[gloria]

Introductions and Greetings:

There have been quite a few new people registering and it might be nice to hear from you in terms of a quick introduction. It can be as much or as little information as you would like. And for the veterans of this site this may be a good time to re-introduce yourself.

best regards,

Gloria

[Eleanor W]

I have written a couple of letters to the orthostatic tremor website over the past 5 years and have responses from at least half a dozen of you. I also have had a personal connection with Gloria. My OT's are the bane of my existance. I would be interested in hearing if there are any new medications out there and how the rest of you cope. I'm listening!! Eleanor

[Betty]

Hello everyone!

To introduce myself, for those who do not know me, my name is Betty and I live in Florida. I found Gloria's site after finally being diagnosed with OT in 2003, after searching for almost 15 years, and having seen EIGHT neurologists.

After I had a name for my condition ~ I went online and started searching; I found Gloria's site and was so happy to find there are so many others out there, just like me. Not that I am happy you have OT; just to know I am not alone! I also have ET and Positional Vertigo ~ quite a challenging combination! Every day I learn different ways of coping with difficult situations. It is a matter of "sharpening" ones skills.

I have made friends with several women thanks to this site. It is good to be able to talk/write about what we are experiencing and KNOW someone else understands exactly what you mean.

I have had the pleasure and priviledge of meeting, in person, Gloria as well as Harriet and Patty; I hope one day to perhaps be able to meet more of you.

Again, Gloria ~ thank you for putting us in touch with other OT friends all over the world! We may be "rare" but we are not alone!

Betty

[Margie]

Hi again to Gloria and a huge THANK YOU to her for providing this forum for us to exchange OT stories.

OT is such a disabiling condition and the level of ignorance, even in the medical community, continues to surprise and dismay me.

WE NEED TO GET THE WORD OUT!

My worst time with OT was not knowing why my body was acting in such a strange manner. When I was finally diagnosed I was over the moon with joy. I was not crazy. I did not have some weird phobia. I had OT. This was after years of being fobbed off as a 'desperate housewife' by my Dr and accused of being an alcoholic by a family member

I still find myself feeling awkward when explaining OT to others. I also have severe double major scoliosis, complicated by arthritis and osteoporosis (I was late when the big guy upstairs was handing out spare parts, so I was relegated to the end of the line, only to find they had run out of the manufacturers labeled goods and had to settle for the generic!) The funny thing is, I find having these other conditions, which have made a wheelchair a necessity in my life, are a blessing. I now am a person with a bad back. EVERYONE UNDERSTANDS THAT! And I no longer have to worry about where the next chair/seat is. I travel in my very own. Who says life aint great!

[dsauber]

Hi, I have been disabled by OT for several years, with a correct diagnosis only more recently. I find myself getting down about not being able to do the things I have always done easily. I have led a fairly physically active life until this hit. I still look quite fit although I have gained nearly 20 lbs.! It is such a bummer to look o.k. and act so wierd, always leaning on something or needing to sit down while everyone at the party is standing. Makes you want to stay home. Some of the groups where I appear regularly are getting used to my condition but nobody understands what is really happening. Thanks for your website, I can see from reading the postings that lots of my anxieties are quite 'normal' for OT sufferers.

[gloria]

Dear Margie and Donna: Welcome to the website and thanks for your wonderful realistic approach to life with OT. It's true we lose too much by whinning and complaining. The other thing is, that we can only expect limited understanding from others because we are a living oxymoron in appearance. Our true salvation is getting on with the job of spreading awareness so "explaining" will not be a universal necessity. I'm really proud of our OT community, we might be shakey, but we certainly are strong of heart. Your OT partner, Gloria

[gardenwoman]

Hello at last,
Thank you Gloria for starting this site which has been a mine of information to me for more than the 6 months that I have been diagnosed, after having wobbly legs for around 20 years and thinking it was "anxiety" . Its been getting much worse lately, so I was relieved to know just what it was after the EMG test. Sorry it has taken so long to say hello & thanks, but its not been an easy thing to come to terms with especially since I have a multitude of other chronic health problems.
I think you will be hearing from me more often now that I have taken the plunge, I hope that I can contribute something which will be useful to others. Meanwhile. take care all.

[J.M.]

I am 66 years old and I was finally diagnosed with OT on Friday, after it being blamed on my age for at least the past 8 years. It started with having to hop from one leg to another while standing, because of the shaking. As time went on, my legs got weaker and shakier. I wasn't able to take showers anymore and even when taking a bath I have to sit down half-way through to finish wiping myself. It is also hard to stand at a red light and wait for it to turn green. I find it very inconvenience for lots of things. I can walk for miles and climbs stairs which are no bother at all; but as soon as I stop my legs starts being weak and very shaky within a minute, and they gradually get worse the longer I stand. I have to be leaning onto something or maybe hop from one leg to the other which may help a bit. My neurologist is starting me off on Sinemet"; but the druggist replaced it with the generic brand "Apo Levocarb" which I hope will give the same results as the "Sinemet". In the past, I had tests done; but they never knew what I had. One test did show that my muscles in my lumbar spine were all squeezed together; but it stayed at that. Nothing was done. I don't know if it had something to do with the OT. Thank you for the website. I find it very informative and interesting. J.M.

[Jackie]

I'm so happy to have found this website. Thanks to you all who have so gerously offered to tell your experiences.

I'm 43 and have been having problems with tremor for about 5 years. I was told back then that there was really nothing I could do about it. I had originally thought my tremor was from drinking too much caffine. So, cut that out and I'm still the same. This past summer my symptoms seemed to get much worse. Instead of just a head tremor the tremor migrated to my whole body, trunk, legs, etc. I had an MRI and have high blood pressure, which got worse as my tremor progressed. Even was given a corodid duplex to check to make sure I was getting enough of a blood supply to my brain. All turned out to be normal including blood work. I was "officially" diagnosed with Essential Tremor. I was put on Toprol XL for the high blood pressure which is a beta blocker and may help some with the tremor. I don't know if it's helping or that I'm getting better at avoiding situations that might trigger a tremor, i.e. anxiety or stress promoting situations. Someone here mentioned the corolation between tremor and adrenaline. I totally agree with that. The slightest burst of adrenaline and I begin to shake somewhere.

I actually have changed my primary care physician and have an appointment tomorrow with the new one. I plan to talk to him about the EMG test and some of the drugs you all have mentioned here.

Again, I'm glad to have found this site and just to know I'm not alone.

[lorna]

Hi to all OT's out there, yes I agree with Gloria that some of us long time members of this site should call in, I am a gunner, but never seem to get around to doing it. I read the site on a regular basis and keep up with new callers to the site. What concerns me so many are finding the site, also what about the people who do not have the net to call in. Just how many of us OT's are really out there, is it really a rare disorder? To me it is more wide spread than we think it is, and its about time some neurologist really started to look into our condition and start some trials on OT.

I trialed for my new neurologist (new man in my life), from Melbourne Australia, and I am taking two 75mg of Pregablin mornings, and it holds all day, 24 hours, I have been on this drug for 10 months and have found it is better for me than Neurontin, I can stand a little longer (not much anyway, but cope). Also I do not have the weight problem that Neurontin did for me. I must add that I have to take 1/2 a mogodon to help me sleep, due to Pregablin, but I am happy with this, I function really well all day.

Depression is part and parcel of OT and we ALL get it some times but we have to look at the big picture and try and over come the downs. I do not have the big C (that I know of), I do not have motor neuron, I do not have Parkinsons, all much worse than what we have. I always try and do what I always have done, even if I struggle, (a wonderful husband helps), I have a beautiful garden (my passion) always sitting, but thats ok. I am addicted to family history, and also I am always doing some sort of craft.
What we should all be doing is enjoying what we have, we are very lucky that we only have OT, frustrating as it is.

And we must remember Gloria, she started this site and she is our hero, and made all our contacts possible. Kind regards Lorna.

[Abinadi]

My name is Rich and I was born helpless in the wilds of the western USA just at the start of WWII, without clothes or money and unable to provide for myself. Fortunately I was born of goodly parents and with help I eventually overcame those handicaps to become a role model, a fashion model and a scale model. After raising seven children, learning how to fly a couple of kinds of aircraft and finishing a career in real estate brokerage, I retired and tottered on my tremor-racked legs to Central America for one more adventure. (I will not mention all of the dead-ends in life I embarked upon which did not turn into things I can brag about.)

I am now in my 67th year and I live in Panama with my wife and daughter in the western highlands (1385m or 4550ft above sea level - with an eternal springtime climate) near the border with Costa Rica. My latest challenge is to become conversant in Spanish so that I can find my next meal.

Here's a conversation piece for you - the Spanish term for our affliction is temblor del orthostatic primario*. So the acronym in Spanish would be TOP. Hey! I already feel better about this disorder, don't you?

As to the Primary Orthostatic Tremor (POT) that I have been blessed with, my advice is to persevere in moving as much as you can. Besides it's harder for others to hit a moving target. I try to walk every day (don't always make it) and maintain a healthy sense of humor and perspective. The worst thing you can do is to feel sorry for yourself. After all, look at the impressive list of possible ailments we homo sapiens are subject to in this life. Makes me glad I "only" have POT (well, that and a few other things too, but you'll have to go to other forums to learn about those). By the way, the neurologist told me that the word "primary" in POT means that they don't know what causes it. Now, isn't that comforting to know?

If it's really freezing cold where you are, come to my photo website for a virtual vacation in the tropics. You can find us at http://www.flickr.com/photos/young-in-panama

Plaudits (enthusiastic expression of praise or approval) to Gloria for this excellent website. You done good, Gloria.

Meanwhile, I'll be watching for whatever all of you post here.

Vaya con dios, Rich


*The Spanish pronunciation for temblor del orthostatic primario is "tame-blore dal or-toe-stah-teek pree-mah-ree-oh" while giving a slight roll to the second "r" in primario. See, that sounds more exotic already, doesn't it? Just gives you warm fuzzies all over.

[karen]

I'm 47 years old and have just been diagnosed with Orthostatic Tremor.
This forum is so wonderful...it's good to know that I'm not alone.
I am currently taking Primidone; but feel that it interferes with my memory and I still shake. I'm going to a new neurologist in April.
I started shaking about a year ago and have no family history of POT.
I have lower back pain when I stand for over 30 minutes; which is probably due to me trying to keep my balance. It has really become an adventure for me to go to the grocery store, but at least there is a cart to lean on! My symptoms seem to be getting worse. How do other people cope at work? I sit at a desk most of the day which is great. Occasionally I have to travel and meet clients which can be embarassing.
I finally told my manager at work what is going on. Can they fire me because I shake?? When I get nervous or upset I shake more; I feel like Jello!
How do others handle housework? My husband is great; he does most of the cooking and we have cleaning people come in every other week.
Now, if I could just get him to do the grocery shopping!!

I'm very interested in hearing from others. Anyone from Illinois?

Karen

[J.M.]

I found out I had OT 2 years ago after not knowing what was wrong with my shaky legs for about 10 years. I come from a big family and I am the only one to have this OT; so it is not a family history here either. The only time I have lower back pain is if I've been up on my legs for at least an hour of standing or walking. I too get to shake more when I get nervous or upset or if I'm tired at the end of a day. About housework, my husband was always a great help around the house which I reallly find good. I have to sit to do anything, or else lean on something while doing it. My neurologist had prescribe me a medication which didn't seem to help after taking them for one month; so I stopped taking them and to do without medications. I just don't beleive in medications because I think my OT is slowly going to get worse whether I'm on medication or not. I'm fine without it. I just think that the little difference it does is not worth the side effects of the medications. That is only my opinion. Take care. J.M.

[Marianne]

Like many of your stories, I went to numerous neurologists who looked at me like I had 4 heads when I explained my symptoms. I finally found a neurologist who finally knew what I was experiencing - OT - After treating me with no success, he referred me to a physician who happens to be one of the leading specialists in movement disorders. His name is always on the top 10 list in New Yorker magazine. His real speciality is Parkinson's. He does have a few patients who have OT. He has worked with me for the last 15-16 years, trying every type of medication available. I have been taking Clonazapam since the beginning and it worked for a while but then the "standing time" started becoming shorter and shorter. I believe he has tried every medication, both alone and in combination with the Clonazapam but nothing has made a difference. The last time I saw him (about 4 months ago), I was able to stand about 20 seconds before the tremors in my limbs started. Today, I would say it has gone down to about 10 seconds. I will be seeing him again in September, but at this point, I think we have run out of medications to try.

Its true that when you try to explain this illness to someone, they really do not understand. And like one of you said, even physicians look at you strangely when you describe it to them. I fell recently and had to have shoulder surgery and my orthopedist had never heard of orthostatic tremor. He actually had to do some research on it in order to find out more about it. Although I still work, thankfully most of my work is done at a computer and I can sit down. However, many times during my day I have to get up to speak to someone, do filing, do copying (I have to sit while the machine does the copying, etc. I can't stand on line to pay at a supermarket or store or for that matter, walk around leaning up against a wagon in a store. Walking slowly is worse than walking quickly. I'm now developing a dowager's hump due to my posture. Can't do anything at home, ADL's, cooking, cleaning, ironing, etc. I'm trying to see if my health insurance would provide me with an electric scooter so that I can get around. So far, I've been denied twice. Am trying a 3rd time, through my physicians. When I exhaust my physician appeals, I can then speak for myself.

I know what you are all experiencing and I hope that you all have lots of good days and not so many bad ones.

Last year my neurologist called OT an "inconvenience". This time he's calling it a disability.

Good Luck to all of you.

Kaylie

[Kathy]

Hi Everyone,

First time writing to all of you and very happy to have friends with similar problems.

From reading previous information, yes I am diabetic and also have "extra" shakiness right before meals. In my case I just tell everyone I'm shaky because I need to eat. Very few people know of my OT problem and intend to keep it that way. I work in an office and sit for most of the day, when I need to make copies or stand for any length of time I lean on the copy machine or a desk if I'm talking to a fellow employee. It's a common posture so no one thinks anything of it.

My problem started in 1989, and at that time the Dr. put me on Klonopin. I take 1 mg a day and that has lasted through today. Recently, I asked to try another medication (with my neurologist) and was prescribed premidone. It didn't work (taking it 3 times a day) and down to 1/4 a tablet of klonopin I was shaking all over the place. The one thing I did discover was how much the klonopin dulled my senses. Also, how much I just wanted to lay around and just watch tv or sleep. I felt with the premidone more energy and felt like doing more crafts, reading, and mall shopping with just generally more get up and go. However ,
it just did not stop the shaking and made it worse. But now I had a taste of a different kind of life with more energy and I wanted it back.

I recently asked my general doctor to prescribe Lyrica and decided to give it a try. I don't know if it will make any difference as I have also heard from previous people that they felt in a daze taking it. It is a real bummer going off Klonopin as the shakes last for about 3 days when weaning off the drug (with each 1/4 of a tablet) that's why I'm not too eager to try many things. I know how I feel on Klonopin and at least I can function with that drug. I have also heard from some people that they had felt not ill effects which was encouraging to me, so here I go again trying a new drug with Lyrica.

I would enjoy hearing from anyone taking Lyrica or has taken it and what effect it had on them. Wish me luck with this new adventure.
Kathy/Florida