The Orthostatic Tremor Forum (archive)

I am new here. Was just diagnosed today and am on a quest for information. I'm so glad I found this website.

For two months, I have been having episodes when sitting or standing. I begin to get very weak in my whole body and then start shaking. I always have to sit or lay down and then my whole body will start shaking. This lasts for 10-40 minutes and the weakness lasts for an hour to a few days. I was tested for seizures and put on Depakote, even though testing proved negative for seizures. I went through a bunch of tests and everything came out negative until I had a tilt table test. This test was positive. When they tilted the table up, my blood pressure dropped instantly and I almost passed out, leading to the diagnosis of vasovagal syncope.

Today I saw my neurologist who said that I am having orthostatic tremors. He says that since I have low blood pressure and also have vasovagal symptoms that my bp is dropping very low and causing these OT's. His suggestion is that I get more sodium in my diet by drinking lots of Gatorade and increasing salt intake. He lowered my Depakote from 500 mg twice a day to 250 mg twice a day.

Does this sound like anything any of you have gone through? I am so confused. I don't know if a little salt is really going to help anything. He thinks it will raise my bp, thus preventing the vasovagal thing, thus preventing the OT's.

Any advice on what to do, where to go from here? Should I be contacting a cardiologist to find out why my bp is so low? (Today the top number for bp was 90)

Thanks!
Theresa

Dear Theresa: I must say that the description of your OT symptoms are not at all that of most studies of this disease. Orthostatic Tremors has a very defined profile as you will find as you read the descriptions of OT sufferers on the site as well as the studies of researchers in the LINKS section of the homepage of the web site. The diagnosis of vasovagal syncope is plausible as you report but the connection that it is causing orthostatic tremors is very confusing. OT is a neurological movement disorder disease and the symptoms ( tremors in our legs) are started when we stand in a still, weight bearing position and when seated or are lying down the tremors are relieved, but you state that is when your whole body starts shaking. I have had OT for 20 + years and have read hundreds of histories from other OT people that have not had the experience you are describing.
Sorry I can not be of more help, Gloria

Gloria,
Thank you for responding. I am more confused than ever now. See, I get the weakness in my legs while standing. I can walk normally at an even pace, but upon stopping or standing in the same position, I get weak at the knees and have to sit. BUT, I also have episodes of mild to severe jerkiness and shaking in my hands, head and arms, as well as legs and feet upon laying down.

There is a good possibility that there is more than one thing going on with me though. This might be only part of it. I also tested positive for a blood disease which is know to throw tiny blood clots to the brain (antiphospholipid syndrome), causing symptoms related to seizures. This might be what causes the rest of these symptoms. But according to my neurologist today, he believes that OT is what I have. He also used the words atypical tonic clonic to describe my symptoms.

If anyone knows anything more about my symptoms or where I should go next, PLEASE let me know.
Thank you,
Theresa

Theresa:

I'm sorry to hear about the problems that you are experiencing.

"There is a good possibility that there is more than one thing going on with me though. This might be only part of it."

I think that you may be correct. I'm sure that your doctor can guide you and support from the forum members can help you as well.


Good Luck, Gloria

Thank you Gloria.

I decided to fax my complete diary of the last two months over to my neurologist today and asked him to take a second look to see whether he believes that OT's are the diagnosis, or if he believes something else is also going on. I hope he will get back to me soon.

For now, I am increasing my sodium and my blood pressure seems to be staying at a higher level.

If anyone has any additional information that may be helpful, PLEASE write to me. I've lost 2 months of my life being stuck in bed, out of work and without driving. I know it may not seem long, but my children, ages 7 and 9 are also suffering, by not having their Mommy to play with. And my husband is doing so much, I am afraid he will wind up sick too.

Thanks,
Theresa

Hi Theresa

I am so sorry to hear about the problems you are having, especially with young children to care for. I have 2 children (10 and 17) and know how frustrating it can be when my condition prevents me from looking after them in the way I want. It sounds though (like me) that you have a very supportive husband and I'm sure he's happy to help whilst you are suffering so much.

I am no doctor (in fact I have no medical background whatsoever) but when reading your entries it reminded be about a condition I'd come across whilst researching OT on the Internet. It's called Orthostatic Hypotension (a drop in blood pressure when going from lying to sitting and sitting to standing) and orthostatic tremors can apparently be a part of this condition. As I say, I am no authority, but wondered whether it's worth your following it up and seeing whether the symptoms sound like yours.

I hope this is of help and doesn't just confuse you further.

God bless and try to keep smiling!

Lynda

Hello again Theresa,

I'm sorry, but I cannot now find a reference to orthostatic hypotension and orthostatic tremors being linked specifically. However they are both mentioned on a website: http://www.dizziness-and-balance.com/di ... static.htm which may be of interest to you.

I do hope you soon find some answers to your problem.

Best wishes

Lynda

Hi Lynda,

Thank you so much for responding. My neurologist did say I have Orthostatic Hypotension, which he said results in OT's. I just don't understand if the upper body seizure-like shaking is associated with the OH or OT. From what I've read, it doesn't seem to fit.

Thanks for the website. The symptoms of OH according to the website include chest pain, trouble holding the urine, impotence, and dry skin from loss of sweating. I don't have any of those--maybe a chest pain here or there but nothing during my episodes.

Thanks again for writing. I need all the help and advice I can get, since I don't know where to go from here.
Theresa

Hi Theresa,

I, too, was very sorry to hear of your problems. It is difficult enough to try to learn to cope with OT without having other problems thrown into the mix. You do have your hands full especially with two young children.

I read, with interest, the symptoms you described and that your neurologist "also used the words atypical clonic tonic to describe my symptoms". I put that into my search engine and found this site; you might find it interesting and perhaps helpful.

http://search.yahoo.com/search?p=atypic ... &fr=my_top

There are several links on this page you might check, one describes some of the symptoms you indicated you have ~ "the episodes of mild to severe jerkiness and shaking in my hands, head and arms, as well as legs and feet upon laying down".

As Lynda said, I am no doctor either, and I have no medical training; but I have done quite a bit of "searching" since I was diagnosed with OT. I think most of us are constantly searching, but Gloria's site gives the most comprehensive information I have seen.

Try to keep a positive attitude ~ I know that can be a tough one ~ and continue to ask questions of your doctor.

Referring to Lynda once more, it does sound as though you have a very supportive husband (as do I), and again, I agree with Lynda; he is probably happy to help in any way he can to make things easier for you.

Good luck and keep us posted; we all care!

Betty

Betty,

Thank you so much for also responding. I did research on the atypical tonic clonic, but looked into it a little more today (thanks to you) and realized that just because an EEG comes back normal, it does not mean that you don't have epilepsy. I've never had a "seizure" while having an EEG and have had 3 of them since this all happened. So, I thought my doctor was ruling out any type of seizure. But now, I am curious how I would do without having my seizure medicine and being hooked up for an EEG. That will be my next question for my neurologist.

Thank you again. I am hoping my neurologist will be responding to my request that he look over my case again and get back to me soon.

As far as my husband goes, I would do the same for him. It's just weird for me as the caretaker of the family to have someone have to care for me. Kind of nice though. And I love him with all my heart!

Theresa

Hi Theresa,

You've brought up an excellent topic. OT is a disease that many of us know as having very distinct symptoms, but "orthostatic tremor" can also be a term used for anyone experiencing tremors while standing. NORD (National Organization for Rare Diseases) and other medical organizations are using the term Primary Orthostatic Tremor to define the disease, the benefit is that this reduces the confusion that has occurred because this disorder is named after its symptoms.

http://www.rarediseases.org/search/rdbd ... c%20Tremor

Primary Orthostatic Tremor does produce a unique set of symptoms which you can find on the homepage of this site. The following article describes a variety of symptoms that arise from standing, the title is "Orthostatic Intolerance" and is an interesting read.

http://www.emedicine.com/ped/topic2860.htm

To reduce some of the confusion I will be changing some of the references on the homepage to Primary Orthostatic Tremor from Orthostatic Tremor, although both terms are correct.

regards and best wishes, Gloria

Hi!

I have been just diagnosed with orthorstatic tremor. It became severe while standing at a presentation at work. Combining that problem along with spinal problems has caused me to loose my job.

I have the feeling from reading some posts here that many of you have become disabled. Are most of you working? How quickly has it progressed for you? I need to do things to prepare if I cannot work because I am my sole support. At 54 I am not ready to retire or go on disability, but since I lost my job, I am not sure.

Thanks for any information you can give. I have ready information from all of the websites sited.

Louise

Hello Luise; I am porotin I lived in Sydney Australia.I was diagnose not long ago with OT but also have ET so i shake all over. I can work 20 hours per week to keep sane!! at the moment I take a medicine that work some times I have to go back to DR again in November but nobody know how quicly you would deterioreted they said to me is a fustrating illness,I do work standing for 5 long hours for me at end of the day I very tired. Take care porotin

Louise,

It is true that OT is life changing which includes sometimes career changing as well. You are much too young to retire and go on disability and it is not necessary. OT is not going to effect any of your other body systems, it is confined to not being able to do anything that requires a standing position for any length of time. I'm certain that you will be able to find a job that can be more adaptable although honestly it does require more than normal everyday coping skills. I know you are going through a difficult period of adjustment but wanted you to know that you have lots of friends here at the site that understand. Gloria

Hi,
Just wanted to post again and let you all know that I asked my neurologist about OT's and told him that from what I've read, the tremors only affect the legs and not the head, shoulders and arms like I am having (along with the lower body). He told me that I shouldn't believe everything I read on the internet and that OT's can also affect the upper body. He was pretty blunt about it and seemed PO'd that I was questioning his "expertise". Aarrgghh. Anyone else get tremors in the upper body?

As far as OT's and how they are affecting my life and work, I haven't been to work for 3 months, but I believe deep down that there is something else left undiagnosed going on with me. In fact, my GP found something with my adrenal glands this week and is sending me for a catscan next week, so I'm not sure what to blame on the OT's and what to blame on whatever else is going on. Good luck to everyone on this board. We all need eachother and eachothers advice to keep living as well as we can. No one else seems to understand, who is not going through it.

Theresa