Tag: chronic illness

Update On My treatment

On By WendyIn Chronic Illness, Cochlear Implant, Deaf, Meniere's Disease, vertigo, Vestibular Illness14 Comments

dandilion flower

My treatment for vertigo as laid out by the doctor at John Hopkins was to continue working with my migraine doctor to get my migraines and migraine associated vertigo (MAV) under control, go to vestibular rehabilitation therapy, and to have gentimiacin injections (a medication intended to purposefully damage the inner ear to stop dizzy spells in Meniere’s disease).

As you might recall I wasn’t thrilled with the doctor I saw in our city, and was not going to allow him to do the gentimiacin injections.  However, he did send me to vestibular rehab.

I’m still seeing my migraine doctor (a neurologist who specializes in headache pain), we are working on getting the migraines under control.  I can’t say I’m having fewer migraines but they do seem to be less intense.  It’s hard for me to tell if my vertigo is caused my MAV or if it’s a Meniere’s attack.  (If the vertigo is caused by MAV then  gentimiacin will not help.)  You may recall that I had seizures in February that caused me to be hospitalized.  My neurologist told me that one of my medications, Topamax, which is actually used to control seizures, can sometimes cause seizures.  It appears this may have been my problem.  I’ve since stopped taking Topamax and the seizures have subsided.

The vestibular rehab is going well.  I haven’t been to a lot of sessions yet, but so far so good.  When he did the initial intake exam he found I have still been having symptoms of Benign Paroxysmal Positional Vertigo (BPPV), and he treated it with the Epley maneuver.  This is something that the doctors I have seen ignored, the nystagmus (involuntary movement of the eye) is very slight, and the doctors didn’t see it, however, I felt like they didn’t believe me.  (I can’t remember if I mentioned these symptoms to the doctor at John Hopkins so I can’t say he ignored them.)  After this treatment I have had very little BPPV symptoms.  On the way home from the first visit I had a bad vertigo attack that last hours.  Since then my treatments haven’t caused an increase in my symptoms after leaving. During the treatments I often get a bit overwhelmed and wonky, but Ryan watches out for this and makes me take a time out.  I still have a few sessions to go before being reevaluated.

Now, about the doctor situation.  I will be seeing a new doctor on the 22nd, next Tuesday.  It’s kind of amazing how I found this doctor.  Advanced Bionics (AB), the company who makes my cochlear implants (CI), are going to have an event talking about new products just right down the street from me on Friday.  When I was sent a notice about it I decided to email to the AB representative for our area and discuss some of my issues.  I told her about how difficult it is for me to hear on the phone and wanted to know if they had a new product to help better with that.  They don’t, but I we both think most of my troubles there is lack of practice, since she has been a speech therapist for years she gave me good exercises to try to get me used to the phone.

I decided to tell her my predicament with not being able to get my CI’s program updated (called mapping) here when I have problems, even though there is an office that provides this service.  (they will only map CI patients who were implanted by their office)  As luck would have it, her husband works for this medical group.  He is an otolaryngologist.  He is new to the office and is working to get things better there.  He gave me suggestions about things and I decided to tell them about my problems with the doctor I’ve been seeing.  He told me he would be happy to take me on as a patient, or he recommended another doctor in the group.  He just wanted me to have a good experience there.  Wow.  I decided to go to see him.  He is very willing to confer with the doctor at John Hopkins.  He is also going to work to get my CI’s mapped at that office. Their rule is so people won’t go to a hospital just a few hours away and then expect them to do the follow up work.  I think it’s more complicated than that, but that’s a big part of it.    The big issue with me is that I wasn’t living here when I was implanted so I should be able to be seen there.  Is that just a lucky thing or what?  I’m so happy I reached out to her, you never know who may be able to help.

How am I feeling about my treatment?  Good, so far.  I’ll discuss it with my new doctor, but right now I think I’m going to put off the gentimiacin injections.  I’m doing much better right now and I just don’t want to take any chances that the vertigo is coming from my migraines.  I have been thinking we may as will have the injections in the ear that registered a 4 on the caloric testing. (the normal reading is a 21).  Since it’s that far down I want to know if it could help to go ahead and do the gentimiacin. We’ll see what he says on Tuesday.

So, that’s where I’m at right now.  Very grateful everything is going so well.

dandilion puff

photos by W. Holcombe 2016 all rights reserved.

The Crud

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease27 Comments

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.

Mindfulness Quotes

On By WendyIn Chronic Illness10 Comments

Mindfulness practice has helped me get through some of the roughest patches of my life.  I haven’t been practicing as much as I want and would like to resume, I thought a good way to start would be to post a few of my favorite quotes on mindfulness.  I hope you enjoy them too.  (all photos were taken either by me or Stuart)

“Mindfulness is simply being aware of what is happening right now without wishing it were different;

enjoying the pleasant without holding on when it changes (which it will);

being with the unpleasant without fearing it will always be this way (which it won’t).” ~James Baraz

palm tree palm springs

“In the end, just three things matter:

How well we have lived.

How well we have loved.

How well we have learned to let go” ~Jack Kornfield

butterfly on flower

“Be kind whenever possible. It is always possible.” ~Dalai Lama

“Realize that this very body, with its aches and its pleasures,

is exactly what we need to be fully human, fully awake, fully alive.” – Pema Chodron

road runner porch palm springs

“If you want others to be happy, practice compassion.

If you want to be happy, practice compassion.” ~Dalai Lama

“Be happy in the moment, that’s enough.

Each moment is all we need, not more.” ~ Mother Teresa

** One reason I haven’t been keeping up my mindfulness practice like I used to is that the depression side of my Bipolar Disorder has been taking over my desire to do many things.  I started seeing a new psychiatrist on Monday.  It was a very in-depth appointment.  I took a lot of psychiatric tests before I saw him.  They mainly showed that I have a bit of a hard time concentrating.  Two of them weren’t really fair because they are exactly like a “game” on Luminostity that I play a lot, if I hadn’t been playing that for a while I would never have been able to do as well on those tests.  We discussed my past treatments, what’s going on, all kinds of stuff.  He is adjusting some of my medications, and referring me to a therapist he thinks would be good for me to see.  I will go back in a month.  I’m feeling better just knowing that I am much more comfortable with my care provider and think this is a very positive move.

 

On my mind…

On By WendyIn Chronic Illness, Disability15 Comments
me pop and terry2
Left – Terry, my sister, Middle – My Pop, Right – Wendy, me

I don’t talk about my family often, other than hubby and the furry babies.  But there is something on my mind, something that may explain part of sadness.

My father had liver cancer in 2013, he went through treatment (chemoembolization) and they got it.  It was a much easier way to treat cancer than anything I’ve ever seen.  He has been doing well since then….

Until his check up in December, well even then they didn’t think anything was seriously wrong.  When he had his initial cancer he had a large tumor that they got rid of, and he had a tiny little tumor that they left alone, but they have watched.  It hadn’t grown at all then at his December check up, it was an itsy bitsy bit bigger, so they decided to go in and do Radiofrequency ablation (RFA) and get rid of it.  They did this the near the end of January.  During that procedure the doctor found more 2 tumors.

This was supposed to be an in and out no big deal procedure, but it took my father a while to recover from it.  Last Monday he had the chemoembolization again on the remaining tumors, this procedure is less hard on him.  Now this coming Monday he will have RFA again on both of the tumors.

My father is 82 years old.  This is really hard on him.  It’s also really hard on my sister.  She is taking care of him.  She was taking care of him after his first surgery when I was put in the hospital for having seizures.  She was so worried about me she got my uncle to come stay with my father and came to help me, then she turned around and went right back to care for my father again.  For over a month now she has had no life of her own, she has only been taking care of others, and I don’t know how much longer she will have to do this.  She is normally very involved in her grandchildren’s lives, I know this has to be hard on all of them.

I haven’t been able to go see my father.

I can’t help either of them.

I can’t help but think….what if…

and I can’t help but feel worried, sad, and guilty.

 

When you have times when you can’t help others who you love, how do you handle it?

I shouldn’t feel guilty for being sick, but at times like this, I do.  Well, I feel guilty that my sister has to shoulder all of this on by herself.  I feel guilty that I can’t even be there to hold my father’s hand.  And I feel guilty that I felt better today than I have since I can remember.

After days of having vertigo constantly, yes I had 2 days of rotational vertigo that went on every single second, I woke up feeling amazing today.

I had a really good day…..it’s hard when I think about what my family is going through.

 

Creativity As A Way To Cope

On By WendyIn Bipolar, Chronic Illness, Creativity7 Comments

As you look around the chronic illness community you will often find that we use creativity as a coping mechanism.  There is science to back up our intuition that creativity is a good thing for us.

“When we are involved in (creativity), we feel that we are living more fully than during the rest of life,” Csikszentmihalyi said during a TED talk in 2004. “You know that what you need to do is possible to do, even though difficult, and sense of time disappears. You forget yourself. You feel part of something larger.”

This quote comes from a much larger article on this subject I found on CNN’s site.  I thought it extremely interesting, perhaps you will too.  This is Your Brain On Crafting.

Today I thought I’d share with you some things I’ve been doing recently to spark my creativity.  I received a tablet for Christmas, it comes with a stylus so I can draw right on the screen.  I love it.  It’s hard when I have very little space, and I often have to stop working very quickly to bring out a lot of art supplies, so learning how to create art on the computer has been wonderful.  I’ve been using an app called Sketchbook. They post challenges that you can take on if you like.  This has been perfect for me.  I have had a very hard time creating art in the past year, deciding on what to do has been too hard.  The challenges give me a focus.  It’s like having an assignment back in school.  I get so involved in these projects that times goes by without me noticing.

 

 

If you would like to see the photos larger just click on one and you can see a slide show that will show them in a larger size.

The assignments were:

  • Upper left – Biggest Fear – Title “The Monster Within”
  • Top Right – Female Human Animal Hybrid – “Butterfly Woman”
  • Middle Right – Modern Mythical Creature – Loch Ness Monster “Nessie”
  • Bottom Left – Person I’d most like to meet – “Siddhārtha Gautama” (Buddha)
  • Middle Bottom – Abstract Tree
  • Bottom Right – Dream Home

Do you have a creative outlet?  You don’t stress thinking you are good at it or not, just do something.  No one else ever has to see it.  Coloring books are really popular right now, this is a great way to get your creative juices flowing.  Is there something you have always wanted to try?  Photography?  Learning how to crochet?  Knit?  Cook?  Stamping? Paper Crafts? Jewelry?  Poetry? Writing?  So much to try, so little time!!

After decades of research by Professor Mihaly Csikszentmihalyi he found getting involved in something creative produces the same effects as meditation.  Something he calls flow.

“When we are involved in (creativity), we feel that we are living more fully than during the rest of life,” Csikszentmihalyi said during a TED talk in 2004. “You know that what you need to do is possible to do, even though difficult, and sense of time disappears. You forget yourself. You feel part of something larger.”

If you’ve been reading my blog for long, you know I’m very into mindfulness and the benefits of it and meditation.  So learning this made me very happy, especially since I just haven’t been able to meditate recently.

(shh, I’ll share a little secret with you, I’ve been really depressed for a long time now.  The antidepressants I’m on simply aren’t working.  Things need to change.  I’ve had a psychiatric nurse practitioner here who writes my prescriptions, but she isn’t very good at working with me since things have changed.  I’m bipolar, I’m having a severe mood change, I need help. So I’m searching for someone I can really work with, and I think it’s time for me to go back into therapy.  I’m working on it, but it is taking a bit of time.  While I’m finding the right doctor and therapist that click with me, I’ll be trying to do as much work as I can to help myself.   Including, being a lot more creative.  I plan to post  much more about my days, to see just how I’m doing, the good days, the bad days, and all the days in between.  I hope you will join me on this journey.  I might even post more of my challenges.)

Keep Calm and Create

 

 

Recurring Grief with Chronic Illness

On By WendyIn Chronic Illness, Chronic Pain, Invisable Illness30 Comments

grief

Recently someone told me, not in these exact words, that they understood I have been though a lot and lost a lot, but I needed to stop pitying myself, I needed to move on.  I don’t feel like I pity myself,  but this hit me hard.

I’ve never said “Why me?”, I’ve always thought, “Why not me?”.   However, I have had a lot of losses, and sometimes it gets to me.  There are things I miss. Does that mean I sit around feeling sorry for myself because I can no longer do them….most of the time No….ummm….sometimes..maybe. Most of the time I’ve come to terms with it, and I’m happy with my life as it is….other times, the grief comes back in a wave that I just can’t control.  I’ve heard the same thing from other people who have chronic illnesses.

I have now read many studies, articles, and books that talk about this, and I found this is normal. (You can refer to the list at the end of the post for some of the material I read, if you want to check it out.)

Often we are handling our situation well, we have accepted the things we’ve lost….then suddenly the grief will hit us again.  Something may happen to spark it.  It could be you were feeling good and suddenly you are having a flare – now you feel horrible again, you just got a new diagnosis to add to your list, a medication you were on stopped working, there is an event that you can’t attend that means so very much to you, you tried to clean the tub and couldn’t….something happens….  Grief comes in waves, it doesn’t end just because you have been dealing with a situation for a long time.  Our grief is discounted.  People do not understand how we must grieve about the things we have lost, and how these losses continue to build up. Or how much we still miss this huge thing we lost. We cant hold this inside, it is not healthy.

When a person loses a loved one, they are expected to grieve. We often think there is something wrong with them if they don’t. We aren’t surprised when years later they still miss the person and sometimes need to cry. Everyone thinks this is normal. The chronically ill often lose huge portions of their life. The life they were living is suddenly taken away, changed forever. We aren’t just sick, but we often lose many things we loved to do, often our jobs, many friends, and a lot of our independence. We’ve lost all of this, but we are expected to bounce back, find a new life, forget what we had. I’m not saying we should sit around and feel sorry for ourselves all the time, but we need to grieve. We may have started a new life, we may be happy, but that doesn’t mean that we don’t have moments when we really miss what we lost.

I recently started having seizures.  This means, at least for a while, I am losing even more of my independence.  My husband is now working from home all but 2 hours a week, and for those 2 hours we are going to have someone come and stay with me.  Now I can’t just make sure someone is in the house when I take a bath in case I start to have vertigo, I need to have someone in the room!  This brought on a huge wave of grief. It brought back everything I lost. So much sadness, and it brought a lot of anger with it too. Of course, that is a stage of grief. I’m beginning to get a grasp on things, but I will need some time yet to grieve. I realized I haven’t really let myself grieve about a lot of my loses, I was so busy trying to be strong.

There is really only a couple of things I long for all the time and those are things that cause me to feel guilt.  Guilt also has a lot to do about letting go of loss.  There are some losses we hang on to because we feel so guilty we can’t do these things any more, this isn’t healthy.  We shouldn’t feel guilty, we are sick.  We can’t help that we can’t do things…but we still feel guilty.  Many of us feel guilty we can’t work. We feel guilty we can’t do things with our families.  Personally, I feel a huge amount of guilt because I can’t cook.  Hubby does so much, he is spread so thin, and he hates to cook.  I have a restricted diet, that makes things even more difficult, I feel so guilty that he has to cook, especially when I loved to do it….but I can’t.  It’s too dangerous.  It breaks my heart every time he has to cook dinner.  I know how much he dreads doing it, and how hard it is for him.  (but he really has become a pretty good cook)

Sometimes we are completely irrational for a while when we are grieving.  For example, I can get so angry with people, I feel so many people abandoned me.  I get so worked up about it and just want to scream.  If someone who normally gets in touch with me hasn’t, I will think they too have abandoned me, and will build up these huge things in my head….then they will get in touch and I’ll say, they did it just because they felt obligated.  Then, it will pass and I will realize my friend who got in touch, loves me and simply had things going on, besides I could have reached out to her. Thanks to mindfulness practice, and Toni Bernhard’s book How To Live Well, with Chronic Pain and Illness, I know that it hurt when people disappeared from my life because they didn’t react to my illness the way I expected them to, not because of what they did.  It’s my expectations that cause the pain.  I don’t know the circumstances, and frankly at this point, it doesn’t matter.  But sometimes, something will happen that will bring back that pain. And I will forget that it’s from my expectations and I just get mad as hell.  ….. And my dear husband hears all about it….then I calm down and let it go and I’m okay again.

The biggest point I’m trying to make it is, it’s okay to have a pity party, as long as it doesn’t last all the time.  It’s okay to grieve what you have lost, over and over again, it’s natural.  It’s okay to have a few things you will always long for….that doesn’t mean you are obsessed with it, it means it was very important to you and you just miss it.

Remember, if you lost a loved one, you would always miss them.  People do not think this is unusual, they do not think this is something we should completely get over.   We lost huge parts of our lives, why are we expected to not miss it?

I highly recommend Toni Bernhard ‘s latest book, How To Live Well, with Chronic Pain and Illness. In it she talks a little about this…check the chapter 35. It helped give me a way to deal with chronic illness. It gave me a lot to think about. Different ways to think about things, how to talk to people about my illness…. and well…I think you will get a lot out of it. Her first book How To Be Sick, I read over and over…. and I think this book is even better.

Greiving Chronic Illness and Injury – Infinite Losses
Experiences of loss and chronic sorrow in persons with severe chronic illness
Middle Range Theory of Chronic Sorrow

ER – ICU – 3121 – Home

On By WendyIn Chronic Illness9 Comments

I got home from the hospital on Sunday afternoon.  I just read the post I wrote while in the hospital.  I’m so sorry, I had no idea that it was like that.  I would have let you know I’m alive before now!  You should have seen the status I put on Facebook!  It completely blows my mind that at the time I read these things after I wrote them and thought they said what I meant to write.  Yep…*Swoosh* MIND BLOWN!!

Here’s what has happened….I’ll refresh your memory from the last post, as if you could understand it.

I’ve been having these little muscle twitchy things.  Sometimes just minor, sometimes more pronounced, it always happened on the right side and it coincided with long days of vertigo, or migraines.  When I was exhausted, stressed…ect.  On Wednesday it happened without these being present.  It happened 3 times at home each time getting worse.  We decided to go to the ER.  As soon as I walked ….wobbled…in to the ER, it happened again.  The first thing they did was have me pee in a cup (check my electrolytes), and then a CT scan. The CT technician was great.  When it was over he stepped in the office to do the paperwork and it started, I remember thinking, “Where is he”…and then I screamed when the elevator hit the bottom floor and I was in motion…and scared, really scared, and crying…I didn’t know why I was but I couldn’t help it.  The CT tech was leaning over me, telling me I was OK, that I was in the hospital, we were going back to the ER, and he just kept saying that.  That was the first of many for days….some better, some worse.

At first they put me in a normal room, it was just to be for a little bit, until they could get me on the 5th floor, it has cameras, they wanted to observe me all the time….seizure watch.  But there was no room on the 5th floor, so I was put in ICU.  I could not be left alone….or far from help.  Stuart was there, but he had to go home to take care of our pets, and gosh he does have to sleep.  Luckily, my sister came soon and helped, thank goodness.

While I was in the ICU I had a 24 hour EEG, actually it only lasted about 15 hours because I had more than 6 seizures during that time so they didn’t need the whole time.  It came back clear.  I was sent to a regular room.

The doctor came in and told me that I am having non epileptic seizures.  He said they had a theory…  At that moment, I had a seizure.  He told my husband that, no, what he was thinking would not cause anything like that.  He was thinking something much less violent.  There are theories, but I don’t even know right now.  I will be seeing  my neurologist today.  I see my PCP next week.  We’ll see.

Since I’ve been home the seizures have calmed down.  They aren’t as intense.  I don’t know if it will stay that way.

Strange thing, while I’ve been having the intense seizures I did not have vertigo.  I would have small little swirls, that lasted just seconds, but that’s all.  Yesterday when I had severe rotational vertigo for hours.  I didn’t have a seizure until it was over for a while.

But I was in the hospital from Wednesday night to Sunday afternoon without having any real vertigo?  Don’t get me wrong, I don’t want seizures instead.  I just think it’s weird.  Now that I’ve said that, oh lordy please don’t let me have both at the same time!

I think I’ve told you all I know for now.

So far…another mystery in this crazy world of mine.

I’ll talk more about this soon….but….I’m having a Pity Party, and I’m not ashamed to say it!

I hope this makes a bit more sense….I’m really too tired to proof read it, not like it did much good the last time.  🙂

My first Experience with Vestibular Therapy

On By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness2 Comments
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!

 

 

Hey Doc…What the……?

On By WendyIn Chronic Illness, Health Care, Invisable Illness, Meniere's Disease24 Comments

I went to the new ear doc to get the results of the vestibular testing, and I felt like I walked into the Twilight Zone.

twilight_zone
link to source

He walked in the room with his too big smile, shook my hand and told me something about the test…that didn’t make a lot of sense.  He said that it showed that I had reduced cochlea function in both ears.  That at my age he would expect it to be a 21, but my right ear is a 4 and my left is a 13.  I asked…”What does this mean?”  He said that it meant that my cochlea wasn’t working as it should in my ears…well duh.  I repeated, “Yes, but what does that cause?”  “It means you have vertigo.  And you might have this thing called Meniere’s”

WHAT??  I MIGHT HAVE WHAT?  DO YOU KNOW WHO I AM?  YOU DON’T REMEMBER ME?  YOU DIDN’T LOOK AT MY CHART BEFORE YOU CAME IN THE ROOM?

Okay, another reason that whole thing was weird….cochlea function refers to hearing.  My cochlea is not going to show up working on any test, I have cochlear implants, I have a device in my head that is coiled around my cochlea that vibrates so I can hear.  It doesn’t work on it’s own.  And the tests I were given doesn’t even test that.  But the numbers he gave me do correspond to the main test that I was given.  That was just so weird.

He also talked about a hearing test I had last February, I told him I didn’t have a hearing test last year.  He argued with me and pointed to the computer and said, that it said the tests showed my right ear had severe to profound hearing loss.  I looked at him and took off my Cochlear Implants and showed him and said, “I have Cochlear Implants, why would I get a hearing test?  However, I do have some residual hearing in my right ear, but…”  and he interrupted me and said….”That’s impossible, if you have Cochlear Implants, you can’t have any hearing…blah, blah.”  Stuart tried to explain to him that with the newest CI’s you often keep any hearing you had…he still argued.  Dang-it, I think I know if I can hear or not!  When I told him that I wouldn’t need a hearing test I saw the nurse point out to him that the date on the hearing test was not from 2015.  It was 2014, shortly after my CI surgery….of course he didn’t put that together, that I can hear out of my right ear, a little bit.  And he did not admit to us that he got the date wrong.  It’s also very sad that the audiologist that gave me the test knew that the new CI’s are often allowing people to keep some of their residual hearing, she was not surprised that I can hear a little out of my right ear.  (I want to explain, I can only hear a certain frequency, I can’t hear much.  For example, I was sleeping through the fire alarm at the hotel in December, yet Stuart said it was hurting his ears.  So it isn’t much hearing, but there is some there.)

Finally, I got tired of dealing with him.  I asked him a couple of questions, which I don’t really trust the answers to now, then I said, “So the plan is, I start Vestibular Rehab, I keep working with my migraine doc to get the migraines under control, keep up the low sodium diet, and taking the Valium twice a day.  After I go through the Vestibular rehab we will talk about the gentimiacin injections.  That’s the plan.”  Then I stuck out my hand to shake his.  In my mind he was dismissed.   He just had that plastered on smile like he had the whole time, and shook my hand and said, “That’s the plan.”

I saw no reason to spend any more time with that man. It was obvious he did not review my chart before he came in the room.  I do not understand how he could not remember me.  He told me when I saw him last time that I am the most advanced case he has seen, and how many other patients do you think he has that have been to Duke and John Hopkins?  Plus, Stuart and me together are pretty darn memorable.  I have NEVER had a doctor make me feel like they didn’t remember me.  I “might have this thing called Meniere’s”…geez…are you kidding me?  He said a number of other things that just didn’t make sense…like, “I thought you had gentimiacin and it didn’t work.” He just said that I might have Meniere’s and then he said he thought I had gentimiacin injections?  dodododo

About the tests….well he only gave me the numbers for the biggest test they did.  The Caloric Stimulation Test.  (click on the link if you want to learn about the test)  This is used to for damage to the acoustic nerve (hearing and balance) and it test the brain stem.  It is the only test that test the ears separately.  The numbers he gave me fit right in on this test.  21 is normal.  He kind of dismissed the 13, I really didn’t understand that.  Of course, the one that is really out of wack is the right ear coming in at only a 4.  So, I’m thinking when we get to the point of killing off the balance center we will do the right ear first and see if it straightens things out, or makes it so much better I don’t feel I have to do the left.

Now for the big decision, what do I do about this doctor?  I really don’t trust him enough now to let him give me a shot in my ear that will kill my balance center.  Heck I don’t trust him enough to give me a B-12 shot.

What do I do?  I can’t find another ear doctor in this whole city that knows anything about Meniere’s except for the other guy I went to who thinks he is a god.  He doesn’t listen to his patients…at least not to me, and according to his ratings on-line and on Angie’s list, he doesn’t listen to most people…he didn’t believe I have vertigo as often as I do.  Really?  Does he think I use a walker just for fun?   Ugh…..I hear stories like this from so many people with chronic illnesses, we have such a hard time finding doctors who are compassionate.  I’m lucky, most of my doctors are wonderful, but I’m having a heck of a time finding a good ear doctor since we moved.

I found an ear clinic I would like to go and check out that is close to 2 hours away from here.  I have a list of questions for Stuart to ask them on the phone before I even think about making an appointment.  If they treat people like it appears they do on their website, I think this would be a very good place to go.  They are very well versed in advanced Meniere’s, and they aren’t afraid to treat it.

As you can see, I do believe in being an advocate for myself, but I know when I can’t burn my bridges just yet.  I’m also not afraid to fire an incompetent doctor and as soon as I find a new one, I promise this doctor will know why he is being fired and I will write a review on him letting others know what I think.  The group does have a good support staff, too bad he is the only one in that group that (supposedly) knows anything about Meniere’s.

 

The Future is Scary, with a side of Hope.

On By WendyIn Chronic Illness, Invisable Illness, Meniere's Disease, Migraines12 Comments

It seems appropriate that I’m writing this on the eve of a new year, what better time to look toward the future?

For me, contemplating the future is more than a little scary…. let’s just say my anxiety about it has been more than I ever thought was possible.

After my illnesses changed my life, I learned about Mindfulness Based Stress Reduction (MBSR), it struck me how it has helped many people in many aspects of life, but mostly I was struck by how much it often helped people who are ill.  I had already learned of mindfulness during my studies in Buddhism, and while practicing yoga, but I admit I didn’t practice it regularly.

Over the last few years I’ve learned more and more about mindfulness, as I continued to studied Buddhism and MBSR, I’ve worked hard to live my life in the moment.  I don’t dwell in the past, (all of that is gone)…. I don’t worry about the future, (that hasn’t been written yet)…I try hard to live in this very moment, because that is all we truly have.

Yes, at times I still have moments when I get upset that I can’t do what I used to, and get upset about what might happen…but I don’t dwell on it.

Then we started making plans… how we are going to try to make things better for me….decisions about this unknown future, decisions that I have to make. Suddenly, I HAVE to look at the future. I HAVE to think about it.  And it really scares me.  Suddenly, I’m scared about being like thbe mindful of the futureis forever.  I thought I had accepted that and was okay with it.  Not that I was giving up, just that I accepted things if they didn’t change.  At least that’s what I thought, but actually, I thought I was going to be like this forever, I had come to terms with it, and now, that may change.  Now, I suddenly have options….plans.  I am having a very hard time not being anxious about the future.  I’m even thinking about things from the past. I keep thinking about all that I can’t do now, and how much my life has changed, and I keep wondering, could I get some of that back?  The main thing I know is that, I don’t want to lose myself in this quest to get better.  I don’t want to be afraid.  If I don’t get better, I need to know that’s not the end of the world.  I don’t want to start having to accept all of this all over again.

Each day I have begun to get more and more upset about things I simply can’t do.  As usual, most days all I can do is go from the bed to the chair in the living room.  But I tried hard not to let this get to me before.  I tried hard to make the most out of every moment…no matter what.  I’m trying now….but I am not doing as well as I have been.  Then I hear the voice in my head….Be Gentle With Yourself.  and I Breathe.  I am doing the best I can.  Yes, I’m a bit overwhelmed right now.  Everything is changing, all of a sudden, it’s going to take me a minute to keep up with it….deep breath….and I must remember, it still has to happen one moment at a time.

Okay, let’s move on from this and let’s talk about what the plan for my future is right now.

I was going to write a post right after my visit with the new ear doctor here in town, but I decided to wait until after the tests and the results.  I was supposed to get those yesterday, but I had to reschedule my appointment,  guess who was too sick to go?  Surprised?  I’m not….I have cancelled so many appointments because of vertigo, you just can’t imagine.

So, I’ll give you a break down of what is going on as of now…..

I saw the new ear doctor here.  So far he seems pretty good, I was impressed with his knowledge about Meniere’s, and he is very willing to work with the doctor from John Hopkins.  He suggested I start taking a low dose of Valium twice a day to try to keep my vestibular system calm.  He wants me to keep track of how much Sodium I’m eating.  (Okay, I laughed at that.  I know I don’t intake much sodium but since I haven’t been keeping a record he was not convinced.  I have been eating a low sodium diet for years, I know how much sodium is in almost everything, I don’t eat processed foods, and if I eat out I order everything without seasoning….yes I know that is boring, but it is safe with all of my food issues.  So I tracked my food since I saw him, I admit I was curious too, the results?  I normally consume just under 1000mg a day, I haven’t been over 15o0mg in any given day.  They say a low sodium diet is 2000mg a day.  I don’t think I have a problem there.)   I’m starting vestibular therapy on January 12th, we’re going to start training my eyes and body to balance without my ears.  I am to continue working with my headache specialist to get my migraines under control.  We will talk more about killing off the balance center after doing all of this and seeing if it helps.   Also after seeing the results of the vestibular testing I went through, we want to see if one of my ears is close to being dead already, if so we may go ahead and kill that one off, it may be causing much more trouble than the other.

(just let me say, I’ve been through these tests before and it wasn’t so very bad the first time, this time, it was absolute torture.  I cried.  I am not that kind of person.  If my husband hadn’t been back there with me, I don’t know how I would have gotten through it.  The person giving the tests told my husband she thought I was suppressing, because some things that should bother everyone I was not showing too much of a response on.  I thought that was strange.  I didn’t feel like I was suppressing, but after I’ve been going through this for so long, I’m sure I automatically try to not have vertigo when it is coming on.  I didn’t throw up, I almost did, I had cramps like dry heaves were coming, but no vomit.  Yay!  it really takes a lot to make me throw up now.  I rarely throw up during an attack now.  I get really nauseous, but I rarely throw up.  I always thought it was the meds.  Heck it’s already ruined my teeth and caused burns in my esophagus, I’m very happy it stopped.  Anyway….I’m very interested to find out the results of the tests, and upset I didn’t get to go yesterday.)

He does think my Meniere’s is definitely autoimmune.  Not that I want an autoimmune disease, but it does explain a lot.  Most of my doctors have felt I have symptoms that lead to one, but haven’t been able to put their finger on it.  I just have so much going on, and everything gets worse with stress, and gets better with steroids.  I often run a fever and no one can find a reason.  I have a marker for an auto-immune disease, but the one I have a marker for I do not test positive for….however, that is a red flag that I could have another.  They believe they simply do not have a test for the autoimmune disease I have, or I don’t test positive for it.  Like a friend of mine, has rheumatoid arthritis, but he always tests negative for it.  It is visible on all scans and he responds to treatment, but the test for it comes back negative.  So, in other words, we can’t prove it, but it is thought that it is an autoimmune disease, at least in my case.

So, there is the plan for now.  I don’t know what will happen.  How it will change.  Or anything right now.

I feel that there will be a lot of change around the corner.

The future is scary, but it holds promise, and hope…..something I haven’t had in a long time.