Up to full dosage now!!!!

Greetings!!!
It's been almost 2 months now since I started the Pimidone, I'm up to the full dosage that the doctor wanted me to work up to, and I have to say....I AM LOVING THIS!!!! It has been amazingly wonderful to have control over my hands again. I still have times where when I am stress or drank too much regular coffee at work, the tremors show up again, but when I'm not stressed or loaded up on caffine, my hands are almost always rock steady. I have noticed towards the end of the day or first thing in the morning before I take the medicine, the tremors are there, but love the Primidone!!!
REAL TEST....this past Friday night!! I had a date with someone and I REALLY didn't want the tremors to show. I knew it would be way past when I normally would take the medicine by the time I got home, so I went ahead and took it before the date. It worked!!! Had a great evening getting to know someone very handsome and nice, and the tremors seemed to stay away. Normally, that would have been stressful enough to kick it all in. I am so thankful for scientists!!! lol
Now, I go until August 20th with the medicine. That day will be a review day with the doctor to see how things are going. I am curious to see if the medicine will remain effective at this level or if as time goes on, the dosage will need to be increased.

So until next time.......Happy waves!

Looking for famous people with Essential Tremors! Like Kathryn Hepburn!

All the things we do with our hands......

Different things we do everyday with our hands and don't really realize how much we might miss it if we couldn't do them anymore.....I am so thankful for how far medicine has come so that I can now start to do everyday things again with smooth hand movements and not get embarrassed in front of other people!!!

What a wonderful change!!!!

It has been so wonderful to be able to handle things without my hands having a mind of their own!!! lol... I can put my eyeliner on with one hand not being held steady with the other, pour a cup of coffee without having to hold the carafe with both hands, and my handwriting is looking so much cleaner and clearer! I love it!!!

Ok, so since the last time I wrote, I have noticed my body becoming used to the small dosage I take at night. Usually by evening, my hands are starting to show some tremors again, but it is still much better than what they were before. When I don't get enough sleep, then I really see my head shaking more. This coming Friday I up the dosage from 50 to 100 mg, so I'm sure I'll be feeling the sleepy/groggy/drunk-buzz like I felt before when I first started. That feeling is almost gone now that I'm getting used to this tidbit of medicine, so I can't wait to see what will happen on Saturday morning.

Review on the ergo pen:
I can see how the pen would probably help more when I'm not on the medicine than for now. Now that I have more control over my hands, I can use regular pens and not worry about how the letters will look. Getting used the how the ergo pen sits in your hand can take a little bit. The only real problem I had was the ink would stop writing and I would have to doodle to get it to write again, so I'll be emailing the company that makes the pens to let them know. But I probably don't write enough at work either to keep it going. Most of my accounting is done on the computer now.

I've also figured out how difficult it is to try and blog during the week. Not enough time in the evenings after work. Such is life. However, I found out that I can blog from my cell!!! WOOHOO!!! Soooooo.....I'll give it a try next time something crosses my mind.

So until next time.....Happy waves.

More like a normal day today

I thought for sure this medicine would make me sleep longer at night, but I woke up at 7:30 this morning.....without the alarm clock! lol. I wasn't as groggy this morning, which was nice. I could see the tremors a little more this morning.

I decided to try and take communion at church today. Still had to use both hands but I was able to get the cup out without spilling!! WOOHOO!!! Back on Mothers Day I had decided I didn't want to take communion anymore. I had tried to take the cup out of the tray with both hand and still shook the juice all over the tray. A little embarrassed, but I'm glad it was with my boys and not someone else. So I gave it a chance today and I'm glad I did. Then I grilled for dinner today, which can be entertaining to watch sometimes. But with the medicine in my system, it was very nice to be able to handle flipping the burgers! lol.

Something neat I read about yesterday had to do with an ergonomic pen and pencil, and for people with ET. I love new little gadgets...lol. It's supposed to be a big help as the tremors get worse. As time goes on it gets more difficult to write, and I've been experiencing this for about the last year. So I ran out to my local CVS and bought a few since the boys wanted to try them too. The pens and pencils can be seen and purchased at penagain.com as well as CVS drugstores, Office Max, Staples, and a few others that are named on the website. I'll be able to try mine out at work tomorrow and I'll let you know how it went.

The morning after.....

After the first dose of medication:
I woke up this morning and I was pretty groggy. Not a foggy where it might be hard to understand things, but more like really really tired. But after laying in bed for about 30 minutes, I could open my eyes and I held out my hands and the tremors felt and looked like they were gone!!!! I was so excited, I carefully got out of bed (had to make sure I wouldn't stumble around like a drunk since I could still feel the medicine...lolol) and found my boys to show them. Of course their response was "Cool mom" and then went back to playing their xbox game. But I didn't mind.....I had hands that looked rock steady!!!! My head tremor was still there slightly, but it was better too! I was also surprised that I woke up as early as I did. I thought for sure I would wake up around 10 or 11 at the earliest, but I started to wake up at about 8:15. Definitely had the groggy, slightly spinning affect going on, but to see my hands that steady.....I loved it and will gladly do it again!!!
It is now a little after 5 p.m. and the affects from my first dose of medication are wearing off for sure. I'm noticing the head tremors are coming back stronger than my hands are. Which, from what I've been reading today, would be normal. I'll be modifying my bedtime and medication time for sure tonight to see if that helps with the grogginess I felt this morning. It seemed to hang on for about 2 hours.


Here is the link that I promised to post about the piece that was on the Today Show. You might have to copy and paste it to your browser.
today.msnbc.msn.com/id/26184891/vp/35215311#35215311

I guess I've been living in the dark in regards to the amount of information that's out there, at least online. My family has always just lived on and tried to ignore our fun little shimmy shakes. But there is an organization out there specifically for people with Essential Tremors. The International Essential Tremor Foundation. So I signed up for the emails and the free packet. They also have memberships that start at $30. You can visit their website to find out more.
http://www.essentialtremor.org/
Lots of helpful information on their website. I haven't signed up for a membership yet, but probably will.
They are also on Facebook, so I joined them on there also. One of the discussion groups there is for humor. My favorite line so far......I can turn a latte into a cappuccino in 1 minute flat!

Greetings.....

The definition of Essential Tremors - a rapid tremor that, in contrast to the slow, resting tremors of Parkinson's, increases with activity.

Now add some hypothyroidism for added stress on the body, a dash of silly hyper-ness that might look like ADD sometimes, and two fun filled boys that love to shake things up, and you have me. I grew up will benign familial essential tremors and I sometimes look like a squirrel on some sort of a caffeine kick. Several family members on my mothers side of the family have this lovely gift in their lives too, but I've been told I have it more than the everyone.....and so now I'm happily the guinea pig on this road to hopefully smooth out my shaky body.

Hello, and welcome to my little piece of life. I decided to start this blog because there is FINALLY something out there that can be done to help people with tremors, like me, but it seems like not too much is being said about it. I'm not sure if what I say here will help anyone, but if I help even one person, then I've accomplished what I set out to do here.

OK....to bring you up to speed:
A few months ago, my mother watched a piece on the Today show. She then had me watch the same piece on the shows website. (I'll post the link later. It is amazing!!!!) I didn't know it, but there is a surgery out there now that can basically calm down the majority of the tremors!!! I was so excited I cried! So I emailed the doctor in New York that was in that piece a few days later, and he answered back within 5 minutes!!! After visiting my family physician, I made an appointment with one of the four doctors that the doctor in New York referred me to. My future visits to the doctor will be down at the OSU Medical Center in Columbus, Ohio. My first appointment was yesterday and I am so glad that I went! I am a good candidate for the surgery, but of course we have to try out a few meds first, just to see if they work. If not, the surgery will be in about a year. On one hand, it would be nice if the medicine works wonders and I won't have to have a surgery. But on the other hand, it would be nice to have the surgery and not mess with medications and deal with any grogginess. There seems to be pros and cons to almost everything!

So with that brief sum-up of whats been going on, I thought it would be good to share with anyone who has the same thing going on and might be interested in my little journey to fix my tremors. I'll be posting whatever I can over the next year or so whatever might be of any help to anyone. This is my first time attempting anything like this, so please bear with me....but also feel free to comment or ask questions. (I feel like I should state here that I am not a doctor and I'm not trying to pretend to be one...lol....this is obviously all just simple experience down a new road.)

So tonight.....I took my first little pill. It's called Primidone, 50 mg. It's really meant for people that have seizures. The doctor quickly decided on this medication because I had told him that whenever I have a glass of wine, the alcohol seems to calm my tremors. I took the pill about an hour ago and I am lightly feeling the effects now. The doctor said any medication that messes with the brain is going to make you somewhat groggy. So I'm starting out on the lowest dosage, one pill at night, for two weeks, and build up from there. I'm typically a night owl, but within about 30 minutes I got the heavy sleepy eyes. My head tremors don't seem as bad now. Yeah!!!

And so with that, I will say good night and head off to dream land. Maybe this could be a good thing to cure the night owl in me! lol.