Essential Tremor

[nick0007]

I’ve been having problems with tremors most all my life sense I was very young. I always had barely legible handwriting & I always had problems taking notes when I was in school. I also sometimes have problems talking ect. My parents did talk to doctors about it but the doctors didn’t seem to know much or care about the tremors then. A few years ago I saw a neurologist who diagnosed it as being "Benign Tremors". He told me it was something I was born with & it was likely going to remain stable for most all my life. Sense then I noticed it’s been getting worse. I find it harder to tie shoes, button shirts, shave ect. About 4 & a half months ago I started seeing a different neurologist cuz the one I saw years ago is no longer practicing here. I looked around & the neurologist I found is the only one I could find in the area for tremors The 1st time I saw this neurologist, he diagnosed me as having "Essential Tremors" & he told me it was a degenerative disorder. He also told me that their were lots of treatment options he could try & he was going to start with medication 1st. I’ve been on like 7 different meds sense then & some of em made me extremely sick. After one of the 1s I tried, my family doc had me go to the hospital cuz he thought I may of had a stroke Luckily I didn’t have one but no doc has been able to tell what happened (most suspected the med) except for my neurologist who says I have a pinched nerve thing like Tendonitis or Corporal Tunnel but he had to run some very expensive test 1st to be sure. None of the meds I was able to tolerate seemed to help the tremors at all. The last med I’ve been on for a while & after I started it, I started sleeping least 10hours a day/nite. I’ve also been feeling tired & have little energy. My tremors are actually worse now than they were before I started the med as well. I saw him couple days ago & I told him about the problems I’ve been having with the med & how I wanted to try a different treatment other than meds. I asked him about the other treatment options he had mentioned the 1st time I saw him including surgery but instead of referring me to someone else or discussing those options the neurologist wrote me out a prescription for something else to take in addition to the med I’ve been on & for me to go back in 3 months. I’ve been out of work for 4 months cuz of the tremors & I sometimes find it hard to do things I’m used to doing like typing, eating, even drinking sometimes. I had lots of test run including an EEG, EMG, CAT-scan, MRI’s done on my head/neck/back, blood work, urine sample as well as a few X-rays. No one told me anything was wrong & when I question the treatment my neurologist gave me some speech about how he’s been treating lots of patients for a long time & how he’d be like the riches person if he had a pill that would cure it. Just cuz he has lots of experience does NOT make him good. The last few meds he put me on are anti-depressants & he put me on em cuz he thinks that the shaking is a result of anxiety I have problems with shaking when I do NOT feel anxious & I think that IF I do have any anxiety problems, it could be cuz of the shaking. I looked up those anti-depressants & they are NOT used to treat tremors & actually have side-effects of shaking. I tried telling the neurologist how I feel about it but he didn’t seem to care or listen to me. I don’t like his office either cuz I sometimes have to wait an hour before I can see the neurologist like I did last time. They’ve been some screw-ups with one of the test that was performed in his office (long story) & I had to sign 3 legal pages before they accepted me as a patient about how the doc & his staff/office can NOT be held liable in any way for any problems with treatment ect. I don’t plan on going back to him again. I truly believe that I’m better off with the tremors than seeing him.


I’m not sure what to do now except try to see a doc somewhere else but the three cities that come to mind around here are over a hour away. I'm 26years-old. I need to know what’s going on so I can move on with my life.

[lilred]

Nick0007,

There is no known cure for essential tremors. There are drugs and surgical options that can help. I am on my second drug for mine. I think a lot of people find that Primadone and a beta blocker work well together.

I can sympathize with your dissatisfaction with your current neurologist. I am planning on going to a movement disorder specialist in April. This is a neurologist that has further knowledge about diseases like ET and Parkinson's. I was on Promadone for 18 months. I had an 11 month period of time that I was able to go back to work. I still had some tremors, but not bad. Gradually, the tremors began to worsen and he kept increasing my medication until it was at a dose that was causing side effects. He went back down to 150 mg per day. I was not able to continue working and have been off since July of 2008. I am/was a RN. It was no longer safe for me to try to take care of patients. My neurologist started me on Klonopin in January. It does not seem to be helping. I do not want to be on Klonopin. You can become addicted to it and your body builds a tolerance and they have to increase the dose. It has messed up my concentration and I want to sleep all of the time.

There is another site that has lots of things going on with ET. It is www.wemove.org. Many different people have suggestions about how they are finding some relief from ET. Go there and read not only the current topics, but read the older ones as well.

ET is different for each person. One thing in common is the depression and many try to remain isolated. It is a difficult disease to deal with. I am 60 so it does not have quite the same impact on me as it has on someone your age. Some people are born with it. Its progression can be slow or fast.

Don't give up hope. You might try to look at some of the clinical trials that are being done and see if you might be interested in participating in one. You are not alone.

lilred (Helen)

[nick0007]

I've been on Primadone & Propranolol but had bad reactions to both. I tried Klonopin too but it didn't seem to affect me at all. I did briefly look at that site & it looks good. To much info to take in at 1ce but the definition terms in their helps a lot. I tried research on search engines (how I found this site) & most sites all said the same stuff with the same terms but nothing explained what it meant.

I’m frustrated to cuz I’ve been having tremors like my whole life & lots of people don’t seem to understand it. Some thought I was making it out to be worse so I could get out of doing, things, be lazy ect. My family does realize that I do have a problem but with the way it’s changing, they think that I have more control over it than what I do. My life is on hold rite now cuz of this & wer all frustrated. It would be nice to talk to someone in person about it & get a prognosis. If it cant be treated well, I’d like to know if it’s going to keep getting worse changing ect.

[lilred]

ET progresses differently in people. Some have a slow progression and some have a rapid progresssion, sometimes you go to sleep at a certain point and the next day something else happens after you wake up. One thing for sure is that you cannot control how the tremors will effect you.
Some days are better than others. Some days I have to spend in a recliner and some days I can get a little work accomplished. It is hard for someone who does not have ET to understand what your life is like and what you are going through. I try to take it one day at a time.

I would recommend trying to find a neurologist that is a movement disorder specialist. A lot of the people on line seem to think that they are more in tune to the problems that ET presents. Most of the MDS are located near the bigger hospitals. I recently talked to someone that went to Emory and had DBS (deep brain stimulation). I do not know at what point DBS is offered to patients. I have read a message from someone who had DBS in her teens and also from someone who is nearer my age. Both had successful outcomes. There are more and more people that have DBS if it is offered to them. It is not without risks as with any other surgery. One person in a discussion forum had DBS and had a stroke as a complication. DBS would need to be carefully considered. I am not as bad as some of the people that post in the discussion forums.

There are other meds that can be tried. Trying to find a way to control ET is trial and error. There are other anti-seizure medications that can be tried.

I spill things a lot. I use a straw or a cup with a spout to prevent giving myself a shower all the time. Sometimes I use a napkin as a bib to keep from wearing my food. I have difficulty holding on to things so I use both hands. My primary movement is a "yes-yes" motion with my head. If I sit or stand too long, they become so violent that I shake out of the chair or go down to the floor. I have recently noticed that on some days any use of my hands makes it worse. Today is one of my better days.

I am a Christian and I believe that God will help me through each day. I do not know the reason He gave me tremors, but I am sure He had a good reason for it. I am/was a RN and work had become a nightmare. I also have other health problems and maybe this is the only way He knew He could slow me down and make me stop working.

I am fortunate that I have long term disability that pays me. I also recently filed papers for my Social Security disability.

To summarize it I would say live one day at a time, and find a movement disorder specialist. Go to the forums and look for anything that might help you.

There is another web site that you might want to look at it is www.essentialtremor.org. They offer a membership to IETF and send magazines to try to help you and your family to better understand the disease and help to deal with it.

lilred (Helen)

[nick0007]

Thanx for that. I feel lots better now that I vented. It's good to know I'm not alone in this. I think sense I had this most all my life I learned other ways to adapt. I find when tremors are bad that the more I try, the worse it gets so I take breaks ect. Sometimes I would get people to help or do things for me instead of attempting them so I guess I can understand why family thinks I'm not trying as hard as I could. A movement disorder specialist sounds like a good idea. I'll do some research into finding one. I glanced at IETF site & it looks like it may have some good info & resources. I did read a bit of info on DBS & it does sound serious but my dad did know someone who has Parkinson's & he had some kind of surgery like a year ago cuz he could barely walk & he's a lot more functional now & can probably hold a job again. I never met him but my dad says he was a lot worse than me but I did tell my dad I'd like to know more info in case he sees him again. Maybe he would know of a good doctor or has some other tips. I never met anyone anyone that I knew had tremors so it would be good to talk to someone.

[bedz]

hey nick i'm 62 and have had et's ssince 18. i'm on dbs from medtronic. it works great. if you live close try st. vincent in indanapolis, in. they are great.

[macacoza]

Hi Nick...I hate to hear you have ET..I have had it for over 20 yrs and every year it gets worse. BUT..i can and do live with it. I still hold my job as a Realtor although I do tell my customers that I ahve ET. It is better to be up front than for them to think that I am nervous with them. I take a combination of primidone and propranol..and YES, the beta blocker slows my heart and I get tired...funny story here..any new nurse that takes my pulse gets this worried look on their face and says.." Your heart rate is very slow..let me tell the DR"..haha..I am used to it though. I takes both meds to help me. 1 alone will not do the trick. read all the post..new and old..they will help you a lot! HAng in there..we all in this together!
Deb

[diane sea]

I feel your pain and frustration. The wemove site can seem overwelming, I know. Have spent hours and hours reading. All of this is a learning experience. Depression is so common. All we can do is try to put on foot in front of the other and TRY to stay out of the black hole (depression as I call it). Please hang in there. We are all pulling for each other.
Diane

[macacoza]

AMEN DIANE!

[geminitwist]

Depression and anxiety I think are part of the ET. Remember our nerves are shot. As for drugs, Proparanol is the only one I found worked with little side effects for me. One doc tried to play with other meds and literally paralyzed me with the drug he gave me.

Many people (I included) swear but a tiny bit of alcohol. Do not over do it. Just a simple glass will naturally take the edge off. Doctor's would rather push pills but if you aren't too too bad, try a glass of wine. Works like a charm.

For me, I have felt like a freak all my life. My employer (gov't) gives me a hard time because they don't understand or believe my disability. And it is a disability... otherwise we'd be normal. At least I have known all my life what I had and am able to help my children deal with their symptoms.