I totally get the downstairs problem. A lot of times I get the shakes all over when I try to navigate the stairs. I’ve been known to stagger at times randomly. In fact I broke our kitchen table when I lost my balance and fell onto it a few years ago. I really try to hide my Essential Tremor as much as possible because I get tired of the "Do you know you're shaking" comments but it is getting harder to hide. Pouring a pitcher can be an event with me and I can't really build computers anymore because of the fine parts. By trade, I'm a Graphic Designer but have been laid off and out of work for 2 years so I have been playing the full time Dad to my 3 boys.
So far I’ve had a friend on the hockey team suggest I see a naturopath for his or her take on what could help. I was interested by the forum user who used acupuncture. I did acupuncture for a brief period of time for an unrelated issue about 7 years back and had a positive experience. It just became expensive. Have you ever heard of Chiropractic or Deep Muscle Tissue work helping out? I have a great chiropractor, he just gets expensive because it is not covered by insurance. Unfortunately I saw him today and he had never heard of OT or even Essential Tremors. Not a good sign.
Originally my primary told me I was too inactive and that’s what caused it for two and a half years until I had a significant episode in his office one day when I was seeing him for something else. I immediately sat down and he had me stick out my leg and it was shaking bad. Without hesitation he said “You need to see a neurologist. Something isn’t right.” The first neurologist I went to said I was having a drug interaction problem and gave me a Parkinson’s drug that blurred my vision so bad I couldn’t read. 2 months later when I saw him again, and had stopped using the drug, he literally said “ I don’t know what’s wrong with you. Come back and see me in a year if it gets worse.” Obviously I read him the riot act after a stupid comment like that and told him he was fired and I was getting a second opinion. At least the new doctor knew what was going on.
As for the arm tremors, like I said it could be more related to my Essential Tremors. It's just that they seem more dramatic than my normal shaking and again it doesn't always happen. Gloria suggested my episodes are probably more sporadic because I'm still in the early stages of OT. It's all pretty scary though. The new neurologist gave me a trial prescription for Clonazepram (sp) to try out on game days and see what it's like. Just 10 pills for now. He said I can get more if it seems to help.
BTW I'm from Gresham, Oregon which is basically a suburb of Portland. I couldn't figure out how to edit my profile after the fact to add that for users information. Thanks so much for your reply Betty.
New to the forum? post a quick introduction
Moderator: gloria
Re: New to the forum? post a quick introduction
Mark: In answer to your question on how to edit your profile to add your location, scroll down the Forum page to "How to use the Forum,solutions & tips" click on first topic: How & why to add to your location. Thanks for posting on the website as I suggested you will have better understanding of how others are coping with our disorder. Your OT Partner, Gloria
PS: login first
PS: login first
Re: New to the forum? post a quick introduction
After 2 years of many tests, I was recently diagnosed with OT at Mayo Clinic. Reading this website is comforting that others have similar experiences. I have just started taking clonazepam with a slight improvement, but will be contacting my primary care physician next week. I have an appointment scheduled with a physical therapist in August. I've been taking pilates classes for about 18 months. It's terrific. I use the equipment which means that I'm mostly lying down or sitting. My body is strong and flexible even for a 64 year old. I'm glad that I'm retired. Working could be a problem. I'm interested in trying the walking that I've seen recommended several times.
Looking forward to keeping up with your comments, learning about upcoming meetings, trying various drugs, etc.
This website was recommended to me at Mayo once the diagnosis was made. The best to all of you.
Lanita
Looking forward to keeping up with your comments, learning about upcoming meetings, trying various drugs, etc.
This website was recommended to me at Mayo once the diagnosis was made. The best to all of you.
Lanita
Re: New to the forum? post a quick introduction
Hi everyone, I can't tell you all how excited I am to find this site. I have also been to a number of Drs. and they don't seem to know what I have or what to do for me. When explaining my systoms they just look at me dumb founded. When I started doing some research myself I found this site. And eureka, I knew this was it. I can totally relate to the anxiety of cocktail partys, running into friends on the street, or even just shopping. Can't stand still long enough to look at things, or talk to people. Can't stand long enough to address a golf ball, to hit it without my legs going crazy, so annoying, and embarassing. I was wondering if any of you out there have it in your hands also, as I do? Well thank you for letting me vent, and thank you Gloria for starting this site. Going to dinner dance tonite, really dreading it. But don't want to let this control my life.
Angela
Angela
Re: New to the forum? post a quick introduction
Hi Angela: Welcome to our forum. I understand the frustrations you've had trying to get a diagnosis. I went through the same thing, with each doctor I saw looking at me like I had 3 heads. That was almost 16 years ago. Fortunately, I did see a doctor who had just finished reading an article in one of his neurology journals; it just happened to be about all of the symptoms I described to him and lo and behold, it had a name. Still not much is known about OT; hopefully one day they will have meds that will control the tremors (maybe not in my lifetime), but for now we on the forum band together, do our own research, find out about aids that will help us, exchange thoughts, ideas, what meds we are taking, etc., etc. I kow this gets us through each and every day. Keep smiling, Kaylie 
Re: New to the forum? post a quick introduction
Hi Kaylie,
Thanks for responding. I know this site is going to be such a blessing for me. So hard to explain to people, what I have. Like many others have said, I look very healthy except for my shaking, in hands and legs, and feels like its my whole body when I get into stressful situation at work etc. Have not tried any meds yet. Really don't like to take medications for anything if at all possible. Have always eaten organic, taken vitamins, worked out, see a chiropactor regularlly and tried to stay healthy and then this happens. Just don't understand it. But I'm trying not to be depressed or negative about it. I keep thinking at 60 I have been very lucky to have been so healthy all these years! Have acutally had quite a few good laughs about it with my sisters!!!! I live in Michigan if there is anyone in Michigan would love to talk to them. Hope you are haveing a good day!
Blessings, Angela
Thanks for responding. I know this site is going to be such a blessing for me. So hard to explain to people, what I have. Like many others have said, I look very healthy except for my shaking, in hands and legs, and feels like its my whole body when I get into stressful situation at work etc. Have not tried any meds yet. Really don't like to take medications for anything if at all possible. Have always eaten organic, taken vitamins, worked out, see a chiropactor regularlly and tried to stay healthy and then this happens. Just don't understand it. But I'm trying not to be depressed or negative about it. I keep thinking at 60 I have been very lucky to have been so healthy all these years! Have acutally had quite a few good laughs about it with my sisters!!!! I live in Michigan if there is anyone in Michigan would love to talk to them. Hope you are haveing a good day!
Blessings, Angela
Re: New to the forum? post a quick introduction
Hi Lanita, Angela and Kaylie:
First to Lanita: You were lucky to be diagnosed with OT so quickly; but since you went to Mayo Clinic, they are one of the few who are familiar with OT. Also, finding this site, you will find so much support and everyone will try to be as helpful as possible. Do try to stay active, that is so impotant to all of us.
I have not tried pilates yet, but would like to find a class where I could sit and participate, since standing isn't an option. I do sit on my floor at home and do stretching excercises so my muscles won't become too tight. I still need work in that area; and am not as flexable as I used to be!
However, I just had my annual physical and was told EVERYTHING was excellent and if I didn't have OT, I would be able to do all the things I did when I was 40! Oh well! At least most everything is working and healthy.
Angela: I KNOW how excited you are to have found this site; I felt the same way when I finally had a name for what I have. I immediately went to my computer and searched for Orthostatic Tremors and lo-and-behold....up came this wonderful site. I think everyone who finds it feels the same way.
So you are also a golfer; do you still play? I was an avid golfer, but am no longer able to play, however, that doesn't mean the same thing will happen to you. If you have read any of the things written by Anne in Sweden, she is still able to play golf, so I hope you will play the rest of your life.
You questioned if anyone has tremors in their hands ~ I do ~ I have Essential Tremors in my hands.
It is difficult for me to do tasks which require a steady hand; and the harder I try to steady them, the worse they get. Trying to write something is very difficult and my handwriting is difficult for me to read, so I type most things now.
How did it go with your dinner/dance? I hope it wasn't as bad as you anticipated. My husband and I used to dance a lot, but....again, another thing I am no longer able to do. However, I still try, but it is exhausting to me.
Kaylie: I, too, understand the frustrations trying to get a diagnosis. It took me 14 years and eight (8) neurologists before I found a name for what I/we have. When I had a name, I checked my computer and found Gloria's site ~ what a thrill to find there were others with the same condition as I. I say 'thrill' because I knew I was not alone, but saddened because we all have this life altering condition. However, we all try to stay positive, do what we can to keep ourselves as healthy and active as possible ~ as long as possible.
I think all of us who have found this wonderful site; have Gloria and her son to thank. I have had the pleasure of meeting Gloria several times as well as many others who have found this site. It has become an extended family for me, and I am so thankful.
Everyone keep a positive attitude, and keep writing...
Betty
First to Lanita: You were lucky to be diagnosed with OT so quickly; but since you went to Mayo Clinic, they are one of the few who are familiar with OT. Also, finding this site, you will find so much support and everyone will try to be as helpful as possible. Do try to stay active, that is so impotant to all of us.
I have not tried pilates yet, but would like to find a class where I could sit and participate, since standing isn't an option. I do sit on my floor at home and do stretching excercises so my muscles won't become too tight. I still need work in that area; and am not as flexable as I used to be!
However, I just had my annual physical and was told EVERYTHING was excellent and if I didn't have OT, I would be able to do all the things I did when I was 40! Oh well! At least most everything is working and healthy.
Angela: I KNOW how excited you are to have found this site; I felt the same way when I finally had a name for what I have. I immediately went to my computer and searched for Orthostatic Tremors and lo-and-behold....up came this wonderful site. I think everyone who finds it feels the same way.
So you are also a golfer; do you still play? I was an avid golfer, but am no longer able to play, however, that doesn't mean the same thing will happen to you. If you have read any of the things written by Anne in Sweden, she is still able to play golf, so I hope you will play the rest of your life.
You questioned if anyone has tremors in their hands ~ I do ~ I have Essential Tremors in my hands.
It is difficult for me to do tasks which require a steady hand; and the harder I try to steady them, the worse they get. Trying to write something is very difficult and my handwriting is difficult for me to read, so I type most things now.
How did it go with your dinner/dance? I hope it wasn't as bad as you anticipated. My husband and I used to dance a lot, but....again, another thing I am no longer able to do. However, I still try, but it is exhausting to me.
Kaylie: I, too, understand the frustrations trying to get a diagnosis. It took me 14 years and eight (8) neurologists before I found a name for what I/we have. When I had a name, I checked my computer and found Gloria's site ~ what a thrill to find there were others with the same condition as I. I say 'thrill' because I knew I was not alone, but saddened because we all have this life altering condition. However, we all try to stay positive, do what we can to keep ourselves as healthy and active as possible ~ as long as possible.
I think all of us who have found this wonderful site; have Gloria and her son to thank. I have had the pleasure of meeting Gloria several times as well as many others who have found this site. It has become an extended family for me, and I am so thankful.
Everyone keep a positive attitude, and keep writing...
Betty
Re: New to the forum? post a quick introduction
I've been spending hours and hours on this site for the past week or so. I am not officially diagnoed with OT yet, but everything fits, I have an appointment with my third neurologist at the end of Aug, 2011.
I'm 55 and in the Portland, Oregon area.
The first significant symptoms I can remember were in about 1997; standing in line at the grocery store. I chalked my shaking legs up to tremendous stress and a severe lack of sleep. I was hiding from a domestic violence situation, not sleeping at all at night and in hiding.
Since then, the pattern has increased over time, my primary reasons for going to a neurologist over the years has been for migraines. I mention the shakes and I couldn't demonstrate it for them because I hadn't put the standing issue in the equation yet. The doc would ask me to hold out my hands (sitting) and they were steady, they would say I don't see any tremor and I couldn't argue with them, so I just kept dealing with the "I must be crazy" as I consistantly kept searching for seats, trembling and feeling panicky about needing to sit.
Now, I have noticed a significant increase in the shakey stuff in the past few months. I have started directing a chorus, and that requires me to stand. I do just fine as long as I pace and keep moving, which is ok during practices, but does not work for performing. Our first performance was only once song and I was shaking so hard I felt like I was literally fighting to not only stay upright, but stay conscious. I covered my symptoms well, but would not have been able to for even one more minute.
Since that experience was so clear to me, I've noticed a much stronger and consistent tremor. Now I can demonstrate it reliably to anyone, at any time. I feel less crazy, because anyone can feel and sometimes see me trembling. Sort of a relief that I'm not crazy, yet I feel pretty bummed that the symptoms have increased so dramatically so suddenly. I'm hoping this is just a passing phase and will calm down to something more livable.
I'm currently only on a very low dosage of a beta blocker and Imitrex as needed for migraines, nothing for the OT as it is sitll undiagnosed. I have been focusing on using stools for sitting, and I do use a white cane (I'm legally blind) so the cane is somewhat helpful for stability when I need it.
I do feel more stable when I walk quickly, shakey when I walk slowly or going down stairs. My tremors are almost instant upon standing. I also have sort of a weaving balance thing that happens if I try to stand with my feet together. I compensate by standing with my feet apart and I tend to walk that way too, and now I'm noticing my left hip joint is twinging with pain more than it used to.
Thank you all for being here, I've been living with this condition for so long, it's part of my life, yet I do feel better knowing I have some company now. I'm looking forward to exchanging ideas and results from the various things we learn from our docs, each other and our own life experiences.
I work part time from home, I cannot even imagine trying to work full time outside of my home. I get very tired just living my relatively quiet life.
Thank you all for your valuable input here, and I hope to connect further as we make this journey together.
Marlana
I'm 55 and in the Portland, Oregon area.
The first significant symptoms I can remember were in about 1997; standing in line at the grocery store. I chalked my shaking legs up to tremendous stress and a severe lack of sleep. I was hiding from a domestic violence situation, not sleeping at all at night and in hiding.
Since then, the pattern has increased over time, my primary reasons for going to a neurologist over the years has been for migraines. I mention the shakes and I couldn't demonstrate it for them because I hadn't put the standing issue in the equation yet. The doc would ask me to hold out my hands (sitting) and they were steady, they would say I don't see any tremor and I couldn't argue with them, so I just kept dealing with the "I must be crazy" as I consistantly kept searching for seats, trembling and feeling panicky about needing to sit.
Now, I have noticed a significant increase in the shakey stuff in the past few months. I have started directing a chorus, and that requires me to stand. I do just fine as long as I pace and keep moving, which is ok during practices, but does not work for performing. Our first performance was only once song and I was shaking so hard I felt like I was literally fighting to not only stay upright, but stay conscious. I covered my symptoms well, but would not have been able to for even one more minute.
Since that experience was so clear to me, I've noticed a much stronger and consistent tremor. Now I can demonstrate it reliably to anyone, at any time. I feel less crazy, because anyone can feel and sometimes see me trembling. Sort of a relief that I'm not crazy, yet I feel pretty bummed that the symptoms have increased so dramatically so suddenly. I'm hoping this is just a passing phase and will calm down to something more livable.
I'm currently only on a very low dosage of a beta blocker and Imitrex as needed for migraines, nothing for the OT as it is sitll undiagnosed. I have been focusing on using stools for sitting, and I do use a white cane (I'm legally blind) so the cane is somewhat helpful for stability when I need it.
I do feel more stable when I walk quickly, shakey when I walk slowly or going down stairs. My tremors are almost instant upon standing. I also have sort of a weaving balance thing that happens if I try to stand with my feet together. I compensate by standing with my feet apart and I tend to walk that way too, and now I'm noticing my left hip joint is twinging with pain more than it used to.
Thank you all for being here, I've been living with this condition for so long, it's part of my life, yet I do feel better knowing I have some company now. I'm looking forward to exchanging ideas and results from the various things we learn from our docs, each other and our own life experiences.
I work part time from home, I cannot even imagine trying to work full time outside of my home. I get very tired just living my relatively quiet life.
Thank you all for your valuable input here, and I hope to connect further as we make this journey together.
Marlana
Re: New to the forum? post a quick introduction
Welcome Mariana, the symptoms you describe sound exactly like mine; I can stand about 7 seconds before I have to find a place to sit. I don't have hand tremors and many of us OT's do not suffer hand tremors. I find, however, that when I walk, even a short distance, I have shortness of breath and have to immediately find a seat. I believe that I am so concentrated on where I'm trying to get to that I don't concentrate enough on breathing deeply. The result is a rise in my blood pressure. Of course the stress that goes along with this condition contributes as well. I was diagnosed 16 yrs ago by a neurologist specializing in movement disorders. Many others have been diagnosed by neurologists with an EEG test which will measure the tremors in your limbs. Try to find a neurologist who is a specialist in movement disorders. I hope that you will finally get a diagnosis. Continue to stay in touch with all of us on the forum
Kaylie
Kaylie
Re: New to the forum? post a quick introduction
Mariana, I too, would like to welcome you to this wonderful site; you will find a lot of information here and soooo many friends! However, I am so sorry to hear you seem to suffer from OT. As Kaylie mentioned, you should try to find a neurologist who is a specialist in movement disorders and will test you using the EEG test. That will give you a DEFINITE diagnosis!
I was diagnosed in 2003, after trying to find what was happening to me for over 14 years. I went to eight neurologists before finding one who specialized in movements disorders in New York City.
Because none of those I saw had ever seen or heard of OT, I was told I needed a psychiatrist. That really upset me! I knew it was in my head, just in that way.
Unlike Kaylie, I do suffer from hand tremors, which started within the past few years. I am also very clumsy now ~ I have never been clumsy in my life ~ but because of the overall body tremors and essential tremors (hand tremors); I have to be very careful.
My standing time is measured in seconds; probably less than one second before my tremors are at full force. Do you find you must 'grip' the floor with your toes in order to stand? I do. Also, as with most of us, as soon as I walk into a room, I look for a place to sit.
Again, as Kaylie mentioned, when walking, I also become short of breath. I think this is because it takes soooo much energy just to maintain a forward gait; our breathing becomes labored and I become exhausted. I don't know if either of you, or anyone else on the forum, experiences this. I would be interested to know if anyone else suffers from constant fatigue.
Mariana, do continue to stay in touch with the forum; it has great information and people who will try to help. You might find someone from the Portland, Oregon area, or an area nearby, on this site. If so, perhaps you could get together and 'talk'. It makes such a difference to be able to meet and talk to someone else who understands exactly what you are experiencing.
Good luck and keep the faith...
Betty
I was diagnosed in 2003, after trying to find what was happening to me for over 14 years. I went to eight neurologists before finding one who specialized in movements disorders in New York City.
Because none of those I saw had ever seen or heard of OT, I was told I needed a psychiatrist. That really upset me! I knew it was in my head, just in that way.
Unlike Kaylie, I do suffer from hand tremors, which started within the past few years. I am also very clumsy now ~ I have never been clumsy in my life ~ but because of the overall body tremors and essential tremors (hand tremors); I have to be very careful.
My standing time is measured in seconds; probably less than one second before my tremors are at full force. Do you find you must 'grip' the floor with your toes in order to stand? I do. Also, as with most of us, as soon as I walk into a room, I look for a place to sit.
Again, as Kaylie mentioned, when walking, I also become short of breath. I think this is because it takes soooo much energy just to maintain a forward gait; our breathing becomes labored and I become exhausted. I don't know if either of you, or anyone else on the forum, experiences this. I would be interested to know if anyone else suffers from constant fatigue.
Mariana, do continue to stay in touch with the forum; it has great information and people who will try to help. You might find someone from the Portland, Oregon area, or an area nearby, on this site. If so, perhaps you could get together and 'talk'. It makes such a difference to be able to meet and talk to someone else who understands exactly what you are experiencing.
Good luck and keep the faith...
Betty
Re: New to the forum? post a quick introduction
Thanks for the warm welcome from Betty and Kalie.
Yes, I do go barefoot as much as possible so I can grip the floor with my toes. I also feel more grounded with no shoes on.
I do feel tired alot, and generally just don't feel good much of the time. I have migraines, and I'm also leagally blind, andI suspect some other types of balance and dizziness issues. I have just gotten used to feeling wiped out. If I have to walk in small spaces, or carry something so that I'm not free to grab a wall, as in going on stage to perform, navigating cords and musical instruments, I get very tense, and I will hold my breath without realizing it. Then I finally get to my stool and find that I'm immensely relieved and breathing faster for a few breaths, my hands will sweat with the extra stress. Then I get settled on my stool and I feel calm and relaxed. At least stage fright is nothing compared to all the jitters just getting there. (grin) I'm now taking over the Stage manager position for our monthly open mics so I will have better control over keeping the stage clear, not only for me but for others who have mobility issues in our 55+ community.
I have sent Mark, who lives about 30 miles from me, an email so we may be able to exchange info at some point.
One question I have that I have not seen much written about here: I have noticed a sharp increase in symptoms in just the past two or three months, though I've had the symptoms since about 1997, they have mostly increased at a fairly gentle and constant degree. Has anyone ever noticed that the symptoms get suddenly worse? Do they every go back to being less, or is it that once they get worse you stay at that level and get even worse?
Thanks gor all your support.
Marlana
Yes, I do go barefoot as much as possible so I can grip the floor with my toes. I also feel more grounded with no shoes on.
I do feel tired alot, and generally just don't feel good much of the time. I have migraines, and I'm also leagally blind, andI suspect some other types of balance and dizziness issues. I have just gotten used to feeling wiped out. If I have to walk in small spaces, or carry something so that I'm not free to grab a wall, as in going on stage to perform, navigating cords and musical instruments, I get very tense, and I will hold my breath without realizing it. Then I finally get to my stool and find that I'm immensely relieved and breathing faster for a few breaths, my hands will sweat with the extra stress. Then I get settled on my stool and I feel calm and relaxed. At least stage fright is nothing compared to all the jitters just getting there. (grin) I'm now taking over the Stage manager position for our monthly open mics so I will have better control over keeping the stage clear, not only for me but for others who have mobility issues in our 55+ community.
I have sent Mark, who lives about 30 miles from me, an email so we may be able to exchange info at some point.
One question I have that I have not seen much written about here: I have noticed a sharp increase in symptoms in just the past two or three months, though I've had the symptoms since about 1997, they have mostly increased at a fairly gentle and constant degree. Has anyone ever noticed that the symptoms get suddenly worse? Do they every go back to being less, or is it that once they get worse you stay at that level and get even worse?
Thanks gor all your support.
Marlana
Re: New to the forum? post a quick introduction
Hi
Yes i have noticed a big difference in my tremors.
Worse that they were a few months ago.
When i get up from a sitting my tremors seem to go much faster.
It dosen't happen all the time but too often lately.
I wonder if anyone else has this happen
Stella
Yes i have noticed a big difference in my tremors.
Worse that they were a few months ago.
When i get up from a sitting my tremors seem to go much faster.
It dosen't happen all the time but too often lately.
I wonder if anyone else has this happen
Stella
Re: New to the forum? post a quick introduction
Stella:
It happens to me sometimes and I believe that knowing that when we get up we wlll go through the repeating OT cycle of trying to" fight" standing on our legs. We are mentally exhausted dealing with OT in our lives. This happens to me more often if I have been neglectful in doing stretching exercises morning and night and walking briskly everyday. I believe that our misdirected message leg muscles atrophy rapidly. Best to all, Gloria
It happens to me sometimes and I believe that knowing that when we get up we wlll go through the repeating OT cycle of trying to" fight" standing on our legs. We are mentally exhausted dealing with OT in our lives. This happens to me more often if I have been neglectful in doing stretching exercises morning and night and walking briskly everyday. I believe that our misdirected message leg muscles atrophy rapidly. Best to all, Gloria
Re: New to the forum? post a quick introduction
Hi Marlana,
I felt I should address some of the issues you stated in your post.
First, I don't go barefoot too often any more, but DO grip with my toes IN my shoes. This often will lead to cramping in my feet and legs. I have found tonic water does help. It has quinine in it, and we keep a bottle in the refrigerator at all times.
I have found if I have cramping in feet and legs, I can drink a juice glass of tonic water (and add a twist of lime) and it usually relieves the cramping very quickly. Sometimes I do have to drink a second glass if they are really bad.
You mentioned you have migraines; I had them years ago, but haven't had one in many years...thank goodness! You also said you are legally blind, which makes dealing with OT much more of a problem for you than the rest of us. I presume you know OT does have its' own balance problems, but the dizziness issues are another problem. Do you have vertigo? Have you been checked for that? I also have vertigo, so I can understand your difficulty balancing.
I think we all understand your difficulty navigating through tight spaces; none of us find that an easy task, and we don't have a problem with our sight.
You must be a musician of some sort, good for you for not allowing any of your issues to stop you from doing something you love.
I am happy you found Mark; I do hope the two of you will be able to get together and talk. If either or both of you are married, or have a 'significant other', it does help them to understand what you experience on a daily basis.
One last thing....you asked:
"One question I have that I have not seen much written about here: I have noticed a sharp increase in symptoms in just the past two or three months, though I've had the symptoms since about 1997, they have mostly increased at a fairly gentle and constant degree. Has anyone ever noticed that the symptoms get suddenly worse? Do they every go back to being less, or is it that once they get worse you stay at that level and get even worse?"
I can only speak for myself, but perhaps others will tell you what they have/are experiencing. As for myself, I found when I first was told I have OT, my tremors were pretty severe, but I was still able to do the things I had always done. I was an avid golfer and continued to play golf until 2005; then I had to give that up. Over the years, I have found my tremors have gotten worse, and
for me, they continue to worsen. Perhaps I am not the 'norm'; but don't stop doing the things you love; continue as long as you can!
Keep a positive attitude and enjoy your life each day.....
Betty
I felt I should address some of the issues you stated in your post.
First, I don't go barefoot too often any more, but DO grip with my toes IN my shoes. This often will lead to cramping in my feet and legs. I have found tonic water does help. It has quinine in it, and we keep a bottle in the refrigerator at all times.
I have found if I have cramping in feet and legs, I can drink a juice glass of tonic water (and add a twist of lime) and it usually relieves the cramping very quickly. Sometimes I do have to drink a second glass if they are really bad.
You mentioned you have migraines; I had them years ago, but haven't had one in many years...thank goodness! You also said you are legally blind, which makes dealing with OT much more of a problem for you than the rest of us. I presume you know OT does have its' own balance problems, but the dizziness issues are another problem. Do you have vertigo? Have you been checked for that? I also have vertigo, so I can understand your difficulty balancing.
I think we all understand your difficulty navigating through tight spaces; none of us find that an easy task, and we don't have a problem with our sight.
You must be a musician of some sort, good for you for not allowing any of your issues to stop you from doing something you love.
I am happy you found Mark; I do hope the two of you will be able to get together and talk. If either or both of you are married, or have a 'significant other', it does help them to understand what you experience on a daily basis.
One last thing....you asked:
"One question I have that I have not seen much written about here: I have noticed a sharp increase in symptoms in just the past two or three months, though I've had the symptoms since about 1997, they have mostly increased at a fairly gentle and constant degree. Has anyone ever noticed that the symptoms get suddenly worse? Do they every go back to being less, or is it that once they get worse you stay at that level and get even worse?"
I can only speak for myself, but perhaps others will tell you what they have/are experiencing. As for myself, I found when I first was told I have OT, my tremors were pretty severe, but I was still able to do the things I had always done. I was an avid golfer and continued to play golf until 2005; then I had to give that up. Over the years, I have found my tremors have gotten worse, and
for me, they continue to worsen. Perhaps I am not the 'norm'; but don't stop doing the things you love; continue as long as you can!
Keep a positive attitude and enjoy your life each day.....
Betty
Re: New to the forum? post a quick introduction
Hello,
My name is Joye. I just turned 60 and was diagnosed with OT last Thursday. Actually I knew something was wrong with my legs since the 1986 or so. I worked as a Corporate Director of marketing and did lots of events, meetings,trade shows and travel. Early on I knew i could not stand long in one place as I am also bipolar (diagnosed in 1980), I thought is was my meds somehow. So I became an expert at making sure their were stools in trade booths, at the speaker's podium and did alot of casual table edge sitting. I still cringe when I recall not being ing control of environments I was working in and clinging to walls or in my last job actually sitting on the floor and getting called "highly unprofessional" for having done that. I recall as well crumbling in my in a crowd pushing out of the theatre, clinging to a piano when standing up for my brother-in-law's wedding and inappropriately sitting on Mary's manger straw in the middle of a church play. So many moments of my life that would have been different if I only could have been able to tell someone I really did have a physical condition that wouldn't allow me to hold the board still while my husband was sawing it. My psychiatrist gave me xanax and then inderal...both which helped for short periods of time. It finally got the best of me. I went to a neuorlogist and he told me it was Restless Leg and wanted me to take Requip but added it would make me hallucinate. I said no then two weeks later was carrying a computer tower down the steps when my legs began giving out. I braced my back against the stairwall and held firm until my legs rhytms began bucking and I knew I had to take a step. i missed that last step and lay on the floor 40 minutes before help came. I was in the hospital 2 days with a broken fubula and broken tibia that require suregy with two plates and 13 screws. Home less then a week, I feel again tried to hop to the bathroom, rug-burning my face and ended up in an ambulance again to go back to the hospital for another CAT scan. So after many many calls for another specialist, I got a diagnosis of primary othrostatic tremor, benign essential tremor and peripheral neuopathy. I've been reading and learning here and am grateful to find people who understand. Thank you all for being here. Joye
My name is Joye. I just turned 60 and was diagnosed with OT last Thursday. Actually I knew something was wrong with my legs since the 1986 or so. I worked as a Corporate Director of marketing and did lots of events, meetings,trade shows and travel. Early on I knew i could not stand long in one place as I am also bipolar (diagnosed in 1980), I thought is was my meds somehow. So I became an expert at making sure their were stools in trade booths, at the speaker's podium and did alot of casual table edge sitting. I still cringe when I recall not being ing control of environments I was working in and clinging to walls or in my last job actually sitting on the floor and getting called "highly unprofessional" for having done that. I recall as well crumbling in my in a crowd pushing out of the theatre, clinging to a piano when standing up for my brother-in-law's wedding and inappropriately sitting on Mary's manger straw in the middle of a church play. So many moments of my life that would have been different if I only could have been able to tell someone I really did have a physical condition that wouldn't allow me to hold the board still while my husband was sawing it. My psychiatrist gave me xanax and then inderal...both which helped for short periods of time. It finally got the best of me. I went to a neuorlogist and he told me it was Restless Leg and wanted me to take Requip but added it would make me hallucinate. I said no then two weeks later was carrying a computer tower down the steps when my legs began giving out. I braced my back against the stairwall and held firm until my legs rhytms began bucking and I knew I had to take a step. i missed that last step and lay on the floor 40 minutes before help came. I was in the hospital 2 days with a broken fubula and broken tibia that require suregy with two plates and 13 screws. Home less then a week, I feel again tried to hop to the bathroom, rug-burning my face and ended up in an ambulance again to go back to the hospital for another CAT scan. So after many many calls for another specialist, I got a diagnosis of primary othrostatic tremor, benign essential tremor and peripheral neuopathy. I've been reading and learning here and am grateful to find people who understand. Thank you all for being here. Joye