Good Morning Everyone!

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

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Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Good Morning Everyone!

Post by Betty »

Good Morning!

It is so good to see Gloria has her website up again; I have missed reading postings from others and how all of you are coping. I am trying, but each day seems to bring another challenge. If anyone would like to share experiences with me, please do; either here in the forum or by email.

Betty in sunny Florida 8)
Sue
Posts: 14
Joined: Wed Jan 21, 2004 4:29 pm
Location: UK

Welcome Back Gloria!

Post by Sue »

It is great to see the OT site up and running again. I agree with Betty! Hope to chat with some of the original message board users and some new ones too. Spread the word!
Hope to hear from you all soon.
Sue from Oxford UK
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Yes! Welcome Back Gloria!

Post by Betty »

Sue, I am also trying to work my way through this new forum; it may take a little effort, but it looks great. I hope all the original message board users continue to check the site and find it is now up and running. I have really missed reading about the challenges of others and how everyone is coping.
You questioned, in one of your postings, whether anyone knew of a help or support group in your area; it seems there is more research regarding OT being done in the UK than in the US. I have found my best "support" group is through correspondence with others who share their experiences and how they cope. Do you correspond with anyone? You might want to try that.

Betty in Florida 8)
Sue
Posts: 14
Joined: Wed Jan 21, 2004 4:29 pm
Location: UK

Corresponding with Other OT Sufferers

Post by Sue »

Betty
Yes, I do correspond with others. In fact I have found Gloria's site invaluable for corresponding with other OT sufferers and have made friends via the internet all over the world. I was just interested to see whether there were any sufferers nearer to home who frequented a group, maybe set up by the National Tremor Foundation. If not would anyone be interested in setting one up? I have also been contacted by a sufferer in the UK who is anxious to set up a meeting with other UK sufferers in a central location - so that we can 'all tremor together' as he puts it!!

I hope you too have found friends through this site.

Best wishes
Sue
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Corresponding with other OT Sufferers

Post by Betty »

Sue,
As you said ~ thanks to Gloria's site ~ I have connected with three other women and correspond with them very frequently. In fact, I have now met two of them and had the opportunity to dicuss OT in depth. We have the same problems and challenges and are trying to find ways best to cope.
It seems most of the OT sufferers here in the US are spread out and it might be difficult to get them together; however, I have discussed this with one of the women with whom I correspond. We would like to get others together and "compare notes"; and perhaps "tremor together", too.
I am not sure we have a National Tremor Foundation here, but that is something I will check out.
I am new at this, having just been diagnosed April of 2003, after trying to get an answer for almost 15 years. I had been to seven neurologist and none could give me any answers ~ finally last year I was told I have OT.
My husband and I flew to New York City in December to another neurologist who does testing for movement disorders, and after testing me he told me it is definitive, I have OT! Now I am trying to find a medication I can tolerate.

My best to you,
Betty
Sue
Posts: 14
Joined: Wed Jan 21, 2004 4:29 pm
Location: UK

Tremor Foundation

Post by Sue »

Hi Betty
There is an International Tremor Foundation in the USA but I believe they cater more for Essential Tremor sufferers. The National Tremor Foundation in the UK caters for all types of tremor. You can be an overseas member if you wish. The contact e-mail is tremorfoundation@aol.com. They have published some helpful information in their Newsletters.

I am pleased that you have finally got a diagnosis. I was diagnosed in June 2000 with the definitive test and told it was POT, it only took me 9 months!! Have you tried Clonazepam or Gabapentin?

Best wishes

Sue
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Tremor Foundation

Post by Betty »

Hi again Sue,

We seem to be having quite a chat today and I appreciate the information regarding the Tremor Foundation here in the USA; I will check it out. I do have Essential Tremors as well as OT. I wasn't aware of the ET until I realized I had a problem with "body tremors". That was before I knew what I have. I just knew my hands would tremor from time to time, especially when trying to do certain tasks. You are fortunate the Tremor Foundation in the UK caters to both ET and OT.

You have done quite a bit of research regarding OT in a short time; and you were very fortunate to get a diagnosis in only nine months ~ it took me such a long time; but now I know what I have and am trying to learn ways of coping.

About Clonazepam (Klonopin) and Gabapentin (Neurontin) ~ I have tried Klonopin and have been unable to tolerate it. I am very sensitive to medications. I have not yet tried Neurontin, but want to try that one next.

Neither my primary physician (an Internist) nor my neurologist have ever seen anyone with OT other than me. I am doing things on a "trial and error" basis at this point. Are you taking anything? Either of the two mediations you mentioned? I know, from Gloria's website, most OT sufferers seem to have their best results using Neurontin.

I will continue to try things, hoping for some success.

My best to you,
Betty
Sue
Posts: 14
Joined: Wed Jan 21, 2004 4:29 pm
Location: UK

Medication

Post by Sue »

Hi Betty
I am enjoying these chats too!

I have tried both Clonazepam and Neurontin. I got a bit 'zombie like' with Clonazepam. I tried Neurontin for a short period but have now stopped taking any medication for the tremor. This has come about because I am a bit of anomaly as far as the neurologist is concerned!
I can cope well without the medication except when under considerable stress. I had to go back on the medication following a car accident in 2002 as the trauma exacerbated the OT symptoms, that was when I tried Neurontin.

You are not alone with medical people not seeing a case of OT before. My Doctor had never heard of it - now he is quite clued up!! He thought I had MS when he first saw me in his consulting room in 1999!

With regards to the Tremor Foundation I think you would benefit from joining the UK Tremor Foundation. They are all for a 'get-together' of OT patients at the Tremor Foundation Conference!

Hope you can come to a decision regarding the medication.

Looking forward to chatting again soon.

Best wishes

Sue
DEEmou
Posts: 21
Joined: Thu Mar 31, 2016 2:53 pm
Location: Northern Ireland

Re: Good Morning Everyone!

Post by DEEmou »

Hi all O.T friends....long time from I posted..diagnosed last May...was put into 3600mg of Gabapentin per day..although I struggle with extreme fatigue maybe down to mixture of meds/condition? I have noticed lately upper limb tremor,migraines have decreased compared with onset..hopefully this will continue.
It's a battle at times to function fully and caught between deciding which is worse ? The fatigue or tremors? What do others think? :wink: :wink: :?:
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Good Morning Everyone!

Post by gloria »

What a nice cheery way to say hello to your OT friends! By just chating about this condition we share with you the same " OT beast of fatigue" going down the same "trail". However, I hope you have been reading on the website there have been a couple of recent research trials that seem to have good results so perhaps we might see better times in our battle with OT. I'm the grandmother of OT and fatigue is my middle name.......Walking at a good pace is still the best "med"........ Gloria
DEEmou
Posts: 21
Joined: Thu Mar 31, 2016 2:53 pm
Location: Northern Ireland

Re: Good Morning Everyone!

Post by DEEmou »

Thank you Gloria...just had a read through the trials...interesting...thinking of trying out some exercise classes for over 50's that have motorised equipment..I know that I need to improve my fitness, strength and hopefully decrease the dreaded fatigue...I was a very active person beforehand and know exercising has many benefits but until recently have not enough 'good day's' to push myself ...but was also holding back due to the fear of being embarrassed if I'm unsteady but I have been feeling an improvement recently in standing and balance...not sure if it's down tho the fact that my coping skills on how I manage 'my way' physically in everyday chores etc has helped plus the meds..Will do a bit of research to see when the classes are likely to be quieter in numbers check out the layout etc and go from there...I'm determined to improve myself every way, now that I feel I can...still have told very few people about my O.T and guess I've been 'hiding away' from it but that will only hold me back from doing things and going places ...even booked a holiday for 5 days to the sun in July with my husband as a' tester ' to see how I tolerate it. Hope everyone is well and thank you all for sharing your advice and stories. Take care D. :)
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