I missed writing yesterday, it was such a full day I just didn’t get it in.
Before my painting class with my niece I decided to take a Maxalt, and a couple of toradol with a little caffeine to see if I could get this migraine to a level where I could not only be present for the day, but also enjoy it a little. The pain did get to a more tolerable level, and after an hour I took the 2nd dose of Maxalt (if the pain doesn’t subside with a first dose you are supposed to take a second, I normally don’t because I don’t want to run out of my medication too soon, but on special days I will), after the second dose the pain was reduced more! Yay. The class was fun. I was sad because I cannot understand most of what my niece says, she speaks very quietly most of the time and does not move her mouth much at all. I’d love to be the aunt she could whisper too and tell secrets, but I can’t hear most of what she says. It makes me so sad. It did bother me that I did not get a thank you at the end of the day, I wasn’t surprised, that saddens me too. I do think she had a good time, though.
After our painting class we went out for pizza with the family. It’s always a mixture of emotions when I spend time with Stuart’s family. I like the feeling of family, but it can be a bit too much for me all at one time, and Stuart’s sister is very boisterous. I can only take her in small doses. We had to go back over to their house for some things after lunch so my time with her was close to hitting it’s limit before we left, and I was starting to have more pain.
When we left I was still feeling pretty good though and decided I did not want to waste it. I knew I might be pushing it a bit too much, but it’s a good chance that the next day could bring increased pain no matter what I do, so when I’m able, I’m taking advantage of it. I found out about this little clothing store that carries a style of clothing that I like so we went to check it out. Funny thing, I got 2 dresses, and neither one of them are in the style that I went there looking for. ha!
After that we were both bushed, but we wanted a treat so we got frozen yogurt before we went home and spent the evening watching baking shows and old Dr. Who’s.
Today I woke up feeling pretty good. Ate breakfast, picked up a few things around the house, then set out in the backyard to poopy scoop, something I haven’t done in a very long time and I’ve been feeling very guilty about it. I walked out and saw that the little rake and pan that I use to do it had been moved. “Oh no, my landlord felt the need to pick up my dog’s poop!” I felt so ashamed. I told Stuart and he said he wouldn’t feel bad if someone did that he’d just thank them. Ugh! I thought well no wonder stuff just accumulates on the porch and things are not put away….he feels no shame about things. Our back porch looks awful, he should be ashamed. So I told him so! Then I went out there and cleaned up the back porch! I moved and rearranged plastic totes (they are empty), I swept down the cob webs, I swept off all the totes and pool floats, I swept the porch (boy was there a lot of little mesquite leaves on there!), I wiped down the grill, and I got Stuart to get rid of the 2 cardboard boxed that were back there. Now my back porch looks all clean and organized, and we look like we take pride in our home. I am absolutely amazed at how much I can do when I’m mad! The amazing thing is, I could sweep like that and it didn’t hurt my back much at all, but have me stand at the kitchen counter and try to bake or cut up veggies and it hurts so bad it brings me to my knees. (Yes, I know the whole thing about feeling shame sounded snarky, I felt snarky at the time. I shouldn’t have gotten mad. I know a lot of my anger actually came from feeling that I can’t do my share to help keep up the house and the yard. Stuart and I talked about it, and he says he understands, I think he does, and I still think he needs to feel a little shame now and then. lol)
After all that adrenaline flew out of my body I fell into a heap in my chair and crashed. Then after about an hour I started seeing the world vibrating and going dim, I suddenly felt high but I hadn’t done anything to cause it, then the pain hit; a vestibular migraine had started. It wasn’t quite lunch time when I curled up ready for the end of the day.
I had a very full weekend, I got a lot of things done and had some fun, now for some sleep.
I’m having severe anxiety issues surrounding my hearing loss. I’ve been trying to do research on the subject and I’ve found quite a few articles that mention anxiety and hearing loss but I don’t feel that they go into enough detail. Every article I found only spoke of hearing loss and anxiety with the elderly. There are many reasons one may lose their hearing other than age. I lost my hearing quickly from an illness. The articles all speak of getting a device to for your hearing loss to relieve anxiety. I got my first cochlear implant (CI) almost as soon as I lost my hearing, my assissitive devise has not taken away my anxiety. I do not know if my anxiety would be higher if I did not have my CI’s and lived in a completely silent world all the time or not, I never have. But I can tell you that my anxiety has risen significantly since I lost my hearing.
At first I didn’t realize I had anxiety due to my hearing loss. I knew I had anxiety due to the sudden attacks of vertigo so I simply attributed much of it to that. I can say that both have been a big part of my life for years now, but at this time in my life, I’m not as concerned about the vertigo. Not because I don’t have it, but because I deal with it much better. I’m not so freaked out by an attack, I can deal with it if it happens and I rarely have attacks as severe as the attacks I used to have on a regular basis. I’ve come to realize that the majority of my anxiety now stems from my hearing loss.
Many people believe that with my CI’s I can now hear normally, that is far from the truth. It also confuses people because I can hear fairly well in a quiet place, I can also hear certain people much better than others (it depends on the frequency of the person’s voice) this makes it hard for people to understand why I can’t hear under every circumstance. However it is very hard for me to hear when there are 2 or more people talking, or when a person has an accent or someone has facial hair or doesn’t move their mouth much, or puts their hands in front of their mouth…. I simply cannot understand speech in a lot of situations. Most of the time I am completely lost in a noisy environment. How am I supposed to socialize?
I often just smile and nod, or I chime in at an inappropriate time and get embarrassed afterward. Sometimes I talk too much, after all if I’m talking then no one else can so I’m not missing anything. There’s a problem there too, often people will chime in and I’m lost again, and I seem very rude. So normally I look at Stuart for cues and ask occasionally if there is something I need to know. It’s not a pleasant experience and it is very anxiety provoking. Imagine sitting at a table where everyone is talking and you have no idea what is being said. You simply eat your meal and wait until it’s time to leave. Since moving to Tucson there have been numerous times that we have gone out to eat with the family that includes between 7 and 9 people. We’ve been to extremely noisy restaurants and we’ve been to quiet restaurants, it makes a huge difference. Unfortunately, they seem to only want to go to the noisy places so I normally bow out of those outings.
When we had them to our home I did have the children sit at a different place than the adults which reduced the noise but our dining room does not have carpet so it echoes, that makes hearing harder. However, one person kind of dominated the conversation so I kept up pretty well, I did miss some and Stuart caught me up on that later, which I thought “when did that happen” but since I was in my home it was not as bad. But my anxiety leading up to that dinner brought on a full blown panic attack. I will not go through that again. I’m not sure dinner with the whole family together is worth it to me.
There are many other things that cause me anxiety around my hearing loss:
sleeping alone in the house – I can’t hear the smoke alarm or anything else.
being in a store I can’t hear when anyone is around me
I can’t hear when someone calls my name
I can’t hear when someone comes up behind me
I often can’t hear if someone knocks on the door.
I can’t hear emergency vehicles.
I can’t hear the GPS
I meet someone and tell them I’m deaf and they begin to use ASL
I realized recently that my anxiety over driving is not totally the action of driving itself, although living in a new town and not being able to hear the GPS is pretty bad, it is also the anxiety of what happens when I get there.
The last time I drove I went to Whole Foods. a whole 1 mile from my home, I got there and was fine, I went to get a basket and found a phone in my basket. I knew I had to take it in and find someone to turn it in to. Anxiety started. I found someone as soon as I walked in the door as she was returning glasses do someone who had left them at a register, we exchanged pleasantries and I walked away not really knowing what she said but I knew it was nice and hoped I had responded appropriately. As I walked the aisles looking for my groceries I was acutely aware of the people around me but still one person came up behind me, and another came around a corner and I did not hear either before the were right on me. When I got to the register I had to tell her I had profound hearing loss and had to see her lips, she went on to say how wonderful it was that I could read lips and I have no idea what else she said, I paid for my groceries and left. When I walked outside I was still shaken but the day was beautiful and I saw a lady I saw when I went in who was eating her lunch and I decided I wanted to put myself out there for just a bit (my therapist would be proud) she was reading a real book and I commented how nice it was to see that, she said how much she loved real books and I went on my way. I only spoke to her because it was quiet out and I was sure I would know her response, and I did. At least I’m pretty sure I did. However, when I got in my car I realized I was shaking. I felt the car vibrating like it was running but I hadn’t started it. I looked around to see if big truck had gone by, but the only thing I could attribute it to was me.
When reading over the articles about anxiety and hearing loss the suggestions they give to help include getting a hearing assistive device like a hearing aid, give the device a change, see a therapist, ask family and friends to help what you need to hear easier, get a hearing dog, get involved in a hearing loss association…
So out of those suggestions, I have a device that I’ve had for nearly 6 years, I give them a chance every day. I have not shied away from situations. (Although a I have started to). I have a therapist. Stuart helps me, I’ve asked others to understand and help but most do not even attempt to help, I’m considering a hearing dog, but I need to make sure we can take on the added responsibility of caring for another dog, I have been involved in a hearing loss association in the past and I’ve looked into it here in Tucson but my anxiety simply hasn’t allowed me to do it yet. (If it’s like the last association I’m not sure I’ll feel like I belong)
Studies, sited below, have shown that hearing loss is related to anxiety, depression, social isolation, and demetia.
We need to work with those with hearing loss to help them integrate with main stream society better so they do not feel so left out. We need to help them understand they are just as viable and cared for as they were before their hearing loss.
Most of us have seen the videos of a someone who has been deaf their whole life who receives a cochlear implant and can suddenly hear. (or maybe people just send those to me) The wonder on the their face is very touching and can be described as miraculous. I will not get into the debate over whether or not a child, a person who has been deaf since birth, or a person who has lost their hearing should be implanted, that is a very personal decision that I have no right to weigh in on.
I do want to talk about how not everyone with a cochlear implant hears the same. Recently I read an article that talked about having a cochlear implant, the person writing the article has been deaf his whole life, does not have a cochlear implant, and has chosen not to get one, I respect that decision. Many of the commentors did not. The comments on that article were argumentative and down right rude. I found it very interesting, and a bit disturbing, that so many people assume that the experience they have with their cochlear implant is the same experience everyone would have. That simply is not true.
Yes, it is a miraculous thing to suddenly be able to hear. (for some for the first time, for others to hear again, like me.) The thing is, we have no idea what those people are hearing. It could be words, or it could be clicks and whistles or a combination of many sounds. If you never heard a sound before, would your face not show amazement? We cannot judge what they are hearing by a simple video. My audiologist told me that they she cannot understand what I hear, because she doesn’t have a cochlear implant and if she did, it could be totally different. Some people who only hear little bits might be able to hear more later, some will not. I met a lady at the Hearing Loss Association meeting who has cochlear implants and she can hear very little. She cannot hear speech. Her cochlear implants allow her to hear emergency signals, and not much else. I am amazed at how well she gets by with reading lips, but she does get lost, and I do wonder how much she misses. Often she simply smiles and nods, something I find myself doing way too often. But she is very grateful for the hearing she has. I can’t imagine. There are some people who hear almost as well as a normal hearing person, I can’t imagine that one either.
So many people assume that cochlear implants are like hearing aids, They are not! Hearing aids amplify sound, but the person can still hear the way they are supposed to, just not as well. In other words, no one had to implant something in their head to help them hear sounds. “a cochlear implant bypasses damaged portions of the ear to deliver sound signals to the auditory (hearing) nerve.” (WebMD) I have a device that was surgically implanted in my head and through the cochlea of my ear to deliver sound to my brain. I do not hear with my ears. No matter how high I put the volume on my cochlear implants it will not improve my hearing. I know it’s confusing, but trust me, I’ve had both, a hearing aid and a cochlear implant, they are not the same in any way.
With my hearing aids I could turn up the volume and hear, no they were not perfect, I still had trouble with wind, noisy situations….all kinds of things. The point is that the only thing that a hearing aid can do is amplify sound, if that will help you, that’s great. I honestly wish I could still be helped with hearing aids. I was not deaf without them, without my cochlear implants I hear nothing.
When I started losing my hearing I asked my doctor if I should learn sign language, he said, “You will never be deaf” I realize now that he meant that even if I lost my hearing, he would simply give me a cochlear implant. Which he did. In hindsight I should have learned ASL (American Sign Language) before I started needing it. I do not believe he understands the limits of the device
My audiologist warned me that some people do not hear speech with their CI’s, some only hear arbitrary sounds (clicks, whistles…) She told me that people who have had hearing often do better than those who have never heard. Their brains simply do not have anything to relate the sounds to, that isn’t always the case though. (again, I know it’s confusing, we’re just different) I heard speech immediately, but it sounded strange. Everyone sounded like Mickey Mouse, luckily I like the Mouse, but it did get a bit annoying. Gradually I began to hear people the way I remembered they sounded. It’s a little funny that still sometimes when I meet someone new they will sound a bit like a cartoon. And do not ever ask me to understand an accent.
In the comments connected to this article people talked about how they could talk on the phone, play music, go to plays….and they spoke of them as if everyone with a cochlear implant can do those things. I can’t. I cannot talk on the phone, and those caption phones are a joke. They don’t keep up with the caller and they get a lot of stuff wrong. It’s more annoying than simply saying, “I can’t do it” and that’s sad. I miss music. I miss music so much. I am literally tearing up just writing those words. I sing often, but I can’t remember the words to many of the songs, so I make them up. I want to be playing carols this time of year, but alas it will not be. I can’t hear it. I can hear the melody, but the words, nope. And that makes it just sound garbled. I do so miss music. I have been able to go to the movies thanks to the caption boxes, but it is difficult. There is one theater close to me that is looped, (A hearing loop (sometimes called an audio induction loop) is a special type of sound system for use by people with hearing aids and cochlear implants. The hearing loop provides a magnetic, wireless signal that is picked up by the hearing device when it is set to ‘T’ (Telecoil) setting.) So the sound is piped right in my ears. You would think this would be perfect, but it’s not, I still needed the caption box, but I didn’t use it near as much. It’s an independent theater though, so I’m still out of luck when I want to see a popular movie. I cannot imagine going to a live event that has not captions.
Being deaf is very isolating, even with a cochlear implant. It’s very hard for me to go out alone, to attend a party, to take a class, go to a restaurant, or…well, so may things. I’m lucky I have a husband who helps keep me active, and understands my fears, many people do not have this. If you know someone with hearing loss, reach out, they need all the friends they can get who understand their challenges.
This post got to be a bit longer than I intended, but I hope I’ve helped some of you understand a little bit more about how differently those of us with cochlear implants can hear. Just because you know me, and my struggles doesn’t mean that the next person you meet with a cochlear implant will have the same issues I do.
On November 20th, I had a cyst removed from my scalp that was pressing on my cochlear implant. I’d had another cyst, in a different area of my scalp, removed the month before without complications, so I felt I knew what to expect, I was wrong. The cysts are made of Keratin and aren’t a big deal, but they can get rather large and I have 5 that have been bothering me for a long time. The first one I had removed was visible through my hair…yes I know my hair is much thinner than it used to be, but it was really big. (measured over 2cm when they took it out) The recovery from the first removal was uncomfortable, but nothing big. The recovery of the second cyst started out much more painful, and I still can’t wear my cochlear implant for that ear. So I’ve been completely deaf, 100% of the time, in my right ear for over a month, and the new psychiatric medication I’m on now causes my tinnitus to increase greatly, the noise is driving me mad! If I could wear my CI, I would at least have some sound that would help drown out this constant buzzing, chirping, chattering, NOISE!
On the Monday after Thanksgiving (November 26th) I had my annual physical. During this visit I mentioned that my back was hurting around the kidney area and my bladder had been bothering me a little, so it might be a good idea to check my pee. I honestly didn’t think they’d find anything. I had strained my back, so that could explain that pain; and I have irritable bladder that flares up way too often, so these were the obvious culprits, I honestly didn’t expect anything to come of it. The next day the doctor called to inform me that I have a UTI (Urinary Tract Infection) They felt they caught it early, so one round of an antibiotic should knock it out. Sounded like a plan to me.
A week later, I was finishing up my antibiotics and I was in much more pain than I was in before I started them. Off to the doctor for another urine sample, and it came back positive, I still had a UTI, but it was worse. So I started Cipro.
During all of this the wound from the cyst removal had swollen three times the size of the original cyst and was getting red. I was getting concerned, but I was scheduled for another cyst to be removed so I thought I’d just ask then. But on the day I was supposed to go, my fever was too high and I was having vertigo, so we canceled the procedure and scheduled a wound check. The night before the appointment the wound started to weep. It was gross. I reached up and touched the area and thought, “hey, it’s gone down some”, then I noticed my hand was all wet and gooey. Ewww. Off we went to have my wound checked and yes, it’s infected too. I had one day left on Cipro, but I had to start a Zpack of the new antibiotic because it works better on this type of infection.
That brings us to yesterday, when I was just finishing the Cipro, and my bladder and kidneys still hurt. I’ve also been running a low grade fever for weeks. I started yet another antibiotic today! Yes, this is the THIRD antibiotic I’ve been put on over the last month. I can’t tell you the last time I needed an antibiotic, and suddenly I have to be on three? Wow. Mind officially blown.
One thing though, I don’t think zombies would be brave enough to touch me.
I’ve been saying that I’m “working on a post” for a while now, but I haven’t. I’m not sure why. I haven’t been too busy. I think I’ve just been avoiding talking about things.
My bipolar episode has lasted much longer than I ever anticipated. I’ve been stable for over 20 years and suddenly I had this awful episode that left me feeling like I didn’t deserve the life I’ve built for myself. I knew if things didn’t change soon, I wouldn’t be able to carry on. After trying to get my medication working and failing, we decided to go back old school, I’m on Lithium again. This is the first drug I was put on when I was first diagnosed. It worked for a very long time, but it damaged my thyroid and we decided to try something else. Fortunately, at the time, I responded well to the alternative medication. Since the damage to my thyroid as already happened, there is really no reason for me not to take it, and fortunately, it works really fast. After being on it for about a week I could tell a huge difference. I’m still having that low hum that makes me feel like I’m going to explode at any moment. But I don’t explode, I might get angry, but I don’t have the rage I was experiencing. I just increased my dose, so I’m hopeful that anger hum will diminish soon.
That is the good news. I’m leaving out all the rage episodes, the night I was actively seeking for a treatment center to commit myself because I was very afraid I was going to harm myself or someone else, the anger I felt toward my psychiatrist because I can’t hear a word she says and I have to have my husband in there to help me. At this last appointment I was so distraught by everything I couldn’t really talk at all, he had to tell her everything. Before we left I asked where I should go if I were in crisis, she asked if I felt suicidal, I told her how I had been feeling, she simply told me which facility I should go to, but I didn’t feel like she took me seriously. Perhaps I’m being overly sensitive and she understands that hubby will be here to monitor me and see me through this trying time. It’s very hard to get to know a doctor when you are in the throws of a (disphoric mania) mixed stated bipolar episode. Yes, I did say, mixed state. I’ve only talked about the rage here, but I’ve been bouncing around from extreme anger, severe depression, and wanting to jump my husband’s bones….all in the same day. Sound a little crazy? Yep, I felt that way too. Thankfully, it’s calming down and I’m feeling more like myself.
Unfortunately, I can’t say the same for my health. The vertigo, migraines, and hypoglycemia have had me pretty sick, most of the time. Last Saturday we went out to breakfast with my father-in-law, shortly after getting our food the world started to spin. I lowered my head, took my meds, and told them to continue. I was sure it was going to be a quick attack and I’d be okay in just a little bit. I might not be able to eat, but I could take it with me. I was wrong. The spinning got worse and I was afraid I was going to vomit right therein the middle of the restaurant. I got Stuart to get me a throw up bag from my purse and I clutched it tight. I told him it was BAD, REALLY BAD, and I needed to go home. I motioned for him to get the food to go. Hey, I wanted my pancake! I really didn’t think about how hard it would be for me to walk out. I couldn’t focus and I felt like my body was moving in ways that my brain really wasn’t telling it to. The sensation of being moved from forces that no one else sees is very disturbing. I used to think I had gotten to the point that I was okay with all of this, but I really,really hate it. I knew my feet weren’t going straight, I kept trying to compensate, that seemed to make it worse. I clutched on to Stuart for dear life. It was absolutely mortifying. The only thing that would have made it worse,is if I had thrown up too. I will say,my brain seems to deal with the episodes better than it used to, I rarely throw up anymore. Of course, I did get a Phenergan in me at the very first sign of the attack, and as soon as we got outside Iused my vape pen that’s 4:1 CBD:THC just a little and it calmed my stomach right down. I also never feel the psychoactive effects with this ratio. Itis still illegal to use medicinals in public, under normal circumstances I’d never do it, but we were away from other people, and since people use those cigarette vape pens, no one knows what I’m doing. But as I said, normally, I’d never use that in public. I thought about using an infused candy or tincture, but they simply don’t start working fast enough to help stop vomiting. But I digress…. This was the first time my father-in-law has seen this, that was hard, but I’m relieved he does understand some of what I go through before he moves in with us. He also handled it with grace and was very helpful to Stuart. Not that I really noticed at the time.
I’ve had a lot of challenged with my balance this past month. Kinda regretting buy a car, but even if I can’t drive it, it’s nice to have a convertible in the family. I am very disappointed that I can’t drive though, having that feeling of independence was nice. I was still having vertigo occasionally, but it didn’t last long, it was mild in intensity, and I always had signals that twas about to happen, so I wasn’t afraid to drive. That all changed. I accept it, but it makes me sad.
I found a new ENT and I really like his so far. He admitted that I’ve had all the treatments that he could recommend, yep, I’ve had it all really. He did say he could give me steroids to try to help with this flare, but since I had Avascular Necrosis that they think was caused by steroid use, I don’t use them if at all possible. He understood. He suggested trying Benedryl everyday because it’s a vestibular suppressant. I never knew that. I tried it for over a week and didn’t get the results we’d hoped for. So I asked if I could take diazepam for a week or two to try to calm itdown and he said yes. Also, the Audiologist there called and said she isn’t as experienced working with my brand of cochlear implants so they are having the Advanced Bionics specialist come in to do the adjustment to my CI’s (mapping). I was so very impressed with that.
I’m also working on getting a new migraine specialist, I really don’t like the guy I’ve been seeing. So cross your fingers I like the new lady.
I’ve done something that I’m afraid I may have a very hard time pulling off. We had planned to be in our house by now and we planned to host Christmas there. Well….I decided we still needed to do it, but man is it going to be a lot of work. I’ve invited the whole family, and one friend. That’s 6 adults and 2 children..
But this is the first Christmas that Stuart’s step-mother will not be home. I feel it’s important for his father to be surrounded by all of his family for a Christmas celebration. We are having it on the 22nd so Dad can spend Christmas day with his wife. We have been thinking about joining them, but it’s a busy time at the home, and her daughter and her significant other will be there. So, I think it will be good to go have dinner with her between Christmas and Thanksgiving.
I’ve been trying to make cookies, the kind you decorate all pretty with royal icing. I decided they were WAY too sweet with the icing, since it is just a sugar cookie, so I’ve been trying to make the icing less sweet. Problem is, as I have been working on a new recipe I have to keep tasting it. This stuff is super sweet…cloyingly sweet. So twice now, I’ve had a hypoglycemic crash. Feeling dizzy, light headed, sick to my stomach….ok so none of that is new….cold sweats, shakes, stomach cramps….I even threw up. Yep, blood sugar drop. Now I’m not even sure I ever want to decorate cookies. My back always hurts when I do it anyway.
Oh…other challenges this week. I had my physical on Monday. All my numbers were good! Even my triglycerides, they have only been normal one other time in my life. Shockers! However, I was having a slight pain in my kidney area and asked if she’d check my urine. I’m so glad I did! By the next day I was in severe pain, still am if I’m honest, and the nurse called and said that I have a UTI. HAHAHA I found that amusing because I really had no idea when I asked for the test. My back has been hurting so I thought it was just that, it was obvious the next day that is wasn’t. So now I’m taking antibiotics…eww. Can you imagine how much worse it would have gotten if I had needed to go back to the doctor for a test? Phew! that was lucky.
I also got a pneumonia vaccine, I had to have one when I got my cochlear implants, and I was supposed to get a booster in a few years, I’m about a year late, but I got it done. (it is supposed to reduce the chance of meningitis) 1% of the people who get this vaccine have a reaction to it. Yes, I am that special! The injection site swelled up and turned read. It measured about 3” in diameter, and it was so painful. If I moved my arm a very sharp pain would shoot through, not as if the muscle was sore, a very sharp pain. I couldn’t lie on that side for over 3 days. Finally it is feeling almost back to normal. Golly, that was an experience.
There I think I’ve caught you up on all things Wendy for now.
I hope you are having a joyful holiday season. Try not to overdo, as you can see I probably am…..big dummy. 😊
*photo, “Water Droplet on Sage Leaf” taken by W. Holcombe. Please do not use without permission. All rights reserved
I have some confessions that I thought some might relate to, they can be a little embarrassing to me, but I’ve decided to tell all.
I envy people who look sick. It’s just hard to be as sick as I am and look completely normal most of the time. Others have no idea what I go through. I know on the outside I appear normal. I know it’s hard for people to understand why I can’t do things. Sometimes it’s hard for me to understand. Sometimes I feel if I looked sick it would be easier.
I’ve played the sick card. This is very hard for me to admit. There have been rare occasions when I simply haven’t wanted to do something and I’ve said I was too sick. Normally that is something that would make me sicker. Something I might want to do, but I know if I do it I’m going to pay the price afterward. So instead of trying to explain this it’s easier to just say I don’t feel well enough to go in the first place. Now I do admit there have been very rare occasions that I simply have not wanted to do something and said I wasn’t feeling well enough. I can think of one. There was an outing with Stuart’s work and I knew I’d feel uncomfortable around all of those people so I played the sick card. Stuart went and that was really all that counted, but I felt very guilty about saying I was too sick when I really wasn’t that day.
When I get mad at my husband sometimes I’ll “take my ears off”, ( I’ll, take off the processors to my cochlear implants) so I can’t hear him. Yes when I get mad I act like a child. “I can’t hear you, lalalala”. I’m sure it infuriates him. I’m acting like a child. And at the time, I don’t care.
I’m addicted to the internet and I don’t feel that is a problem. I am basically housebound. I can’t leave without someone else. I rarely go anywhere other than to the doctor or the occasional outing, that is normally just errands. I don’t have friends close by since we moved. Even before we moved I had very few that I saw on a regular basis. I keep in touch with my friends through the internet. I read, I write, I research, I email, even my TV is through the internet. Some people may think I spend way too much time on the internet, I don’t think so.
I really don’t miss working. If I’d had the dream job I’m sure I’d miss working, but truthfully I didn’t like my job. I dreaded going to work. I don’t miss it at all. I don’t like the fact that I can’t work. But missing my job? No not at all.
I care what people think. I keep being told, “who cares what people think?” Well I do. Why? I have no idea. I don’t like this part about me, but I really care about what people think. I don’t want people to think I’m lazy, that I’m pretending to be sick, that I’m a hypochondriac…. Yet I don’t like to go out looking bad. I don’t want people to think I can’t take care of myself. I don’t want people to think my husband isn’t taking care of me. I care what people think when they come in my house. (as if so many people come in my house) I care what people think when they ask me what I do and I can’t give them an answer. I don’t “do” anything. I even dress up a bit just to go to the doctor. Especially my therapist. She is a lovely woman, so put together, and I want to look all put together too. So I actually dress up a bit to go to my therapy sessions. How weird is that?
I often don’t know how to talk about anything other than health issues. My life revolves around my health, and most of my friends have chronic illnesses and their life revolves around their health issues so we don’t have a problem talking. But when I meet other people, when I need to make conversation with people outside of my chronic illness circle, I’m a bit lost.
Often I have no idea what someone just said to me, so I fake it. When there is small talk being said and I miss part of it because I just can’t hear, I nod and smile a lot and hope I’m not smiling when someone just told me something sad. It is way too hard for me to constantly ask people to repeat themselves, especially in a setting where I know I probably won’t be able to hear them anyway. Often when I’m with Stuart I just stand there and smile and let him deal with the conversation. It’s hard on me, not being able to participate, but it’s harder to struggle through it.
I love my recliner. I never thought I’d be a middle aged woman who spends most of her time in her recliner, but I do. I love this chair. I got it when I got my hip replaced, I don’t know what I did without it! I get through my vertigo attacks much easier in the recliner, I don’t have to lie all the way down, I don’t have to sit all the way up, it’s just so much easier. It’s my comfort spot, it’s where I write, read, watch TV….and that’s okay with me.
I don’t shower of bathe regularly. Taking a shower or bath is an ordeal. I have a safety issue with both. Taking a shower is harder for me because I often get vertigo when the water hits my head, even using a shower seat with a hand held shower head doesn’t solve the problem. Taking a bath is easier, but it’s much harder to get in and out of the tub. I’ve also had vertigo start with me in the tub a few times. I have to have someone with me when I shower or bathe. It takes a lot of energy out of me. I often have to lie down and rest afterward. I never thought I’d say that I’m lucky I have dry skin and hair but since I do it’s not that big of a deal if I don’t wash my hair for a couple of weeks. No, I’m not gross, I do wash up. But taking a full on bath, takes a lot.
Sometimes I’ll wear the same “clothes” for days. When I don’t feel good I wear the same clothes for days. By clothes I mean a tee and shorts or sleep pants. I will move from the bed to my recliner and back. Who needs to change clothes? Truthfully, I don’t think I could if I wanted to. But sometimes I don’t change clothes simply because it’s easier.
I’m hard to live with. I get grumpy, grouchy, moody, bitchy….but I’m also loving, happy, joyful…. Let’s just say, I’m confusing.
Are there confessions you have? Want to share? Do you share some of mine? I’d love to hear!
(photo by and of W. Holcombe. All rights reserved)
I got my first cochlear implant (CI) in July of 2011, and my second in September of 2013. When I was going through that time I wrote some about it but I’ve never talked about what it’s like to live with my cochlear implants (CIs). A friend of mine asked me a few questions about it recently. I’m here today to answer some of those questions.
What exactly is a Cochlear Implant? – To put it simply, a Cochlear Implant is an electronic device that can help provide a sense of sound to someone who is deaf or severely hard of hearing. Let me see if I can explain this in my own words. There is a part that is on the outside of the head that consist of a microphone a processor and a transmitter. There is part that is on the inside that is the stimulator and the electrode array. Sound comes into the microphone and goes through the speech processor to the transmitter (the microphone and processor are the parts around the ear, the transmitter is the part that is on the outside of the head – it is held on by a magnet connecting it to the receiver/stimulator). The stimulator is in my head, between the skin and the skull. When the sound comes in to the stimulator it is then sent to the electrode array it then send impulses to the auditory nerves. For a better explanation please go here. (you can see the microphone, processor and transmitter on me in the photo at the top of the post – yes mine are orange -, and in the second photo below)
Why did you get cochlear implants? – I lost my hearing due to Meniere’s Disease. My hearing loss happened fairly quickly. I was diagnosed bilateral in November of 2009. In 2010 I got hearing aids, within 3 months of having my hearing aids I couldn’t understand anything out of my left ear. That sent me on the tract to getting my first CI. (July 2011) By the time I received my first CI, the hearing in my right ear deteriorated to the point that my hearing aid no longer worked. It took a little while, but I soon got my second CI.(September 2013) Why did I get cochlear implants? because that was the only way I would be able to “hear” anything.
How does a cochlear implant work? – I’m going to quote this straight from the National Institute of Deafness and other Communication Disorders site. “A cochlear implant is very different from a hearing aid. Hearing aids amplify sounds so they may be detected by damaged ears. Cochlear implants 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.”
Do you hear the same with a cochlear implant as a you do with normal hearing? – No. Some people can understand words and sounds immediately, other people can only hear clicks and whistles. It is a completely different way of hearing and your brain has to be retrained. When I was first activated I could understand a lot of words from the start, but everyone sounded like they had been sucking on helium. A lot of Donald Duck and Mickey Mouse voices were around. Soon my brain started to remember what certain sounds sound like and I started hearing things the way I used to, for the most part. When I hear something I’ve never heard before things can sound very odd. Sometimes when I meet a new person their voice will get that cartoon sound until I get used to them. The longer you use your CIs the better you hear with them, so 10 years from now I should hear better than I do now.
Do you now hear like everyone else? or is it odd? What is your hearing like now? – This is the big question isn’t it? What is my hearing like now? First I’ll tell you about challenges I have that a lot of people with CIs have, then I’ll tell you about my personal challenges.
I often can’t hear when someone speaks behind me. If there is noise in the room I have a very hard time hearing. (the newer CI’s are better for this, even though I have a newer CI I still have a hard time) In groups it is very hard to keep up with what everyone is saying. I am much better at conversing one on one. I find I it is much easier for me if the person is facing me so I can read their lips while they are talking to me. Between the two of those I do pretty well, but put me in a crowded room, and I’m lost. Heck, put me in a room with more than one person and I can get pretty lost.
I think I might be able to hear better if I had more practice, I’m not sure. Most of the time I only talk with Stuart. I talk to my doctors. I talk with our roommate, but I have a very hard time understanding him. His voice is deep and I simply cannot understand most of what he says. It makes things difficult, and sad. But for the most part I don’t see anyone else. Since we moved I haven’t met many new people, it’s hard to get used to groups and hearing other people when I don’t have the opportunity. However, it’s also really hard to put myself out there in those situations because I get so lost and confused. It does make meeting new people even more challenging.
Unlike most people with cochlear implants my hearing fluctuates. Some people with Meniere’s who get CI’s end up still having fluctuating hearing. Normally this happens when we have vertigo, our hearing will change and we need to get our CI’s adjusted. My hearing doesn’t fluctuate just when I have a vertigo attack it happens every day.
Let me tell you what an average day for me is like. I’ll get up and put on my cochlear implants, at first it takes me a little bit to get used to suddenly hearing sound. Everything sounds a bit loud. Then things will normally calm down and my hearing is stable for a few hours, but every evening my hearing will change. It’s hard to explain what it sounds like, it gets hollow sounding and can sound way too loud. I’m always telling Stuart to please be quieter. Sometimes my hearing will change throughout the day. I will often say, “I’m having a bad hearing day.” I’m thrilled when I can say I’m having a good hearing day.
When I take my CI’s off the world changes. Suddenly the only thing I can hear is my tinnitus. (When I have my CI’s on the sound of the outside world helps me to not notice my tinnitus as much.)
I don’t know sign language. I am working on learning some, but I haven’t been able to take a class. At times Stuart and I can only communicate by me reading his lips and the little bit of sign language we know.
What is a challenge you wouldn’t normally think about? – This one is easy, having the headpiece suddenly fly off because I got too close to something metal. I have a bracelet that I wear sometimes and if I put my arm up around my head the CI headpiece (the transmitter) will jump off and stick to it. It’s kind of funny, kind of annoying. Other times when I want to lie down the headpiece won’t stay on. This is annoying, especially when I’m sick. I deal with vertigo better when I can hear what is going on around me since I can’t focus on anything, but during an attack I need to lie down, this often knocks my CI off and I can’t hear anything out of one ear.
Does it hurt? – Well the surgery hurt, but it wasn’t so bad. It is actually an out-patient surgery. Does it hurt on a day-to-day basis? Not really. If the magnets that are holding the headpiece to my head are too strong it hurts, but then I can change that. I have screws that are very close to the surface right behind my ears. One ear is worse than the other. Most people don’t have this problem, normally when it heals fat and cartilage form around the screws and you don’t notice them, for me the screw is right up against the skin. Sometimes this hurts. Sometimes my processor and glasses will rub on them. My sun glass arms are thicker than my daily glasses and they will cause that area to hurt. If I can lie down on it, it hurts a bit. Other than that, no it doesn’t hurt. If I didn’t have the screw issue I really wouldn’t even notice I have them on.
Now I just have to share the funniest thing I’ve misheard due to my hearing loss– Once I asked Stuart what Jesus was other than seen as a prophet and son of God. The answer I heard was, “Jesus was Jimmy Buffett” I busted out laughing. “Whaaat? Jesus was Jimmy Buffett??” What Stuart actually said was, “Jesus was a Jewish Carpenter.” I still get the giggles when I think about Jesus being Jimmy Buffett!
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.
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 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?
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)