So glad to find this site, until recently my “bizarre range of symptoms” have been put down to psychological problems. I am 53 years old and have been suffering from balance problems on standing and muscular knot's in my legs and arms since 2005. I lost my job and business early last year. Recently I have been diagnosed with O T subject to confirmation with surface EMG tests at Oxford hospital. I do seem to be suffering with the symptoms of O T and am now 90% sure that I have it since reading some of the excellent posts on this site. It felt weird reading others descriptions of my symptoms that have been questioned so many times by my doctor and various consultants. I have difficulty standing for any length of time needing to lean on something / anything to support myself. Queuing in shops is a nightmare but I feel well enough in myself.
I have so many questions to ask but thought I would start with medication. At present I am taking 80 mg slow release beta blockers and my consultant now wants me to take clonazepam as well. I am not sure I want to take it as I believe it is highly addictive and can have bad side effects. Is there anybody out there taking this combination of drugs?
Also does anyone use any alternative therapies or medications? I am seeing a private sports therapist which helps with the tightening muscles in my arms and legs. I additionally have problems in my neck and back which seem to have been caused by postural problems over the years.
I am unsure what to do next please help.
Margaret
Recently diagnosed with O T
Moderator: gloria
Re: Recently diagnosed with O T
Hi, my name is Daphne and I have had OT for over 20 years. I am 66 years old and live in the
Oxfordahire Area.
Firstly I would like to say that I have been taking Clonazepam since I was diagnosed. I started on one .5mg a day (taken first thing in the morning. This worked really well and my OT stopped. After a few years I noticed it was coming back and had to increase the dose. I am now takin 4 .5mg in the morning and to be honest they do not seem to be doing anything for me but my GP says if I stopped taking them I would have withdrawal symptoms. I can take extra tablets in the afternoon if necessary but I have tried not to take any more because they don't really help.
I have not tried Beta Blockers.
Lastly I would be very interested to know the name of your Specialist and if you see him at the JR in Oxford as I am having a job finding a Specialist since mine retired.
Oxfordahire Area.
Firstly I would like to say that I have been taking Clonazepam since I was diagnosed. I started on one .5mg a day (taken first thing in the morning. This worked really well and my OT stopped. After a few years I noticed it was coming back and had to increase the dose. I am now takin 4 .5mg in the morning and to be honest they do not seem to be doing anything for me but my GP says if I stopped taking them I would have withdrawal symptoms. I can take extra tablets in the afternoon if necessary but I have tried not to take any more because they don't really help.
I have not tried Beta Blockers.
Lastly I would be very interested to know the name of your Specialist and if you see him at the JR in Oxford as I am having a job finding a Specialist since mine retired.
Last edited by daphne on Mon Apr 20, 2009 11:15 am, edited 2 times in total.
Re: Recently diagnosed with O T
Hi Daphne,
Thanks for your reply. I am off for my EMG tests on Monday at the JR hospital. So hopefully I will know more soon. I have been seeing a Dr Wojciech Peitkiewicz at Swindon Hospital but I believe the diagnosis came from a Dr S Wimalaratna who seems to be the head of neurology. They refer patients to the JR in Oxford for tests. Our paths crossed a few years ago when he diagnosed my husbands condition (rsi), he lacks somewhat when it comes to patient etiquette but seems to know his stuff. I am still taking the beta blockers and additionally a pine bark extract recommended by my local Indian takeaway! I haven't tried the Clonazepam yet as I get on reasonably well without. I went to a hands on healing course last weekend and am feeling a little better. I intend to carry on with this path, you never know, my husband found something called reiki very helpful. I will let you know how I get on.
Margaret
Thanks for your reply. I am off for my EMG tests on Monday at the JR hospital. So hopefully I will know more soon. I have been seeing a Dr Wojciech Peitkiewicz at Swindon Hospital but I believe the diagnosis came from a Dr S Wimalaratna who seems to be the head of neurology. They refer patients to the JR in Oxford for tests. Our paths crossed a few years ago when he diagnosed my husbands condition (rsi), he lacks somewhat when it comes to patient etiquette but seems to know his stuff. I am still taking the beta blockers and additionally a pine bark extract recommended by my local Indian takeaway! I haven't tried the Clonazepam yet as I get on reasonably well without. I went to a hands on healing course last weekend and am feeling a little better. I intend to carry on with this path, you never know, my husband found something called reiki very helpful. I will let you know how I get on.
Margaret
Re: Recently diagnosed with O T
I was FINALLY diagnosed with OT, after three years of testing. The EMT was the deciding factor. 02/09/09, I was placed on a combination of Mirapex .25 mg. twice a day, and Clonazepam .5 mg. twice a day. Since then I have had one severe episode and one slight one, which is a vast improvement.
Re: Recently diagnosed with O T
Hi Margaret,
I was extremely wary of taking medication for my OT and held off for three years after diagnosis. I had never taken long term prescription medication in my life and I feared the addictive nature of clonazepam and feelings of sleepiness that I had heard about. Also, what would the long term effects be? A little over a year ago my condition worsened and I began having jaw tremors that affected my speech. My neurologist reassured me with reports of patients who had taken the same dosage of clonazepam for epilepsy for over 25 years without problems. I began taking .25 mg of clonazepam (tablets that dissolve on the tongue) 3 times a day. I have not had any side effects and this low dose has not effected my energy levels. I wanted to start as low as possible so if I had to up the dose I would have room to slowly add more over time. I feel that the decision to take medication gave me my quality of life back. It's far from perfect but significantly improved my symptoms. I am fortunate to be in the category of patients for whom clonazepam works, at least for now.
Amy
I was extremely wary of taking medication for my OT and held off for three years after diagnosis. I had never taken long term prescription medication in my life and I feared the addictive nature of clonazepam and feelings of sleepiness that I had heard about. Also, what would the long term effects be? A little over a year ago my condition worsened and I began having jaw tremors that affected my speech. My neurologist reassured me with reports of patients who had taken the same dosage of clonazepam for epilepsy for over 25 years without problems. I began taking .25 mg of clonazepam (tablets that dissolve on the tongue) 3 times a day. I have not had any side effects and this low dose has not effected my energy levels. I wanted to start as low as possible so if I had to up the dose I would have room to slowly add more over time. I feel that the decision to take medication gave me my quality of life back. It's far from perfect but significantly improved my symptoms. I am fortunate to be in the category of patients for whom clonazepam works, at least for now.
Amy