Originally Posted by Laura973
I think the worst part of what i'm going through, is that i'm constantly disappointing my husband. Almost every weekend, i'm so wiped from work, that my lightheadedness and anxiety is worse, so i'm almost never able to do things with him. Usually he's really understanding but today he took off out of town, annoyed that i wasn't up to going anywhere and said he didn't like feeling guilty for his being able to do things. Right now i'm feeling really helpless and stuck. How do your loved ones deal with your illness? Do you ever feel like crap because of their words or reactions?
Most under estimate(except for the person that has it)the extent of this injury...some excerptsTo long to post it all) from Dr Erickson, MD lecture in Portland---provide insight for those that have and their love ones....the last Answer in the "Question and Answers" excerpt is important--to ur question:
...."COGNITIVE ASPECTS OF VESTIBULAR DISORDERS
The following is a transcript of a lecture by Kenneth Erickson, M.D.,held in Portland, Oregon.
Patients and families, of course, have known for a long time that vestibular disorders bring about cognitive difficulties. Some psychologists and neurologists here in Portland for at least five years, crystallizing in the last two or three years, have now begun to recognize and study a number of cognitive disturbances associated with vestibular disorders.
What are the practical ramifications of all these deficits that I've been describing?
The three areas of dysfunction I just listed -- the decreased channel capacity, the diminished sequencing ability, and that lack of the aha experience inside -- those three areas cause incredible difficulties with simple daily life functions.
Let's start with personal life, your home, your shopping, your social interactions, your family responsibilities. The above difficulties I've spoken of wreak havoc with your ability to function in any normal personal setting, from planning a menu to organizing your day's do list, to tracking your children's conversation.
There's an astonishing contrast between the ease which most of our patients remember encountering in social situations prior to their illness compared to the difficulty they feel now when they try to deal with more than one person at a time. Situations which seemed hum-drum when they were well now appear impossible.
Occupationally, any time-locked task that has to be done by a certain time obviously is going to be affected. We don't even have to go into the detail I've gone into to say that the fatigue that is felt causes great problems with those kind of tasks. But any task that requires tracking more than one train of thought at a time, like that of a receptionist answering phone calls and plugging them into the right message boxes and so forth would be dramatically impaired.
Finally psychiatric complications such as depression and anxiety are almost too obvious to mention. After this kind of alteration of your most basic habits of thought, it's hard to conceive of not experiencing anxiety, depression, and disappointment with yourself.
Even if you have a supportive family structure that understands the cognitive problems, you end up inside not getting that sense of satisfying "I'm doing what I should be doing."
That links with that certainty inside that I spoke about. Even when you're fatigued and vestibular and you know you put in a good day and have done the best you can, that internal lock that says "I know I did this, I can retrieve what I did today, I can look at the big picture, and I had a good day" is not there for most vestibular patients. That alone, even within a loving supportive family and with no financial problems, would create anxiety and depression.
PHYSICAL AND PSYCHOLOGICAL RELATIONSHIPS
Why do these kind of memory and functioning patterns exist among vestibular patients?
There are three very obvious factors that many psychologists will raise. Those of you who have seen psychologists may recognize these diagnoses. First, pain is bound to cause problems with concentration and depression. Second, anybody with as much fatigue as the vestibular patient experiences will have a lot of trouble. Finally, the depression ensuing from that and everything else affects people's attention span and concentration and memory.
So, those of you who have gone through psychological tests often end up with a psychologist telling you that you have a few problems with attention but you're above average IQ, and there's nothing much to worry about; in fact, on their tests you look pretty darn good. The things that they do see, the mild attention and concentration problems, are probably due to the pain, the fatigue, and the depression.
Well, the hypotheses that we have are somewhat different than that. We don't know that ours are correct, but they do not include the above. The reason that we don't explain the difficulty vestibular patients have as due to pain, fatigue and depression is that if you test people with pain, with fatigue and depression, they either don't have this pattern of difficulty or it's far milder.
If we test people with a lot of pain or depression or fatigue, they will do badly on a variety of attention and concentration tests. On those tests, however, vestibular patients may do pretty well. If, instead, we test using the tasks where we divide up the patient's attention between sorting words by category and pulling back recent words, we find that even when they're feeling stable and are not in much pain, on this one test vestibular patients perform badly.
Obviously common sense leads us to explore this further. We can only conclude that this kind of malfunction seems highly specific to most vestibular patients. Shortly we will have enough control patients to publish these findings.
Our hypothesis is that the reason you have this problem as a vestibular patient is that your brain stem is affected. The brain stem is a stalk connected to the spinal cord. There are nuclei located in the brain stem that attach to your balance system; they are also highly important for keeping your cortex, your thinking areas, alert and aroused and attentive.
Could it be that since you're constantly fighting the mismatch from your visual input and your disordered balance system that a very basic mechanism -- a mechanism that was developed as you learned to sit and crawl and that influenced how you later manipulated objects and then walked and spoke and thought, a mechanism that's taken for granted and built into very fundamental habits -- could it be that something that fundamental is being distorted? That the vestibular and visual disturbance interferes with nuclei functioning within the brain stem and thus interferes with your sequencing of information and impairs and reduces your channeling capacity?
It's an intriguing hypothesis, exceedingly difficult to test. Nevertheless it makes some sense, as anyone with a vestibular disorder can speak to. Basic problems with reading, watching letters transpose, problems with movement and the orienting to the environment -- these are manipulations of the environment that were learned at a very fundamental developmental stage.
Question: Do other people have problems with getting the first part of a word and then losing the second part, or getting the first part of a sentence and losing the second part?
Answer: These are indeed very common difficulties among vestibular patients.
Question: What effects might medicine have?
Answer: Many of the medications for vestibular problems are sedatives, even the anti-histamines and pain medications have a sedating effect. These will have an effect on memory and concentration. Vestibular patients who need medication to control their symptoms are often caught between a rock and hard place -- the vestibular symptoms cause them cognitive difficulties, but if they medicate to control the symptoms, the medication causes cognitive problems.
Question: I have a problem with getting the general idea of articles when I'm reading. Is this common?.
Answer: Definitely. In our clinic, we work on sequence and memory aids, in order to break the material down into simpler steps -- breaking an article, say, into key points. If there are more than five or six, then you will have trouble. Even simple articles can seem very complex. You can break reading materials down into key points, but it's hard work. You need to pick things that are worth it to you. Otherwise you'll get too fatigued and discouraged.
Question: Why do we mis-read, even when we know we are misreading?
Answer: It's called a substitute syndrome. Vestibular patients experience the syndrome often; it's very frustrating. I don't know why it's so rampant in vestibular patients. Probably it's linked to underlying injury to the vestibular system that goes beyond the vertigo, etc. When we tested a patient who was no longer having vertigo and whose scores were rather impressive in other areas, this "mis-reading" syndrome still existed. We don't know why. We ask, is the perilymph fistula creating a direct problem different from the vertigo? We need a larger sample and controls to really say.
Question: Do you have any help for family members?
Answer: A vestibular dysfunction affects the whole family because it affects the patient's total life. Family members need help and understanding almost as much as the patient him- or herself. In the clinic, we include family members' perspectives because they can sometimes give clues to behavior that patients aren't aware of. We also do counseling with family members."....