The Orthostatic Tremor Forum (archive)

I'm still working full time in a very challenging job that requires me to on my feet for 8 hours but also requires me to have a clear head as well. I found that clonazapan was clouding my judgement and also interfering with the quality of my life at home, so the doctor has been slowly taking me off of it. WOW!!! My symptoms have exploded. Currently I'm taking 1/2 mg of clonazapan and I've become pretty much house bound.( By coincidence, I happended to be on a vacation week from work this week) I was diagnosed at UCLA in 2008. I knew the meds were barely getting me through but the OT has progressed so much it is astonishing. I'm going to try gabapentin next. Don't know how or even if I can go back to work. Just turned 60. Really scary. Shaking most of the time even when sitting.

Irish: I'm sorry things are difficult at this time. The stress of thinking about being able to remain employed has probably got your adrenaline running high. I can't imagine how you can be on your feet for 8 hours of the day with OT!! Hope the change in med's will help. Are you thinking of finding a job that doesn't require being on your feet or can you consider stop working ? Gloria

I really do like my job and wanted to work 2 more years. My husband and I are planning to come back to NJ in 2016 when my husband is 66. I'm thinking I may have to apply for SS disability if the new meds don't work out. Saw my Dr. yesterday, he gave me 1 month LOA to give the meds a chance to work. My job is very intense like I said and requires a clear mind, right now I'm not stable enough to go to the grocery store. My Dr. says I'm having and adverse reaction to coming off the clonazepan. Have you ever heard of that before?

Absolutely! Clonazepam is a benzodiapine and can be addictive. You have to come off very slowly or you'll get all kinds of nasty reactions.

I'm new to the forum. I'm new to the disease. I just got diagnosed a week ago. I'm so over-whelmed. I have been out of work the last couple of years because I was taking care of my husband that had cancer and then he died and I didn't work for a while because I needed to grieve. I am a speech pathologist and also took time off, because I just didn't have the emotional ability to go be around people that were ill and possibly dying too.

Now I have this and I don't know how I'll find a job. The klonopin has me sleepy most of the time and makes my thinking slow. If I'm a SLP it does require I stand a lot, depending on the setting. Even before the diagnosis, I was thinking of maybe changing careers and going into something else, even if it meant going back to my pre speech days and being a cashier or something, but how am I going to do that now if I can't stand for long periods of time?
I was just out in my yard spraying weed killer in my gravel driveway. After a few minutes of that my legs of course began shaking, but so did my arm and hand. I kept at it until I finished with the jug and then quit. I came in the house and my arm would not quit shaking for over half an hour. It was really bad, severe tremors and not just tiny shakes, but major ones. I just broke down and cried.

I'm so trying to stay positive. I walk my dog every day, but when I'm walking him, I do notice that at times I almost lose my balance. I want to be able to keep walking . I don't want to end up in a wheelchair.

The amount this disease has progressed since I first started symptoms in December is scary. Does anyone get pain in their muscles with it too? I am not getting pain in my calves. I know this is about employment, but with all going on, I just don't know how I'm supposed to go out and get a job!!!

I've had one friend tell me that I should go ahead and apply for disability, but I think I read some other place, that people have a hard time getting disability with OT because it's so rare.

Any advice?

Thanks for letting me ramble.

Hi there,
I'm still running my own company so I can safely say I'm working more than full time.

I'm sorry for your loss and then the OT on top of that. Perhaps there is a connection? (Emotional) Trauma seems to be a cause for some of us.

It's the hardest time just after diagnose I think - at least that's my experience. You'll find your way forward, we all find some way of coping.
I'm not using any drugs now and I cope quite ok.
Do read my "the Golfnut Story" on this forum - it might bring some ideas and input.


Best regards
the golfnut

Hi there, I just wanted to add a quick word. I also was diagnosed relatively recently (last October).
It is really scary and difficult time, and you have had the added trauma and grief of losing your husband.

One thing I think it is worth saying. Don't beat yourself up about feeling upset about having OT from time to time. YOu're doing loads of positive things, so give yourself a break on getting overwhelmed now and then. Also see 3. below for a suggestion on how to cope with 'having to tell people'- I'm still practising after 6 months, and have got a really useful hint to share!

From a well-being and mood point-of-view...swimming is a revelation. You feel 'normal' again while supported in the water. The other thing that really helps me to cope is having a 'flipstick', which I will whip out whenever I need people either to get out the way, or to understand that there might be a reason that I am jumping the line. It's invaluable. http://www.flipstick.us/

I think that my personal advice of the 'early days' of coping with diagnosis would be:

1. Go swimmming
2. Talk other people on this forum. It's by far the best source of advice and moral support
3. Ask your Neurologist to do a 1 page letter 'to whom it may concern', that summarises the main features of your OT condition and its impact on your life. I Gave my Neurologist a list of the things that have most impact on my daily and working life (fatigue etc). He then used this information both to put into my medical notes, and to draft the letter. There are things that are not in the textbooks that we need to have on record (eg trunk tremors on sitting, freezing when rising with outstretched arms)
We have the excuse that OT is incredibly rare as an opportunity to 'brief' someone on how it affects us (and that it is currently chronic and incurable). I've found that people are happy to read one page from a specialist, even if they are also in the 'medicl profession'.
I have now used my letter 8 times in the last two weeks. (I'm doing disability registration etc). It also helps when you meet an old friend, for example, and are faced with explaining what's going on- it can help prevent well-meaning questions that are just plain upsetting.

I'm happy to share my 'factsheet' that I gave to the Neurologist, and the letter he wrote for me to inform any relevant parties, if you email me direct at Tiger.moth10@aol.co.uk,
YOU ARE NOT ALONE, please do come to the forum with all your questions etc. You'll find some kind, helpful, funny and interesting people to talk to. I honestly don't think I could have coped without it.
All best, will be thinking of you! Mairi

Linda: I understand where you are at this time in your life but not right after my diagnosis of OT I cared for my husband who was dying of cancer plus having breast cancer myself at the same time........ Life seems to go off the " track" but we learn to fight back!........ Linda ,learning coping skills will be your next step which will ease the way. But please remember you have a very understanding support group of friends here on the website at all times so keep us posted on how things are going for you step by step. Gloria

Mari: your posting of your " [ personal advice of the 'early days' of coping with diagnosis would be ] "is excellent advice for all who are new to the diagnosis of OT and beyond, thank you so much !!! I Your postings are very positive and strong ways of fighting back at OT which is the theme of the website, keep them coming. Gloria