Essential Tremor

[Motherof6]

I know that symptoms are different in everyone. I've been to doctor after doctor and meds after meds. The last diagnosis they gave me was ET but I am I am having problems with it. Until last summer I have never had a problem (I am 41), so I have been searching. Here is my story:

Last July I had an episode while we were on vacation visiting our son and his wife. In an instant I lost all use of my left side. I even had a "wave" go through me and I felt like I was going to pass out. After about an half an hour or so it came back. It was weak but I could stand and use it. I did not go to the doctor because as my DH says I am the most stubborn person you have ever met. Well within the week after that the situation got worse. My strength never really came back and it spread to the left side of my face. My oldest son at home took me to the Er and they checked me for a stroke or lesions. The MRI came back clear. The neurologist said I had something called Migraine paralysis and put me on some drugs. I have suffered from migraines most of my life.

Well, fast forward to November. They switched my meds 3 times, I have put on almost 40 lbs from the various meds. The migraines still occur if I accidentally have any of my trigger foods, which seem to be growing. Now I have a constant tremor. It started like I felt like I was shaking from the cold all of the time but it was not visual and now it is and is effecting both hands, my left leg and my head but not all of the time. My Neuro now says it is not related to the migraines and has removed me from all the meds. My thoughts seem to get jumbled and my speech either stutters or the words don't come out right. I have had so many tests and have seen 10 doctors since July. They cannot find anything definite so they are just saying benign essential tremors At this time I am not on any medication. They wanted to put me on Topamax since I had allergic reactions (mainly severe weight gain ,80lbs now, and high blood pressure which is unusual for me). Topamax says it will cause kidney stones in those who are prone. I am not only prone but have a kidney stone 8mm which the doc says is not affecting the function of my kidney so they are leaving it. I do not need it to get bigger.

I have these episodes about every 3 weeks where I feel like I am full of "Wiggle Worms" I have to move my legs constantly (either standing, sitting or lying down). If I do not move them on purpose they start jerking. I feel like I have internal tremors all of the time but the external ones are not always there. That I think I could live with. The jerking episodes are what I am having problems dealing with. I sing in our church choir and this last episode hit hard and fast. I start by my thought process being jumbled where I could not even remember the pledges for the kids program that I work in on Wednesday night. In 2 hours I could not walk or speak without a stutter. I was jerking no matter what I did and had to really concentrate to put one foot in front of the other. Thankfully my 2 teen boys were with me and helped me get to and in the truck. My husband had to practically carry me in the house. It took me hours to be able to fall asleep because of the jerking when I do not intentionally move. The next day I am still shaking and want to just sleep for the next 3 days. Is this something anyone here has dealt with or should I seek further doctors?

Thank you so much,
Debbi

[lilred]

Debbi,

You did not say what type of doctors you were seeing. If you are not seeing a Neurologist, I would suggest that you see one as soon as possible. If you are seeing a Neurologist, I would suggest you see a Movement Disorder Specialist.

I, too had an "aberant migraine" recently that had one side of my face without feeling. They used to call them "complicated migraines". No stroke and spent two days in the hospital. I have had migraines since I was a teenager.

Topamax is sometimes used a a prophylactic for migraine. It's use is to try to prevent the migraines from happening or decreasing the frequency. My Neurologist put me on it in the hospital. I had a kidney stone many years ago when I was pregnant (1972). He talked about the tendency to develop kidney stones and asked me if I wanted to try to use it. I agreed, but had to go off of it after about 2 weeks due to problems with my vision and eyes. I did lose my appetite on Topamax, too.

I am no doctor, but it sounds to me like you may have more than one problem going on. ET usually causes tremors all of the time to my knowledge. I have not "chatted" with anyone that has episodic episodes. My tremors go away when I am lying flat or reclined in my recliner. I don't remember anyone talking about having to move constantly to prevent tremors.

ET effects people differently. I have the "yes-yes" head movement and am now noticing some tremor in my hands especially my right. I take Primadone at the current time. I was diagnosed in 2007. At that time I started on Primadone and was able to go back to work for 11 months. I would shake so badly that I couldn't stand without going to the ground or shake out of a chair. I would walk and that helped, but I could not stand still without falling down. The Primadone became less effective in 2008 and so far the neurologist hasn't found anything that helps as much as the Primadone. I no longer am able to work. He is going to try me on a different medication (Remeron), but I am not changing from my Primadone until after I have surgery on Monday. (total knee replacement) I am comfortable with my current state and I feel that "not rocking the boat" is the best measure until after surgery.

I stutter and have an almost constant throat clearing. I know of others that have had voice problems.
I also have memory problems and have difficulty with learning anything new. My old skills like typing have become a chore. You might find some typos, but I try to check my rambings before I post.

I don't know if you drink and I do not advocate starting if you don't, but one lady's doctor told her to drink a glass of wine and if it helped, then she had ET. Several people who have to give talks or lectures find that a drink before their presentation helps. They say that the rebound tremors are bad, but they do it just to get through their presentation.

It sounds like you help in AWANA at your church. I used to help, but had to give it up due to my tremors, stuttering, memory loss and problems getting up and down the stairs at church. I loved to work with the kids, they are so fascinating.

I guess I have rambled on long enough. The bottom line is continue with your search to find a doctor who is willing to work with you to determine what is exactly going on. You can have more than on thing going on at the same time. A movement disorder specialist (MDS) would be your best bet. A lot of them are affiliated with the larger medical and teaching facilities. I do not know where you live, but if you post a need for help in locating one, some one should help you.

There is another ET forum that has more participation than this one. It is wemove.org. I live in East Tennessee, but there are people from all around the country, Canada, Australia, and other countries who post there.

Welcome to this forum

lilred (Helen)

[dakotacop]

Debbi -
10 months ago, I was coaching football and began to feel my left side going numb. I chalked it off to the physical activity and hot sun. About 2 days later, I went to the local emergency room because I was convinced I was having a stroke. As you put it, a "wave" came out of my neck/upper back and went down my left arm and leg. The left side of my jaw and corner of my mouth went numb as well. I was in the hospital for 4 days. 2 MRIs, 1 CAT scan, a spinal tap (that was fun), dopplars of my arteries, blood draws, urine tests, you name it. Nothing. They found nothing!

Well, my left thigh was still numb when I left the hospital. I met with a neurologist about a week later and he diagnosed me with peripheral neuropathy, telling me my cutaneous nerve has been damaged. I also was showing signs of tremor in my left leg as well. I was put on Lyrica and Propranolol. Case solved, right?

On May 8, 2009, while I was at work (I am a deputy sheriff), I had "an attack" much like the one 10 months ago, but this one came on fast. I couldn't talk for about 10 minutes. My Chief Deputy was with me and drove me to the hospital. Again, I thought I was having a stroke. Another day in the hosptial, then back to the neurologist. My neurologist said I have ET, along with the neuropathy, but he also believes I have an underlying problem that we can't seem to figure out. Now, here I sit. I have been placed on medical leave until a doctor says I am fit for duty.

I'm 39, married, and have 7 children, all under the age of 15. Disability is really not an option. The "not knowing" is driving me and my wife crazy. It's 3:15am and I am up because my left leg has a mind of its own tonight. However, there is some comfort knowing I am not alone.

Have Hope,
Dallas

[Motherof6]

Dallas,
I know what you mean. I honestly think if I knew what was happening I would be able to grasp it better. Not to know what is going on or what the future holds is what makes it hard.

Helen,
I did get an appointment with a movement disorder neurologist, but that is not for another 2 months...


Debbi