Newly diagnosed

[mshilala]

I was just recently diagnosed with OT and was wondering if any one has had vertigo and headaches with there OT. They first thought it was an inner ear thing, then I went through all the inner ear testing and they said nothing was wrong with my ears, after that testing the neurologist was examining me and seen my legs tremoring, then he told me to hold out my arms which my hands had tremors in them, so any input would be greatly appreciated, since this is all new to me. Also they put me on neurontin and I kinda feel weird does that do that to you.

[DaveW]

Comments removed.

[mshilala]

Thank you for replying to my post, So far I have been lucky not to have any side effects from the neurontin, but give me time I may have some down the road, sorry to hear you have so many of the side effects. I am starting to feel a little better from the medication, but I think they still need to up my dosage more. If you have any further input about this disorder please let me know, there is not much out there on the internet from what I seen and it all basically says the same thing.

[valena]

Hi

I have been on nueurtoin for quite some time with no side effect. I also take requip twice a day. It does not take the standing tremors away but possible does help some.
It is something that is daily a difficult thing to deal with and unless someone has seen this website they have no understanding of it. I was finally diagnozed in Nashville hospital.

[traceyj67]

hi. i have been suffering from what i called shakey legs for 3 years now. im 41. my doctors tried to tell me it was my nerves or i was stressed. i eventually got soo bad i couldnt stand at all and found myself propping myself up against a wall or anything else that didnt move or walking around because this seemed to help. showering was getting extermely hard and generally anything that involved moving my head. anyway one day i sat in doctors till he gave in and sent me to see a neurologist who did some tests including a nerve conduction test. result i have orthostatic tremors. i am currantly on just 900mg of gabapentin but it being increased on a regular basis. i have 2 young children at home and 2 that have flown the nest. i am finding my job very difficult to do as i look after children. its looking like i wont be able to continue this job and might have to downsize my house. sorry about moaning but am feeling rather depressed at the thought of walking sticks medication and ultimately possibley wheelchairs. it was only when i typed my diagnoises into the computer that i even knew there was this site here.
my heart goes out to other newly diagnoised. perhaps we can help each other through this.

[jo larson]

Hello Tracey - Welcome to this board which is a leaning post for all of us that suffer from the same disease. Here you can express all your thoughts and no one considers it "moaning" because we all feel the same way. It must be very difficult for you having young children still at home and trying to take care of them, clean house, cook etc. Somehow we all find a way to have lots of stools, chairs, any place to sit while we go about our daily activities. But since you work it just doubles the anxiety and I hope that somehow you can work it out. Please try to read many of the posts here because there are many suggestions to help to make life easier. And remember it is ok to vent on this board, you are among friends.

[MikeS]

Hi Tracey
I agree with Jo . go to the How is everyone post and see how we all have a vent now and again and then see how everyone supports each other.I noticed you didnt put your location I always think its a good Idea to put where you are because you never know there may be another OTer near by and you can maybe meet up.
Keep Smiling
Mike :)

[traceyj67]

thanks Mike and Jo. ive had a really bad day today. told my bosses what i have. looks like i might have to quit as not safe to be around other peoples kids. how daft is that especially when i have to deal with mine. am being refferred to physio to get equipment to help. am looking forward to getting somewthing that helps with showers. how frustrating are they. iv tried having baths but have dislocated shoulder trying to get myself out. its a long standing problem . ok my body is a wreck . can i have a new one for christmas please. i do have a sense of humour its just hiding at the mo. hopefully to return shortly. had trouble pegging out the washing today too. jesus how many times does one have to perch? ok it took 4 goes finally gave up and threw it i the tumble dryer.ok i have to go and bath kids. chat again soon xxx

[marian]

Welcome to the site. I have found it helpful. I went through over 3 years of suffering from having to sit down RIGHT NOW before I fell, having tests after tests. Finally went to a neurologist who immediately knew what the problem was after one test.I am currently on Mirapex .75 mg. twice a day, Clonazepam .25 mg. four times a day, and Primidone 50 mg. once daily.
The only side effects I have had are sleepiness, and an increase in my hand tremor (which I have had for 40 years). Someone here suggested a "portable" handhold for the shower. I travel a lot, and am terrified to take showers or baths in motels. I got mine through Amazon.com, but there is also a site called Drake which is a bit cheaper.
I tried physiotherapy, but find just exercising on my own works just as well.
It was such a relief to me to finally have a diagnosis!

Bea

[jank617]

jank welcome to this site is very helpful you can see what other people are taking and doing that is different from yourself and somewhere along the line maybe find something you know you need. i myself am having the problem with the weak legs and was told to always use my cane which i have two kinds one with a seat, because if i fall i would run the risk of a broken hip and no thank you i am dealing with other things besides this so i don't need something else but if given something i will deal with it the best i can. so habg in there your not alone we all feel like we are at times but there are a lot of us out there so just vent when you need too we understand. take care best you can