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[Betty]

Hello Joye,

Welcome to the forum! You will find many friends here who truly understand what you are going through and what you are feeling. However, I am sorry to hear you have OT. It is a very strange condition, and few doctors have even heard of OT.

As I read what you had written, I realized you have many things which you have been trying to handle and work as well. I don't know how you did it; but, I guess we do what we must as long as we can.

As I continued to read, I couldn't help but smile at some of the things you wrote...at least you have kept your sense of humor ~ that's a good thing. I haven't had to sit on the floor yet, but have had my legs feel as though I might end up on the floor if I didn't find a place to sit ~ quickly!

I have sat on display shelves in stores, leaned against anything sturdy and even held onto poles; but I have yet to sit on Mary's manger straw at a church play....you do make me smile!

I think all of us here can relate, on some level, to everything you have written here; well almost everything. I have not fallen yet; but you have had two really BAD falls. I was sorry to hear about those and hope you are doing okay now.

Regarding seeing a psychiatrist, I think many of us have been told we should see one, because the doctors don't know what is wrong with us. I was told the same thing; but I continued to search for answers until I got an answer to my problem.

That's when I found Gloria's site; it was wonderful to be able to read what others described, and what I was experiencing. You will also find many different medicatios being taken by those here. The one which seems to be most helpful is Neurontin; but I am unable to tolerate it. I am very sensitive to medications so I take Klonopin. It doesn't help much, but any little bit is a blessing. You might ask your neurologist about Neurontin.

One more thing; if you could go back to your profile and add where you live; you might find someone else in the area and you could meet so you could talk and exchange experiences. You only need to put your city and state.

Good luck and keep that positive attitude and sense of humor....

Betty

[Marlana]

Welcome Joye. I'm glad you found this board, thanks to Gloria and everyone for creating such a warm and safe space. Just having a name for all your symptoms can help you feel better emotionally. At least now you know you haven't been making these things up, as if you would anyway. (wry grin)
I have yet to be officially diagnosed, but I know it's OT. Betty mentioned having vertigo and other balance and dizzy spells along with my being legally blind. Yes, I do get vertigo evey so often. I've had several head injuries throughout my life, seizures, in response to medication, a couple of times leaving me with post concussion syndrome on two occassions lasting many months each. I also get head rushes, upon standing up too fast, if I don't drink enough water. My balance has always been off because of my vision and my ear drums are massively scarred due to many childhood ear infections where the standard treatment was to lie under heat until the eardrum would pop. So yes, dizzy comes in many flavors. (grin)

Marlana

[joye]

Thank you for the welcome! I live in western Illinois, almost Iowa 30 minutes from my widowed mom who still lives in Iowa. I was caring for her until she had a stroke 5 weeks before I feel. Luckily I got her in-home care then so now, when I understand more why I could not pick her up off the floor by myself, I am assured she is being cared for. This diagnosis has me reeling as I recall all the times I've embarassed myself trying to deal with it and not being able to ask for help because I figured somehow it was my fault. I am bipolar and after 31 years on meds, my husband, myself and even my doctor just chalked the tremors up to side effects, stress, anxiety, exhaustion perhaps panic attacks. I was left on Thorazine by mistake for 12 years, was hit on the head with a baseball bat at 6 and dropped a grade because of it and also test with an ANA of 180 so have been from primary doctor to rhemotologist to psychiatrist to neurologist and back again. My psychiatrist has been supplying xanax and inderal which does work for short times. The neurologist put me on Klopopin less that a week ago and I don't feel much different. With this bad fracture of leg and ankle, the nerved are running wild and feel like pins, needles and buxx saws. I just started walking unaided after a cast, wheelchair, boot, walker, 4-pronged can, and have not stood much but almost feel like the break in my nerve stream has stopped that rhythmic galopping of my legs that always happen to both at the same time not under my control. I'm not suggesting people break threi ankles badly, but am curious if it may have changed the nerves. I have an appointment Aug. 11 for a full nerve testing. We'll see.

[gloria]

Joye: Wow! you certainly have had a plethora of things going on in your life that you have been trying to cope with. Perhaps you should just take a little time out of trying to figure things out and let the fracture of your leg and ankle heal. OT is weight bearing so when you heal you can analysis your leg tremors better. You say the diagnosis has you reeling, but you also have other health issues so hopefully you and your doctor can put things in the right prospective and be treated accordingly. OT is very disabling but your goal will be to build your life around it so it doesn’t control you. A lot of work ahead but you can do it. Did your doctor say you are having an EMG of your legs on Aug. 11. ? Take care, Gloria

[joye]

Thanks Gloria,
Yes, I'm having an EMG on the 11th. I'm trying to absorb all the information here as there is so little information about OT generally. It seems lots of other people have a lot going on and every description of symptoms is personal. I distinctively recal having this since the mid 1980s to - while I read of how debiliting it may become, have great hope as I've developed almost an unconscience set of coping skills I've had in place for a long time to avoid actually standing still unsupported in almost all situations. Joye

[Marlana]

I have done the same thing, Joye. I have had OT since about 1997, not knowing what it was, but have gotten pretty slick at leaning, pacing and sort of walking in place when there's no place to sit. All of that does help, and now the symptoms are pronounced enough that people notice and ask me if I'm ok, that has only started in the past couple of months. I also notice that the symptoms can amplify suddenly under stress, and stress can be just being out, not even stress as in nervous or anxious.
The EMG: I would like to know people's experience of that test. I haven't had it yet, have read about it and am wondering if people experience it as painful and is it commonly done at the same time a nerve conduction test is done? Is it a necessary test? Since there's not really much to do be done about OT, then why bother with the EMG?
I'm not quite sure if we should be having the EMG discussion here or in a separate thread, so please feel free to move this discussion to a new place on the board if that's more appropriate.
Thanks,
Marlana

[joye]

My EMG is for peripheral neuropathy in both arms below the elbows and legs below the knees, not the OT. I've been told EMG can pinpoint the problem causing the neuropathy. And yes stress, even happy excitment can cause problems...also heat.

[kate]

Hi Joye and Marlana,

I have had an EMG several times. It is painful but not too terrible. I had one done at the University Hospital here and then at Mayo. I will say Mayos was more painful and I had pain later that night. When I mentioned it the next day they said that was common. I had it done during the diagnosis process for the OT. It was done at the same time as a nerve conduction study.
I am interested in what you find out about neuropathy. I am thinking that I may have developed that neat condition also.

Even happy stress makes the tremor worse for me. I have no tolerance for heat again that causes the tremors to be worse for me.

Kate

[Betty]

Hello to everyone!

I was reading the posts regarding nerve conduction and EMG tests. I have had both done and felt I should add my experience.

Regarding the nerve condution test ~ no discomfort for me at all; and it was not done when I had my EMG.

The EMG: I had this done at Comumbia Presbyterian Medical Center in New York City, December of 2003, by Dr. Seth Pullman. I did not experience ANY pain OR discomfort at all. It took several hours to do all that was done; and I have copies of all my test results.

It was during this test that Dr. Pullman told me I DEFINITELY have OT. There was a severe spike shown on the graphs. When Dr. Pullman saw that, he immediately said, "You definitely have Orthostatic Tremors. You don't see that severe spike in any other movement disorder."

Marlana: You questioned if the EMG was a necessary test. As I understand it, that is the only way to determine if you have OT. There is no other test to show and measure your tremor rate. As I said above....I did not experience ANY pain at all.

One is hooked up to electrodes to measure the degree of your tremors ~ no pain ~ just results. I also have Essential Tremors in my hands, which is also shown when doing certain tasks.

You also mentioned stress; that is a major factor ~ at least for me ~ but I think it is the same for all of us. Stress is not our friend. As I have said so many times, no matter the stress, whether it is good, bad, happy or sad ~ it affects us the same way; our tremors become much worse. It seems to stimulate the adrenal glands (at least this is my opinion), which makes our tremors much worse.

I have described it to many doctors as well as other people, it is like the 'fight-fright' syndrome. You get a severe adrenal rush and tremors become almost out of control. I am speaking for myself; but it may be the same for others.

So....I think it is important to get an EMG if at all possible. It is the only way to be absolutely sure whether you have OT or something else.

I hope this helps, and I would like to know if anyone else experienced any pain, or like me, experienced none at all.

Betty

[kate]

Hi,
Just thought I would clarify. The EMG I was with needles placed in my muscles and then my muscles put into different positions. The nerve conduction study followed which was small electric shocks. After that I had another test where they stuck electrodes on my legs and arms. There was no pain at all with that. It was not horrible pain, but it did get my attention. It was well worth having.

Kate

[aussiepommy]

In regards to the EMG I had, It did not include needles but my experience was painful. Reasons being is because they had me standing, hence convulsing, on the spot for what felt like eternity. I have heard that the needle EMG is very painful and can hurt for some time after.
I hurt after also because my muscles went through so much trauma. I vow never to stand that long again (unless cured).

[Betty]

Hi Kate,

I feel the tests you had done must have been different from the ones I had. Regarding the EMG; there were no needles (which would have been painful), only the electrodes ~ no pain. As to the nerve conduction study I had, I do recall having a few needles inserted and small electric shocks to check the nerve reaction, it was not that uncomfortable for me. However, we all have different levels of pain. My tolerence for pain is very high.

Aussiepommy: You must have had the same EMG I had, no needles, just electrodes. I must admit there was discomfort during the test, but it was because I had to stand for such a long time, thus causing my muscles to cramp.

It will be interesting to see if others have experiened the same things as we. We are all alike, yet we are all different in some way.

Betty

[DaveW]

Comments removed.

[joye]

I'll find out, but was told it would be like acupunture needle with a brief electoshock to get a reading. I've had acupunture and it only hurt if needle literally hit a nerve. I was also told to take my Klopopin that day which would have me into that med two weeks. I've read here lots of people being unresponsive to meds,but I have always been very reponsive. I've tried standing recently but with the broken leg/ankle and meds, I'm just not getting the galloping spasms that made me fall, so I'm almost worried it will not show even though I've dealt with it over 25 years. Has anyone else fallen and broken a bone thus causing a physical change in your wiring? Joye

[Betty]

Hi Joye,

I have tried to think back to when I had my nerve conduction test done and whether or not any needles were used. It has been many, many years ago, and I do seem to recall I did have at least one or two needles with electrodes attached which gave a slight jolt/shock. I didn't find it painful, just a very slight discomfort. You should do just fine.

One more thing I wanted to address...your doctor told you to take your Klonopin the day you are to have your test. Are you speaking of the nerve conductiot test? I was not taking any medications when I had that test done; it was before I knew I had OT.

When I had my EMG done, I was told NOT to take my medication ~ I am on Klonopin as well ~ for 24 hours before the test was done. The neurologist wanted to see and test me without any meds for at least that amount of time.

I hope all goes well for you and we will all be waiting to hear the outcome.

Betty