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Today I was diagnosed with ET. A year and a half ago I saw my first Neurologist. He told me that there was a 50-90% chance I had PD and I began medication. It seemed to help, but not much. I got a second opinion from a Movement Disorder Specialist. He told me that I didn't have PD, but a physiologic tremor. He told me that he thought it was related to the muscle weakness caused by my Fibromyalgia and that the tremor is exacerbated my stress. Today, I went to my first appointment with my THIRD Neurologist. He diagnosed me with ET and sent a prescription for a beta-blocker to my pharmacy. I think it was called Metopropol or Metoprolol. He prescribed 50 mg. I have been taking Sinemet for posible PD because my GP started me on it a month ago. I have to titrate off of that for the next three days and then start the medication for ET. I am hoping that this will be the answer to my prayers.
In April of 2007 I noticed that my legs were really shaky when I was climbing stairs. When I sat down in my seat they wouldn't stop shaking. I attributed the shakiness to being a little out of shape. I had surgery a few months prior and was still not totally myself. Then, in November of 2007 I noticed a slight tremor in my right hand as I reached for my water glass off of the counter. Before I knew it, it had started up on the other side. My tremor is now all throughout every part of my body, including a very small tremor in my head. I have a lot of stiffness and pain across the top of my shoulders and in my neck. I think my stiffness is one of the reasons that the first Neuro thought I might have PD. So, I am curious as to anybody here with ET has the same type of pain and stiffness in their shoulders that I have. Is it common in ET?
Thanks,
Evonne
Posts: 10 | From: Eastern Washington | Registered: Jan 2009
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I have it. I think mine was caused by tw different accidents and now by the constant shaking. I guess I need to look into some relaxation techniques.
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I HAVE PAIN IN NECK MUSCLES FROM TRYING TO KEEP MY HEAD BALANCED AND NORMAL AS POSSIBLE. I LOVE TO SWIM, HOLDING MY HEAD OUT IN A PRONE POSITION MAKES THE BANDS OF MUSCLES AROUND MY HEAD REALLY HURT. FIND A CHAIR OR SOFIA THAT FEELS GOOD, USE BUCKWHEAT PILLOWS OR NECK PILLOW TO GIVE YOU FIRM SUPPORT. GO BACK IN TIME ON THESE EMAILS AND YOU WILL FIND LOTS OF TRICKS TO HELP. GOOD LUCK,HELEN/FL PS. GET OFF THAT PD MED, THE 2 CONDITIONS ARE NOT RELATED.
Posts: 159 | From: florida | Registered: Feb 2008
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Welcome to the ET forum. I have neck stiffness and discomfort. I also think mine is related to trying to hold my neck still or when my tremors are really bad from the shaking. I have neck and right hand tremors.
I thought it might be helpful for you to know about the onset of my symptoms and what I have experienced through this journey so far. This is my personal story.
In January of 2007 I had a hysterectomy, but kept my ovaries. By April of that year, I was suffering from weakness, fatigue, stiffness, a feeling of internal shakiness and shakiness in my legs that I first noticed when I was climbing stairs. I went to my family practice doctor. He examined me and ran all sorts of blood tests. All of the blood test results were normal. He couldn't find any reason for my symptoms. So, I just kept on going...and feeling worse as time passed. In October of 2007, I developed a tremor in my right hand. I noticed it when I would reach for my glass off of the counter. It was only noticeable to me at the time. By December, it was present in both hands/arms and noticeable to others. My stiffness in my back and neck progressed to the point where I developed terrible headaches. I was put on Butalbital and Wellbutrin. I eventually stopped the Wellbutrin because it wasn't helping me feel better. By March of 2008, I developed a jerky movement in my forearms when I would bend my elbows. It would cause a tremor in my hands. Basically, all movements in my arms became jerky and stiff. I went back to my family doctor in March and he said he didn't know what was wrong with me. He suggested that I see a Rheumatologist and a Neurologist.
The Rheumatologist diagnosed me with tendonitis in my left elbow. I'm right handed so I thought that was odd. He also diagnosed me with fibromyalgia, carpal tunnel in my right hand and cogwheel rigidity in my arms. He told me that cogwheel rigidity is most commonly associated with PD. He referred me to a Neurologist.
Well...in the time before I got in to see the Neurologist, I read up a lot about cogwheel rigidity and tremor/essential tremor. Most of my issues were movement related, so I thought I might have ET. The only problem was that I was only finding that cogwheel rigidity is a part of PD and not ET. When I questioned my Neurologist about ET vs. PD he said that cogwheel rigidity is specific to PD. I asked if he felt it was PD. He said about 50%. He said that I could try Requip and if I responded to it, then he would be about 90% certain that it is PD. He also ordered an MRI. My MRI results were normal. I decided to try the Requip. I took it for three weeks and then developed a rash. While I was on the Requip, I felt less stiff and my headaches went away. My left elbow that I wasn't able to straighten out(tendonitis?) could now straighten out without a problem...I found that odd. I had been unable to straighten it out for about two months. Like magic, I could move it all around again! I couldn't tell much of a difference in my cogwheel rigidity until I had to stop the Requip. Then, in the five days I was off the Requip before I was able to start the Mirapex, I realized that the Requip was working because without it I was much more stiff and my movements were more jerky. My doctor switched me from Requip to Mirapex just after Memorial day 2008. I had a hard time with the nausea and sleepiness as my dose was increased each week. I got up to .5mg 3x a day. Things really seemed to smooth out with my movements, and eventually the nausea subsided. In June, I saw the PAC in my doctors office. She added Zelapar to the mix. I didn't really notice much of a difference being on the Zelapar other than if I am a little late taking a Mirapex, I didn't seem to get as shaky. The PAC had hoped that I would be able to reduce the Mirapex dose so that I could reduce my sleepiness. I didn't want to do that because I still don't think that I am really at a high enough dose. I still have very stiff achy muscles across the top and back of my shoulders, and although the cogwheel rigidity has smoothed out, it is still present and seems to become worse with repetitive motion.
Early in July of 2008, I noticed that when I bend my wrists I have this real jerky vibrating type of tremor. I called my PAC and told her about it. She said that it could be cogwheel rigidity in my wrists. It sounded right to me because it is the same type of jerky feeling that I have in my elbows/arms. I went to hear my doctor speak at an event in July. Afterwards, I showed this new shaking to him and he said that he has not seen this type of shaking with PD. He also commented that my cogwheel rigidity is not typical. Something about how I only oppose one way. I can lift up (most of the time) without shaking, but I shake when I move downwards. My legs shake when I climb stairs, but they are worse going down the stairs. I have this type of shaking/catching, whatever it is, in my shoulders when I drop my arms down, hip/leg joint when I do leg lifts, elbows/arms when I move my arms from the elbow, etc. It seems like the more I try to repeat a specific motion, the more shaky and weak I become.
My Neurologist suggested getting a second opinion from a doctor at the University of Washington. He also said something about trying Requip XL, trying a different agent, or going off of my meds all together and seeing what happens. I told him that I know what happens, I get shaky and stiff. I had already discovered that in the five days off of meds... between Requip and Mirapex. He said, "Then you have your answer." I am still uncertain though. It might be a bit of denial...or fear of something worse than PD because of the rate of progression and because I am affected on both sides of my body. If I didn’t have PD, then I wanted to find out what I do have.
I had attended a few WWPD meetings and met some really nice ladies with PD. I had heard a lot about a MDS that was located right in the Spokane Valley. I decided to see if he would accept me as a patient because he was highly recommended and his office is located closer to our home than The University of Washington.
I had my first appointment with the MDS in November of 2008. At the time, I was on .5mg of Mirapex three to four times a day. He said that if I presented to the first Neurologist the way that I presented to him, PD would not be the first thing to come to his mind as a diagnosis. He did take into account that I was taking the Mirapex at the time. I let the doctor know that I had developed some OCD type behaviors as a result of taking the Mirapex. Mainly, I became a COMPLETE clean freak about my house! Another problem was that I didn't see anything wrong with spending money that I didn't have to buy things that I really didn't need! This resulted in a pretty hefty credit card balance! In addition to those side effects, I had lower leg swelling. Because of all of that, he told me to go ahead and stop taking the meds. He put me on a schedule titrate off of the meds slowly.
Before my first appointment the MDS had found some interesting stuff right in my medical chart that made him consider Stiff Person Syndrome and a Paraneoplastic Syndrome. He ran all sorts of blood work and it all came back normal. He set me up to have an EMG. The results of that test ruled out Stiff Person Syndrome and ALS. The EMG did pick up a resting tremor in my left bicep and left hand. At my last appointment with him, he told me that he didn't think that I had PD. I guess the rate of my tremor was different than the rate of a PD tremor. In May 2009, the MDS diagnosed me with a physiologic tremor that was caused by muscle weakness that he felt was associated with Fibromyalgia. He told me that the tremors were exacerbated by stress and anxiety. I was upset because I know that there is something else going on with my body.
In August 2009, I became very depressed. I went in to see my family doctor. He started me on 75 mg. of Effexor XR. It seems to help make my moods a little more even, but I still have some days where I feel very sad. It has helped with my anxiety, but not as much as I would like.
After almost a year being off of all PD medications, I was so stiff and miserable that I couldn't take it anymore. My neck and shoulders were so stiff that I had a limited range of motion in my neck. I went into Urgent Care. I mentioned to the doctor about the possibility of PD and that I had been evaluated by a Neurologist and a MDS. I told him the outcome of those evaluations. I showed him the cogwheel rigidity he told me that my muscles were in a constant state of spasm and he prescribed 10 mg. of Valium and told me to take it three times a day. He told me that my tremor was not from Fibromyalgia. He told me that if I was experiencing essential tremor or intention tremor that the Valium would help, but that it would not do anything for PD. It didn't help my shakiness or racheting movements at all. It did make me feel really tired and I was only able to take it twice a day because it made me so tired that I couldn’t function very well during the day.
About a week later I went into Urgent Care Again. I saw a different doctor. By this time, I had a very limited range of motion in my neck and it was moving into my the right side of my jaw. I mentioned to him about the possibility of PD and that I had been evaluated my Neurologist and a MDS. I told him the outcome of the evaluations. I showed him the cogwheel rigidity and the jerking that I have in my wrists when I move them. He told me that the jerking in my wrists is called myocyclonus. After a thorough exam, he told me that my tremor isn't from Fibromyalgia. I told him that I had felt much better on the Mirapex. He offered to write me a prescription for Mirapex. I told him that I had some bad side effects from the Mirapex, but that I would really like a prescription to try Sinemet. He told me that he would have no problem writing me a prescription for that. He prescribed Sinemet 25/250 mg. I started that on October 19, 2009.
I have noticed a great relief in my stiffness and ratchety feeling. My tremor is strange. It is usually most visible when I move. However, I feel my tremor on the inside all of the time and my husband can feel it if he is leaning on my left arm. This feeling is worse on the left side of my body. The Sinemet has given me a very peaceful feeling and had a very calming effect. I don’t feel that internal shakiness on the Sinemet until the afternoon. I still have that ratchety movement that I have been told is cogwheel rigidity, but it does seem to be a little better since I have been on the Sinemet. As far as negative side effects are concerned, the only complaints that I have are that it makes me feel really sick for about an hour and a half, sometimes it makes me throw up. I have also experienced dry mouth. Other than those two things, no other complaints.
November 13, 2009
I had my first appointment with my third Neurologist today. After a very thorough examination, he diagnosed me with Essential Tremor. One of the craziest things was when he asked me to draw a copy of a circle that was like a spiral formation. I began to copy it and he asked me not to press so hard on the paper. I told him that I always use a lot of pressure when I write. He told me that was an adaptation. I had learned to adapt to my tremor. He asked me to try and relax and copy the circle using less pressure. As I did, what began to form was a mess of scribble scrabble going around in a circle. You could see my tremor very clearly in my circle. At that very moment, I said, "Oh…my God, I have Essential Tremor, don't I?" Honestly, I can't remember what his exact words were. I think he mentioned finishing the rest of the exam so that he could continue to check out my tremor some more.
At the very end of the exam. He told me, "You have Essential Tremor." He told me the differences between PD and ET and told me why I didn't meet the criteria for PD, and why I did fit the criteria for ET. He determined that I DON'T have cogwheel rigidity when I am in a fully relaxed state. The problem is that I am not very good at relaxing. When I was able to fully relax, the cogwheeling went away. It was a Rheumatologist that first noticed the cogwheeling and sent me to the first Neuro. Even when I questioned my first Neuro about the possibility that I had ET because of the fact that my tremors most often occur with movement, he said that I couldn't have cogwheeling with ET. It was only a part of PD. I remember him telling me that I had really done my research though. Another thing that has always bothered me is that from the beginning I knew that my tremor was unusual because it is most noticeable with movement. That doesn't mean that I don't have a tremor when I hold a paper in my hand or move my thumb though. The new Neurologist today told me that is because anytime I change positions, even just moving my thumb from one stationary position to another stationary position can cause a tremor. Anytime a person with ET moves a muscle there may be a tremor. Also, my shakiness is totally symmetrical, which is not the way things are with PD. I have been pretty symmetrical in my shakiness from the beginning of all of this. That has always bothered me and led me to believe that if I did have PD, it sure had progressed really fast…which led to a lot of fear.
All I can say is that when the doctor was sending my prescription for a Beta-Blocker to treat the ET to the pharmacy, I began to feel the tears well up in my eyes. Then, before I knew it the tears were running down my cheeks and I had to grab a tissue. Dr. H looked at me and said ,” That’s why the tissues are there!” I told him that it had been almost three years of hell just trying to get the right diagnosis and how I had spent so much time worrying about what was really going on with my body and how I had really been let down by the doctors that I had seen. He told me that my MDS was right as far as diagnosing me with a physiologic tremor because ET is a physiologic tremor. He said that my MDS just didn't label the tremor as ET or treat me with ET medications. Where my MDS was wrong is that my tremor has nothing to do with Fibromyalgia and everything to do with ET.
Tonight, I feel pretty peaceful about all of this. I still have some questions about why I have so much pain in my body. Maybe I have Fibromyalgia and ET. I also have some questions as to why the dopamine agonists and the Sinemet seemed to help me with my symptoms, especially my pain level. My thought is that since I have had depression for so long(on and off since 2002) and have been untreated for so long, the PD meds probably gave me that "feel good" chemical that probably helped. Do any of you scientific thinkers have any ideas as to why the PD meds seemed to give me some relief? Just curious…as always!
I am supposed to wean off of the Sinemet over the next three days and then begin the medication for ET. I am hoping to see some pretty quick benefits, but I really don’t how soon that should happen. I guess I have more research to do.
November 14, 2009
I am a little nervous about starting the beta blocker that they use to treat ET for a couple of reasons. The first reason is because I have type one diabetes and the Neurologist told me that it can make me have higher blood sugar levels. So, he will be in touch with my Endocrinologist about that and I will be sending more regular blood sugar reports to my doctor as well. I use an insulin pump, so any adjustments will be pretty easy to make. The nature of diabetes is kind of frustrating though because there are so many things aside from food that make it difficult to treat. I am just hoping that things don't get too crazy! The second reason that I am a little worried is because beta blockers affect your blood pressure and tend to lower it. My blood pressure is normal, sometimes a little on the low side. I am concerned about that. There are a lot of people in my family that have high BP. I have always joked that that is the one thing that I don't have to worry about. I get all of the strange stuff! Now, I will have to be a little more watchful about that, too. Third, I am a little concerned about what effect the beta blocker might have on my heart. I know that they use it for heart problems. I have never had any problems with my heart. I try to eat right and stay active and I know that diabetes is tough on the heart as it is. So, hopefully, all of the things that I do right will be a benefit to me.
Yesterday when the Neuro checked my vitals, my BP was 130/85. That is higher than normal. My pulse while resting was 104bpm. That was high, too. I am sure that it was related to my anxiety level. He explained to me that anxiety is kind of like a vicious cycle. You get anxious, which causes more adrenaline to flow through your blood, which in turn, makes you more anxious. He said that beta blockers help to stop that cycle from happening. That all makes sense to me. I have always been on the anxious, hyper vigilant side of life. I have read a little about the PD personality and I pretty much fit that description to a tee! If anxiety exacerbated ET tremors just as it does PD tremors, than it would make sense that something that helps with anxiety would be helpful to settle down the tremors.
I cut my Sinemet in half last night and took it before bed. That worked like a charm because I slept right through the nauseous phase. I am supposed to take it for two more nights and then be done with it. I don't know if it is normal or not, but I am very stiff across the tops of my shoulder muscles again. The Sinemet really helped with that. It makes me wonder about the possibility of some sort of dystonia. My muscles are like rocks in that area. I questioned the Neuro about that yesterday and he said that he has never met a person that didn't have some knots in those muscles. I felt that was a little too easily dismissed. The problem with that is that my muscles are completely knotted up. As I said, the Sinemet really helped with the pain from that. I haven't noticed that the muscles feel any looser, but last night my husband massaged my shoulders and he said that they feel looser to him. He is my personal masseuse and he would notice that change more than I would. The Sinemet also really helped with the internal vibration that I feel through my body. It bugs me that it is worse on the left side of my body than the right side and that is one of the things I thought pointed towards PD. The Sinemet helped that, too. I also felt that my movements were a lot less ratchety or jerky while on the Sinemet. I was able to move more fluidly. I didn't take my Sinemet in the morning yesterday because I wanted the new Neuro to see me without it. I was way worse yesterday than I have been since I started taking the Sinemet almost a month ago. So, as you see, I am still not really sure what to think about all of this. By nature, I am very inquisitive and my husband thinks that is part of my problem. He thinks I should just take what the doctor says and stop worrying about having PD. I think that is great advice, but unfortunately, doctors are wrong about things all of the time. I know that my presentation is not typical for PD, but as you read above, my response to the PD meds still leaves me with questions. That, and the things that you will read in my next paragraph.
I did some reading about ET last night. Another thing that bugs me is that what I read on many sites said that ET isn't very common in the legs. The first symptom that I ever noticed was that I was having problems with my legs getting really shaky when I was climbing up and down the stairs. Also, I couldn't find anything anywhere that mentioned stiffness being a part of ET. I have complained about feeling very stiff for the last three years. As you know, that is more of a classic PD symptom. However, I don't have any problems with slowness or balance according to the Neurologist, so I don't fit the PD criteria. I guess there is just a small part of me that is worried that I might fall somewhere in between the two or have aspects of both. I am doing my best to not think about it, or worry myself unnecessarily, but I have that little voice in my head that is still questioning. Maybe it is just going to take awhile to accept this.
Posts: 10 | From: Eastern Washington | Registered: Jan 2009
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I have a question. How many of you have problems with your legs shaking when you are doing something active like walking up or down stairs? It was one of the first things that I noticed early on in my journey. However, I have read that it isn't very common to have ET affect the legs. My curious nature is getting the best of me!
Posts: 10 | From: Eastern Washington | Registered: Jan 2009
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my legs or shakey and stiff,they hav always bin shakey but ive only noticed them gettin stiff ova last couple of yrs,my left knee is stiff and i find it hard to push up frm a crouchin position say like if you bend down 2 get sumthn out of cupboard,ive noticed i cant go up or down stairs v fast,i also hav the shoulder snd neck pain,and my lower back is v stiff thats wer the stiffness started about 5yrs ago,i hav neva headrd of stiffness or pain with ET but thats wat i hav had frm a young age
Posts: 129 | From: Belfast Northern Ireland UK | Registered: Nov 2009
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I forgot to add you can hav both ET and PD and the meds for PD only help if you hav it and they our used as part of the dx of PD,hope this helps Posts: 129 | From: Belfast Northern Ireland UK | Registered: Nov 2009
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My Neurologist told me that ET was an action or movement tremor and PD was a resting tremor. My tremors usually go away when I lay down or recline in my recliner. On a very rare occasion, my head shaking continues, but the severity is very decreased. I have spent a lot of time in bed or in a recliner.
You have describe what a lot of people go through to be diagnosed.
A lot of us have been tried on several medications at various times. It is a "trial and error" to see if one medication will work. If one doesn't work, you try another one. Beta blockers are pretty much standard starting out if you can tolerate them. I had a low blood pressure when I started on a beta blocker, but it didn't have an impact on my blood pressure. I am now on a calcium channel blocker. It will make you sleepier, especially at first. I was taking a beta blocker for my heart and the sleepiness and the "foggy" feeling got better with time. I have been on 4 different medication so far in two and a half years. My problem with these have been excessive sleepiness or vision changes. I seem to have less problems with Primadone at this time. I am currently dealing with insomnia. I don't know if it is due to the combination of drugs that I am taking or just one of them. I see my primary care doctor the 30th of this month and I will have him review them. I also will see my psychiatrist on Monday and I am going to go over my medications with him, too.
You can easily become depressed with ET. Some people isolate themselves. I have had periods that I haven't left the house for 2 weeks except to go to the grocery store with my husband. Other times I am going somewhere everyday. I prefer to be with my family because they understand about my ET. Strangers seem to stare. My sisters know that if I haven't called them or gone anywhere with them I am in my "isolation" mode and come and get me and take me out. I also tire very easily.
Having ET caught me by surprise. No one in my family has had it before me. I am/was a RN before this started. I can no longer work because some days my head shakes so badly that I can't stand up with out going to the floor. I also will shake out of a chair. My short term memory is about gone and I have to concentrate to remember past things. I also can't keep up a line of conversation when any distraction makes me forget what I was talking about.
I had to quit nursing 18 months ago. I was able to go back to work for a year after I was first diagnosed. I was on Primadone and it did well for a year and then my tremors got worse. I ended up on a big dose of Primadone and I developed vision problems and my Neurologist has tried other medications. I have had side effects on low doses of medication. I always end up back on my Primadone, but in lower doses.
It is possible to have PD and ET. ET is from an abnormal area in the brain. PD is caused by a chemical imbalance.
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As lilred (Helen) said, my neurologist also told me that the diagnosis of ET is generally because the tremor does not exist at rest (which is my case). I do have leg tremor, though, but only when I'm doing something - essential when I drive, the tremor comes in when I lift my foot from the accelerator.
As for stiffness, it's entirely possible that you have fibromyalgia and ET. My mother has the two; she takes small doses of prednisone daily for the FM, and it seems to help a lot.
Metoprolol seems an odd first choice: it doesn't seem to be indicated for ET. The main treatments are propranolol and atenolol, as well as mysoline, which is an anti-epileptic. (Clonazepam is also used, as are a few other meds, which work with some people but not many.)
-------------------- ET caused or exacerbated by brainstem cavernous angiomas Posts: 23 | From: France | Registered: Oct 2009
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I would like to thank all of you that have responded to my thread. I am 34 years old and the last three years have been very difficult as a result of all of the health problems that I have had. I feel like I am at least double my age some days!
I am still not sure what to think about all of this. I have symptoms that overlap both PD and ET. For now, I am going to settle with the ET diagnosis, but I wouldn't be surprised to hear down the road that I have ET and PD. The relief that I felt from the Sinemet(PD med) was great. I am so much more stiff and achy without it. I just keep thinking that there has to be something to that.
I am going to start taking the 50 mg. Metoprolol Extended Release on Tuesday because I will be home that day. I figure that if I have any problems from the medication, at least I will be in my own house and not at work. I called the pharmacist yesterday to discuss the Metoprolol with her. She told me that the use of Metoprolol in ET treatment is considered an off label use, but it is pretty common to use it for ET treatment. I don't know why the doctor decided to try that first, but I am going to just roll with it and see how it works.
Helen(LILRED),
Thanks for sharing your story and your experience with me. As far as I know, nobody in my family has ET or PD that I know of either. My Dad is an alcoholic and he is frequently shaky, but I have always attributed that to his addiction. He tries not to drink much around me because he knows I don't like it. That probably makes him more shaky because of the withdrawal.
I am concerned about the possiblity of becoming more depressed from the beta blocker. I have had depression on and off since about 2002 when I was diagnosed with type 1 diabetes. Through the years, I have had periods when I have taken medication to treat the depression and periods where I have tried to get through it on my own. Currently, I am on Effexor for depression and anxiety and I have been told to go ahead and double my dose. I am going to start that today. I have been married to my husband for sixteen years and we have two sons. Our oldest is twelve and our youngest is nine. They are both wonderful kids and we are a close family. My faith in God and the love of my family is what gets me through the toughest times. I try to put on my "happy" face even when I feel miserable inside for the sake of my kids. However, there are some days I do feel it is better to keep to myself a little bit. My husband is pretty in tune to when I am having one of "those" days and he is great at picking up the slack and taking over with the kids. Depression is miserable. Especially when you look at all of the good things in your life that you have been blessed with...and then feel even more guilty that you are depressed. I wish I could will myself out of it, but it doesn't work that way.
You said that having ET caught you by surprise and that nobody in your family has had ET. Did ET come on suddenly for you? I worked as a Nursing Assistant in long term care and in a hospital on a surgical floor. I found working in the medical profession to be very stressful and I could see that many of the nurses felt the same way. For me, I knew I couldn't handle it and I left the profession. I am sorry that you are now unable to work as a nurse as a result of your ET. Did you find working as a nurse to be stressful for you? Do you think that may have contributed to or exacerbated your ET? I hope that I didn't offend you with those questions. I am interested in how high levels of stress affects our bodies. I wonder if it can cause damage to the cerebellum and cause things like ET. My youngest son is dyslexic, has had speech and articulation delays, has predominantly inattentive ADD and an auditory processing disorder. He started speech therapy at the age of two. Ever since he started school, life has been stressful and sometimes heart breaking. It has been hard watching him struggle and barely keep his head above water every year in spite of all of his hard work. I have been the main person providing him all of the support that he has needed throughout the years. It has been downright exhausting at times! He is in fourth grade this year and he is finally at the point where he is doing very well. All of the hard work has been worth it and I would do it all again in a heart beat. I just wonder if the stress of all of this through the years might have contributed to my poor health.
I know a lot about PD because I was told a year and a half ago that there was a 50-90% chance that I had it. I have had a lot of time to look into it and learn. I don't know as much about ET yet because it wasn't really on my radar after my first Neurologist ruled it out. As you can imagine, I am trying to learn all that I can about it now. As I wrote earlier, I am still concerned that I might be dealing with both diseases. I know that PD is a progressive neurodegenerative disease and that it takes time for all signs to show up for the diagnostic criteria to be met. That might be the case with me or it might not be. For the last three years all I have said is that I just want to feel better and have my energy back. While I was on the Sinemet for the last month, aside from the morning queasiness from the pill itself, I felt better than I have felt for a long time. I am not sure what that means or why I felt better. I know that depression can be caused by a lack of dopamine in the brain. Maybe just having a little bit of that dopamine in my brain was helpful. Sheesh...I should have been a researcher!
Well, I better get off of this computer before my kids think that I have disappeared off of the face of the earth!
Thanks Again to All,
Evonne
Posts: 10 | From: Eastern Washington | Registered: Jan 2009
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ET cancause depession and socail anxiety,i hav both,any sort of stress makes ET worse even when your happy or excited you shake and you also shake for no reason and it makes you think that its something you hav done,it sort of plays games with you,its sooo! annoyin and frustrateing!
Posts: 129 | From: Belfast Northern Ireland UK | Registered: Nov 2009
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I also suffer from depression. I have been on medication for it for many years. Paxil seems to work the best for me. The psychiatrist has tried me on other medications, but so far only Paxil helps. I am from a family of 6 (5 girls and 1 boy). All of my sisters have depression, too. At the time we were diagnosed, we lived in different states.
I would say that my ET was a sudden onset but I had an almost constant clearing of my throat for about 2 years before my tremors started. My throat clearing had gotten better since I have been on Primadone. ET can effect your throat and I believe that was my first symptoms before my head tremor started. I still get hoarse a lot.
I do believe stress played a major role in my tremors. During the first part of my career, I worked in Intensive Care. When I became really stressed, I began working in a Cardiac Cath Lab. As the years passed, the stress became worse and worse. I was the one with the experience and knowledge to assist with any procedure. I was the one others came to when they had a question. Management and staff changes were high. The Director is now a CPA with no nursing or medical experience. The Cath Lab Manager is someone who will stand out in the hall and yell at people. Under this management team, I got a written warning (the first that I ever have had in my entire nursing career) about a problem there. (It was not due to anything I had done. The other nurse that was working with me went and told them that she was the one who had said what I was accused of saying, but I still got the written warning.) I would be called into the office about things that I had no control over: behind on the schedule including having to wait for the physician, cases taking longer than time allotted, the physician not wearing a mask (We were told that the physicians were not a part of the hospital staff and although policy required a mask, the hospital could not control his actions.). On one occasion I was called to the Manager's office and was told that "several of the staff didn't like to work with me or were afraid of me". This really tore me up especially since I went out of my way to help other people. One of the other staff members (after she learned why I was crying) came to me and told me that she was present when the conversation about me occurred and only one person voiced a problem working with me. This was a person that didn't want to learn how to assist a physician with a pacemaker implant. This skill was part of her job. Whenever she worked with me, I would have her scrub on pacemakers. Another time I was informed that the Director want to see another nurse and me after our case was finished. When we went to his office he demanded that we tell him which one of us had left a syringe and needle on the stretcher in the hall. Neither of us had done it and told him that. His reply to that was "well how did it get there if neither of you did it?" I told him that one of the staff members that had left might have had it in their pocket and left it there because the stretcher was close to the time clock. This is just a small sample of the things I was called to the office to "discuss".
I was the Clinical Leader of the electrophysiology lab. That required long hours and lots of overtime. I was replaced by a nurse that was a good friend of the manager. The excuse they gave me was not true. I had been working with all of the physicians for a long time and had a good relationship with them I went to the ones who reportedly complained about me. They denied it. I do not think that they would lie to me about it. The nurse that replaced me as manager was wanting a raise and the job paid more than just a regular staff member. I also had been there long enough that I had topped out on pay, so when evaluation time came, I didn't get a raise in my pay but I got a bonus instead. Some people are intimidated by someone who knows more than they do. I had also seen the pattern of management's manipulation to people that they wanted to fire but had no grounds to fire them. They kept on with the petty things until they had enough to fire them or the person quit. I was having more angina and crying every night after I went home. My tremors kicked in again and I was having thoughts about running my car into a tree. That kind of thinking earned me a week's stay in a psychiatric hospital and intensive outpatient therapy sessions. I am now out of therapy and only see the psychiatrist every 3 months for a medication review. I have not been back to work since July of 2008. Fortunately, I had disability insurance that pay 60% of my pay. I also had disability insurance on my car loan. I also get Social Security disability pay. I would like to know what was in the reports that my physicians sent to SS. I got approved on my first try. I had been told by people that no one gets it on the first try and I would probably end up getting a lawyer to take care of my claim. My Neurologist had never taken care of anyone who got it on their first try.
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Helen, did you ever question whether it could be other meds that cause the tremor? If it came on suddenly, perhaps it's a side-effect; you say you're taking Paxil; a quick Google suggests that tremor can be a side-effect.
-------------------- ET caused or exacerbated by brainstem cavernous angiomas Posts: 23 | From: France | Registered: Oct 2009
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I'm so sorry you were put through all that, lilred.
I signed into a hospital years ago thinking I'd finally find out why I shook. What a joke that was....
Two guys in white coats led me to a ward and the door was locked behind me. What a puzzling shock! Turned out to be a psychiatrict ward. shees. My mother had talked to those two men, before they came to me & I suspect she told them I was shaking because of some emotional disorder--hense, the psychiatric ward.
Btw, she had taken me to a doctor at my age of 10 for tremor--gave me some liquid med, then dropped the whole thing.
During the time in the '90s when I found out I had essential tremor, she asked if alcohol might be causing it. Yeah, right, like at my age of 10 I was boozing it up. LOL
After several days in the hospital of still no help, I made the mistake of reaching out to her over the phone. In tears, I told her of my despair, and appologized for crying. And she said, "That's because you're not well yet." WHAT?! Not well yet? What was that supposed to mean? I hadn't behaved irrationally, or talked upset around her, was as normal as could be.
Just that one episode of badly shaking in front of her and, in her mind--off to a psychiatric ward. No questioning if something was worrying me, etc. No comforting.......
Saw a doc personally twice over the next eleven days of wandering the hospital hall and going stir crazy, and was then released. I'd been given a few xrays, reflex tests, and no medication. I left shaking as badly as when I went in, plus in deeper despair.
Only through tremor discussion groups have I received true (emotional) help.
Posts: 478 | From: Wisconsin | Registered: Oct 2005
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