Betty's Essential Tremor Update

Betty's Essential Tremor Update

What’s New and What Isn’t
It has been a long time since my last blog as I have been going through a new medication trial with my ET. in late December I went to the Kaye Clinic at the University in Edmonton and for the first time in 15 years was assessed by a neurologist. It was a really intensive assessment so I felt that by the time it was over they really understood what my condition was.

isn’t new: In the 15 years since my last assessment, there has been no progress on the medical side of treatments for ET. They are just the same as they were 15 years ago. Surgical interventions are new and have shown promise but as I am 76 years old, I am not a candidate for that. I am ok with that. It is too bad there has been no appreciable progress on medications.

What is new for me: On the medical side there is one medication I can have that I have never  tried. That is gabapentin. We decided that I would try it. I was given a gradual increased dose  for 24 days to see how I would tolerate it. So far so good. Then I was brought up to full dose.  The one side effect that bothered me was dry mouth. They said I may have slurred speech but  I couldn’t get the words out enough for them to be slurred! My tongue stuck to the roof of my  mouth all the time. I tried sipping water until I was waterlogged, sucked candies until I was  sick of sweets (imagine that) and sprayed something the pharmacist gave me that caused me  to produce more saliva. It worked for about 5 minutes at the most. I must say it did reduce my  tremors about 80%. I still felt some tremor inside but it wasn’t bad and my feet would tremor  but I could stop them and they would stay still for quite a while. 

So now I am on a reduced dose and still have a somewhat dry mouth but I also have some  more tremor. It is a very livable degree of tremor compared to what I had before the  gabapentin. Before the doctor reduced my dosage I was prepared to stop taking it because I  couldn’t handle the dry mouth. I hadn’t thought about just reducing the dosage. Good thing  we have doctors who think about things like that! I still have a sore mouth so I imagine it will  continue to be a trade-off and I will have to make a choice after 6 months when I see the  neurologist again.  

I still want my Steadi-Two glove back. When the side-effects were so bad I thought at least I  know my life was quite reasonable when I had the glove for the month as an early adopter. I  hope to have my new glove before I see the neurologist so I can make a good choice. I would  also like to show them the glove. They were just vaguely aware of the availability of such  assistive devices and how they work. It would be nice if they could direct their patients to  information sources like the International Essential Tremor Foundation. I found it myself by  accident and it was the first source of helpful information I ever had. 

We have lots of white sand (aka snow) but the sun is shining so we hope spring will come  soon.


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