This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

#1408
Welcome Aboard Bonnie!

I'm happy that you found this site. I was diagnosed back in 1996 just after finishing nursing school. Needless to say, I could not continue in the profession very long as my tremors became more and more pronounced. I hope that you continue to be able to walk without problems and only have the tremors while standing. Most of us do have varying degrees of problems when walking; for instance, I can walk if I do it quickly. In fact, the faster the pace the better. But just strolling along, window shopping, etc. is not possible for me. As I said, we all have varying but similar symptoms and we all compare notes on meds, items that will assist us at home and just general pick-me-ups. OT seems to be a condition for which there is no specific medication and there is no research going on to find one. Some of us have tried laundry lists of meds, hoping that one of them will help the tremors; others of us have decided that they want no part of medications. You will find many postings browsing this forum which I hope will assist you.

I hope you will continue to follow the posts and the forums.


Stay well,
Kaylie
#1410
I am new to this forum but have been reading information and stories on your website for perhaps four years. Actually after reading the experiences of others I was sure OT was what I had. It took months to get an appointment with a neurologist and I did not tell him what I had found but waited for his diagnosis first. He could not believe that I had actually found out about OT on the internet. He referred me to the movement disorder center at the Toronto Western Hospital. It took quite a while to get an appointment there as well but I have been going every few months for about 3 years now. I am on Clonazepam - don't know if it helps much but the specialist at the clinic says I would notice a difference if I stopped taking it.
I feel that I cope most of the time in the daily routines of life and have not found it as dibilitating as some of the rest of you. I do walk 4 miles every morning and if I meet someone who wants to stop and chat I look for the nearest tree or utility pole. Lineups can be a problem and social situations where people are standing around in small groups chatting can be embarassing when I seem to be the only one who needs to sit down.
I have some very sight hand tremors but not that often and also my lips or chin will quiver at times.
This is the first time I have been into your site for several months and when I was at the clinic today the doctor there recommended that I take another look.
Pauline C, Ajax, Ontario, Canada
#1411
Welcome Pauline: I hope that you remain a member of our group. Many of us will tell you of our experiences with OT and how long it took to get an actual diagnosis. For some, it took a very long time, for others like myself, I happen to be "lucky" enough to get a diagnosis on my visit to a 2nd neurologist. I've been battling OT since 1996 (many of us longer than that) and I am taking Clonazapam. My curent neurologist has prescribed a laundry list of drugs, none of which have had any effect on the leg tremors; so I am back to Clonazapam (4 mgs daily). It doesn't take the tremors away; it just takes the edge off. Please read thru the postings on this forum. We as a group (333) are trying to get the word out about our debilitating condition. The neurologists (movement disorder specialists) are more geared to doing research on Parkinson's, but to date nothing has been found to help this condition. Please listen to the talks given by Dr. Matsumoto and Dr. Diego Torres-Russotto. You will find that when they describe the symptoms of OT you will say "that is me".

I hope that we will continue to see your postings on this forum. And, oh, if you have a chance let us know what city you are from. It's important to the forum so that if any studies are put together, we know where most of us are from.

Looking forward to hearing from you

Kaylie :)
#1422
My Handle is Cleancoal, real name Jack.

I was diagnosed as having ALS seven years ago. Having found this web site, my symtoms seem to resemble orthostatic tremors since I have haven't progressed beyond leg tremors. Reseaarching the Internet, I found the drug naltrexone (low dose), LDN, is recommended helpfull for ALS, Parkinson's, fibromyalgia, MS and other neurodegenerative diseases whose etiology is umknown. I tried Mirapex and Neurontin when first diagnosed seven years ago, but these drugs made me sick in the morning. Has anyone experienced the use of low dose naltrexone (LDN) for relief of orthostatic tremors. I have an appointment with my neurologist the middle of December to request a prescription to try this drug. Any information would be helpful.
#1426
Hello, Everyone! Just a quick intro, I was diagnosed with OT about 10 years ago. I had been to several doctors and nobody could figure out what was wrong. It is overwhelming to finally find others that know about OT. Until I found this sight I felt very alone. Years ago when I was diagnosed I couldn't find any info on the internet and sort of gave up, but for some reason I started looking again and wow, here you all are. I had seen some notes from gloria and e-mailed her. She responded and said I should share this information with all of you. I hope this information will help some of you.
Dear, Gloria!
I was just reading though your updates. I was diagnosed about 10 years ago with OT and it has definitely been an experience. I have discovered after two years of tremors, that my symptoms started after I got a flu shot. I also had a flu shot the next year and my symptom got worse. The third year when I went to get the shot they had a questionnaire to fill out and it said if you have any neurological disorder you shouldn't get the flu shot. It increases the neurological symptoms. They also told my friend, (her mom had MS) that she shouldn't get it for the same reasons. I don't know if you get flu shots, but since I quit getting them my symptoms have leveled off. Just something to check out.

Good luck!
Diana
#1427
Hi Diana! Welcome to the Forum. I read with interest the comments you made in your note to Gloria about flu shots and their relationship to neurological disorders. I'd be interested in knowing if you have ever brought this subject up to your neurologist and what he or she had to say. I, for one, have never heard of effects the flu shot can have on neurological disorders. I was diagnosed in 1996 and have been taking the flu shot for a number of years now, but I cannot say that it has made my tremors any worse. My neurologist has never told me not to take a flu shot; however, you can be assured that I will be asking him some questions when I see him in a few months.

Stay well
By JaneP
#1442
Hi All
My name is Jane and I live in Sydney, Australia. My husband insisted I visit my GP after we attended a cocktail party and I sat in the corner all night while friends stood and chatted. I thought I had a balance problem as I had problems standing still at my Pilates class. My GP referred me to a neurologist who dianosed me straight away and this was confirmed by a tremor test within a few weeks. I have resisted taking any medication and continue to work full time. I think I've had OT for years and that it has very gradually become more pronounced. I am 57 and have 2 adult sons still living at home! I cope at work and at home by sitting to dress, put on makeup, iron, and cook as much as possible. I lean - on anything solid nearby. Hanging washing on the line, standing in the shower, queuing in shops or at an airport all present somewhat of a challenge. My work involves a certain amount of standing and I cope by leaning on benches or a piece of equipment. When put in an awkward position, I tell people I'm a "bad stander" and need to sit down...a little humour goes a long way. I have recently lost weight and walk briskly 50 minutes each day - both of these factors I believe are helpful. I've been reading through some postings and can relate to all the issues I've read, but am determined to have a very positive outlook. Most of the time I forget that I have any problem at all....OT has not stopped me doing anything I want. It did get us to the top of the Empire State Building in NYC in 2006, avoiding a 4 hour queue!
My questions...There are lots of references to the drug Clonazepam - does it have any side effects? How does it help? ie, does it double or triple the time you can stand? I'm considering trying hypnosis. Has anyone tried this avenue of treatment? If so let me know your experiences.
#1443
Hello JaneP and welcome to the forum!

With reference to your question regarding Clonazepam, I have been taking this drug in different doses since 1996. It affects different people in different ways (guessing it might be the way each of us metabolizes it). I have gone as high as 8 mg/daily and I can tell you that was an extreme amount. I now take 4 mgs daily. When I first started this drug, it might have given me a little more steadiness, but now that my condition has worsened to the point where I can only stand a few seconds at a time before having to take a few steps and then quickly find somewhere to sit, I can uncategorically say that it does nothing for my tremors nor does it give any more standing time. The only side effect of Clonazepam (for me, at least) was that it makes me sleepy, so needless to say you must be extremely careful if you plan to do any driving. The ony thing I feel it does for me at this stage is to "take the edge off". In other words, if for some reason I delay or forget to take my dosage in the AM, I will immediately notice the difference.

As you "speak" with others in this forum, you will see that most of us have tried a laundry list of drugs. None of them seem to do anything for the tremors. At this point I would say that there aren't any drugs out there specifically for the treatment of Primary Orthostatic Tremor. Since I can no longer walk long distances for exercise purposes, my neurologist has recommended a stationary bike. So I now have a recumbent stationary bike I use every day to keep my legs from atrophying and also to help an ailing arthritic knee. I have a scooter which I use for long outings, but walk around at home and have stools (with backs) in almost every room. Sorry the news is not better.

All of us here on this forum are determined. We will not allow this condition to keep us from what we want to do. By communicating with one another, we pass along our ideas and experiences and we all keep each other's spirits up. I hope that we continue to hear from you.

Keep smiling :)

Kaylie
#1458
Hello to everyone. I haven't visited the site often since my diagnosis in 2000 because I was afraid to try medicine in case of side effects but I am happy to say that for nearly a year I have felt less pain and shaking since taking Primidone. It has to be made-up into liquid of 25mg/5ml and I buildt up the dose each week taking 1ml every night, the first week, then 2 ml each night for a week ... until I felt the effect now taking 8ml each night. I can still no longer stand for more than a couple of minutes and stressful situations a bad. Im accepting my condition better now and look for a place to sit earlier. Exercise and fresh air and having a laugh keep me going.
#1459
Dear Val: I’m so glad that you are now participating on the forum and that you have told us your experience with Primidone. You have arrived at the realization that all of the medications that we have available are not cures or make our symptoms go away, they just lessen them. Thanks too for giving the information on how you take and reached the dosage that you are taking. Perhaps this will help someone else who’s Dr. might suggest they try Primidone. As everyone knows I have been on gabapentin for 9 years and others using Clonazepam etc. Many people say they are afraid of the side effects of medications however experience has taught me the doses we are given are tolerable for most people and make our bane a little bit better to deal with.

Gloria
By Polly
#1460
Hi, my name is Polly, it is not me that has OT but my mother, she has no access to the internet. She has a very negative view and will not try anything new that may or may not help her. When she was first diagnosed she was sent to a Hospital in Essex, it was to see a man who was researching OT as it is still quite rare. She was there to have various tests and to have a cat scan. She discharges herself because "she felt like a guinea pig" which of course she was but only in the hope something more could be discovered about OT. My father is also disabled with Rhumatoid Arthritis and Parkinsons so mum still has to do things about the house (she has a cleaner). Dad is in respite care at the moment, but she is worrying about how she will cope when he comes home and the worrying aggrevates her condition. Sorry I am running on. I could sound off a bit more, but I had better not.
#1461
Polly :
I’m sorry that you are having such a difficult time trying to help your mother but it is easy to understand why she has frustrations with her situation. Most OT people would to happy to find a neurologist who was doing research on OT however it depends, of course, on what type of research and the risks involved. It would be very helpful if your mother had access to the internet because she could read the website information and have a better understanding of OT as well as the opportunity to go onto the Forum and communicate with other OT friends who have had the experience of coping with the many difficult life experiences that most people have to deal with but with the handicap of living with OT. We have learned coping skills that we share and support to each other. Perhaps you could printout parts of the website for her to read for starters. Please do not feel that you were venting too much, we are here to support family and friends as well. Take care, Gloria
#1486
Hi all,

My name is Pamela, I am in my late 40's and live in New Hampshire. Recently, I was finally "officially" diagnosed with OT, and am now on a low dose of clonazepam.I I learned about OT on the web, but no one seemed to understand or believe it. I had been explaining my symptoms to doctors for years. Many contributed the tremors to 2 serious car accidents that I had had, and a comprised immune system .

Having been on the med. for about 2 weeks I think it is helping a little. But I have noticed it is making me very lethargic and I have absolutely no motivation to do things that I want and need to do. Today, has been the worst of the days.

My main concern (and fear) is that this condition is going to get worse over time. I do a lot of traveling and find that is getting harder; and socializing can be uncomfortable when all I am thinking about is trying not to lock my knees and how to handle a plate of food and a glass of wine and maintain my balance all at the same time.

I would love to find out how people are coping. Thanks, Pamela
#1487
Welcome to the forum Pamela,

It's hard to say how OT will affect you in the future. When you start reading the posts you will see that OT affects each of us differently. Most of us have been told that it will certainly not disappear and that we have to find skills to help us cope with this condition. At this point in time there is no research being conducted on OT; so therefore we do not expect a cure. I can speak for myself. I was diagnosed with OT in 1996 as I was finishing up Nursing School. At first I thought it was the stresses of returning to school at a late age and starting a new profession. But when the symptoms did not pass, I decided to take the "bull by the horns" and see a neurologist. My condition was diagnosed by the 2nd doctor I saw. He had just finished reading a medical journal article on the condition and when he examined me, knew exactly what my problem was. As you will read the many posts on this forum, for others it took years before they had a diagnosis.

I have been taking Clonazapam since the inception of my tremors. At one point I was taking 8 mgs/daily. This proved to be too high a dose (I was working at the time) and in order to combat the sleepiness, I took Provigil. I am now down to 4 mgs daily. My tremors have become worse and I was forced to stop working in January, 2008. I am now on Social Security disability, and effectively have "retired" from my position.

Please continue to read our posts. We have much to share and compare (medications, aids to assist us, coping mechanisms) which help to keep our spirits up.

Keep smiling :)

Kaylie
By Rose
#1529
Hello,

I was diagnosed with OT a week ago. It happend rather quickly compared to many of the stories I've read here. So I feel very blessed. :P I've had a vertigo problem for a 18 mos. and thought the slight tremors in my leg were part of the balance problem. The last month the tremors worsened until I had some severe ones and was fortunate to have one in the ENT's office. He became my advocate and sent me to a neurologist who diagnosed me on the first visit. Of course, having a tremor in his office helped his diagnosis I'm sure :lol:

I live in St. Louis; am 60 yrs old and thought I was very healthy. Reading some of your stories is frightening however. I don't really know what to expect and how fast it will happen. Right now I only have occasional tremors 3-5 times a day. The doctor prescribed Gabapentin which I am now taking without any severe side effects so far.

I look forward to the support of this group and would like to be kept informed about the "conference" in Omaha.

Rose
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