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)
I wrote the following story about the day I had to have my first lumbar puncture. It was a challenging day to say the least. I got through it because I researched it, and I trusted my doctor. Now, I’m not saying to put all of your trust in just any old doctor. This doctor had been seeing me for a while and deserved my trust. Not only did the research and the trust of my doctor get me through this challenge, but he support of my husband helped me so much. He was there with me every step of the way. Having that kind of support really helped me through this challenge. It also helps me to think about others who are going through the same thing I am at the same time and send out love and compassion to all of them, this will include myself.
This story was written about a procedure I had on November 3, 2010.
Wendy sat in the waiting room, waiting for her name to be called, waiting for another test, waiting for one of the scariest procedures she could think of having done. Her husband tried to make small talk, and he held her hand. She knew how lucky she was to always have him by her side, he always made things better just by being there. Could he possibly know how terrified she was? She wondered if she could be as understanding and supportive if the circumstances were reversed? Could she be so selfless? Could she simply do what was right? For him, she thought she could do anything.
Looking around the room, Wendy wondered how many people were going to have the same test she was having? How many people were unsung heroes like her husband? How many were there because they felt they had to be?
“We want to do a lumbar puncture.”, the doctor had said. “We have found that some patients with your symptoms have abnormal cerebrospinal fluid pressure.”
“Alright,” she said. Why did she believe this doctor so much? He is a specialist in vestibular problems, but it was more than that, he gave the impression that he really cared. She knew deep inside that he would never ask her to do anything he would not do if their situations were reversed. She quietly asked, “Is it painful?”
“A Lumbar Puncture is a Spinal Tap. However, your procedure will be done under a live CT scan, and you will be numbed. It is not scary like it used to be. Not when it’s done under such a controlled environment.”
The only words that Wendy heard were, Spinal Tap. When she was a small child she was scheduled to have a spinal tap, but the doctors decided to try different testing to see if they could find out the answers they needed without putting a small child though such a “painful” procedure.
This memory came flooding back. She could taste the bile in the back of her throat, the tears forming that she refused to let fall, she would not show the terror she was experiencing. She nodded, as the doctor spoke, hopefully at the proper times. After leaving the exam room and making the appointment, she couldn’t make it the car fast enough. She broke down.
She had been through so much this past year. The vertigo attacks often lasting hours upon hours, many days each week. The surgery on her right ear that helped the vertigo caused by that ear, but now the left ear was causing just as much trouble. The profound hearing loss. She’d simply lost so much, would this test help? Could it actually provide any answers? What if she refused? Could they do something else?
Her husband patiently listened, and told her, “You can always change your mind. Just give it a few days and see how you feel about it. Do more research. I know you. You don’t want to make a decision based on emotions, you will want to find out more, much more, before making that kind of decision.”
Of course he was right. A spinal tap! The fear stayed knotted in her stomach for days. She read as much as she could about a lumbar puncture performed under a CT scan. She also found out as much as she could about the doctor who was going to do the lumbar puncture. She found that a lumbar puncture preformed as hers was scheduled should not be a painful or dangerous procedure. She also found that the doctor performing the procedure was very highly respected.
She also found that many times a lumbar puncture is performed just like they always have been. This brought back all the fear. The poor patients that must undergo this test. It’s painful, it’s scary, and it’s dangerous; but she understood sometimes people cannot have a CT scan but need to have the procedure done, or it has to be done quickly. Relief swam over her knowing she would not have to undergo that type of procedure. She silently sent out love and compassion to all who were having a lumbar puncture that day.
“Wendy?’ Her husband pulled her from her thoughts….. “They’re ready for you.”
What is wrong with me? This is the question I kept asking over the past couple of weeks. Heck I’ve been asking this question a lot over the past couple of months, I just keep seem to be falling apart. But I don’t think that way….or I try not to. I accept things as they come. I just roll with the punches. Yeah. Well that isn’t how it has been going. I’ve been trying. But I’m not succeeding right now.
It has just been too much. This post is about the latest….
I mentioned a little in the beginning of my last post: VERTIGO…MAJOR!
It started the beginning of this month. I would just suddenly have this whoosh feeling and I’d start to spin. It just felt different. I can’t explain it. Maybe it was different because I had been feeling so off for so long. I had been having the severe disequilibrium for so long (feeling like I’m on a boat all the time) and not being able to focus on one spot without it moving. Maybe? Really, who knows. But these attacks…they are different. The start, it just feels like I moved my head too fast, but I didn’t move…and suddenly I’m in full spin.
One night I had a drop attack, but it felt different from any I’ve had before, and I haven’t had one in a long time. We were watching Jeopardy, and suddenly I felt like an entity had just come up and partially entered my body and pushed me over on the couch and I gasped…one of those screams where you suck in all your breath…I just fell over on the couch and was in full-blown vertigo. If I had been standing, I would have hit the floor hard! It scared me so much. Not just the falling, but that feeling before hand, I literally felt like there was something trying to enter my body and pushed me over. It scares me just thinking about it.
When it started I had just had a day completely vertigo free. I could focus on a spot without it moving, the boat stopped. Relief.
What happened for that day? What happened after that day? These are questions my mind likes to ask but no one can answer, I try hard to stop the loop of questions, but it’s hard. I’m an inquisitive person. I’ve always been that way, I want to know how things work, I loved science and proving theories. Telling me that no one knows something about a scientific problem is hard for me. I keep thinking I’ve accepted that. And I have. I have. But I don’t want to. I want it to change. I want to know what is happening to me. What changed? And more than that, I want for people to stop asking me that question. It is hard enough for me to not have the answer for myself, but when someone else ask it, it cuts me to the bone. I want to just scream….I DON’T KNOW! Please NEVER say to a chronically ill person, “Why can’t they do anything?” of “I think you need to find a new doctor.” You have no idea how many doctors I have been to and still continue to consider. However, this is my life. It is my decision how I get treated. You do not know what it is like to live with this, and you have no idea what the treatments are….do not tell me what I should do. (unless of course you have this disease then you can talk to me and if you over step your bounds I will feel I can tell you to so. That’s different, we are going through the same crap…excuse my colorful language.) However, normal people do not understand. Heck, some people who have this don’t understand, it’s different for different people.
So….off that soap box and pity party….
I went to the doctor on Wednesday. Yes the doctor here in Charlotte. He really doesn’t listen. I will not go back to see him. I am glad I will be able to see the audiologist here when I can’t get to Duke, but I will have to find a different doctor. (and I don’t feel right going to the audiologist since they don’t get paid, I’ll only go there if I absolutely have to.) They do have a lot of doctor’s in that practice, however he is supposed to be the “head guy” who knows about Meniere’s. I will be doing some research, but if he is the head guy…I am up a creek. Let me tell you about my latest visit.
I did get an appointment rather quickly, that was nice. We got to the office and I had to be taken in by wheelchair. They thought I was in a wheelchair because I had back surgery?? I never said I was having back surgery. I did tell them I had a herniated disc and was having physical therapy, therefore I wouldn’t be able to do vestibular therapy until I got that straight. (Where did this information come from?) He asked me about these attacks, how long they have been happening and what they were like. I told him …bad attacks lasting 30 mins to over 3 hours, 3 to 6+ times a day, coming on with no warning. He asked me to describe the attacks. I looked at him and said. “You know what a Meniere’s attack is like.” Yes, I was a bit snarky. I had been through telling him what my attacks were like the last time I was there. I have never had to tell my last doctor what my attacks are like every time I go in there. He said “Yes, but I want to know what your attacks are like.” I started to tell him, I told you last time, but I didn’t. I said, “severe rotational vertigo, severe tinnitus, want to die!” “Yes, that’s normal” DUH! Stuart them tells him how much my eyes have been vibrating with these attacks. I got him to really look this time, and he really noticed, he as surprised he hadn’t seen it so much before. My eyes really dilate, and I have nystagmus really bad during an attack. I need light or I get really sick, but lights also hurt because my eyes are so dilated. My eyes hurt so much after just a few minutes, after hours…well dang! So the lights are normally dim and my face is in a bucket throwing up, of course my darling husband doesn’t normally see my eyes vibrating. Poor thing felt guilty he hadn’t really noticed as much before. I was having him look because something with Meniere’s one eye will vibrate more than the other telling you which ear is causing the attack…not all the time, and not this time…darn.
Back to the visit. The doctor then looked in my ears and does this thing where he makes me follow his finger with my eyes….he moves his finger really fast. I tell him…that makes me sick. He keeps telling me to look at it. I look but I will not look fast. I am not going to throw myself into a spin in his office just to perform his little test. (I know it is neurological test, I’ve had it many times before, you do not have to do it so fast) I had already taken 3 or 4 Valium that day because of the attacks I’d already had. I can tell he gets frustrated with me when I don’t do the test as he wants. oh well. He asked what I take for my attacks, I told him, Valium and Phenergan. He said, well that’s the best. He asked if I had this happen before. Yes, in the spring of this year, and explained it had been after I had been on a high dose of steroids for my migraines that tapered off too fast. My ear doc had to put me on steroids that tapered off slower. He said, I told me I only have attacks 2-3 times a year. I said, I only have very severe attacks 2-3 times a year, I have small, and mini attacks almost every day. He said nothing. He paid NO attention to that. He acts like since I don’t have severe attacks like I have had the past couple of weeks all the time then this is not debilitating. He really heard nothing I said about how this is affecting my life. He heard nothing about how I can’t focus on things without them moving. He DOES NOT LISTEN TO ME! Why? Later when I got home I was so upset, I talked to Stuart and was in tears, “Did I down play my Meniere’s to him the first time I saw him? He doesn’t understand what this is doing to me.” Stuart then told me…that no, he just doesn’t listen, he only hears what he wants to….I digress again…back to the visit….
So he wrote me a prescription for steroids. Good, that is what I expected. He told me the dose and I thought…That’s High. He then said some people get very agitated and have mood swings on these….I told him I do, and it can be pretty severe on a high dose. He ignored me…”If you have a problem call me” I just told you I have a problem! Listen to me! I explained again about how the high dose prescription from my migraine doctor that tapered off too fast made me spin. He said, “This won’t make you spin, but if you have a problem, call me.” Hmmm, are you listening to me?
I got the prescription and started it. The next day I couldn’t stop crying. I looked that the dosage….and the tapering. 60mg a day for 14 days! then 40mg for 2 day, 30mg for 2 day, 20 for 2 days, ….you get the idea. 14 days then 2 days each…that’s a pretty fast ramp down! and 60mg of prednisone for 2 weeks!! I will be going out of my mind! It is very hard for me to deal with these emotional swings with my bipolar swings anyway. It makes me feel like I am having bipolar episode, and it drives me crazy. I can’t trust my own emotions. I don’t know if all of my mood swings are from the steroids or if I need to be evaluated for bipolar stuff. So, I thought….I can’t do this. I decided to look up my chart on the Duke Patient Portal and see what my prescription was from my doctor there. It was for prednisone, 10mg tablets, so that was all good, but the dosage was much different. I’m following his dosage. He starts out at 40mg for 5 days, then goes to 30 for 5 days….ect. a much slower taper down, and I know I did fine with it. I will also be taking half as many pills.
Is this the right thing to do? Should I be treating myself? In this case….I don’t really think I’m treating myself. I don’t like to go against a doctor’s prescription, especially about steroids they can mess you up! But I know my tolerance to them and I know they do mess me up. I once swore I would never take them again….but sometimes you have to do something that you don’t want to do to survive. I feel like since I couldn’t go to Duke to see my doctor, I’m doing the next best thing. We did call him and he said he felt steroids would help again, but didn’t feel he could prescribe them without seeing me. (My point…as I say in my disclaimer, I am not giving medical advise. I do not advise anyone to ignore what their doctor tells them. This is just my story.)
Good news. The steroids are helping. I’m on day 3 now. The first day I had a mini attack and a few hours feeling like I was VERY drunk, I was more sick to my stomach than I was during most of my attacks, and that is saying a lot! Unfortunately, I had run out of what I had been using to really control my nausea, so I was really sick that night. Yesterday, I didn’t have an attack. I did have that drunk feeling again last night right when I was getting tired, same as the night before, thankfully it didn’t get as bad or last as long. So it looks like things are getting better day by day. Tonight, I am going to force myself to go to bed and to sleep as soon as I feel tired…maybe that will stop that drunk feeling.
that is the story of my last couple of weeks.
It has been hard.
The last few months have been hard. Physically and Mentally. It has also been hard because the doctors I trust are 300 miles away. I’d also like to see my therapist, this has been a lot to process, and I’d like to have her to help me through this with the mood swings. I moved here feeling so much better, with so much hope, so much promise. I thought I was ready to handle anything life through at me. I was wrong. I’m still trying hard to live in the now. I’m trying to accept things as they are, and accept my feelings … nonjudgmentally. that is a BIG thing. I may be having a really rough time, and I may not be able to accept life as it is without wishing it to be different, but that’s alright. I’m just not there yet. Right now I’m hurting, and I need to be here for a little while, and stop judging that. I’m still hopeful and good and happy and loving….it is just that the hurt is in front of it right now. And I’m not going to judge that. I’m just going to wait until it goes away, and since I accept that is here, and a part of me, the faster it is lifting and the other parts of me are shining through.
When I mentioned writing Part 3 in this series I said it would be on Mindfulness Based Stress Reduction. I will touch on this subject, but I do not feel qualified to base my whole post on it. I will tell you how I got involved in mindfulness and how it led to Mindfulness Based Stress Reduction. (Note: I may refer to Mindfulness Based Stress Reduction as MBSR throughout this post.)
There have been a few times when I have read some of the Buddha’s teachings. My husband has called himself a “non practicing Buddhist”. After really studying more about Buddhism, I find this funny, but that isn’t a discussion for here. I mention his interest in Buddhism because it is what caused me to start reading about it. As I started reading and studying the Buddha’s teachings I found I was happy. It made me happy. Buddhism can be thought of as a religion or a philosophy. Many do not consider Buddhism a religion because it is non-theistic. You can follow the Buddhas teachings and continue to follow any other religion. However, that is not part of this discussion, I just thought it was interesting.
An essential element of Buddhist practice is mindfulness. Mindfulness, as defined by Psychology Today, “is a state of active, open attention on the present. When you’re mindful, you observe your thoughts and feelings from a distance, without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening to experience.”
I’m sure you have noticed in many of my posts that I have mentioned that I am staying in the moment. I no longer dwell on the past, I do not worry about the future, I live in the now. This is just a part of being mindful. It is also important to note the part about…”without judging them”. Always be gentle with yourself. I used to be very bad about that. Even my doctor used to tell me, “Wendy, give yourself a break.” This was when I was very sick, I felt guilty about it. Now when I feel those thoughts come up, I will observe it, and sometimes I get wrapped up in it for a little while, then I notice it and take a deep breath and tell myself. “Wendy, be gentle.” and let it go. I bring myself back to the moment. I’m still in the infancy of mindfulness, I’m just learning, there’s much more to it than I know.
I have had many people get in touch with me who have Meniere’s disease, and I think every one at one point has said, “I just want my old life back.” This is, of course, a natural feeling when we get hit with such a devastating illness. However, this feeling often stays with us for a very long time. I realized through mindfulness I could let this go, and it was the best thing I could do. Looking back at my old life and wanting it back was not helping my life now. Nor was it helping to longing look at the future and hope for things to get better, or to look at the future and just know things could only get worse. I started using mindfulness to just look at today, and stop looking at my old life, (honestly, I didn’t look at the past for long, I’m one of those people who when they get hit with something says….”what now?”) However, I was constantly looking forward. Either with all my hopes on the next thing we tried, or when it failed believing that nothing was going to work and I was going to be bed bound and useless forever. (no I didn’t feel sorry for myself, I thought I needed to be prepared. well sometimes I felt sorry for myself.) With mindfulness I stopped doing that. I started just looking at today. Living in this day. That doesn’t mean I don’t make plans, that means I just go with the flow if plans change. I don’t freak out, I just go with it. NOT worrying about my future has made my future open to be written as it comes.
One symptom that has changed in such a drastic way because of this practice has been my vertigo. When I first started my mindfulness practice I was able to stay calmer during an attack. Then I was able to get through an attack without freaking out at all, I could stay completely calm. This turned to starting to focus on an object about 18 inches or so from me, I put my hand down on a solid object and breathe, telling myself aloud…”you feel the object is not moving, this is not real. This is not real, this is solid beneath your hand, it is not moving….” continually focusing on the object. Soon, I never saw the room spin unless I looked up from the object. Now, if I feel an attack coming on I can normally take a deep breath and center myself, focus my eyes on something still, and pull myself out of it. I usually stop the attacks now. Sometimes it takes a bit. I have to get cooled down and I need to be still for a few minutes just focusing, but I never start spinning. It will start to rotate a little but I will pull my eyes back to center, take a deep breath and just feel where I’m at. Tell myself it’s OK. I’m OK. If it happens I’m OK. It’s not real. Stay centered. Stay right here. I’m really just doing what I did during the attacks, staying focused, telling myself it’s not real, but now I’m simply being gentle with myself and letting myself know I’ll be OK no matter what, and it calms down and goes away. I started to panic the recently and I came very close to having a full-blown attack, we were in the small moving van getting things that were missed by the movers, riding to Charlotte on the freeway. I was scared because of where we were. When Stuart was able to stop, I calmed down and got everything under control and it went away. I was shocked. I was starting to spin. It was going, then suddenly it wasn’t.
Mindfulness and my mental health. My last visit to my psychiatrist was so happy. She was so impressed. We talked and I said something about what I told someone in answer to something and she said, “you really have been practicing mindfulness haven’t you?” We continued to talk and she reduced my anxiety medication. I’m not sure if I will be able to have more of my medications reduced, but I’m thrilled about this. It has been almost 2 months and I’m a happy person. I’ve had some periods of depression, but they were warranted, and were not prolonged. I have not been seen my therapist in over 2 months….I have been released to see her only as I need. So far, I haven’t felt the need. Great news!
Practicing mindfulness is the best thing I’ve ever done for myself.
That was how it started. Just little things. It moved to more things. Somewhere along this journey I started reading about Mindfulness Based Stress Reduction and Mindfulness Based Cognitive Therapy. Mindfulness Based Cognitive Therapy I’m interested in but know very little about, Mindfulness Based Stress Reduction I’m very interested in, I’ve read a lot about, and want to share some with you so here’s a little introduction to it and how I found out about it….
Mindfulness-based stress reduction (MBSR) (as defined in Wikipedia) is a mindfulness-based program designed initially to assist people with pain and a range of conditions and life issues that were difficult to treat in a hospital setting developed by Jon Kabat-Zinn at the University of Massachusetts Medical Center, which uses a combination of mindfulness meditation, body awareness, and yoga to help people become more mindful. In recent years, meditation has been the subject of controlled clinical research that suggests it may have beneficial effects, including stress reduction, relaxation, and improvements to quality of life, but that it does not help prevent or cure disease. (There have been some studies that contradict these findings, but I found many more studies on the positive side than the negative.) While MBSR has its roots in Buddhism , the program itself is secular. (funny thing, I always thought secular meant religious, but it means not religious, so when I was saying non-secular, I was really meaning religious. I learn something new every day!)
The MBSR program is an 8 week workshop taught by certified trainers. I have not been to one of these workshops. They are often expensive. The one at Duke is very expensive. When I first read about the classes it was from a brochure at Duke and I was instantly drawn to it and turned off at the same time. It looked very interesting but the cost was outrageous. I remember thinking it must be some new age thing geared toward the rich, since the workshop was so expensive and insurance didn’t cover it.
A year or so later, I started learning about mindfulness on my own. I came across books by Jon Kabat-Zinn. He talked about how this is something anyone could do and it didn’t have to cost anything. I knew then MBSR wasn’t meant to be simply for the rich. I’ve read his book Mindfulness for Beginners, it is very good. I’ve also read parts of some of his other books. (they are always on hold at the library and I haven’t been able to finish them before I had to take them back…..so I’ll get back to them…but there are more…Full Catastrophe Living, Wherever You Go There You Are, Coming to Our Senses.….) I’ve read books by other authors, I’ve read a lot about Mindfulness Based Stress Reduction on the internet and there are a lot of YouTube videos on the subject, many with Jon Kabat-Zinn speaking. You can even hear some of his books read through YouTube, I found that interesting. I am reading the book called Mindfulness: An Eight-Week Plan for Finding Peace in a Frantic World, by Mark Williams and Danny Penman with the Foreward by Jon Kabat-Zinn. This book is much like a journey through one of the workshops. I’m only on week two, but it is very interesting. It has deepened my mindfulness practice and awareness. I had much more of just an informal practice before, I now have a formal and informal practice. I take a certain amount of time to formally practice mindfulness, and I informally practice it throughout the day. Before, I would kind of formally practice it occasionally, but now, I have a set time that I practice. I also had a very hard time meditating before. Now I’m much more gentle with myself. I don’t feel I have to do it right. Ya know, I don’t think anyone really, does it “right”. It’s right for you. (or for them) It is will change as you change. So for now, I must have guided meditation. Perhaps I always will. Both of the books I mention above have guided meditations included with them. There are also guided meditations on YouTube. (luckily I can now understand recordings through my blue-tooth to my Cochlear Implants, meditation would be much harder for me if I couldn’t do guided meditation).
I realize this may sound like I’m crazy about Jon Kabat-Zinn, not really. I wanted to learn more from the person who started the program first, but I have found wonderful information from books that were not by him. Also you do not have to practice MBSR to practice Mindfulness. It’s all mainly just mindfulness, I think the MBSR books are simply written more therapeutic and less spiritual. Many of the spiritual books that I found that talk about mindfulness kind of got on my nerves a little. Yes, it’s comes out of Buddhism, but it’s not about religion. It’s simply a good thing, and I’m sure if you looked in other places you’d find something like it, maybe not as detailed, or called the same thing. Plus, Buddhism been around a very long time, so they got a jump on it I guess. haha
This is my story so far with mindfulness. There is a Mindfulness Based Stress Reduction program offered here through Carolinas Health Care (where hubby works now) that is much more affordable. (no he does not get a discount) They will even work with people who cannot afford the class, they don’t want anyone to feel they cannot attend because of funds. We are thinking about attending the workshop in the Spring. If we do I will certainly blog about the experience.
This concludes my Feeling Better Series. Hopefully, it will not end my feeling better.
I will now return to my regularly scheduled program…..
I was looking around for information about Meniere’s, seeing if I could find anything new, while on the Vestibular Disorders Association (VEDA) web site I saw a call for people with unilateral Meniere’s for a research study. They are trying a new drug to help with vertigo. I thought what a great way to possibly help yourself and others. Unfortunately, this is for patients who have unilateral Meniere’s and I have Bilateral Meniere’s. Hopefully, others will be excited about finding out more about this research study.
You can find all the information about the research study here:
I know you are asking “What is going on with Wendy?”, she wrote a post about how much better she was feeling emotionally and then she just disappeared. What? It wasn’t that long ago? Wow, it feels as if so much time has passed since my last post!
So much has happened. Last Thursday (I think that’s right, I’ve lost track of time) I had a bad asthma attack and was told by the doctor to come in NOW!, then when they saw me she said, if this happens again, go straight to the emergency room! Asthma can be one bad mother! (pardon my words, but I was thinking worse…this whole thing with my asthma suddenly getting worse after so many years, well I’m just ticked off about it!)
The real kicker of the whole situation is that I wasn’t that bad at home when we called the doctor, I just hadn’t been able to sleep because of coughing all night. Then on the way to the doctor we passed someone mowing grass, and I started to wheeze. I could feel the left side just close up. I used my inhaler…again….and again. Stuart said, do you want to go to the Emergency Room, I said no. Then shortly afterward I croaked out “E…R…”, but then the inhaler started to work and I could breathe again. So we just went to my doctor’s office. Unfortunately my doctor wasn’t there and I had to see someone else. She doesn’t know me. I do not get anxious when things like this happen. (I get more pissed than anything, I admit I did get a bit anxious when I thought I needed to go to the ER, I hate going there, but that ended as soon as I started to breathe again.) I’ve had enough happen to me, I stay calm and make decisions on how to handle it. She thought my “anxiety” was making it much worse, and she’s not the kind of doctor you can explain things like that to. She would listen, but she would still think she was right.
I saw my doctor on Tuesday, and she agreed, I’m not likely to have anxiety about these things. And we discussed what type of specialist I should go to, an allergist, a pulmonologist (lung doctor), or an ENT. We decided on the ENT because I’m having a lot of drainage from my sinuses too. We figured he may be able to fix that, and if he couldn’t help with the asthma, he could recommend someone in at Duke. I know you are all thinking I already have an ENT because of my ear troubles, but my ear doc, is just that, he specializes in ears. He’s an otologist, just ears. However, we are getting a recommendation from him to see someone in his group. She wrote me a prescription for a cough suppressant to take at night so I could get some sleep. Unfortunately, it has high fructose corn syrup in it, not something I can take! So she recommended Chlor-trimeton, an over the counter antihistamine that is very drying. Finally, I have been able to sleep with minimal coughing during the night! I was so sleep deprived I was loopy.
One day…about a week ago now, I fell. This time I fell into the wall. Not thinking it was a big deal, I didn’t even hit the floor, but I jammed my arm. So typing is a bit difficult. I have to put heat on it and stretch it and mainly just let it heal. So I won’t be typing a whole lot…it’s hard to do with just the left hand. I do sneak in there with the right hand, but then my arm aches for a long time.
Oops, I fell, again! I went to the bathroom and started to spin (the vertigo has been back with a vengeance this past week!), I called out for Stuart but he didn’t hear me. So I tried to get to the bed as quickly as I could. I hate ending up on the hard bathroom floor when I’m spinning for hours. I almost made it. My walker was near the bed and I went to grab it, but missed (the handles weren’t where my eyes said they were), and I went down. The front of me mostly landed on the bed, but my knees came down hard. They hurt for a bit, much like when you fall when you’re a kid. No biggie, but I’m tired of falling.
I’ve had 3 bad vertigo attacks this week! This week!!! Since my surgeries I’ve been averaging about 5 a year. I will have little mini attacks more often, but I think they are more migraine related. So THREE in one week is unheard of for me now. But I have found something out about myself. I don’t panic as much anymore. (well I started to panic during the one yesterday, it has just been happening so often! And this one just didn’t want to end.) However, I’m happy to say, for the most part, I have remained calm. I tell myself over and over, “it’s not real!” I also stare at something close to me, often with one eye shut…it seems to help. I will put my hand on that focal point (usually a cup) and tell myself, “you know your hand isn’t moving so the motion is not real, it will go away!” I’m also very lucky that I now have Phenergan injections that Stuart can give me. My migraine doctor wrote the prescription for it, and it has helped a lot. I still get very nauseous, and some times I feel I might throw up (especially if I look away from my focal point that is close to me, seeing the room…the world…spin is much harder to deal with.) but for the most part I’m not throwing up as much during attacks, or during migraines….yay! So to sum up, I’ve been having more attacks, but I’m proud I have been handling them better!
The attack last night was strange. I’ve only had one other attack like it. I had the spinning and then I just fell asleep. I woke up a little over an hour later and the room was spinning. That just isn’t fair! I told Stuart, that’s against the rules. When you have vertigo and it finally slows enough that you are just exhausted and pass out asleep, you are not supposed to wake up having vertigo. At least it was slow moving…but it lasted over an hour longer. That’s the part I didn’t handle very well. It’s just against the rules!!
As you can see there’s been a lot going on, and I didn’t even mention it all.
Here’s the highlights….
Asthma is better, but not controlled. Need to see specialist.
Meniere’s attacks have increased, but I’m handling them better. (may be caused from lack of sleep due to asthma)
Migraines have been intense, but mostly short-lived. Coughing raises my CSF pressure, so these types of headaches are expected.
Still need to go to cardiologist to find out about palpitations. (that is rapid heart rate, right?) I haven’t had this happen since March. (I have an appointment with him on August 2nd. Funny thing, it’s Dr. Gray’s husband….if you remember she’s my neuroradiologist who diagnosed me with Idiopathic Intracranial Hypertension.
Still waiting on insurance to approve second CI, but they wouldn’t operate on me right now anyway. Not with uncontrolled asthma.
Stuart is still not working. He is looking into going back to school for Medical Informatics. (I told him he made up that word, but it’s real…I’m so behind the times.) He would also be working, but things will be tight for a few years.
September 10 -16 is National Invisible Awareness Week – If you’d like to get involved check out the official site.
30 things about my illness you may not know.
(warning, some answers may give too much information, but it’s not detailed)
The illness I live with is: The main illnesses I live with are Meniere’s, chronic Migraines, Bipolar I disorder, and chronic hip and pelvic pain. If you are interested in my other illnesses please see the the tab above titled The Ants That Bite.
I was diagnosed with it in the year: I don’t remember any more. I think I was diagnosed with Meniere’s in 2001, Migraines (I’m not really sure, I’ve had doctors tell me on and off since my teens that I have migraines, but they became chronic in my late 20’s…I’m 49 now), chronic hip pain and pelvic pain – they haven’t figured out what is causing all the pain, so no diagnosis. Bipolar I – 1990 then was told they were wrong – re-diagnosed in 1994.
But I had symptoms since: Meniere’s – the first attack I remember was in 1993. Migraines – the first one I remember, I was 11. The pelvic pain – in my early 30’s, in the mid 1990’s. The hip pain – 2008. Bipolar – in my teens.
The biggest adjustment I’ve had to make is:These are a few major ones for me…. Losing my hearing.Not being able to drive. Not seeing my friends like I used to. Realizing that I will never be cured. Not being able to have a sex life without pain. (but I’ve dealt with, or am dealing with all of these. They will not keep me down.)
Most people assume: I can do much more than I can, after all, I don’t “look” sick. And some assume I use my illness to get out of social situations, but honestly I hate being so solitary
The hardest part about mornings are:Never knowing what the day will bring. I often wake up with a blinding headache, I know what that day will bring. But if I wake up feeling decent I never know if I’ll continue to feel that way, or if I’ll be hit with a Meniere’s attack or Migraine. However, I try to make the most out of every day.
My favorite medical TV show is: Ummm, funny, I used to watch some medical TV shows, but I don’t any longer. I think I see too much of the medical community in person.
A gadget I couldn’t live without is:I suppose I could “live” with out most gadgets, but there are some I wouldn’t want to! My Cochlear Implant, I can hear so much more now. My laptop -so many of my friends are in there!
The hardest part about nights are: Trying to sleep, and trying to stay asleep. Fear. Fear of having an attack just as I’m falling asleep (this happens more than I’d like to admit), fear of waking up with a blinding headache……However, each night before I sleep I acknowledge my gratitude for the day, and plan what I’d like to do the next day. I always have hope I will have a good day, and if I don’t I still know I’ll get something out of it.
Each day I take __ pills & vitamins. (No comments, please)18 daily (this included the total number, not different medications), 5 as needed, 4 vitamins daily, and one B12 shot a week.
Regarding alternative treatments I: have tried many, including chiropractic, acupuncture, certain vitamin routines…. I found medical massage helps my migraines and hip pain a lot. I also use a special diet to treat gluten and fructose intolerance.
If I had to choose between an invisible illness or visible I would choose: I don’t think anyone would choose to have an illness, but I’ll deal with the hand I’ve been dealt.
Regarding working and career:I don’t work. I don’t have a career. Takes a lot out of conversations with others. My doctor suggested I look into filing for disability, but I haven’t done it yet.
People would be surprised to know:I often don’t wash my hair for a month or more. Water on my head is a trigger for me, especially if I have to close my eyes. Luckily, my hair is pretty dry, and it’s long so I just tie it back.
The hardest thing to accept about my new reality has been: There are a lot of times I have to say” I can’t” or “no” to people…and to myself.Losing most of my independence. Not being able to drive. And not being able to have a normal sex life.
Something I never thought I could do with my illness that I did was:Find the positive. Become my own advocate.Fire a doctor.
The commercials about my illness:The only one of my illnesses I’ve seen commercials for is Migraines. Commercials are always drug companies wanting you to talk to your doctor about their drug. I’m not comfortable with this, and normally the side effects they list are pretty scary.
Something I really miss doing since I was diagnosed is: I miss being able to go places alone. (the answer to this question changes often, but right now, not being able to go anywhere alone is very difficult.)
It was really hard to have to give up: My hearing. Even with technological help, I have a cochlear implant (CI) and a hearing aid, it is still very hard to hear at times. I know my hearing with the CI will get better, but it has been very hard to loose all my hearing in one ear, and almost all of it in the other. Without technology, I can’t hear anything.
A new hobby I have taken up since my diagnosis is:Blogging. Reading a lot! I’ve always liked to read, but now it’s almost an obsession. (thank you to Kym for my Kindle! Oh. another gadget I wouldn’t want to live without.)
If I could have one day of feeling normal again I would:I would be so very thankful!! Then I’d spend a day pampering my husband, in and out of bed. ; )
My illness has taught me:To be my own advocate. To be more tolerant…I thought I was tolerant before, but I realize I needed a wake up call on that one.That I’m not alone….this one relieves me because I needed to feel that someone understood, but it makes me so sad that others have to go through what I have. And that I can handle much more than I ever thought I could.
Want to know a secret? One thing people say that gets under my skin is:Any form of, telling me I’ll get better. “When you get better….”, “You will beat this….” NO, I won’t. This doesn’t go away. I may be able to find something to make it more tolerable, but it will never go away. And often treatments that work, stop working. I also hate it when people say, “You don’t deserve this” I know they are trying to be kind….but I never thought I deserved this! And one more….”But you look so good.“
But I love it when people:Tell me how they are doing, want my opinion, want to talk to me as a friend…..Don’t get me wrong, I don’t mind if someone asks about my illness, if they are interested and want to know more about it. But, sometimes I feel like people forget I’m anything more than my illness.
My favorite motto, scripture, quote that gets me through tough times is:This may not be the life I expected, so I’m changing my expectations. I don’t know if this is a quote or anything, it’s simply something I thought one day and it has helped me through accepting a lot of things that have had to change.
When someone is diagnosed I’d like to tell them:Often people who have been recently diagnosed find my blog and it scares them, so I start off telling people: Everyone’s journey with Meniere’s is different. Most do not get to the stage I’m at, so please don’t think you are going to lose your hearing….or any number of things I’ve been though. I’m in the very rare group. I let them know there are many treatments to keep Meniere’s under control, and point them to sites and other bloggers who can give a different perspective. Most importantly, I assure them, they are not alone. They can contact me any time, and there are online groups.
Something that has surprised me about living with an illness is:That my husband and I have gotten even closer. Thank you to our therapist, I think having to go to a therapist about all of this surprised me too. I was not handling losing my independence very well, and hubby wasn’t communicating very well. But by going to a therapist we began to communicate out needs much easier, and recognize our needs. Another big surprise is that people will reach out to me. I’m very surprised that I’ve touched people, and made some honest friendships with people I’ve never met.
The nicest thing someone did for me when I wasn’t feeling well was:(This does not include things my husband does for me) Come to visit me. It doesn’t happen often, but I do enjoy other people’s company. I hate that I often have to cancel when someone wants to do something with me. I’m already so isolated, and if I have to cancel people often think I don’t want to see them, or I’m just too much trouble. I don’t blame them, most of my friends have families, and they have to work their schedule around a lot of things. So missing a visit makes it harder to make plans the next time.
I’m involved with Invisible Illness Week because:Because I have more than one. Some people I love and care about have invisible illnesses. We need to let people know we are still people, but don’t judge us by how we look.
The fact that you read this list makes me feel: That you care, and maybe you understand some things about me you didn’t before.
Tuesday, July 31st, I woke up to this beautiful site:
I had an appointment with Dr. Kaylie to check my incision at 1pm, and then I saw the audiologist immediately afterward.
Dr. Kaylie was pleased that I didn’t have as much pain or vertigo with this surgery. The incision looked great, and all was a go for activation….well, to get my processor. Dr. Kaylie already checked to make sure the Implant was working when I was in surgery, so that wasn’t a worry. The implant was already working, but I couldn’t hear anything without the processor. It was time to get the processor. So off to see Sara, my audiologist.
It was very interesting to have the processor hooked up. At first I just heard a series of beeps, (that’s what I was supposed to hear). She was determining the volume each frequency should be. Then I was able to hear speech, and when I first heard her talk I busted out laughing! She sounded like a cartoon, then I heard Stuart speak, and he sounded like a cartoon…heck, I sounded like a cartoon. I kept giggling every time someone spoke. Everyone still sounds cartoonish. A very silly cartoon, like on Rodger Rabbit. It’s amusing but also quite difficult. Sara reassured me that all of her patients tell her that it gets better, but everyone is different. My brain has to be trained to hear a different way. Now I’m not hearing as a normal person, I’m hearing by having my auditory nerve stimulated. That kind of blows my mind. (I know my hearing will get better and better as time goes on, but I also know I may never hear like normal ears hear any longer.)
You would not believe how much stuff I got with my processors. Two HUGE boxes full of stuff.
I was joking in the last picture, I was shown what everything did, I just need to work with everything to make sure I understand how it works without anyone telling me, or me having to look it up. Especially all the connections to hook the processor straight up to the iPod, or things like that. The different ear hooks for different things with the Harmony. All the accessories just to make it different looking and some to clip the Neptune on to me, like an arm band and a lanyard…ect.
I have a drying box to keep the processors free of dampness. Each processor came with one, but I like one better than the other. There are different carrying cases, but neither will help organize all the pieces. I feel like I got some very useful items, some fun items, and some useless items. But it’s been like Christmas for a couple of days just playing around with all the pieces and figuring out how to wear them.
Here’s some photos of me with my CI hooked up with the different processors :
So there you have it. Me and my Cochlear Implant with the 2 processors I picked out.
Remember, picking out a processor is a very personal thing. I would never say mine is the best, if you are getting a cochlear implant, do as I did, read up as much as you can on all the ones available, then decide which one will fit in you the best.
Also. Everyone has different experiences with their CI. I’m hearing words, some people do not hear words when it is first turned on. Others hear words that are much clearer than what I am hearing. Some of it depends on how long you have been deaf, I don’t know the other factors…I just know we are different. So don’t think my experience is the same experience you will have.
The wonders continue!
OH….I did hear my cat purr last night, and it sounded like purring! I was thrilled! The one sound I’ve had a hard time getting used to is my own breath. I feel that’s strange….hopefully I’ll get used to it soon. Breathing shouldn’t be this loud….should it? I’m sure it’s something that will end up just going into the background. I remember when I got my hearing aids the sound of my hair brushing against them drove me crazy….later I didn’t even notice it.
Sorry I haven’t posted, and unfortunately this post won’t have photos, I promise they will be coming soon.
My surgeon told Stuart that my surgery went “perfect”. Yay!
Of course, I’m a weird patient….I had a reaction to the antibiotic. Not a severe reaction, but I looked like a clown. I had very red cheeks. Nothing serious, and it faded the next day, I didn’t even have to change my antibiotic, but we had to keep a watch out for a little while.
I also had a reaction to the adhesive they used to attach the heart monitor to me. I looked like I had huge hickies from an octopus hugging me. But again, nothing serious.
The pain isn’t bad. But it is there. Yesterday was worse, probably because I hate taking pain medication and was tired for feeling drunk. I am swollen, but I think it’s better than it was yesterday. I’m very tired, and I’m having some killer migraines. That’s why I haven’t posted before now. The migraines made it way too uncomfortable for me to look at the computer.
So….everything is fine! I’m doing well!
My Cochlear Implant will be activated on the 31st.
I’ll get photos up as soon as I get them off of my phone! They look much like the photos from the endolymphatic sac surgery…same smiley cup and everything. Wait until you see how much hair is gone! (really, not much at all, you can barely tell!)