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.
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.
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.
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.
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.)
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!
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.
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 this 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.
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 – 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?
I wanted to share with everyone that I’m featured in an article in Everyday Health. It is titled How Vertigo Changed My Life. I am one of two women featured in the article. I’m thrilled that Dr. Sanjay Gupta, felt that the impact that vertigo can have on a person’s life needs to be brought to the attention of the public. The general population does not know much about vestibular disorders, you just don’t hear about us very much. There aren’t commercials for medications that will help us, or anything like that. Vestibular disorders are kind of confusing, even to a lot of doctors. I’m honored, and thankful that they asked me to be a part of this article.
I hope you enjoy the article. It’s a short read. Please let me know what you think.
Top Ten Facts about Vestibular Disorders (This list is put out by VEDA. The comments in bold italics are by me, all about me.)
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.)
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.)
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*)
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.)
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.)
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.)
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.)
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.)
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*)
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)
When I’ve been away from blogging for a bit it’s really hard to get started again.
I keep thinking…where do I start?
I’ll have a good day and I will start to write, and get overwhelmed….well I don’t want to mess up a good day, now do I?
Then I’ll have a string of bad days…oh yeah…we know those….and I think, I should blog about those, but I don’t want to sound like a broken record. After the last post I put out, I thought, Gosh…same crap, different day. Not completely, no two days are ever completely alike, but you get my drift. Sometimes people forget a Chronic Illness is called Chronic for a reason. For me, I do understand that….I know my illnesses are not going away, maybe they will get better, maybe worse…. but going away…don’t think so. I do not, however, completely understand it when they change. And lately, they have changed, a lot. Do I want to talk about all of that….well I have talked about some of it, and I’ll probably mention more of it…some I’ll probably mention later….oh you know me, I talk about everything. It will all come out eventually.
Mostly my moods have been, well, in the crapper. Hubby and I and the furry babies to have fun. Laughter is the greatest isn’t it? But the migraines and vertigo…..the fear….the fear…it just doesn’t go away. I’ve had so much pain and vertigo over the last few months, I live in constant fear. and, pardon the pun….but that scares me.
healthshire.com
I know you all want to hear about my complete melt down where I felt like I should have been committed…I now understand what they mean when they refer to people having a “nervous breakdown”. But really, do you really want to hear about that? Tell me if you do, and I’ll tell you about it…just know I’m OK. I didn’t hurt me or anyone else. I just kinda flipped out…yelled, screamed, cried…all at the same time….and did it some more. Then I was exhausted…slept…and cried a lot the next day too…..
I can tell you a few things that I’m pretty darn sure contributed to it….maybe you won’t worry so much after that.
I was on a certain medication for my migraines, it is also an antidepressant. It wasn’t working, so I went off of it. I was not on high enough of a dose that I should have needed to taper off of it. I think that was wrong. I crashed right after I stopped taking this drug.
I have a lot of crap going on. Still having very intense migraines…A LOT. Like almost every single day. And vertigo, the same thing. To the point, I hate leaving the house. Did I mention fear?? I have been leaving more, and most of the time I have a vertigo attack when we are out. I’m starting to get less and less freaked out by this. Just get me in the car, and I’ll deal. I’ll talk more about my vertigo attacks sometime in the near future, they have changed a bit, and my treatment for them has changed a bit. I should share some of that. However, I’m having these spins when I turn over in bed, it scares the crap out of me. I’m asleep, I wake up a little…kinda…go to turn over and BAM..vertigo! It doesn’t last long, but it is terrifying. Sometimes it does last…so I never really know, but most of the time, it’s just a few seconds. There’s other stuff too. I’ll tell more later. It’s kinda interesting if you’re into that kinda thing….you know, sadistic.
Menopause. Yeah, there are things about this that no one told me….why? Why didn’t my doctor tell me more about it? Do people just assume your mother is going to tell you everything? What if you don’t have one? Well this is a matter for a whole other post in itself. Yep…I think it’s time we dish a little bit about the big M. And I actually don’t have a lot of symptoms…golly, I sure feel for those ladies out there who have it bad! But one thing I am having recently, every month I feel like I’m going through my period. The mood swings…really bad, cramps…all the goodies, just no blood. Yes I said it! In October it will be 2 years since I’ve had a period, and this starts now? Pfft!
So….there ya go…..those things led to a melt down. “I’m sick of being disabled at 52!” and much much more!! I even hated my husband because he could take a walk and I couldn’t. Oh yeah, I was completely irrational, and feeling sorry for myself. No….I have been so ANGRY I have found it hard to live in my own brain. Who wants to live with those kind of thoughts all the time? Snarky, oh way beyond…ew.
I’m trying hard to pull myself out of it. And you know, I do a pretty good job of it. But outside factors have been eating away at my normal brain. This is when I decided to try what a friend of mine used to say she did, “Fake it ’til you make it.” She said she would fake the feeling good and put on a positive front until she really felt that way, and it often worked. So I decided to do that. It kinda worked. I had some good times during it. But I still had that …urgh…underneath. *umph* Still it did help a bit.
I combined that with a lot of deep breathing. *Ahh*
And trying to do more mindfulness…but it’s darn hard when your head is hovering around a 7 every day, spiking to a 9 many days. And the vertigo has decided it’s going to start doing this new funky thing where I suddenly feel like I’m falling down an elevator shaft…just free falling!!! What the heck??? I found myself clutching to Stuart and screaming….”I’m falling!!! I’M FALLING!!! PLEASE DON’T LET ME FALL!” Yes my brain knew I wasn’t really falling….or maybe it didn’t, it sure wasn’t telling me I wasn’t…..I sure felt like I was falling into an abyss. That is one freaky thing, I tell you. When they say people aren’t afraid of heights, they are afraid of falling…well duh! I’ve always been afraid of heights…well guess what, that terror comes out when I get this weird vertigo. It has happened a few more times and I’m better with it now (kinda), I can’t imagine what I will do if it happens and Stuart isn’t with me….because it is freaky….but less freaky than the first time (um…kinda). My brain is beginning to wrap the truth around the situation that I really am not falling, no matter what my vestibular system is telling it. *good brain, I knew you were one smart cookie*
Now that makes it kinda scary to go out in public. Can you imagine if I were in a store and suddenly I start screaming, “I’M FALLING!” Oh yeah….Call the cops, this chick is doing acid!
Soooo, any who, I’m completely losing my train of thought and going all over the place aren’t I?
See this is what happens when I haven’t posted in a long time. I think of all these things I want to tell you, and things just start tumbling out.
Maybe I should just stop for the day. If I don’t I might end up putting this down and then I’ll not get it posted and you will miss me. You do miss me don’t you? Yeah I know, I’m a little cheeky today. *wink*
is 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.
Picnic with Ants 