is just insane considering I don’t read in the day time.  You can really tell when I have insomnia, I go through books like crazy!  I read Counterfeit Magic by Kelly Armstong, Three Bedrooms, One Corpse by Charlaine Harris and Ghost Town by Rachel Caine.  All of these books are parts of series.  Sometimes it drives me crazy that I get all caught up in a series, other times I can’t wait for the next one to come out.  I was disappointed in the first book.  The second book is a mystery, this poor girl one of those people who always seem to have people murdered around her, but it was cute.  The last book, was really good.  I was impressed that this author was able to come up with such a unique story on book 9 of this series, I felt like it was getting a bit same old same old with the last book, but this one really switched it up.

Well, that’s all for today.  I hope you are all getting your first days of spring and are enjoying them as much as I am!

Oh My Aching Head!

On By WendyIn Meniere's Disease3 Comments
Oh My Aching Head!

I got my first headache since the patches yesterday.  It was a pretty bad one, but when I took some meds and a short nap, it went away.

Last night when I was trying to go to sleep I was all stuffy.  I think I’m having allergies.  I woke up this morning around 8am with a horrible headache, I went back to sleep for a little while (read 2 hours on and off here) and when I decided I would just get up I swear my head hurt even worse.

Today it’s on the left side of my head.  I feel like there has been a rod inserted in my left eye and it’s coming out the lower part of the back of my skull, and it’s rotating.  At first I didn’t take anything, I thought I’d eat something and drink a bunch of water first to see if that would help. Nope.  Then I took a Topamax, to see if I have high pressure.  Nothing.  Then I took a Maxalt (migraine reliever). Nada.  Finally, I took a Hydrocodone. I can’t really open my left eye now, and I’m sick to my stomach.  I just took a Phenergan to see if it will help with the nausea.

So what is causing this horrible headache?  Allergies?  Hormones? (I’m on my period.) or is my pressure going too high?

I just really wish it would go away!  I really need to do some house work, I can’t tell you the last time my house was vacuumed….maybe Christmas?  No wonder my allergies are bad.  : )  I got a new vacuum for Christmas, anyone want to come try it out?

Feeling Better

On By WendyIn Medical Tests, Meniere's Disease6 Comments

 

Happy as a Monkey (I did this painting for a friend's nursery.)

It’s been 12 days since the Cerebral Spinal Fluid Patches, and I am feeling better.

 

I still feel better in the mornings, and then fade in the afternoon.  By the evening I often just feel a bit icky.  Kind of off kilter.  (you know, a little off-balance, not much, a little nauseous…)  However, over all, I do feel much better as far as the Meniere’s is concerned.  Not so much with my GI stuff, and my hip pain, but that is a story for another day.

Stuart talked to Dr. Gray a couple of days ago and he told her how I felt so much better in the mornings, then as the day goes on I start to feel worse again.  She said that is a sign of low pressure.  She suggested I come in and have her patch the last leak.  They didn’t patch them all because they were afraid they would spike my pressure, and/or cause it to raise and stay too high.  We decided to wait a few more days to see how I’m doing.  I’m thinking I should probably stop taking Topamax all together (after discussing it with Dr. Gray) before I go in to have the last patch.  Topamax is used to help control migraines, and it also treats bi-polar disorder, however, it can also be used to lower your spinal fluid pressure.  Since I’m taking a small dose every day, I think it’d probably be a good idea to get off of it if I already have low pressure.   : )  Then we will see if I still need to go in for the last patch.

How much better do I feel?

  • I haven’t taken any Valium or Phenergan in days.
  • The dizziness and feeling of being off-balance (disequilibrium) is minimized.  In the mornings I don’t feel it at all.
  • No headaches.  (well, I had a little one today, but I think it’s because I didn’t sleep well last night.  No migraines though!!)
  • Hearing is staying pretty steady in my left ear, I can hear pretty good out of it, but some frequencies are dull.  My right ear is still pretty gone, but in the evenings the tinnitus is much worse in that ear.

So what do you think?  Sounding good so far?

I learned from my last experience with the blood patch that I don’t want to jump the gun and think I’m ok before I have a long while feeling that way.  I’ve been conversing with another patient of Dr. Kaylie and Dr. Gray.  She has high pressure (and she doesn’t have Meniere’s she has another vestibular disorder).  She felt “normal” for over 2 months then the meds stopped working and her symptoms started to return.  It was so hard for me after just 10 days of feeling normal to go back to having the symptoms again, I can’t imagine how she must have felt after 2 months!  She is still being treated, and there is hope she will get back to that “normal” state too.  Just as we are hoping I will.

This time I’m looking at things differently.  Before, I looked at this as a possible cure.  I don’t know if I want to think of it that way.  That would mean that it couldn’t come back, and we have seen that it can.  I have finally come to accept this disease as a part of me, that I have to live with for the rest of my life.  I will always look for the best way to deal with it, and right now I think this treatment is it, for me.  However, I know that the Meniere’s is still there.  If something gets off-balance again, it will all come back.  One of my lovely readers advised me to not fight it so hard, but walk with this disease and accept it.  I’ve taken her advice.  It will never be my friend, but it will always be a part of me, and I can deal with that (at least I’m learning to).  It has made things much easier since I started thinking this way.

Another thing I’ve been thinking about a lot lately.   Friends.   I feel like I’ve lost touch with so many of my friends since I started getting really sick.  (I say really sick, because I’ve been sick for a long time, but I was functional.  This past 2 years have been much harder.)  I was taking that very hard.  But I really needed to look at it and realize, that most of it had nothing to do with me.  Most of my friends also had children over the past 2 years.  I can’t drive, and their lives are so busy with their new families they just don’t have the time to make for me.  And that’s ok.  I’m still here.  You know, even if it is because they don’t want to be around a sick person, that’s ok too.  I’m not going to take it personally.

I decided I’ve had some really great friends in my past, and I love them and want the best for them.  We may not be in touch as much right now, that’s ok.  We may be more in touch in the future and that would be great, if not, then it wasn’t meant to be.  I will still love and cherish the time we spent together.  I know there will be new people in my life, and in theirs.  We grow, sometimes we grow apart, sometimes we grow together.   Sometimes we simply grow up.  I think I’m doing a lot of that right now.  (at 47, you would think I was all grown up….but I’m learning new things all the time, especially about myself.  And heck, I don’t think I’ll ever see myself as a “grown-up”. *shudder*)

8 Days after…still waiting…

On By WendyIn Medical Tests, Meniere's Disease3 Comments
image courtesy of http://www.artbywicks.com

I know I haven’t been posting as much as I usually do, and I haven’t been talking about my progress after my Cerebral Spinal Fluid patches, but I just haven’t felt all that different.

I wake up in the morning, and most mornings I feel pretty good.  (that’s not unusual)  I continue to feel a bit off balanced all the time.  As the day goes on I seem to start feeling a bit worse.  I don’t really know how to explain it.  It’s kind of like I’ve always felt, but different.  My head feels full, and I feel like if I moved my head too much I’d barf.  I feel slightly nauseous most of the time.  If I get hot, it gets so much worse.  I’m just not sure what it all means.  Stuart tells Dr. Gray and she seems content.  She says it’s good that I’m not having headaches.  I’m happy about that too.   I sure do wish I would see more improvement.

I do feel like my hearing is a bit better in my left ear, but I still have trouble hearing certain frequencies.  I don’t realize just how much I rely on closed captioning until I don’t have it.

So, my progress so far…not too much.  But I haven’t had any full blown Vertigo attacks!!  That says a lot.  One time I felt like I might start having one, I took a pill to reduce my pressure (like Dr. Gray advised) I was still having symptoms 30 mins later, so I took another one…and shortly afterward I couldn’t stand it any longer and took a Valium and Phenergan.  I started feeling better, but I’m not sure what caused it.

I had a Gastrointestinal CT scan on Thursday.  It was not a fun experience, but it wasn’t the worst I’ve had.  I think I had a reaction to the Contrast they had me drink before the scan.  I had horrible diarrhea starting before I started the 3rd cup.  (you have to drink 3 cups of this stuff, they tell you that, but they don’t tell you the cups are 20 oz.).  Well, they almost had a mess to clean off of their expensive machine.

The other bad thing about the test.  They were also supposed to put in an intravenous dye.  I told the nurse on the phone the day before that it is very hard to find my veins.   So she took me back in the very cold CT room and tried to start and IV, she looked at my arms and said, “Oh, yeah, you told me this would be a challenge.”  I said, “Yeah, I don’t know why people never seem to take me seriously.”  She said she did, she just forgot.  She then said she could see any veins, and she couldn’t even feel anything.  I said, well, it’s very cold in here, they had to use a hot pack last week to help out.  Well they didn’t have that.

So after 5 times of her trying to find a vein, and each time she would say something like, “I don’t feel confident about this, but I’m going to try.”  I felt that was not the thing to say to a patient.  She was very concerned for my comfort, but she was not confident in her job.  One time when she said that and was about to stick me (try number 4 I believe) I turned to her and said, “Honey, You need to get some confidence, you have to believe you are going to do this or you will never be able to do it.  Take control, tell that vein who is boss!  And just do it!  Don’t worry so much about hurting me, I’ve had much worse.”  She just said, “You are so funny.”

OK, well, I do believe, if you believe you are going to fail, you will fail.  It was obvious she believed she was not going to be able to do this and she never did.  Finally, she had to call the radiologist and tell him that she couldn’t do it, he said fine.  We just wouldn’t have that part, if they needed it later, they’d try again.  I said, “with someone else giving me the IV.”  : )

Luckily, it doesn’t seem to be a need for them to do that part of the scan.  Yay!

The results?  I have a Kidney stone!  Well, that was a surprise.  It’s small and not in a place where it’s causing any harm right now, but still, A Kidney Stone…crap.  I just wouldn’t think it possible with as much water as I drink.  Oh well.

The doctor also told me that I have a fatty liver, I don’t have liver disease though because my enzymes aren’t high.  So it’s just fat there because I’m over weight.  I told her, “Well that doesn’t surprise me since I gained 40 pounds in about 2 months, that is one of the reasons I came to see you.”  She said, “A low-fat diet….yadda, yadda….”  I told her that is what I was doing before all this started…she said I still needed to do the breath test to determine if I’m lactose or fructose intolerant.  And then come in for another office visit to reassess.   I told her I’m working with a nutritionist.  She was great!  (I thought, then why didn’t you suggest it?)  Can you tell, I’m not impressed by this digestive health office?

She just keeps telling me to take fiber.  Well, that didn’t work.  I tried.

I’m glad my nutritionist doesn’t believe in a one size fits all philosophy.  She is working with me to figure out the best diet for me, and how to get me healthier.  One step at a time.   Already working with her, my diarrhea has gotten better.  I’m still having it sometimes, but not every day!  Isn’t that exciting??

I’m still hopeful that the patches will work.  Again, one step at a time.

Tomorrow is my hubby’s birthday.  I gave him a gift certificate for a 90 minute massage.  He had it yesterday.  It was so nice to be able to pamper him for a change.  And I’m going to watch the Super Bowl with him.  (I’m not a sports person)  We’ll have fun.  Gluten Free pizza.  Possibly wings. Oh, and Ice Cream from a local Dairy.  (I won’t be having the ice cream, I’m not eating sugar right now, but it’s a great treat for Stuart. Perhaps I’ll put a candle in it.)

Please Don’t Judge Me

On By WendyIn Disability, Meniere's Disease6 Comments

This is something I read a long time ago that I have shared with friends and it seemed to help some understand this illness.  I don’t know who wrote it, I wish I did, I’d love to thank her or him.   (I recently found out…see comments, 9-5-2012….that Tina McDonald is the author of this essay….Thank you Tina for speaking for us!)

Please Don’t Judge Me

Author Unknown

Life with Meniere’s Disease : Before you judge me on one of my good days, you need to understand what one of my bad days is like.

Tinnitus – imagine having a headache caused by a fire alarm ringing or a bee buzzing in your ear continually for a long period of time. You can’t hear anything but that fire alarm or bee – It drowns everything else out.

Vertigo – Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off. Now imagine that with these two things, you’d be dumb enough to get on one of the super roller coasters that does loop-de-loops or the amusement park rides that spin in two different directions at the same time. I’m not that dumb, but unfortunately I have no choice in feeling these sensations.

During one of these vertigo attacks that can last from several minutes to several hours if not days. I can’t keep food or water down, I can’t walk, and in order to get out of bed to go to the bathroom, I have to crawl like a baby on my hands and knees. The movement makes me so ill, if I’m able to crawl back to bed, I’m covered in sweat from exhaustion. Otherwise, I keep a pillow and a blanket at the bottom of a linen closet in the bathroom so that I can pass out lying across the bathroom floor. I end up sleeping for days after one of these attacks, only getting out of bed to go to the bathroom or to get something to drink, if I think I can keep it down. I have to call my family to see what day it is when I wake up. That is, if I can hear.

You see, this disease while playing havoc with your balance and equilibrium, also reeks havoc with your hearing. It wouldn’t be so bad if the hearing loss was constant and predictable. But no, one day I can hear conversation fairly OK, and the next I can be virtually deaf, then the next day I can hear again. The hearing loss can fluctuate, but is usually progressive, and many with the disease end up severely hard-of-hearing or deaf.

Even on a daily basis, your mind is so confused by the signals it’s getting from your ears that your balance sucks. You run into things constantly because you can’t balance well enough to avoid walking into things, or your mind is telling you the object is a couple of inches from where it really is. I don’t know whether to laugh or cry when someone teases me about being such a klutz. I could make the Keystone Cops look graceful.

I also have days that my coordination just doesn’t seem to be together. I’m carrying something, and all of a sudden I drop it because my brain seems confused as to whether my hand is really attached to my body. I sometimes miss a step and fall because of the feeling that my legs are not quite part of me and I have to focus on them to realize they are there. Apparently this happens because the part of your brain that recognizes parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I’m not quite sure which), and you can lose coordination.

Ironically, the few high frequencies I don’t seem to have a hearing loss in can sound extremely loud, unbearably so. When a baby cries, an alarm goes off, or a microphone gives off feedback, I’d be willing to climb up a wall to get away if I thought I could make it. This symptom is called recruitment.

The disease also plays tricks on your vision. For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement. Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times. Your eyes tend not to be able to “track” movement at the same speed, giving you double vision, and a bad headache.

You can get confused easily and your memory and concentration aren’t reliable. It’s what some people with the disease refer to as “brain fog”. Many of them originally were afraid that they may have a brain tumor or Alzheimer’s because it can sometimes gets so bad. Finally they find either a doctor whose very knowledgeable regarding the symptoms, or they happen to ask someone else with the disease, and find that this too is a symptom of this blasted disease.

Now try to imagine living with this disease never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination, recruitment, disequilibrium, or “brain fog” is going to hit, or how bad it will be. At least with being drunk or riding an amusement park ride, you know what’s causing it, and you can make the choice not to do it again. With this disease, there’s very little warning if any for these attacks, you don’t know what’s causing it, and there’s no cure – only devices, surgeries, and some medications that can somewhat help alleviate the symptoms. And some of the surgeries are so radical, you think they came from a horror movie about a mad doctor. My ENT surgeon won’t even perform any more surgery on my left side, since I have the disease in both ears. He’s concerned about what would happen if my right side became worse than what my left side is now.

Understandably, anxiety and depression seem to go hand-in-hand with Meniere’s for many sufferers. We often ask how much worse can this disease get? For some strange reason, doctors aren’t very willing to give out worst case scenarios.

Now decide if you think I’d be able to do the same things you do on as punctual and regular schedule. For me, there’s no way. I’m being up front about my limitations. I try the best I can at living up to my full potential. Could you if you were in my shoes? They think now that Van Gogh suffered from this disease, and he cut off his own ear trying to escape it.

Yet on my not-so-bad days I may look like a totally healthy, able-bodied person. You ask me “why can’t you bend down – pick it up – lift it – drive – get a job – walk without a cane” It’s because I know these things can either bring on an attack – I couldn’t do them on a regular schedule because of the symptoms – or if I did do them, I could put myself and others in jeopardy if I should have an attack. You have to realize that with my friendship, love, dedication, and loyalty comes the fact that I can’t decide when I’m going to have a bad day, and the more stress I’m under, the more likely I will have a bad day.

So, please don’t judge me unless you’ve been in my shoes.”

(Of course, part of this is personal to this person’s situation, but it hits pretty darn close to mine.  I don’t walk with a cane, because I don’t feel like it helps.  I do find that a walker helps when I get dizzy.  It stays steady.  A cane just falls with me.  And of course, you all know that I do have some hope that things are going to get better because of fixing the CSF imbalance.  However,  It doesn’t look as if my right ear will regain it’s hearing and it looks like I will always have tinnitus in that ear too.  I’ll be very lucky if that’s the only symptoms that remain.)

I hope this little essay helps you in some way.  If you are a friend or family member of mine, perhaps it will help you understand me a little more.  If you are a fellow sufferer, perhaps it will help you in explaining things to others.

Recovering..a little slower this time.

On By WendyIn Meniere's Disease2 Comments

I was starting to get a little worried because I have been having some dizzy spells, and my hearing isn’t up to par.  Plus, I’m just really wiped out.

I knew Dr. Gray said to expect gradual improvements from these patches, instead of the instant improvement I had with the first patches, but I didn’t know how gradual.  Luckily, Dr. Gray called yesterday to check on me and she told Stuart it would take 7-10 days before I saw the same improvement I saw with the first patches.  (I thought it was kind of ironic that it may take 10 days before I see improvement this time, and last time I only had improvement for 10 days.)  I know it’s just coincidence , but I still thought it was kind of ironic.

So for now, still just resting.  Hardly any pain at all today, I feel like I’ve been getting over a pulled muscle.  Oh, and that cold I felt coming on…well, it doesn’t seem to be there any more.  I’ve been sniffling a little, and I’m very tired (but that could just be recovery, I think), that’s really it.

Yesterday I was so tired I got up around 10 or 10:30am, Stuart made me a lovely breakfast, and I was so tired that I laid down again by 12:30pm and didn’t wake up until 5pm!  I completely missed the only warm day we’ve had.

Stuart has been pampering me.  He’s been taking care of every meal.  Helping me with my every need, or want.  And we’ve been having the best time in the evening doing crossword puzzles.

Tonight, spaghetti and meatballs.  Yum.

Recovering and Our Magical Gnome

On By WendyIn Life, Meniere's Disease2 Comments

First I’m feeling pretty darn good today.  I’m not dizzy!  That is saying A LOT!  I have a ton of energy, unfortunately I can’t do anything with it.  I keep trying to do things and I go Ouch, Ouch, Ouch.  It’s not bad, but dang it all my back feels like someone beat it up.  And I guess they did.  : )   However, I’m not as sore as I was last night, so I’m healing fast.

No headaches.  That’s a good sign.  That means my pressure isn’t spiking.

The only thing I’m not happy about is that my hearing isn’t all that I want it to be.  (Yeah, I know, I expect miracles.)  I don’t expect my right ear to clear up, but the tinnitus in my right ear is being pretty relentless.  And my left ear isn’t as clear as it was yesterday.  It’s just a little dull.  I can hear OK.  But if I put my fingers up to my ear and rub them together I don’t hear that rustling noise.  I think my pressure is just leveling out.  It may be just a smidgen too high right now.  We’ll see.

But mostly, I’m doing great!

Now for Story number 2. Our Magical Gnome.

 

Mr. Gnome

We have a little Gnome that sits in the little garden section in front of our house.  Right now it’s just mulch, but during the Spring, Summer, and Fall it’s covered in herbs and flowers and such.  Mr. Gnome sits out there and watches over our little garden and takes care of things.  (like Gnomes are supposed to do.)

The strange thing about this Gnome is that he keeps moving.  I put him in one place, and I’ll go out and he’s in a different place in our little patch.  I’ve asked Stuart if he moved him, and he denies it.  He also looks at me like I’m a little crazy.  This latest time, we had a storm last week and Mr. Gnome was blown over.  I haven’t been feeling well enough to bend over and pick him up without getting dizzy.  Today, I went out side and there he is standing right in the middle of the little garden patch looking out over the yard, guarding us against … oh, you know the things that gnomes guard against.

(I’m thinking the little boy next door, who I just love to pieces, has been watching out over Mr. Gnome.  But I could be wrong.  It could be that I really do have a Magical Gnome and Mr. Gnome is watching out over all of us.)

Maybe I’ll have to take him in to see the upcoming movie Gnomeo and Juliet.  He’s such a good little gnome and everyone deserves a break every once in a while.  (but who knows what he’s really doing out there when I’m not looking…hummm.)

To answer your question, No, this is not the pain killers talking.  I’ve only taken one today.  I just think gnomes are kinda funny.  (maybe I haven ‘t taken enough pain killers??)

A New Patch

On By WendyIn Medical Tests, Meniere's Disease2 Comments

I went in to Duke today at 10:30am, early for my 11am appointment, and was taken straight back to see Dr. Gray.  (Dr. Linda Gray Leithe, neuroradiologist at Duke University Hospital.)

At about 3:30pm I was finally on my way home….it was a long day.

Tisseel

First, we went over everything and I signed all my consent forms.  After talking Dr. Gray was pretty sure we’d find out that my pressure was again low, that the blood patches didn’t hold, and that she would be patching me up again today, but this time she was going to be using Tisseel, a surgical fibrin sealant indicated for hemostasis and tissue sealing.  It looks like epoxy.  It comes in a double tube plunger and it mixes when they insert it.   (kinda cool huh?)

So I went through the same thing I went though when I got the blood patches, but I didn’t have to have another myelogram.  They just used the information from the first one.  I don’t have to be as careful after this procedure because this sealant doesn’t have to clot around the leak, it is sealed now.  However, since they put less stuff in I will feel the results more gradually instead of feeling it as quickly as I did last time.

I have noticed I can tell that I am hearing better.  (the TV was too loud! hahaha)  I’m less dizzy that I have been, but I don’t think I’d risk closing my eyes and shaking my head around yet…maybe tomorrow.  : )

Dr. Gray said I could walk around some tomorrow, but as sore as I am right now, I don’t know if much of that is going to be happening.  It’s not horrible, but dang my back hurts.  I hate taking pain pills, but I think I will be taking a couple tonight.

There is still a risk that my pressure may spike tonight, but I have meds to take care of that if it happens.  So far, no headache, so no sign of increased pressure.

When I left Dr. Gray shook my hand and told me that she hoped she wouldn’t need to see me again!  I must say, as much as I like her, I also hope I don’t have to see her again either.  She is such a great doctor.  You rarely meet a doctor who is so up beat and genuinely loves her job.  When you are with her you can’t help but catch the enthusiasm and hope that just flows off of her.

Here’s Sandy coming to check on my recovery:

 

Sandy checking on me.

Tonight my darling husband went and picked up a gluten-free pizza from Mellow Mushroom.  (what a treat!)  Now I’m going to relax on the couch and watch cartoons.  Maybe, we’ll turn on a movie, but right now cartoons are making me happy!

Right now I’m not feeling all that great.  I think the meds aren’t sitting well, and I didn’t sleep very well last night.  I sure hope I start feeling better soon.

I’ll let you know how I’m feeling tomorrow.

Thank you, everyone, for being so very sweet and sending me wonderful wishes.  I really do appreciate all your thoughts and prayers.

*fingers are crossed*

Puncture Tomorrow – Cold Today

On By WendyIn Medical Tests, Meniere's Disease6 Comments
A Zen Moment. (a commissioned painting by Wendy Holcombe)

Tomorrow I go in to see Dr. Gray again for another lumbar puncture and possibly having some spinal fluid leaks patched.  They called today and moved my appointment up one hour so my lumbar puncture is at 11am tomorrow instead of at noon.  I need to be there at 10:30am.  Yay, that means I will be able to eat sooner!

Today, I woke up with a cold.  It’s not bad yet, a slight sore throat, nose is running, don’t want to stay awake, head hurts, all brain foggy, achy all over…you know.  I’m a little worried about tomorrow though.  You have to be very still on the table when you get a lumbar puncture (after all, they are inserting a needle between 2 of your lumbar vertebra), what if I sneeze?  Don’t know why I’m worried about that, I’ve only sneezed twice today.

I’m glad I have the appointment tomorrow.  I’m really ready to see if we can’t get this figured out, but I am a bit nervous about having a cold.  Even if I don’t sneeze or have the need to move, I am not going to be comfortable on that table, after all the table is hard and I already ache all over.  However, I do want you all to know that a lumbar puncture is not like it used to be, they do not hurt.  The only pain I really feel is the pain killer they inject first and it’s just a little sting.  Then I feel a little pressure.  But it’s not scary, and it doesn’t hurt.  So no worries.  I’m just a little apprehensive because I don’t feel good.

I will have to find a “Zen Moment” to keep myself calm and still.  (actually, I just didn’t have a perfect picture for this post, so I thought I would shamelessly post one of my own paintings.  *smile*)

I may be a tiny bit worried about having a cold during the procedure, but really, I’m mostly excited to get this over with.  (I really hope they are planning on doing patches tomorrow and not just doing a lumbar puncture.  Truthfully, I just don’t know.)

Words on Wednesday Night

On By WendyIn Meniere's Disease5 Comments
I'm a Pet Bed.

I’ve found out that my pet’s believe I’m their very own pet bed.

As soon as I get comfortable, if I’m on the couch, or in the bed, it doesn’t matter.  If I curl up, Max (the huge cat with many toes), and Sandy (the lovable old dog) will soon be climbing on top of me to find a comfy bed of their own.  It’s really very sweet.  Until, I need to go to the bathroom in a hurry and I’m weighed down by about 40 pounds of animals!  : )

Something very odd happened yesterday.

I was in my husband’s office upstairs, I was standing beside his desk talking to him and had my hand on his desk to keep my balance.  I started to turn and my body decided it was just going to keep going backwards.  Stuart quickly reached out and grabbed me before I hit the floor, and I ended up in his lap.  (where I had intended to go in the first place.)  But for some reason I just busted out laughing. I thought this was just so funny.  The sensation of me falling backwards for no real reason, other than my screwy balance, just made me laugh and laugh.

Either I’m going crazy, or I’m taking things much lighter than I used to.   Of course, if I had hit the floor I probably wouldn’t have thought it was nearly as funny.