What’s this thing called “Vertigo” anyway?

vertigo caught in motion
me during a vertigo attack – photo by w. holcombe

There are different definitions for the word “vertigo” (noun – ver·ti·go \ˈvər-ti-ˌgō\)

Webster’s Dictionary defines vertigo as:
a feeling of dizziness caused especially by being in a very high place

1a : a sensation of motion in which the individual or the individual’s surroundings seem to whirl dizzily
1b : a dizzy confused state of mind

On American Family Physician’s site I found a great article, Dizziness: A Diagnostic Approach.  It describes all kinds of Dizziness, the different causes and treatments.

In it they describe vertigo as : (A) False sense of motion, possibly spinning sensation.

I could go on and give you different definitions, many would be a bit different from others, but the main thing they have in common, one feels as if they are in motion.

Vertigo is not just dizziness, it is a type of dizziness, just as lightheadedness, and disequilibrium are but it is more than what most people consider dizziness.

Vertigo is the sense of motion.  Most often it includes seeing a spinning sensation, it also include other feelings of motion including, a sense of falling, rising or being jerked in one direction.  These are not encountered as often as rotational vertigo. (Understanding Vertigo and What to do if you have it. – The Washington Post – 2014)

I thought I’d take this opportunity to tell you, as best I can, how vertigo feels to me.

I have rotational vertigo (seeing my surrounding spin around), and motion vertigo (I often feel like I’m moving when I’m not.  I will feel like I’m suddenly free-falling, or being jerked around.)

The best way I know to describe rotational vertigo is to give you an example most people understand.  Remember when you were a kid and you used to spin around and around until you fell down seeing the world spin around you, (if you don’t remember this, or have a loved one with vertigo, I encourage you to do it now to have a sample of what we see).  Now that you have that image, imagine seeing that but it doesn’t stop.  When you just spin around the spinning sensation stops in a few seconds, for me it can last a few minutes to a few days.  The average is about 4 hours.  When I have this type of vertigo attack I often get very sick.  Imagine motion sickness times 1000.  I will throw up for hours, it can get so violent that I will lose control of every bodily function.  It is horrific.

I used to have other motion vertigo every once in a while, now it comes much more often.  I often feel like I’m in motion when I’m not.  I’ll feel like I’m on a boat, I’ll even feel like I’m walking around while I’m sitting still.  In the past year I’ve started having vertigo that makes me feel like I’m being thrown around the room (the first time this happened I thought I was dying, after an Ambulance ride and spending over 9 hours in the Emergency Room I was told this is a different form of vertigo.  (freaky)  I’ve also started having feelings as if I’m free-falling, I can only imagine it’s how one would feel if they stepped into an open elevator shaft.  This is one of the most frightening things in I’ve encountered.

Rotational Vertigo is not always at the same speed.  Sometimes I see my surroundings spinning by in just a blur, during these attacks I always get sick.  This will include hours of vomiting and sometimes I will lose all control of my bodily functions.  It’s horrific.  Other times my surrounds will spin by at a much slower rate.  After having rotational vertigo for so long many of my attacks are not as horrific.  I don’t panic now.  I will stay as calm as possible and just watch the world spin by, mostly I’m really bored.  This is the time when my mindfulness practice really comes in handy.

I’ve learned if I focus on something about 12 – 18 inches from me I often don’t see things go by quite as fast.  If the spinning isn’t too fast I will watch TV reading the captions.  For some reason if I concentrate on the captions the vertigo slows down.  This does not happen if I try to read anything else, that just makes me sicker.

I used to throw up no matter what.  I may have mentioned this before, maybe not, but I’ve had 2 doctors tell me that if medicinal marijuana were legal they’s prescribe it for me.  So I’ve tried it to see how it helps.  I can honestly say that I believe it has stopped me from going to the ER many times for dehydration.  It stops me from throwing up.  That is amazing to me.  I very rarely throw up now.   It can also calm down an attack if I use it fast enough.  (if you’d like to know more about how I use this to help, feel free to ask, I will say that I never feel high, I use very little, just enough to help me.)

Now, do you understand more about what Vertigo is and what my vertigo feels like?

If you suffer from vertigo, do you have similar experiences or is your experience different?

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The Crud

sick cartoon

The chronically ill get sick, just like everyone else.

I have the crud.  A sniffling, sneezing, aching, coughing, stuffy-head, fever, so I can’t rest cold, and unfortunately NyQuil doen’t help.

When you have Meniere’s disease you can get really sick when there is too much fluid in your head.  I haven’t talked to anyone who has Meniere’s Disease who doesn’t have more symptoms when they have a stuffy head.  No one knows what causes the symptoms of Meniere’s one main theory is that they result from increased pressure of an abnormally large amount of endolymph (fluid) in the inner ear.  Doctor’s usually put us on a low sodium diet and often diuretics to reduce the fluid in our ears.  When anyone has a cold they have a lot of fluid building up in their head; their nose gets all stuffy, and their ears can feel full: put that in a person with Meniere’s and you have one wonky person.  Right now, I’m one of those people.

Nothing I can take can make all that fluid go away. Yes, I can take a few things to help “dry things up”. but I’m sure all of you have had a cold, and you know that no matter what you take you will feel a bit stuffy and all full in the head.

My symptoms are exacerbated.

  • My tinnitus is going crazy, as I’ve said to Stuart: “Really? You Can’t Hear That??” The noise will be so loud at times I could swear my body is vibrating with it.  Other times, the pitch is so high I will suddenly buckle over from the pain.
  • The fullness in my ears feels like there is wet cotton in there and it just keeps absorbing more and more fluid, soon it will be dripping out my ears I’m sure.  (this won’t happen unless I get a bad ear infection, it just feels like it.)
  • I feel much more dizzy and lightheaded than normal.
  • My hearing is just wrong.  I have cochlear implants, I don’t hear like other people. “Cochlear implants (CI’s) bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.” NIH Publication No. 11-4798  You wouldn’t think that I would have the same problems as other people with Meniere’s concerning hearing fluctuation and sound sensitivity, but I do.  It is much worse when I have the cold, but it happens pretty much every evening, I’ll suddenly have my hearing so all funky; I can’t understand Stuart and often things sound so loud that I have to remove my CI’s.  Thankfully, I can take them off and just hear nothing, except the tinnitus that doesn’t go way, but hearing nothing can cause other problems.  When I take off my CI’s and stop hearing anything, I can get dizzier, and feel really confused.  I don’t mean I’m confused because I can’t hear, I have severe brain fog.  If I’m reading, I often can’t comprehend what I just read.  I think this is because I notice the tinnitus so much more and it is bombarding my system.  When I’m not sick, sometimes taking my CI’s off is often a pleasant sensation, to just relax in total quiet (as long as my tinnitus is being good and staying low).  I do this every day when I meditate.
  • My oscillopcia is worse. (Oscillopsica is a visual disturbance in which objects in the visual field appear to oscillate. The severity of the effect may range from a mild blurring to rapid and periodic jumping.) It can be incapacitating, luckily mine just causes me to see things weird sometimes.  I often see things as if there is this funky shadow surrounding them, like they are slightly vibrating but I can’t really see the vibration I can only see the after image after.  It’s hard to explain.  On a good day, I don’t have this, or barely have it.  Today, I’ve had to stop writing this post many times because I am having a hard time focusing. (note, not everyone with Meniere’s has oscillopcia)
  • I think everyone has a headache when they have a cold, I don’t know if mine is worse than it used be before I got Meniere’s or not, that was a long time ago.  I know it’s worse than my persistent daily headache.  I’m at a 6 or 7 on the 0 – 10 scale all the time right now.

So far I haven’t had a full blown vertigo attack.  I keep feeling like it’s coming, but it hasn’t.  I’ve been having so many good days recently maybe this cold won’t set it off.  I do constantly feel like I’m on a boat and a bit car sick, but the full rotational vertigo has not come around.

Having a cold and Meniere’s at the same time can be challenging.

If you have Meniere’s and you feel cruddy because you have the crud, you aren’t alone.  Know that it gets better.

If you don’t have Meniere’s, now you know a bit about what people with Meniere’s go through when we have a cold. Some people have more symptoms than I listed, some people have less, but normally people with Meniere’s have their symptoms increase when they have a cold.

Today I have the crud….it just is.

My first Experience with Vestibular Therapy

balancing by wendy
“Balancing”  gesture drawing by wendy holcombe

Your vestibular system is the ear part of how you balance. You balance with your ears, eyes, and your body/feet.  My vestibular system doesn’t work so good, so vestibular therapy is going to teach me how to balance more with my eyes and feet.

When going into vestibular rehabilitation physical therapy last Thursday I had no idea what to expect, and to tell the truth I don’t have any idea what to expect at my next appointment, but I know it won’t be easy.

Ryan is my therapist (I may see another therapist at some point, there are 2 vestibular therapist there, but I would prefer to keep seeing Ryan, because I can hear him pretty well, and he is understanding about how to talk to me so it is easier for me to understand him), I’m impressed with him so far…very impressed.  I’ve never had anyone be so aware of my condition and so understanding.  No one.

He did a number of tests on me, said some things we need to work on…like the fact that my ankles don’t bend far enough.  Ankle flexibility and strength seem to be very important. Of course that makes perfect sense when a huge part of your balance comes from your feet.

I told him my experience of having BPPV for 11 days this past summer but by the time I got in to see the doctor it stopped the day before, the doctor didn’t want mess with it then for fear of starting it again, so they didn’t actually do the test.  I explained that since then I’ve had trouble turning over in bed, and at other times, but I’ve been tested twice since then and it was negative.  He tested me…it was positive…it was slight, but it was there, he also listened to me about when the symptoms started, he didn’t just look at my eyes and when it didn’t start jumping around immediately say, you don’t have BPPV.  He really listened and payed attention.  He then did the Epley Maneuver on me and I feel so much better. (I want to note here that the Epley Maneuver does not treat every type of BPPV.) I will probably need to be treated again, but not being jarred awake by spins when I turn over is wonderful.  I get a tiny bit now and then, but it doesn’t wake me up.   Happy Dance!

There was a point in the test where he had me stand and close my eyes..I was VERY nervous….meaning inside I was freaking out, he asked me to take a step and I…well I just couldn’t!  He encouraged me and told he he had me and I wouldn’t fall (in my mind I thought, “yeah, this little guy is going to catch this big old woman…in his dreams!”.  Out loud I broke into tears and said, “I don’t do the dark.”  I should have explained, I’m not really that afraid of falling, yeah I might get hurt, but that isn’t nearly as scary to me as the vertigo, and the dark can trigger vertigo…I don’t do dark.

My anxiety is so high.  That is so not a good thing.  Anxiety can cause vertigo. Vertigo causes anxiety.  There’s a bit of a Catch 22 there isn’t it?  I have noticed I do not like it when someone says that I’m anxious.  (Yep, he said that)  I get defensive. I want to scream, “If you had this would you not react like I am?”  I feel like being anxious is a negative thing, therefore they are telling me that I’m not dealing with this as well as I could.  I know I’m much more anxious than I used to be, panic mode, almost constant fear…it’s hard, really hard.  (No, I have not been keeping up my mindfulness practice, and yes I started meditating again this week.)

It was a fairly long intake appointment, all the testing, background questions….he was surprised I hadn’t had this kind of therapy before.  That’s because, most of the people he sees have not been living with a vestibular disorder for this many years before getting vestibular therapy for the first time.  *scrunchy face*

He warned me that this isn’t going to be easy, that I will probably be nauseous a lot, but if I can hang in there it can really help.

My homework…when I got there he noticed that I don’t move my head much when I walk, so my homework has been to look around. Open my visual range, turning my head. Of course, always using my walker.

I had a pretty big vertigo attack that started on the way home, and I felt horrible the whole next day.  I even fell down, I’ve only fallen once since my hip replacement until now.  (Really I kind of slid down the wall, I felt myself getting really bad, so instead of trying to race to a chair or something, I leaned on the wall and just slid down.  I’ve found that to be pretty safe.)

I’m trying to do my homework and look around, but it’s hard, moving my head really makes me sick.

I go back on Thursday, yep tomorrow, we’ll see how it goes.

He wanted to see me twice a week, but we asked if I could go once a week with homework. Hubby has to take me everywhere and I’m trying to reduce the amount of appointments. His work hours can be flexible, but it’s much better if he works somewhat normal hours, and I don’t want to exhaust my poor husband, being a caregiver is hard.  Ryan said that he would give me plenty of homework!

 

 

My Visit to John Hopkins

John Hopkins Outpatient
John Hopkins Outpatient

A couple of months ago I applied to be seen at the vestibular clinic at John Hopkins Hospital.  My records were sent, and an appointment was set up for December 27th, then it was moved up to December 11th. I must say, that was just fine with me.

I was scheduled to have a hearing test, and an Electonystagmography (ENG) test before seeing the doctor, but the doctor had to leave at 2pm (before my original appointment time) so he wouldn’t see the test before he left, so we asked if I could take the test at home.  You see, I had to stop any medication that might help with vertigo attacks before the Electonystagmography (ENG) test, if I didn’t have to stop these medications while out-of-town, I sure didn’t want to.  They said no problem, and I sure was glad.  I spent all of Thursday with vertigo, it was slow but it was there, I can’t imagine what it would have been like if I hadn’t been able to take my meds.  I also had an attack right before my appointment on Friday.  I had very little balance when I saw the doctor and my vision still wasn’t clear.  So he saw me when I was not doing well.  I think that’s a good thing.  How many times have you been to the doctor and all of your symptoms just magically disappear right when you get there?  That is so frustrating.

When we walked into the Outpatient Clinic it was like walking into an airport.  You checked into the front desk, we both got arm bands to prove we belonged there.  There were all kinds of signs and lines and directions, it was a bit to take in all at once.  Stuart said we were told where the elevators were (no I couldn’t hear much in there) and off we went.  When we got where we were supposed to be, I was very impressed that the check in and out areas were looped.  If you don’t have hearing aids of CI’s you won’t understand that.  If your hearing aid or CI has a telecoil setting, then the hearing loop provides a magnetic, wireless signal that is picked up by the hearing aid or CI when it is set to ‘T’ (Telecoil) setting, and the person using that setting can hear the voice right in their ear, no background noise or anything…it is really cool. So, we checked in and were told to go to the little waiting room in the back….that’s when it started to look like just a normal hospital setting.  The little waiting room, wasn’t all that little, but it wasn’t all that big either.  We were early, because I HATE to be late.  My first appointment was to get a hearing test…(snicker).  But soon a very soft spoken woman came out and said the doctor wanted to see me first, at least that is what Stuart told me she said, I had no idea.  She took my vitals, she asked for my weight and height…I got it mixed up as to which one she asked for first, because I couldn’t hear her and I was guessing.  Soon the doctor came in…..

We talked a bit about my history and he gave me some tests while in his office.  A bit of touching my finger to my nose and then to his hand, turning my hand over and over….ect. Some I could do okay, some I had trouble with.  Then he said he was sorry but needed to shake my head a bit.  I did not do well with that one.  I had to look at his nose while he shook my head.  One time when he shook my head Stuart said he saw my eyes jerk, he said it was “kinda freaky”.  The doctor asked me to stand up and I staggered a bit, he said never mind, sit down, be careful.  I guess that answered that test.

He then said he wanted me to have the hearing test and come back in to see him.  So I went out.  I still thought it was kind of funny getting a hearing test because I’m deaf.  I can hear a tiny bit in my right ear, but it is so little you may as well say, I can’t hear anything.  Soon the doctor comes to the waiting room and said, the Audiologist said that since I have cochlear implants she couldn’t give me a hearing test.  Yes, I kind of giggled inside.  Stuart told them over on the phone that I had CI’s and a hearing test was kind of unnecessary, but they said it was ordered.  Then the doctor said they could do the ENG test that I was originally scheduled for now, so he could see it.  Well, I had just taken meds to help me, since I was really sick after the test he performed.  I told him, that and how it said I wasn’t supposed to take any meds for like that for 48 hours before the test, and I’d already taken it twice that day.  He agreed the test might not be accurate under those circumstances. Oops, kinda wish I hadn’t taken my meds, but then again, I really don’t want to be so far from home when I have that test done.  I just know I’m going to be sick.

The ENG will show how much vestibular function I have left in each ear.  That’s pretty important right now…..because here’s what he thinks and the plan……

He said, it is obvious I have damaged vestibular function, it is just a question of how much, and how much in each ear.  He said he believes that, yes I have Meniere’s Disease, and Vestibular Migraines, and he said I have balance issues caused from getting my Cochlear Implants.  I noticed before, my vertigo got worse after getting my CI’s, but no one ever said that they could have caused some of it.

He said we have to treat these in different ways.  One is to get my migraines under control.  He likes that I’m seeing a Neurologist that specializes in headaches, so I’ll continue to see her and try to get the migraines more under control.  If we can’t do this, I may be taking another trip to John Hopkins to the Headache Clinic for evaluation.  The next thing he said was, I need to have vestibular rehabilitation to train my body and brain to balance without my ears.  He also said,  we need to kill my balance system in my ears.  We plan on doing this with gentamicin shots in both ears.  How much I need to have depends on the results of the test, one ear may already be dead, who knows…we just don’t know how damaged they are yet.

I will be seeing a new otolaryngolgist here in Charlotte on Wednesday, the 16th, and we will discuss all of this, and set up getting the test that the doctor at John Hopkins wants.  They will confer with each other on a treatment plan.  I guess, It will also be good getting a 3rd opinion.  The one from my doctor at Duke, the one from John Hopkins, and now let’s see what this doctor thinks.  This doctor knows I have been to John Hopkins and they will be conferring with each other.

There are a few questions I forgot to ask.  I know many of you are thinking….”You should have written them down.”  I did, really, I did.  But I wrote it on the paperwork they gave me, and I gave it to them…I didn’t have it after that….duh.  So I’m going to ask the new doctor.  It’s only a couple of things.  Nothing that would really change the plan I think.  I just want to know if they think my Meniere’s could be autoimmune, since it reacts so well when I am on steroids; and I’d like to know if they can answer why when I breathe in through my mouth, or drink anything cold or hot I feel it in my right ear.  That’s just weird.

I know I forgot to ask him these things because he was telling me things that had been thinking for a long time.  I actually asked for this treatment from my doctor.  But he wouldn’t do it.  He said it was too destructive and I could be so disabled I wouldn’t be able to do anything….ect.  The doctor at John Hopkins looked at me and said, “more disabled than you are now?”  He then asked if I had been given vestibular rehabilitation, and we told him no, that I asked for it, but my doctor had said that things fluctuated so much he didn’t think it would help.  He frowned, and said, he thought I could benefit a lot from vestibular rehab….so as I said before, we plan to do that first.   I went into the appointment with no expectations.  Actually, I expected them to tell me there was nothing they could do.  I had no real hope.  I told the doctor this, he said….No, don’t give up hope.  I explained, if I came in there thinking he was going to fix me and then he couldn’t do anything I would have fallen apart, if I came in there with no expectations, I would be thrilled if he could do anything.  He liked that.  We talked a bit more, and he insured me he would consult with my doctor here and answer any questions, and if I came back up there he would be happy to see me.  Then when I left he shook my hand and told me that it was a true honor to meet me.  That shocked me.  I told him it was so very good to meet him and thanked him profusely.  and went on my way.

A little about the trip itself…….The trip up to John Hopkins was pretty uneventful.  We stopped by Duke to pick up films that I’ve had done….you know, MRI’s, and such.   When we went through Washington, I saw the White House, the Jefferson Memorial and the National Monument in the distance.  I’ve been to Washington before and have seen those things up close, but it is still kind of magical to me.  I don’t know why.  Driving into Baltimore, it seemed so BIG.  The GPS told us to go straight when we should have gone to the right to get to our hotel and we ended up in a very sad part of town.  The buildings were mostly boarded up, yet there were a few businesses here and there.  I can’t imagine how they would ever do any business.  One place we passed there were a lot of nice cars parked on the road, and one burnt out car right in the middle of them.  Soon we made it back to our hotel.  It was just a very sad detour.

On Wednesday night…well I guess it was Thursday morning…Stuart shook me awake at 5am.  I thought, we don’t have to be anywhere, why is he waking me up.  I read his lips… FIRE!  I was awake then!!  He pointed to the alarm.  The Fire Alarm was going off.  I jumped up and put on enough to get out of the hotel…it was very hard for me to go down 3 flights of stairs!!  We were all out on the street and almost immediately there were 2 fire trucks on the scene.  No fire.  I never found out what happened.  I could not climb back up those stairs, and it took a while for them to turn the elevator back on so we had a bit of a wait.  That was fine with me.  I was very impressed that the fire department got there so fast.  The scariest part for me, if Stuart had not been in the room I never would have known there was a fire alarm going off.  I would have slept right through it.

Well, we had an adventure!  I told Stuart when we got back to the room, that with all this stress, I still hadn’t had a vertigo attack…that was amazing….so, we were moving to Baltimore.  But I spoke too soon.  Of course, I woke up with one the next day….and it lasted all day….but I spoke about that earlier in this post.

I was a bit disappointed that we didn’t get to do anything while we were there.  The one day I felt good, we wasted because 2 of my shirts didn’t get packed so I didn’t have enough clothes.  Curses.  The next day if I had felt well, we were going to do something.  We planned to go to the Aquarium, it wasn’t far from where we were staying.  However, of all the sites in Baltimore that there are to see…..after all it is home to one of my favorite poets, Edgar Allen Poe…I really wanted to see Charm City Cakes.  Yes, I wanted to go see a Bakery!  I didn’t even care if I went inside, I just wanted to see the building.  It is the bakery from the show Ace of Cakes….that isn’t on any more.

Duff Goldman
Duff Goldman – photo courtesy of Food Network

Duff Goldman started it..still owns it, has a second one in LA now.  He is often on the Food Network.  They do spectacular work, and I was just a huge fan of that show, and I just love Duff.  I could just eat him up.  I love the story behind his life, and I love his personality.   I regret that we didn’t at least drive by Charm City Cakes.  Yes, I am a goof.  I was sick, had a migraine, couldn’t focus worth a toot, had about 8 hours on the road ahead of me…and I regret that I didn’t stop by and see a bakery.  But hey, what is life without the little things?

 

 

A Few Facts About Vestibular Disorders….with comments about me.

VEDA-BAW Poster-390163-WEB-1

Top Ten Facts about Vestibular Disorders      (This list is put out by VEDA.  The comments in bold italics are by me, all about me.)

  1.  The vestibular system includes the parts of the inner ear and brain that process sensory information involved with balance.  (however, your balance is controlled by your vestibular system, your vision and your sense of touch….but mostly your vestibular system.)
  2. Over 35% of US adults aged 40 years and older (69 million Americans) have had a vestibular dysfunction at some point in their lives.  (I remember my first vertigo attack when I was 30.  However, I had balance issues long before that, most likely caused because I had severe ear infections in my teens.)
  3. Vestibular disorders can be caused by disease, injury, poisoning by drugs or chemicals, autoimmune causes, traumatic brain injury, or aging.  Many vestibular disorders occur from unexplained causes.  (We don’t know what caused mine.  *shrug*)
  4. Symptoms of vestibular disorders include dizziness, vertigo (a spinning sensation), imbalance, tinnitus (ringing in the ears), fatigue, jumping vision, nausea/vomiting, hearing loss, anxiety, and cognitive difficulties.  (I just want to say that tinnitus can be a LOT more than just “ringing” in the ears.  I rarely hear ringing.  I normally hear buzzing, banging, roaring…all kinds of noises, I know one woman who hears music….”ringing” is just an easy way to explain it.  A lot of these symptoms are easy ways to explain them.  Your vestibular system is kinda complicated.)
  5. Vestibular disorders are difficult to diagnose. It is common for a patient to consult 4 or more physicians over a period several years before receiving an accurate diagnosis.   (very sad but true.  For a long time when I had vertigo attacks the doctors had no idea what was happening, I admit I probably didn’t describe it very well.  I remember once I had to have IV fluids because I was so dehydrated, my doctor was convinced I had food poisoning.  When I was finally diagnosed with Meniere’s disease it was a fluke.   I had been to the ER because I had been throwing up for over 12 hours and the doctor there said I was having vertigo and needed to see an ENT, this was the first time I heard the word, “Meniere’s”.  I was not diagnosed correctly.  The doctor didn’t do any test on me.  I could have had a brain tumor for all he knew.  Years later after a battery of testing at Duke, it was determined that I do have Meniere’s, but I also have other vestibular disorders.)
  6. There is no “cure” for most vestibular disorders. They may be treated with medication, physical therapy, lifestyle changes (e.g. diet, exercise), surgery, or positional maneuvers.
    In most cases, patients must adapt to a host of life-altering limitations.  (That’s a huge statement…there is NO CURE for MOST vestibular disorders.  I personally have had at least some type of all of the treatments mentioned…of course they are being very broad in saying what kind of treatments they are, but I use medication, have had physical therapy, and probably will again, I have extreme lifestyle changes…you would not believe how my life has changed…. I’ve had surgery many times, and I’ve had positional maneuvers…..whew…I will probably have more treatments in the future… at least I hope so, I’d like to feel a bit better than I do now.)
  7. Vestibular disorders impact patients and their families physically, mentally, and emotionally.
    In addition to physical symptoms such as dizziness and vertigo, vestibular patients can experience poor concentration, memory, and mental fatigue. Many vestibular patients suffer from anxiety and depression due to fear of falling and the loss of their independence.   (Most people do not understand how a vestibular disorder can cause so many cognitive issues, but it does.  With Meniere’s I’m not just afraid to fall, I’m afraid of having a vertigo attack in public…. this is horrifying.  I no longer fear the loss of my independence… I’ve lost it.  I can’t drive, I can’t go out alone, I use a walker, I can’t cook (it’s too dangerous with a balance disorder), I have a very hard time picking things up off the floor, I can’t take a shower, or bath without someone near by, just in case (often someone has to help me…. I don’t talk about things like this most of the time, and I often push through a lot of things when I’m around other people, but I pay for it later.)
  8. Common vestibular disorders include benign paroxysmal positional vertigo (BPPV), Ménière’s disease, labyrinthitis, vestibular neuritis, and vestibular migraine.  (personally I have 3 of the vestibular disorders mentioned here.  I have BPPV, Meniere’s Disease, and vestibular migraines.  I also have an unknown vestibular disorder….one that is causing me a lot of problems but the symptoms do not fit in with the other defined disorders.  I will hopefully be going to John Hopkins in the not too distant future to try to find out what this unknown vestibular disorder is and maybe how we can treat it.)
  9. In the US, medical care for patients with chronic balance disorders exceeds $1 billion per year.  (I have to admit, I always wonder where they get these numbers and what they include.   I have to say the treatment of my vestibular disorders has been extreme.  We are very lucky we have insurance.  Of course, insurance doesn’t cover everything.   To give an example of just how much one thing cost…. I had a vestibular illness take my hearing and cause me to get cochlear implants, they cost over $100,000 each.  That’s a lot of money.  Of course, most people with vestibular illnesses do not lose their hearing.  I’m a bit rare.  heh… but aren’t I always *wink*)
  10. The Vestibular Disorders Association (VEDA) is the largest patient organization providing information, support, and advocacy for vestibular patients worldwide.  (VEDA has been a go to place for me to find information.  If you want to know more about a certain vestibular disorder, I suggest going to their website. http://www.vestibular.org)

Avascular Necrosis….that’s a scary diagnosis

It’s official, I have Avascular Necrosis (or Osteonecrosis) in my left hip.  What is this?  Let’s look at the word Osteonecrosis, Osteo – bone  necrosis – death.  You have to remember that your bones are living things.  They have a blood supply.  When this blood supply is lost, or disrupted, the bone begins to die.  That is what is going one with my hip.  Particularly, the head of the femur.

click on photo to find out more about osteonecrosis
click on photo to find out more about osteonecrosis

I’ll tell you more about this condition after I see the doctor on Monday.

Right now….I can tell you I have it.

I had my CT scan on the 13th.  I’ve been dealing with a lot of waiting with this whole thing and I’ve been handling it well, but I decided I’d check in with my doctor via email yesterday, just to see if he could look at my CT scan and let me know what he saw.  I was getting a bit anxious.  My pain has been intensifying, and my balance has been even worse (not just from my ears), I thought, “Hey, the worst he can do is say he can only tell me these kind of things in person.”

Within 2 hours the nurse called Stuart and told him that my doctor was out of the office, however, she got another doctor to look at my CT scan and yes I have Avascular Necrosis.  She also moved my appointment date up from March 24th, to March 2nd.

At this point I don’t know what stage I’m in, but I do know it hurts, a lot…..more than I care to admit.   There are treatments that they do try when you are in the earlier stages but, it is a very small chance that you won’t end up having to have a hip replacement.  The earlier treatments are kind of like a stop-gap.  They help for a while, but most of the time it comes back.  It sounds to me like end up doing a hip replacement most of the time.  The amount of pain I’m in tells me I may be a little bit further along than we thought, so I may not have to even worry about thinking about all of that.  My doctor didn’t sound like he was very keen on putting people though unnecessary surgeries, just to end up having a hip replacement anyway.  So, I’m looking at a hip replacement.  I know it will make me feel better, and I’m very relieved about that.  I look forward to discussing everything with my doctor on Monday and making a plan.

I won’t lie, I’m very nervous about all of this.

Oh heck, I’m TERRIFIED.

I’m afraid of having a hip replacement.  I’m afraid of Stuart having no help.  I’m afraid of getting this place ready for me to be able to get around in during recovery. I’m afraid that I will get this necrosis in other joints.  (since they think my Avascular Necrosis is because of corticosteroid use, it could show up in a different joint, normally the other hip.) I’m afraid of the pain after surgery, I don’t deal with pain medication well, it makes me itch.  I’m just scared, OK?

I’m trying very hard not to think about the future…succeeding very well aren’t I??  I’ll be seeing the doctor on MONDAY.  We will make a plan then.  I will have more answers at that time.  Me getting all worried and fretting is doing no one any good, especially ME.  So what am I going to do for the next few days until I see the doctor?

  1. I’m not going to read anything else about Avascular Necrosis, or Hip Replacement Surgery.
  2. I’m not going to talk about it….well not much.
  3. I’m going to meditate.
  4. I’m going to do relaxing things….maybe watch a movie, read some of the book I just got from the library on my Kindle…..ect.
  5. Spend some quality time with my husband, something we haven’t done enough of lately.
  6. try my best to enjoy myself….laugh!
  7. eat good and healthy food.  I made up a new recipe, I hope Stuart’s up to trying it out.
  8. Take care of ME!

If there is one thing I’ve learned about me, it’s that I’m pretty darn tough!

No matter what, I know I can handle this.

What is wrong with me??

image by w. holcombe
image by w. holcombe

What is wrong with me?   This is the question I kept asking over the past couple of weeks.  Heck I’ve been asking this question a lot over the past couple of months, I just keep seem to be falling apart.  But I don’t think that way….or I try not to.  I accept things as they come.  I just roll with the punches.  Yeah.  Well that isn’t how it has been going.  I’ve been trying.  But I’m not succeeding right now.

It has just been too much.  This post is about the latest….

I mentioned a little in the beginning of my last post: VERTIGO…MAJOR!

It started the beginning of this month.  I would just suddenly have this whoosh feeling and I’d start to spin.  It just felt different.  I can’t explain it.  Maybe it was different because I had been feeling so off for so long.  I had been having the severe disequilibrium for so long (feeling like I’m on a boat all the time) and not being able to focus on one spot without it moving.  Maybe?  Really, who knows.  But these attacks…they are different.  The start, it just feels like I moved my head too fast, but I didn’t move…and suddenly I’m in full spin.

One night I had a drop attack, but it felt different from any I’ve had before, and I haven’t had one in a long time.  We were watching Jeopardy, and suddenly I felt like an entity had just come up and partially entered my body and pushed me over on the couch and I gasped…one of those screams where you suck in all your breath…I just fell over on the couch and was in full-blown vertigo.  If I had been standing, I would have hit the floor hard!  It scared me so much.  Not just the falling, but that feeling before hand, I literally felt like there was something trying to enter my body and pushed me over.  It scares me just thinking about it.

When it started I had just had a day completely vertigo free.  I could focus on a spot without it moving, the boat stopped.  Relief.

What happened for that day?  What happened after that day?  These are questions my mind likes to ask but no one can answer, I try hard to stop the loop of questions, but it’s hard.  I’m an inquisitive person.  I’ve always been that way, I want to know how things work, I loved science and proving theories.  Telling me that no one knows something about a scientific problem is hard for me.  I keep thinking I’ve accepted that.  And I have.  I have.  But I don’t want to.  I want it to change.  I want to know what is happening to me.  What changed?  And more than that, I want for people to stop asking me that question.  It is hard enough for me to not have the answer for myself, but when someone else ask it, it cuts me to the bone.  I want to just scream….I DON’T KNOW!  Please NEVER say to a chronically ill person, “Why can’t they do anything?”  of  “I think you need to find a new doctor.”   You have no idea how many doctors I have been to and still continue to consider.  However, this is my life.  It is my decision how I get treated.  You do not know what it is like to live with this, and you have no idea what the treatments are….do not tell me what I should do.   (unless of course you have this disease then you can talk to me and if you over step your bounds I will feel I can tell you to so.  That’s different, we are going through the same crap…excuse my colorful language.)  However, normal people do not understand.  Heck, some people who have this don’t understand, it’s different for different people.

So….off that soap box and pity party….

I went to the doctor on Wednesday.  Yes the doctor here in Charlotte.  He really doesn’t listen.  I will not go back to see him.  I am glad I will be able to see the audiologist here when I can’t get to Duke, but I will have to find a different doctor.   (and I don’t feel right going to the audiologist since they don’t get paid, I’ll only go there if I absolutely have to.)    They do have a lot of doctor’s in that practice, however he is supposed to be the “head guy” who knows about Meniere’s.  I will be doing some research, but if he is the head guy…I am up a creek.  Let me tell you about my latest visit.

I did get an appointment rather quickly, that was nice.  We got to the office and I had to be taken in by wheelchair.  They thought I was in a wheelchair because I had back surgery??  I never said I was having back surgery.  I did tell them I had a herniated disc and was having physical therapy, therefore I wouldn’t be able to do vestibular therapy until I got that straight. (Where did this information come from?)    He asked me about these attacks, how long they have been happening and what they were like.  I told him …bad attacks lasting 30 mins to over 3 hours, 3 to 6+ times a day, coming on with no warning.  He asked me to describe the attacks.  I looked at him and said.  “You know what a Meniere’s attack is like.”  Yes, I was a bit snarky.  I had been through telling him what my attacks were like the last time I was there. I have never had to tell my last doctor what my attacks are like every time I go in there.  He said “Yes, but I want to know what your attacks are like.”  I started to tell him, I told you last time, but I didn’t.  I said, “severe rotational vertigo, severe tinnitus, want to die!”   “Yes, that’s normal”  DUH!   Stuart them tells him how much my eyes have been vibrating with these attacks.  I got him to really look this time, and he really noticed, he as surprised he hadn’t seen it so much before.  My eyes really dilate, and I have nystagmus really bad during an attack.  I need light or I get really sick, but lights also hurt because my eyes are so dilated.  My eyes hurt so much after just a few minutes, after hours…well dang!  So the lights are normally dim and my face is in a bucket throwing up, of course my darling husband doesn’t normally see my eyes vibrating.  Poor thing felt guilty he hadn’t really noticed as much before.  I was having him look because something with Meniere’s one eye will vibrate more than the other telling you which ear is causing the attack…not all the time, and not this time…darn.

Back to the visit.  The doctor then looked in my ears and does this thing where he makes me follow his finger with my eyes….he moves his finger really fast.  I tell him…that makes me sick.  He keeps telling me to look at it.  I look but I will not look fast.  I am not going to throw myself into a spin in his office just to perform his little test.  (I know it is neurological test, I’ve had it many times before, you do not have to do it so fast)  I had already taken 3 or 4 Valium that day because of the attacks I’d already had.  I can tell he gets frustrated with me when I don’t do the test as he wants.  oh well.  He asked what I take for my attacks, I told him, Valium and Phenergan.  He said, well that’s the best.   He asked if I had this happen before.  Yes, in the spring of this year, and explained it had been after I had been on a high dose of steroids for my migraines that tapered off too fast.  My ear doc had to put me on steroids that tapered off slower.  He said, I told me I only have attacks 2-3 times a year.  I said, I only have very severe attacks 2-3 times a year, I have small, and mini attacks almost every day.  He said nothing.  He paid NO attention to that.  He acts like since I don’t have severe attacks like I have had the past couple of weeks all the time then this is not debilitating.  He really heard nothing I said about how this is affecting my life.  He heard nothing about how I can’t focus on things without them moving.  He DOES NOT LISTEN TO ME!  Why?   Later when I got home I was so upset, I talked to Stuart and was in tears, “Did I down play my Meniere’s to him the first time I saw him?  He doesn’t understand what this is doing to me.”  Stuart then told me…that no, he just doesn’t listen, he only hears what he wants to….I digress again…back to the visit….

So he wrote me a prescription for steroids.  Good, that is what I expected.  He told me the dose and I thought…That’s High.  He then said some people get very agitated and have mood swings on these….I told him I do, and it can be pretty severe on a high dose.  He ignored me…”If you have a problem call me”  I just told you I have a problem! Listen to me!  I explained again about how the high dose prescription from my migraine doctor that tapered off too fast made me spin.  He said, “This won’t make you spin, but if you have a problem, call me.”  Hmmm, are you listening to me?

I got the prescription and started it.  The next day I couldn’t stop crying.  I looked that the dosage….and the tapering.  60mg a day for 14 days!  then 40mg for 2 day, 30mg for 2 day, 20 for 2 days, ….you get the idea.  14 days then 2 days each…that’s a pretty fast ramp down!  and 60mg of prednisone for 2 weeks!!  I will be going out of my mind!  It is very hard for me to deal with these emotional swings with my bipolar swings anyway.  It makes me feel like I am having bipolar episode, and it drives me crazy.  I can’t trust my own emotions.  I don’t know if all of my mood swings are from the steroids or if I need to be evaluated for bipolar stuff.   So, I thought….I can’t do this.  I decided to look up my chart on the Duke Patient Portal and see what my prescription was from my doctor there.  It was for prednisone, 10mg tablets, so that was all good, but the dosage was much different.  I’m following his dosage.  He starts out at 40mg for 5 days, then goes to 30 for 5 days….ect.  a much slower taper down, and I know I did fine with it.  I will also be taking half as many pills.

Is this the right thing to do?  Should I be treating myself?  In this case….I don’t really think I’m treating myself.  I don’t like to go against a doctor’s prescription, especially about steroids they can mess you up!  But I know my tolerance to them and I know they do mess me up.  I once swore I would never take them again….but sometimes you have to do something that you don’t want to do to survive.   I feel like since I couldn’t go to Duke to see my doctor, I’m doing the next best thing.  We did call him and he said he felt steroids would help again, but didn’t feel he could prescribe them without seeing me.  (My point…as I say in my disclaimer, I am not giving medical advise.  I do not advise anyone to ignore what their doctor tells them.  This is just my story.)

Good news.  The steroids are helping.  I’m on day 3 now.  The first day I had a mini attack and a few hours feeling like I was VERY drunk, I was more sick to my stomach than I was during most of my attacks, and that is saying a lot!  Unfortunately, I had run out of what I had been using to really control my nausea, so I was really sick that night.  Yesterday, I didn’t have an attack.  I did have that drunk feeling again last night right when I was getting tired, same as the night before, thankfully it didn’t get as bad or last as long.  So it looks like things are getting better day by day.  Tonight, I am going to force myself to go to bed and to sleep as soon as I feel tired…maybe that will stop that drunk feeling.

that is the story of my last couple of weeks.

It has been hard.

The last few months have been hard.  Physically and Mentally.  It has also been hard because the doctors I trust are 300 miles away.  I’d also like to see my therapist, this has been a lot to process, and I’d like to have her to help me through this with the mood swings.  I moved here feeling so much better, with so much hope, so much promise.  I thought I was ready to handle anything life through at me.  I was wrong.  I’m still trying hard to live in the now.  I’m trying to accept things as they are, and accept my feelings … nonjudgmentally.  that is a BIG thing.  I may be having a really rough time, and I may not be able to accept life as it is without wishing it to be different, but that’s alright.  I’m just not there yet.  Right now I’m hurting, and I need to be here for a little while, and stop judging that.  I’m still hopeful and good and happy and loving….it is just that the hurt is in front of it right now.  And I’m not going to judge that.  I’m just going to wait until it goes away, and since I accept that is here, and a part of me, the faster it is lifting and the other parts of me are shining through.

Deep Breath.

Finally I understand….they really aren’t bad people.

I wrote this a few days ago, but did hit enter.  I wanted to read over it and make adjustments….but I had a vertigo attack..and another, and another.  I’ve been having many vertigo attacks since November 1st.  They come on fast and the spinning is very fast.  They last anywhere from 30 minutes to 3 hours.  Yesterday I had 6 of them.  I can’t be on the computer very often the rare occasions when I can.  I can’t read much.  I don’t know if this is Meniere’s or Migraine Associated Vertigo, or a combination.  My guess is a combination.  We have calls in to both my doctor at Duke and the doctor here….yes the doctor here….I’m desperate…and read below you will understand why I’m giving him another chance.

So I don’t know when I’ll be back.  and I didn’t read this over.  thank you all for supporting and hanging in there with me.  You are the best!

So the people at Charlotte Eye Ear Nose and Throat are not so very horrible.  Stuart talked to the head of the Audiology department today.  She said that the doctor I saw has spoken to her twice about making an exception to see me.  Shockers!  Also there seems to be a pretty good reason for them to not see people from different clinics.  They don’t get paid for it.  Yep, it’s in their contract that they don’t get paid for MAPping cochlear implants that they didn’t implant.  Sad.  (for those of you scratching your head right now thinking, what on earth is MAPping? It mainly means when the audiologist adjust the CI’s so you can hear better…but here’s a link to nice explanation with more detail, if you are interested.  It is in easy to understand terms to don’t worry. Mapping a Cochlear Implant).

The audiologist then told Stuart that they made an exception in 2 cases, if it was a hardship for someone to go back to the place they had their CI surgery done, or if they couldn’t travel that far because of a physical problem.  She said, in my case it is both.  Because of the Meniere’s it is a hardship because I can’t drive and I have to depend on getting someone else to drive me.  I am also physically unable to ride that far because of the herniated disc, and because of the vertigo.  So, they are going to see me at this office!

I really wish they had told me this before.  I do understand they they don’t want everyone to know there are exceptions because then people would be trying to bend the rules.  However, if they had just told me they didn’t get paid, I would have understood.  That would have made me very understanding.  I feel horrible that they don’t get paid.  I do not feel right taking advantage of them.  If I only have to see them once a year or so, we will just pay them for the visit.  If I have to go numerous times, I will try to go back to Duke.  Right now, I really need to have this done, and I can’t afford to pay for the visit.  I am so very thankful that they are willing to help me.

My suggestion to them in the future…explain to the patient that they don’t get paid.  I sure wouldn’t have thought they had awful business practices if they had told me that.

On a not so good note.  Well, first a good thing…I woke up on Halloween…No vertigo.  Yay!   By late that night I had a little.  It decided to come back faster than before.  I fell like its toying with me.  Oh my goodness it has not been fun, if I move my head I get sick to my stomach.  I have a headache all the time because I have to concentrate so hard to focus.  Then night before last….major attack!  Dang!  I didn’t handle this well.  Mindfulness…yeah I’m not doing well.  My brain is not staying in this moment.  I keep thinking, what if it doesn’t stop.  After all this slow stuff has been going on for a while now.  I can’t stop my brain from saying building up these stories.  It’s harsh.  And it is making it worse.  Last night I had a little bit more than a mini attack but not a major attack.  I handled it better, and got it to slow down.  I’m just so sad about it.

I’m working on a lot of self care.  Eating well, pampering myself a bit, reading things that make me happy, watching good things on TV, reaching out to people I know give me good advice or just make me feel good, getting good sleep, and enough rest.  Making sure I take my medication on schedule.  Keeping a routine as much as possible.  This is very important.  If I don’t do these things I know I could slip into a deep depression.  I know this because I’m biploar.  But this is important for anyone.  Especially those of us with chronic illnesses.  We can get sick easily when we are under stress, we have to take care of ourselves, and when life hands us some extra challenges we have to be diligent about taking care of ourselves.

I also have to rest more…that may mean taking a nap, or just resting more.  I need to meditate more….now during these times I won’t be able to quiet my mind.  I know that.  and that is ok.  I will just sit quietly, and breathe.  As a thought comes up I will acknowledge it and tell it to move along…I will probably be doing that the whole time…and that is ok.  It will still do me some good, and I’m sure I will feel better.  I need to not give in to my impulse to eat more, especially junk.  Yes, when I get upset, I want junk.  I can’t do that to myself.  Just as I can’t drink or do drugs.  I have to stay as healthy as I can to keep my depression at bay.

So I’m off to do some reading that makes me laugh.

Just wanted to share this great news!

Hubby decided we needed to celebrate.    Dinner tonight…Steak with roasted green beans and new potatoes.  And for desert….a parfait made with bananas, berries, Greek yogurt, walnuts and a touch of maple syrup.  Double yum!   (Ok, so I have that desert often.  It’s really good and good for me!  I feel good knowing I’m taking care of me.)

I need to admit it, I’m having a hard time.

Ahhhh!!!  I wrote more on this post, I revised it, I saved it, I really did.  I wrote more on it last night, and saved it.  I opened it this morning and wrote more, I revised….I just tried to put in a photo and finish it up….error.   Really?  So I thought, I’ll save it and then try again.  It asked, “are you sure you want to do this?”  I knew it was too late then….all my work today was gone.   Oh but wait, a lot I added last night was gone too!  All my revisions.  What the???

I can’t do it again.   So all the revisions, all the changes, you aren’t going to get.  Because now I have a migraine.  I really want to post this today.   The parts that say today in here, are really yesterday….that was fixed in the revision, but Oh well!  This is what you get today.  I was feeling better today after voicing a lot of this, so today it was changed to be a bit more positive….you wont’ see that.   WordPress is not being kind, and I’m going to live in this moment and not deal with it. haha

So….here you go….the post that is kind of what I wanted to write.

Wendy charcoal

I haven’t written much about how I’m really doing.  About how some things have been getting to me a bit.  I’m trying hard to keep mindful and stay diligent with my mindfulness practice, but I have to admit, I’m not far enough along in my mindfulness studies and practices to counteract my feelings right now.

When we first moved to Charlotte, I was feeling so much better!  I was able to do things around the house, to take walks, to well….do things!   I could hear.  I was thrilled the last time I went to Durham I had a long conversation with my old neighbor and not once did I have to ask her to repeat herself.  Not once!  That was amazing!!  That has drastically changed.

Right now I can’t walk very far at all.  I can’t walk at all without pain.

I still haven’t been able to start physical therapy.  It’s mostly my fault…bad decision in the beginning, I thought I should wait until I saw the hip doctor to make sure he didn’t want to add things to the PT orders, or something, heck I don’t know, it seemed like a smart thing at the time.  That delayed things almost a week, then we called to set up an appointment, it was a week out!  So that is 2 weeks I wasted.  So my first appointment was supposed to be today.  I had a cluster headache last night, when I woke up this morning I had no balance and felt like I had a hangover.  There was no way I could go to physical therapy.  I could barely stand up.  So again a delay….until Friday.  *sigh*

My back actually feels better, I don’t have a lot of pain shooting down my leg any more.  My hip still hurts a lot.  But the hip doctor said nothing is wrong with my hip.  He was actually not someone I would want to see again.  He was the type of surgeon who looks at a scan and says, “Your CT scan is basically normal, there is nothing there I can fix.”  and then proceeded to tell me it was therefore all coming from my back and good bye.  Even though I didn’t hurt my back until after my hip pain started!  The back doctor said, yes I have a herniated disc, but I also have hip problems too.  The back specialist was wonderful!  He believes in conservative treatment first, and explained things well, was very knowledgeable.  I would recommend him to anyone!  This hip doctor, was knife happy.  If he didn’t see something he could immediately cut on me to fix, it wasn’t his problem.  No matter how many questions I had.  I told him that I could have gotten that information on the phone, and I was sure that was the quickest visit he had that day.  He said, he loved giving good news.   Ugh!!!

I’m trying hard not spin “what if” stories about the future with the hip/back thing.  I will live in each day.  I WILL!  I will work hard at my physical therapy and get my muscles back in shape, and deal with how it turns out when it happens.   This I will do.  It is just really hard.

Since the Fall weather has begun my ears have started to tell me they are in charge of my life again.  I was having multiple vertigo attacks a day.  Just little ones, I handled them pretty good.  It was exhausting.  It was driving me crazy.  I was trying so hard.   Every afternoon around 4 or 5pm I start having tinnitus that is pretty relentless.  It is hard to deal with.  It can drive you insane to hear this very loud noise every evening for hours.  My hearing sounds like I’m listening through a deep barrel.  This reverberating noise.  It has gotten much worse since I had the very bad Meniere’s attack about 3 weeks ago.  My balance has gotten much worse too.   These things have been exceptionally hard to deal with.  I can’t stand to be in a crowd, heck I can barely stand for Stuart to talk to me in the evenings.   I have been having slow vertigo almost constantly.  If I focus on one thing it moves.  Nothing is ever still.  I always feel like I am slightly moving.  This scares the mess out of me.

So where am I now?

I’m scared.  I’m lonely.   I’m sad.  I’m mad.    And I’m determined to NOT feel like this for long!!!!

This is a time when I have to be careful not to dip into depression.  I have to pay close attention to my bipolar signals.  I have to up my coping mechanisms.  Be sure to get plenty of rest, keep up with my stress, take my meds on time……pay attention to me.  Bipolar can sneak up on you at times like this, even when you’ve been stable for a long time.

Before I was when I was really sick and I was alone because I felt so ill.  Being alone was felt better for me.  I was almost afraid to be around other people.  Now, I don’t feel that bad…I’m not in horrific pain, I’m not throwing up all the time.  I just can’t stand to be around people because I can’t hear them.  I get confused.  Noise drives me crazy.  I can’t go for walks.  I can’t get out in the neighborhood and meet people.  I’m very disappointed right now.

I wanted to do things here.  I wanted to get out and really have a life.

I’ve been stuck on this couch for so long.

am I giving up?

What do you think???

I have an appointment with a new otolaryngologist here coming up soon.  Will he be able to do anything?  Maybe not.  But he will be able to give a new perspective on things.  This is a big clinic here and they are doing some studies on Meniere’s.  I probably won’t qualify for any because I am so advanced, but since they are so interested in the disease means they have some people there that are open to different things.  So who knows?   I will also be getting my Cochlear Implants adjusted.  After I have a major attack I always have to have them adjusted.  They think it’s because when someone with Meniere’s has an attack the area in the cochlea swells, well that is where all the wires are for the cochlear implant, that is how I hear.  They get pressed on and it changes things.  So things have to be adjusted.  This doesn’t happen a lot with people who have Meniere’s who get CI’s because usually when they get to that stage they have stopped having vertigo attacks, or they don’t have them very often.  This has become a pretty routine thing  with me.  So I had to find a CI audiologist close to home.

Even if the new doctor doesn’t help….I will deal with things.  I’m sure we can get my hearing better.  If not, I will deal with it.

That’s what I do.  I accept things, and move on.  That’s life.  and as much as the road as been a bit rocky lately and I have had a hard time dealing with things, I still love my life.  really I do!  I have a lot to be grateful for…I’m just a little overwhelmed at the moment.   Having a little bit of difficulty with “not wanting things to be different”.   I want things to be different.  Right now I want that very much.  If it doesn’t change?   I will adapt.  I will change my expectations.  I will accept.  It will just take me a little bit.

Sick and Confuddled

mushroom with quote
photo by S. Holcombe.

I recently wrote a post that could easily have taken up 3 posts worth of writing.  You know if I wrote that much in one sitting I have a lot on my mind.  You also know if I’m making up words to say how I feel, I’m in a one heck of a state!

Some of the things I have written you will still see, I’m breaking it up into a couple of post, some of it you won’t….I have decided I just can’t talk about it here.  Maybe some day, but not now.  I want to, I think it will help some people, but it’s just something that I can’t talk about yet, at least not here.  And that’s hard on me, for a number of reasons.

So…on to what I will talk about…   (and it turns out this post is MUCH longer than anticipated….yep it’s one of those days.  as you get to the end you will understand, but forgive any errors please, I couldn’t go through and edit this, I am in too much pain.  But I wanted to get it posted.  at least part of it needs a voice…..)

Saturday my father and sister came for a little visit.  It was nice.  Even though we only live one state away we don’t get to see each other much.  They don’t get to come often, and I can’t travel very often.  Unfortunately, since our trip to Tucson, 2 years ago, I haven’t been able to travel at all.  I thought it was going to be better the last few months, but then I hurt my hip.  Now I can’t ride in the car across town without being in severe pain.  So who knows when I can go to South Carolina.  Thankfully, my sister brought my dad to see me.  We had a nice lunch and visit, then they were on their way.  Before they came I decided to get a shot of Toradol, an anti-inflamatory to help me not be in intense pain while they were here.  I wish I could have them more often, but you can’t take them on a regular basis.  I was very pleased that I could visit with them without worrying too much about the pain.  I was also happy I could hear them fairly well.  I couldn’t hear my father at first, but after a little while I realized if I sat closer to him I could hear him better.  What a relief.  I felt bad that I could understand everyone else, but was having such difficulty understanding him.  All in all, a good visit.

After they left I decided my hip was still feeling well enough we could go and meet the dear lady from the agency who had Kiki and make her adoption final.  So off the Pet Supermarket we went.  Luckily, they are very nice there and let me have a chair to sit in while we shopped a bit and adopted our newest family member.  Since the vet thinks Kiki is between 1 1/2 and 2 1/2 we decided that her adoption date is her 2nd birthday!  So September 27th is her birthday!  She was lavished with gifts.  She got a new sweater, because she has been cold on some of these early fall mornings when she goes out.  It is red, and looks quite fetching on her sleek black and white body.  She also got a new toy that she loves!  She has abandoned all of her other toys for this toy, it is so funny!  She also got a new tag, a little purple heart with her name and phone number on it….we need to get her microchip reprogrammed.  She is officially ours now!   I was so very happy when we were in the store and one of the people who work there told me that he had seen Kiki so often when she was there waiting to be adopted and she looks like a different dog.  She is so happy and well mannered.  He said it is amazing how much she has changed in just the short time we have had her.  That couldn’t have made me happier.  I knew then, that yes, Kiki really was meant to be our little girl.

Saturday night I was getting ready for bed.  I was sitting on the side of the bed taking my night meds and suddenly I felt the Meniere’s signals.  Okay, this has not been unusual lately.  I’ve been very acute for the past month or more.  Having mini attacks many times a day, so I wasn’t worried.  I took a deep breath and calmly tried to focus.  Then FLUSH..heat through my body.  Ugh. OK.  Calm. Focus.  You got this.  Whoosh.  better lie down.   Focus.  feel the hand on the table it is steady.  you are not moving.  HEAT.  HOT. I’M ON FIRE.  Stuart walks in.  “Attack?”  “yep. ice.”  Focus.  breathe deep. calm. calm.  Spinning faster.  wow.  deep breath. focus calm. you got this. it’s ok.  spin. stop. spin. stop.  breath…..Ice..Good!  Still hot.  chest hurts.  can’t breath deep.  calm. spinning fast still.  calm. calm.   it’s ok.  it’s part of you.  you can do it.   “Stuart…shot please”   focus calm.  calm. so tired.  (took meds earlier.  Stuart got shot ready,(I’m lucky I have Phenergan shots available to me, it is an anti-nausea/vomiting drug) he was about to give it to me and dropped it. Couldn’t find it.  suddenly spinning stopped.  yes.  OK. rest.

BAM. started going the other way!  What the?   OK…calm down. but this is weird.  you can do it.  focus. feel your hand. –  what the heck is happening? this is not right. –  it’s  all OK.  focus. calm calm.  focus.  it’s just different. – no, this is very different.  now it’s jumping all around.  what is going on? –  calm down. calm down.  calm calm.  focus. it’s kind of freaking me out he can’t find that shot – focus on your focal point.  it will be alright.  – I need the damn shot!  I’m getting scared. –  shhhh. calm down. focus. focus.  breathe.  calm..calm.  this is not real.  the room is not moving.  You are not moving.  calm breathe.  – Ah…shot.  It will be better soon. –  Calm…calm…shhh.  AH! oh my gosh….”Stuart”.  “I’m right here babe. I’m not leaving you.”  “I can’t stay awake.  I’m all dopey.  If I fall asleep it gets worse!  I’m so sick.  I’m scared.  It hurts.  My stomach hurts.”  “I’m right here, you are safe.  I’ll try and keep you awake if you want”

This went on for a long while.  I kept dozing off no matter what.  It was horrible.  I would wake up spinning even more!  Then I got VERY sick.  I was going to throw up.  But nothing came up.  I just gagged, and coughed, and mucus from my lungs came up.  I couldn’t take a breath in!  I had this huge gag that felt like vomit was coming up but it was like a HUGE burp came up then I couldn’t breathe.  My lungs hurt. I was having an asthma attack and trying to throw up at the same time! I was so afraid I was going to have to go to the ER because I could not breathe.  Stuart was holding me putting my inhaler in my mouth for me.  I got enough in to breathe again.  (afterward he told he kept watching to make sure I was getting in some air and not having any signs of needing oxygen….but he is also thinking we may need to see about getting oxygen for me at home.)

Finally, it calmed down enough that when I dozed I stayed asleep.  And I slept!   The pain from my hip did not wake me up at all that night.  I was so exhausted.

The next day, was hangover hell.

I felt so bad.  I was trying so hard not to feel like I handled thing badly.  I really freaked out.  I panicked bad.  I couldn’t stay mindful.  I couldn’t accept what was happening to me.  I hated my body, I hated my life, I was afraid I was dying and hoping I’d just hurry up and die at the same time.

This is not what I have been working so hard on.  This is not mindfulness.  But it is.  Mindfulness is a practice.  You can’t beat yourself up if you don’t live up to your expectations all the time.

Mindfulness is not just about making it better. It is about feeling how you are, how things are now, and not being judgmental about it.  It is about being gentle with yourself.  On Saturday night, I could not accept my condition.  I could not handle my situation without panicking.   That was the way it was.  I could feel every nerve in my body screaming that it wanted this to end.  I couldn’t accept that this was just the was it was…I fought it.   But I was there with it.   I had a hard time looking back at it non-judgmentally.   But now I can.  I can look back and say, I had a damn hard night.  I handled it the best I could.  Things happened that have never happened before, and it really scared me.  Who knows, I may have handled it better than I would have in the past, because of my mindfulness practice?  I’m okay with how I handled it.  At first I was sad about it.  I felt like I failed myself.  I didn’t.   Mindfulness is hard.   Living mindfully is not easy.  But it does making living your life easier.  Or at least it has mine.

So I’m off to being more accepting of how my life is, even when it’s that bad.  It’s my life.  It’s much easier on me when I accept that.  If I try to fight it, it makes it worse.  It really is better when I accept that I have my illnesses, and I have the symptoms, and all the things that they cause.   I have found that I can deal with those symptoms better when I stop fighting them so hard.  I feel better.  I cope better.  Heck, the symptoms have been easier.

I’m just saying how I feel about all of this, I’m feel I’m just testifying..haha.  I’ll write a more coherent post about this sometime.  With references.  Or maybe I’ll find a guest writer.  Who knows.  For now, we’ll just see how it goes with me….hope that’s alright with all of you.

On Sunday, I decided I couldn’t stand the pain and the constant Meniere’s attacks any longer.  They use steroids to break both cycles.  However, too high of a dose of steroids can really mess you up with Meniere’s and make you have worse attacks.  So I started on the dose that the urgent care doctor gave me and put a call in to my otologist at Duke on Monday.  Unfortunately, it was phone tag for a few days, and then he wasn’t comfortable messing with this prescription.  I do not think he understood the situation!!  I am so beside myself right now!  I mean right now, I just found out about this.  I am looking at these pills trying my best to figure out the best way to ramp down off of them without it being too drastic.  Going from 4 on one day to 2 on the next is not a good idea.  So I take out the prescription bottle and count how many I have left.  10.  Wait, I should have more than that to meet the original prescription.  I count again.  10.  STRESS!  I filled this prescription weeks ago.  Will the pharmacy really believe they shorted me?

Thankfully, yes they did.  I got 6 more pills.  I can do this.  Breathe.  Take the day as it comes, and accept it.  That’s all I can do.  So….I sit down and think.  I will figure out how to ramp down the steroids that is between the prescription the urgent care doctor gave me and the prescription my ear doctor gave me before.  I’m sure I’ll be fine.  It’s not quite such a severe drop between going down.  Should I be messing with my prescription?  Heck I don’t know!  But I feel better, with this regimen.  I’m too afraid to ramp down so fast.

For those of you who have been reading for a while….remember the Walmart incident?  That happened because a doctor put me on a high dose of steroids that ramped down too fast.
Now you once again have a VERY LONG POST.

and I’m too tired to read over it to fix any errors.   I’m being a very bad blogger.  I hope you will forgive me.   I just fell again today….I’m not going to write about that now!  I’ll tell all about my back/hip/leg pain after my doctor’s visit on the 6th!  I’m sorry, but I’m not up to being an editor today.  🙂   My back/hip/leg thing…just isn’t going to get better if I keep falling is it?  Of course, that’s why I’m falling!!   I can handle it…..one moment at a time.  I can handle anything for a moment, after all, isn’t that really all we know we have, this moment?

***rest in peace to my cousin Curtis Winslow.  My childhood memories are full of you.  1958 – October 1, 2014