Friday, December 7, 2012

Is this because of HD?

The Sunday morning before Thanksgiving, when Robert got out of bed, he immediately fell back on the bed. It took two or three more tries before he was able to stand up, but even then he was having a problem. The problem? He was extremely dizzy to the point that he couldn't stand up. Since this was a new experience, it worried us. Especially when he began to complain of these dizzy spells at all sorts of different times and when doing all various activities. It was always worst when he would get up first thing in the morning, though. And it continued to plague him daily.

Why is this happening? Is this a symptom of HD that we are not aware of? What is going on here? All of these thoughts are going through our heads as we wondering what this is all about. We were worried that he was beginning to experience a symptom of the disease that was uncommon and one that would have a major impact on his day to day life. I couldn't really find anything on any of my favorite HD websites that gave me any insight into whether or not it was some lesser known symptom or something. It was a bit nerve-racking for us.

Robert, being Robert, didn't want to go to the doctor. He kept saying that he would get over it. He hates doctors so he fights going to them unless he absolutely has to. So, I made an appointment for him that Wednesday and told him to go. Turns out he has vertigo.

Vertigo is a condition caused when tiny crystals that normal reside in your ear canal come loose so to speak and float around in your ear canal. This throws of your equilibrium and causes you to get dizzy, especially when you move your head certain ways - such as getting out of bed in the morning. There are any number of causes for it and it is hard to say what precipitated the condition in Robert.

The good news it is treatable in the majority of cases with some medication. So, Robert has been taking the medication and taking time to get out of bed in the morning, or attempting to sleep sitting up some nights when it is really bad to help the crystals return to their normal position so that the dizziness will go away. And he has noticed a lot of improvement.

Turns out that about 1% of people with HD have experienced symptoms of vertigo. Not enough to really make a connection as it being a real symptom of the disease. It is more of a random thing. But this experience does highlight the constant sub-conscience fear like state that a lot of people affected by HD live with. Every time something happens clearly out of the norm, like sudden onset dizziness, you worry that it is HD. Then, you put of seeking medical treatment for fear that you are right and the doctor will say it is HD and nothing can stop it. Because, once the more serious symptoms start, that is the beginning of the end. But as we learned this time, the vertigo is 99% likely to be unrelated to Robert's HD and is treatable.

We know that one day we will go to the doctor and be told that it has started in Robert. That he has reached that magical age for his body and the disease has begun to take him away from us. And we live each day knowing that it is one day closer. And we worry that some random thing may be that first symptom. But, we also have to remember that the random thing may not be HD at all. So, even though we may not want to hear what the doctor has to say, we need to go and hear it from him. Because, as it turns out this time, it could be something else entirely that is serous but not related to his HD at all.

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