(This is a transcript of a talk given by Garfield DeBardelaben, Ph.D. at a support group meeting in 1987. For the sake of brevity, small parts of the lecture and some audience questions were omitted. This talk is also available on videotape V-B from VEDA.)

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This morning my presentation is going to be basically anecdotal. Over the last month, I've been canvassing some of my patients to find out what the issues are that are most important to them. As Dr. (Alar) Mirka pointed out, we're at the early stages of research relative to the treatment of vestibular disorders. I can only say that goes doubly true for the psychological treatment. To my knowledge, prior to the last three or four years there hasn't been much attention to the psychological aspects.

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With several vestibular patients that I've seen over the years, I've come to believe that what I see is an organic personality syndrome that these patients are manifesting. Now, there may be some argument with that because ordinarily organic personality syndromes are associated with things like strokes, and some neoplasms, which are brain tumors. But oftentimes I see patients who come in, and they'll start describing things to me that indicate that the day before they had their fall or the day before they were hit in the head, they were different people. The day after, all of a sudden something has changed. They can't always put their finger on it, but you better believe the family members or anybody close to them can recognize a difference. They are different people, they say.

I label these syndromes that I see as organic personality syndromes, and the essential feature of an organic personality syndrome is a marked change in personality that is due to a specific organic factor - an organic factor that is anything other than another organic brain syndrome. Now these are usually due to some structural change or damage to the brain. As I mentioned, maybe a brain tumor or stroke, oftentimes, or it can be due to a head trauma. Oftentimes I see patients who are seen because they were in an automobile accident or they had fall on the job. This head trauma can cause a post-concussion syndrome, which can lead to this organic brain syndrome - this marked change in personality.

Now a common pattern of behavior seen in organic personality syndrome is emotional lability, which means that people can vacillate in emotional states. One moment they may be happy, smiling, and without notice they ran break into tears. Obviously this can cause great concern, consternation for family members or friends who are in the same room with these people. Of the symptoms that vestibular patients have, this one symptom is the major cause for my getting calls at home on the weekends. "What do I do now? Crying, can't stop her or him, The kids are going bananas. I don't know what to do."

Along with emotional lability is an impairment of impulse control, social judgment. People who are ordinarily considered to be reasonable and rational people oftentimes start doing things that even they cannot explain. I've seen people cut in and out or had them tell me of situations where they've cut in and out of traffic just to get back at somebody who cut in front of them. Some things as bizarre as that. People who are ordinarily very calm, considerate people, placid people can become somewhat belligerent, combative, demonstrating temper outbursts at the drop of a hat with little or no provocation. Under extreme conditions there's often socially inappropriate behavior and sometimes sexual indiscretions. Those are relatively extreme situations.

There's oftentimes apathy and indifference, which wreaks havoc on marriages. There's no interest in hobbies or usual activities, which causes some concern for friends and family members.

Some associated features of the organic personality syndrome are depression, irritability. Now this depression has along with it changes in appetite. The person can lose appetite, or their sleep can be disturbed. They can start feeling guilty about things.

They can start obsessing about all the negative aspects in their lives. That goes along with that. The one difficult aspect about treating a depression that is secondary to the adjustment to a vestibular disorder is that oftentimes the complications that could arise from being prescribed an antidepressant medication preclude the prescription of an antidepressant. It makes it very difficult when people are saying I can't stop crying, I can't stop feeling so sad, I feel as though I never want to get out of bed, but then they cannot be helped by the introduction of a medication that has been demonstrated throughout the medical community to be extremely helpful in diminishing the degree of depression. It's really difficult. Often the side effects can make it difficult.

Along with this, the mild cognitive impairment - an impairment in a person's ability to think, to judge. Some specific cognitive impairments are in the areas of concentration -- (for example) if a person has a decreased ability to concentrate, to sustain attention on tasks that they are about to do, decreased short term auditory memory. It's difficult to remember phone numbers, for example, It's really difficult to read a novel. I mean I hear people whose prime passion in life, was reading, but after this disorder, they cannot tolerate reading. Number one, they can't keep track of what they read on the previous line, if they can tolerate looking at the lines. People become nauseous just glancing at a page. You can have a pretty grim life at that thought, especially if you were a secretary, I had a patient who was a secretary - could not tolerate even going into the office because all these lines and forms that reminded her of what she couldn't do anymore.

There's also a reduced behavioral efficiency. In other words, the coordination is off. They can't put things together. Filling out forms, for example, requires being able to track, requires being able to remember what the previous line was all about, and some visual motor coordination is often off with patients, with vestibular disorders.

Now the degree of impairment is extremely variable depending upon the location of the particular type of the vestibular disorder. Also, oftentimes it varies with the time of the day, whether or not a person is fatigued. Oftentimes people are a lot more on the ball in the morning than they are in the afternoon, especially more so than they are in the evening at times. Sometimes the impairment in judgment that's associated with this, cognitive impairment, can be so difficult that it would require that the person have constant supervision and sometimes even custodial care. Those are more extreme circumstances.

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Along with organic personality syndromes, what strikes me most is that people with vestibular disorders are experiencing grief. Now we usually associate grief with a physical loss, such as a death. But I'm here to tell you today, and I'm sure that once I begin to explain this I'll get a lot of head nods on this one, too, that people with vestibular disorders are experiencing a grief process. Grief is the process of psychological, social, and somatic reactions to the perception of a loss. The loss can be physical or symbolic or psycho-social. In other words, with vestibular patients the loss, the particular loss that they're coping with is that of who they were, which includes what they were capable of doing. It's the same with the person who has lost a loved one. When you lose who you used to be, it's just as devastating. The loss of the idea that you were once independent, able to care for yourself, can be overwhelming.

Grief is the process that allows us to let go of that which was and be ready for that which is to come and to adjust to what is here and now.

I've outlined five characteristics of grief. Somatic distress, which ran include G.I. problems such as ulcers. I've had patients who developed diarrhea, ulcers at times. When I query them, I find that they are obsessed, preoccupied with the fact that they're no longer athletes, they no longer able to care for their families, they are not able to work any longer. Obviously, that has dramatic effect on their self-image and their self-confidence. It can cause all kinds of somatic distress. Sleep disturbances as well as effects on their appetite. There is often preoccupation with the image of what was lost. Again, oftentimes that image is that of an independent person. Guilt is often associated with this. What I hear more often than not is the guilt associated with not being the bread winner in the family or not being able to handle the children without assistance. Upon facing this fact, oftentimes hostility arises. The person becomes hostile, secondary in my estimation to the frustration and the sense of loss of control over their particular situation. Finally, there's a loss of patterns of conduct. In other words, the normal life pattern has been disrupted.

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And let me tell you that the introduction of a vestibular disorder in any family is analogous to throwing a rock- in a pond because those ripples are far-reaching and ever-widening as long as this disorder is there.

Family members need to receive emotional, psychological treatment just as much or even more so than the patient with the vestibular disorder.

What the person needs when they're grieving, what they need most is acceptance and non-judgmental listening, which will facilitate the expression of their emotions, their fears regarding this disorder, giving them what's necessary to review how they're envisioning their lives henceforth. The patient needs to have assistance in integrating their images of who they were with who they are now. To do this, we need to offer them assistance without waiting for them to initiate the contact because oftentimes they don't have the wherewithal to reach out to you. Particularly if they've always been independent people, they resent the idea of having to ask for assistance. So we need to take the initiative to offer assistance. 'What can I help you with? Can I do this for you? Can I do that for you? Don't even consider doing that yourself, I'm here,"

Number two, we have to be present physically as well as emotionally to render the person, the patient, with security and support - - emotional support, financial support. As I alluded to earlier, oftentimes they cannot work anymore, especially if they're on bed rest or an extremely restricted activity schedule. Give the person permission to grieve. To recognize that things are different, Because oftentimes I see people who are not given that permission. As a ' matter of fact, they are being ostracized on some level for not being able to do the housework- or not getting up to make lunch, which is ludicrous, Do not allow the person to be isolated. If there is one thing that I've heard from every person that I've ever seen is the fear, it's the fear of being abandoned. The fear that their symptoms are driving friends and loved ones away. Without exception, that's the fear.

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To be sure, people with vestibular disorders are disabled, as far as I am concerned, in every sense of the word. And that is not derogatory. I'm saying people with vestibular disorders are psychologically as well as physically disabled. One, if you ask them they're no longer able to work, oftentimes - secondary to that decrease in ability to concentrate or to make appropriate judgments at times or to sustain attention.

Besides those things, oftentimes they are experiencing panic attacks, panic attacks that are brought on by the anticipation of becoming disabled or debilitated through dizziness or nausea. Oftentimes they are afraid it's going to attack them out there. So what happens, some forms of agoraphobia develop, They don't leave the house, afraid of leaving the house. Sometimes they break into sweats during the panic attacks. They are disabled.

A lot of insurance companies don't want to buy that, and employers don't want to buy that. They're always questioning, well, you tell me how this person is disabled, I'll tell you how they're disabled. When you don't want to get out of bed for fear that you're going to fall or you're going to have anxiety attacks because you are afraid that it's going to happen to you on the way to work in the car, you're disabled, as far as I am concerned. And that needs to be addressed.

Some of the additional factors that impinge upon patients with vestibular disorders besides the dizziness and nausea and feeling as though "I'm someplace else' - now, can you imagine if somebody were to explain to a friend, "I feel as though I'm someplace else?" They're going to think they're bananas, right?

These are what vestibular patients have to deal with all the time. Because not only are lay people thinking they're bananas, but all too often people in the medical community are thinking they're bananas. For example, I hear time and time again, my patients saying, "What's wrong with me? What's really wrong with me, and when is it going to end?" It's extremely difficult when they are attempting to make the other people believe that there really is something wrong with them when they are walking along the walls, touching the walls, or bumping into things, or dropping things, or saying that they're hearing clicking noises when they open their jaw, or feeling pain in their ears when they're trying to eat. How many people can relate to that? Not many. What do you do when you're having these symptoms, and you go to a physician who you thought you trusted and who is knowledgeable, and you give him or her these symptoms, and they tell you, 'Well, I think you need to see Dr. So and So, who is a psychiatrist friend of mine." What do you do? Well, you do what a lot of my other patients have done, you shop around for another physician! Their hope plummets when they recognize that something is wrong with them and their physician can't find the problem and then suggests that something is wrong mentally with them. They now not only have to deal with the balance problem but also with the frightening thought that they might be going crazy! That makes it even worse, They start doubting themselves, which makes them even more, incapacitated because they don't know where to turn.

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Now, how can vestibular disorders affect family and friends? Vestibular patients with symptoms of this personality change, sensitivity to light, sound, geometric patterns such as venetian blinds with the sunlight streaming through them, or brick patterns, or lines on my patient forms. - . . Before I see them, I say, 'Would you fill out this form for me?" And they're going bananas in my waiting room because they can't even keep track of the lines. Or slight changes in altitude when they are out for a family drive. You know, you're trying to go up into the hills, and all of a sudden you have to turn around because I'm having earaches. What do you think that's going to do to family members who are in that car, or who are being told, "Don't wear that black-and-white checkered dress when you come to my dinner party tonight.' You lose a lot of friends. What it does, is those kinds of behaviors can lead to a rapid decrease in tolerance of the patients by family members and friends. It can lead to an eventual disintegration of the family. I've seen people whose families were inflicted with separations and/or divorce because they couldn't handle the new person, the change in personality. But I think some of that may have been avoided had the family members come in to gain some kind of understanding of what they're really dealing with.

I've seen teenagers as well as younger children who didn't understand what was going on with Mom or Dad, who thought that one day when I come home I'm going to find you dead because they didn't have any understanding of what this whole disorder is all about. Consequently, I've seen these students become nonstudents, some acting out in school because they're feeling the stress of this whole situation. They become truant, oftentimes. I've seen shoplifting occur. I've seen teenagers start with cocaine, alcohol because they couldn't tolerate this disturbance at home. Mom and Dad not being able to understand each other anymore, not being able to pay attention to them anymore. Maybe you're getting the picture. It's not just the patients problem. It's everybody's problem. Everybody needs an opportunity to come in to have their concerns voiced and to try to get some answers. At least to have somebody help them sort some things out.

I've seen where the patient's inability to work can cause horrendous financial hardships in the family. And, as we know, excluding vestibular disorders, marriages can go crashing on the rocks when there are financial problems, as well as difficulties in communications. And with vestibular disorders, I've seen communications break down within families. This, on top of financial problems because the person isn't able to work - here we go again. More reasons for psychological intervention to assist the family in coping with this.

Patients can often feel guilty and feel overwhelmed because family and friends expect more of them than they're capable of giving because they still look relatively normal. There are no broken limbs, no observable pathology; there's no tumor that can be viewed. So oftentimes they are asked to behave normally. "You don't look sick." Then, when you start giving them the symptoms, especially friends who are not living with you every day, again, they're wondering what's really wrong with you?

I'm going to reiterate this one point because friends and family members oftentimes cannot identify with or relate to what the patient is experiencing internally, vestibularly. They often think that the patient is experiencing some kind of mental disorder. Oftentimes they stay away because they're feeling uncomfortable. They don't know what to expect, They don't know what to say. They don't know what to do. Sometimes the opposite happens. They act toward the patient as though nothing is wrong at all. Now this really makes a lot of the vestibular patients that I've seen livid! They say, 'How dare they be that insensitive?" I'm telling them that something is wrong with me, and I can't function like I used to function, and they're acting as though today's just another day.

I've often had family members who are sensitive, who are feeling the overwhelming effects of this type of disorder call me up or come in to see me and ask, - what can I do? What can I say to make things better? How can we get through this?" The fact that you came in, your asking these question is going to help you get through this because you're going to be looking for solutions. You are going to be looking for ways to make this easier on all of you. It's a family problem.

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I'm going to just give you some comments that some of my patients have mentioned over the last month or two, just to give you an idea. You know, whenever you walk into a room with a vestibular patient, and you're a family member, and they are startled? That makes you not want to do it anymore, even though you're coming in to surprise them with something nice, like a birthday cake. Make's you just not want to do things anymore

My practice basically deals with people with chronic conditions: cancer, diabetes, spinal cord injuries, etc. But of all the disorders that I've ever worked with patients, vestibular disorders tend to be some of the most overwhelming. You know why?

Because they don't see an end to it. I heard that time and time again. And I've heard vestibular patients say, "You know, if I had cancer, I'd know one day it would probably be over, you know, there would be some relief in death." I don't mean to sound morbid here, but I'm giving you what I have heard They say, "you know, it's like somebody coming in and saying, 'you're it,' and there's no getting away." I've had people say, "You know why I continue with these treatments, even though nobody has said it can be cured? I'm afraid to stop. I'm afraid to get off of this treadmill because around the next comer might be the cure. And I don't want to deny myself that opportunity. " And I can appreciate that. There's one thing that has to be maintained in dealing with this type of disorder, and that's hope. Hope. Because without it you won't get out of bed. You have to believe that what you're doing is going to make a difference.

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What I tend to do in terms of treatment with people coming to see me, and it's very, very minimal, as far as I'm concerned, I wish that I could cure, I wish that I could have somebody prescribe a medication, and it would be over. But, unfortunately, that's not the case. But treatment includes support and assistance in coping, with the change in lifestyle and to lower the expectations that people have of themselves, which, as I've alluded to earlier, can lead to guilt feelings and depression because their expectations are still high. And feelings of guilt stemming from not being able to be the bread winner or to be the effective parents or the worker that they used to be. A lot of us get a lot of self-respect out of the work that we do. And if we're not able to do it anymore, it can really erode away our self-image, our self-confidence.

Oftentimes I use relaxation treatment, and I've had pretty good results, especially with people who were phobic regarding being in shopping centers, shopping mails and feeling that they were going to become dizzy. Oftentimes it's controlled breathing and just controlling the overall stimuli that are affecting them. For example, oftentimes vestibular patients, even with their eyes closed, feet dizzier. Sometimes, though, what's really triggering the dizziness is all the peripheral stimuli. Like when you're walking down the aisle in the supermarket, and all the rows of colors can make you feel a little woozy. I've found that oftentimes in situations like that the fear is that of falling. So I've found that if I can get a person to sit down, close the eyes. Sitting down, they're eliminating the fear of falling because they're already down. Closing the eyes, they're eliminating all that peripheral stimuli that's causing what's triggering the dizziness, oftentimes, and the nausea. And then just taking a breath, allowing the oxygen just to kind of loosen up and diminish the tension in the body. That's helpful.

Then, oftentimes I use a technique called systematic desensitization to lower the anxiety associated with the fear of experiencing what I just described.

Oftentimes just having family members come in to work out some of the financial arrangements will lower the amount of tension within the patient, too. As I said, it is a family situation, and it calls for just reducing the amount of responsibilities in terms of raising the kids, caring for the kids, getting somebody else in there to take care of them, getting Grandma or Grandpa in, oftentimes, to help to provide some respite. It requires, oftentimes, having the kids come in to learn that it's not OK to slam doors anymore or to move the furniture around, with the screeching on the floors. There's a need to demonstrate that there is some hope, that there can be some optimism and there can be assurance or reassurance that they will not be abandoned by the ones who care for them.

Let me point out that the several times that I've heard patients of mine consider suicide, it was from the fear that they were going to be abandoned. Every time the term has ever been mentioned in my presence with a vestibular patient it was because they felt that "I'm driving them away, and they are going to abandon me." But, if we can assure them that that's not going to be the case, we can at least lower that anxiety level to the point that they can start dealing with the other factors in their lives.

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Q: My wife sits down for two minutes or lays down for half a minute and she's sound asleep. Is this a symptom?

DR. MIRKA: It's real common for patients with vestibular disorders to find that they're fatigued and have decreased energy and increased somnolence. The most common view is that with vestibular disorders one of the ways in which the body compensates is to decrease muscle tone. It has to work harder and burn more calories, and as a result people have less energy, more fatigue, and sleep is the way they relieve it.

DR. DEBARDELABEN: And also one of the hallmarks of a clinical depression, , too, is fatigue and drowsiness, and so it can be, as I pointed out earlier, oftentimes depression is a symptom of a person's emotional adjustment or reaction to the vestibular disorder, too,

Q: What about depression and appetite disturbances?

A: Well, as you will recall, I mentioned an appetite disturbance - a person can have an increase in appetite. I have several patients who have experienced just that. That's not uncommon. It's an appetite disturbance; it's just a disruption of one's normal eating pattern, whether you increase it or decrease it.

Q: Do you see any indication that emotional and psychological difficulties could be a cause rather than a result of vestibular disorders?

A: I've never seen any indication of that. Never, never.

0: What about paranoia?

A: That's part of the organic personality syndrome. That's one of the more serious ones.

0: Prior to my vestibular disorder, I was able to handle stress very easily in a very high-stress job. And my kids saw me as the rock of Gibraltar. I could handle any problem and I was always there for them. After the vestibular problem set in and my disability increased I was constantly striving to be that person I was before. And through the period of this happening, we lost all our property and job, and the financial devastation was incredible. And, still, trying to maintain that feeling of "you've got to be there for the family because you always have been," I eventually reached a point of total collapse. Almost catatonic. Have you seen that? .

A: Several. Several. I've had people lose their homes. I've had people get divorced because of exactly what you're describing. It wreaks havoc in the family, especially when a person has been previously viewed by everyone, including themselves, as a competent, independent person who could handle all those things. As I said earlier, what's really important in treatment is to help the person redefine their expectations. Because you are different. Your physical capabilities are different. You cannot expect yourself to run a hundred-yard dash on one leg at the same rate that you did when you had two legs. It's different. You're being self abusive to continue expecting yourself to perform at the superior level that you did previously. You are doing yourself a great disservice.

Q: I think one of the biggest problems of being a vestibular patient is running from doctor to doctor before you even know what the problem is with you, and then being sent to a psychiatrist.

A: Yes, exactly.

Q: Is there any medical literature concerning the psychological problems due to vestibular disorders?

A: Not that I know of There should be... There's research going on now relative to the cognitive processes associated with vestibular disorders. I think that just as importantly what needs to be addressed are all the emotional aspects of it, because it's far-reaching As a matter of fact, I have a lot of patients coming to see me who said that they had gone to see other mental health professionals and they hadn't even heard of it. Bad news.

Q; Do you find that patients have problems with confrontation after becoming vestibular patients? After becoming a vestibular patient, I fear the confrontation because I know halfway in the midst of an argument or the struggle or the problem I'll have to sit down, lie down to calm my symptoms.

A: So you just explained why. Yes of course. I do have people who do describe exactly what you're feeling. Earlier I did allude to the fact that one of the disabling aspects is that there is an erosion of a person's self-image and self-confidence and that's what you're talking about. In order for a person to sustain a confrontation, they have to feel confident that they can handle it.

0: Can, emotional distress increase the vestibular symptoms?

A: Yes, that can happen It's just stirring up all of the internal mechanisms, and they all interact. The vestibular problems can exacerbate the emotional and vice versa, and I can see people who are really stressed out emotionally and have to call Dr. Mirka... because the physical is being exacerbated by the emotional.

Q: I am dealing with a lot of loss issues.

A: I am glad you brought that up because that's exactly what I'm experiencing every day. That people are losing that sense of who they were. And, as far as I'm concerned, that's just as devastating as a death of another human being. Your death of who you are is just as significant.

(This document is not intended as a substitute for professional health care.)

(Rev. 12-19-90)

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