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[Esteban]

I've had symptoms of OT for quite some time. 47Y WM.

Presents as a persistent feeling of being something akin to dizzy.

Legs and back constantly in spasms as my legs always seem to be adjusting to the rocking boat like motion I feel.

Became increasingly harder to stand without something to lean on over about 10 years.

Six years ago my wife was diagnosed with MS. I told her I'd stand by her no matter what. Little did we know I'd be the one with problems standing just two years later. When ever we do a MS walk, people assume I'm the one with MS.

Five years ago I started seeking treatment. No one had a clue. I came across these fourms after a few years and mentioned how my symptoms seemed to be a one for one equivalent to OT.

Doc started me on Clonazepam, started having serious memory issues.

Neurontin started serious hormonal reactions, so that went away quick.

Finally ended up on Primidone seems to be working quite well.

During the past 3 years my tremor has moved to my arms. I seem to do much better while sitting, even with my arms.

I still have troubles standing still for long periods of time. I usually lock my leg to a chair or a desk when I'm standing, use a handle in the shower, and carry a bucket with a lid (to sit on) around the house when I'm cleaning or doing chores.

I use a cane in public on bad days not so much for balance but to let people know I have motion issues.

[gloria]

Hi! Esteban: Welcome to the FORUM and thank you for reporting your experiences with OT. I hope the website will help you with your questions and comparisons. Will look forward to your future postings, Gloria

[Scots lass]

Hey,

I'm Z. 39 yrs. diagnosed with Orthostatic Tremor in 2012. First by me complaining of shaking legs when standing and happened it was a young neurologist standing in for the consultant and he listened with stethoscope to my legs when standing and heard the characteristic helicopter beating sound.
I had tests at Royal Free Hospital in London where they put probes in my muscle and confirmed a fluctuation between lower frequency to a higher frequency correlating with OT.

I refused medication and at present refusing beta blockers (as do have essential tremor in family). I have many other health problems including Hypothyroid and had Ulcerative Colitis with many surgeries in my teens to remove my large intestine. Currently treating Hypothyroid with Natural Dessicated Thyroid, treating SIBO with a no carb diet and taking many vitamin supplements. And adrenal fatigue with DHEA and pregnenolone. Under care of Functional Doctor.

I have noticed a calming of general tremor with my detoxing, increase in iron, B12, magnesium and D3 and B6 has been great for my calf muscle cramps.

Continue attempting to improve general health and perhaps the OT will improve. If not I'll then look at the medication treatments.

I use folding sticks and seats on sticks when I go to parties and events where everyone is standing.
And alcohol as with many people does help - not ideal for my general detoxing though. And the next day my tremor is much worse - which does make me wonder whether there's an alcohol/brain issue. As I also have issues with the detox pathways.

Anyway, that's me. Just trying to work life out and remain doing things at high speed.


Look forward to sharing this journey with others.

Zxx

[gloria]

Hi! Z: I commend you on your ambitous attack on your multi-health issues. I'm very interested in the continued results of your using supplementing and detoxing for your OT so please keep us posted. Are you doing any walking therapy for your OT???? All the best, Gloria

[Scots lass]

Hi Gloria,

And thank you.
I'm not sure how different walking therapy is to normal walking...?

I'm walking a few miles a day when I can (but I admit not every day due to my gut problems being quite debilitating at times) and I play tennis as often as my muscle cramps allow (often pull my calf muscles which the B6 and B12 does help with) - I've learned to just serve quickly because of the balance issues.

I'm intrigued by walking therapy - I'm guessing it's walking every day to keep things moving...?

Thanks,

Zena

[gloria]

Hi Zena:
I'm sorry I did not phrase that correctly by adding the word therapy I should simply have asked if you did any walking as part of your exercising routine because walking is one of the best things for our leg muscles to date. Keep us posted on how you are doing, Gloria

[Flamingo]

Hello and Best Wishes for 2016 to all! I am so grateful that I found this website! I was looking like a needle in a haystack for information until I got to it. Thanks to all the contributors. It is amazing!
I have not been diagnosed yet, but for the past 6 months have been presenting weak legs and hand tremors. I have been seen at a reputable hospital in South Florida that has a movement disorder clinic. I was told it is a mild form of essential tremors. Lately, I have developed what feels like tremors of torso and I believe also legs. Often feels like electric current going down my legs and some “pulling” in the back of knees and a balance problem. Was told it is all anxiety related, was almost discounted and prescribed propanol. They said they could not see my legs shaking?? Makes me wonder... Finally, after insisting this is more than anxiety, the 4th neurologist at the clinic ordered an EMG. The appointment for that is two months away, nothing available earlier. A problem has been that I have not been able to see consistently the same neurologist because the wait for appointments is lengthy.

Mornings are particularly challenging with more tremors. I was told this is not possible and no reason for it. I have developed something that feels like palpitations, saw a cardiologist, had some tests and all is OK. Could this be tremors that feel like palpitations? Has anyone experienced such? Also, depending on what I am doing, I experience some shortness of breath. It feels like my body’s response to the tremor, but was told to see a respiratory disease specialist instead. I have been told by the neurologists that nothing that I report makes sense. Is shortness of breath something that could be related to tremors? Have others experienced this? It would be so helpful to be better informed so that I can pursue proper intervention. Does anyone knows knowledgeable orthostatic tremors specialist in South Florida? Kind Regards, Flamingo

[Di Di]

Hello Flamingo .....I hope someone else will also reply and answer your questions ...I too relate to the amasing feeling of relief I felt when I first found this web site of Gloria`s...and then the support that followed ,like being wrapped in a warm soft blanket ...but also given information that I was able to take in and share to try and get a grip on this OT.

unlike you I had been diagnosed the final test being the EMG ...cant understand why it is not done earlier on in the investigation ...a simple test for OT with a startling result ,not unlike an episode of `Mash` ...This MUST be done standing ,and for arms , out front shoulder level ...first above the knee ,then strapped on below knee ...above elbow ,then below elbow...I tell you this as some Dr`s have preformed this test ,lying down with negative results !!

Regard Heart palpitations and shortness of breath ...I had all the tests for heart `privatley at some cost ` as I was and my GP so concerned ...all came back OK . Then after some more months of trying to cope and complaining to my GP he sent me to a Neurologist ,who was thrilled to see me once he detected OT as its rare here in NZ and I was his first case ....I came out of there sort of stunned , but sooo relieved to have a name for `my` condition and that I wasnt going mad ..
I believe the palpitations etc are just anxiety trying to keep up right and coping ...the rest of your questions ,will leave for others ..............this may sound strange , but do hope you get an Orthostatic Tremor diagnose , as its not all that bad ...well ...no ...dont get me started .......take care ...Didi NZ

[Flamingo]

DiDi, Thanks for your perspective! Best, Flamingo

[gloria]

Hello Flamingo: The primary symptom of OT is generally noticed if we are stopped in a standing position we feel the strong need to sit down or start walking......this episode can be minutes if you are a new OT person or only seconds if you have had OT over a longer period of many years. Perhaps you should stay with the 4th neurologist who wishes to give you an EMG because that will either rule in OT or show that you do not have it. DiDi gave you a good possible perspective on your palpitations...... any unexplained health issue can be VERY stressful and frightening. Hopefully the neurologist will give you better diagnosing . Please keep us posted on how you are doing, Gloria

[Flamingo]

HI Gloria: Yes, I failed to mention that I have experienced 5-6 episodes in which I had a hard time standing and had to walk or sit. In the meantime I'm following the recommendation of walking daily 30-45 minutes. Good medicine... The guidance from you and others is so helpful! What great support! You are making a difference for many.
Best, Flamingo

[Njgrdnr]

Hello, OTers. I thought I was registered before and had introduced myself, it appears something went awry. I do check into this website quite frequently -- mostly it brings me sanity. In any event... I live in Ringoes, NJ (Twp. of East Amwell in which lies the Charles Lindbergh estate from which his son was kidnapped [some don't believe the baby was kidnapped!]). I first noticed I had difficulty standing in 1995 when making a presentation before then NJ Governor Christine Todd Whitman and her full cabinet -- my legs were shaking so much, I was trying to hold the podium to stand still; then, the podium started shaking and I started perspiring -- fortunately, this had no impact on my career path which skyrocketed through my first retirement in 2007. I was diagnosed in 2002 by Dr. Golbe at Robert Wood Johnson Medical Center, New Brunswick, NJ -- he now heads the Movement Center there. After a particularly bad depressive weekend weeks before the 2015 holidays, I decided to "embrace OT" - yuck! I have used wheelchairs at airports -- embarrassing at first, but worth it. I recently purchased two rolling task chairs with tractor seats and backs: one for the kitchen (I love to cook and would strain to do some of the necessary tasks like stirring at the cooktop until my back would ache and I'd be out of commission for a day or two); and one for my potting table in the basement (I am an addicted gardener [15 outdoor gardens], starting rare varieties from seed, and gardening outside by sitting on the ground [the roll around carts do not work for me]). I no longer drive. It has taken almost this long for those whom spend the most time with me to understand that OT is more than "I can't stand." Not one of my usual doctors (GP, cardio, neuro, rheumo) have any idea what I'm talking about and only one was interested enough to read the materials from this website and elsewhere that I gave him. When I have a mammo (ouch!), I have to beg to use a stool. Lately, discomfort, disappointment, depression, and frustration seem to be my constant companions. Or, maybe it's just the weather?

[gloria]

Welcome Connie;

What an introduction to the onset of OT into your life at a presentation of yours before the NJ Governor and her cabinet ! Your decision to “embrace OT”- is a good one.. Learning as many coping skills that fit your life style is important. I know it is hard but by managing our OT life we must fight back every way we can!

Here on the website FORUM you can lighten those present “constant bad companions” you mentioned and find “new understanding companions .“ We are all here to listen , help and learn from each other.

Are you planning to attend our meeting in Houston ,Texas with Dr. Jankovic from Baylor University on March 10th ? If so will see you there.

Look forward to your continuing posting, Gloria

[cisco38]

I have had OT for close to 30 yrs. Dr. O'Duffy who is now at Vanderbilt diagnosed me by placing her hands on my lower legs. She referred me to the Movement Disorder Clinic at the Univ. of CA where they eventually confirmed my diagnosis with an EMG.( 16 -18 HZ ). Currently I am on 3 meds: Clonazapam, Alprazolam & Gabapentin. My doctors are experimenting with these meds & eventually will discontinue one or two, I hope. Since the introduction of Gabapentin, I no longer freeze when I stand for too long. I walk 3-4 times a week and dance with Interplay (check out their website). There is a lot of improv. dancing which I can do especially the faster, larger steps. Interplay gives me the freedom to sit when I need to, lean against a wall or lay on the floor. It is much more than dance, & it is lots of fun.
I have never met another person with OT even though I was a public health nurse. Any one out there from the Bay Area, I'd love to hear from you. My husband & I hope to attend the OT program in Houston in March.
I am so grateful for this forum. Thank you, Gloria.

Marianne

[gloria]

Hello Marianne: Good for you, you are living a very physically active life which is the best for OT people. Thanks for mentioning Interplay dancing perhaps some of our OT friends will give it a try. As a nurse have you ever been suspicious of anything that might have caused the onset of your OT?

I will look forward to meeting you in Houston , Gloria