Hi
I am an Orthostatic Tremor suffer living in Dublin Ireland and I was wondering if there are any other members of the Forum living in Ireland?
Orthostatic Tremor - Irish Suffers?
Moderator: gloria
Re: Orthostatic Tremor - Irish Suffers?
Hi Sparrow,
I do not live in Ireland but I am married to an Irish man from Dublin and travel there nearly every year, as his whole family lives there. Were you diagnosed by a neurologist in Ireland? None of our family and friends over there had ever heard of OT. But then again no one over here had ever heard of it either...
Amy in Connecticut, USA
I do not live in Ireland but I am married to an Irish man from Dublin and travel there nearly every year, as his whole family lives there. Were you diagnosed by a neurologist in Ireland? None of our family and friends over there had ever heard of OT. But then again no one over here had ever heard of it either...
Amy in Connecticut, USA
Re: Orthostatic Tremor - Irish Suffers?
Hi Sparrow - I am a recently diagnosed OT sufferer also from Ireland.In fact I was actually diagnosed on Oct 31st with "postural tremor" by a neurologist in Tralee. To be truthful I had already diagnosed myself as having OT through the internet and especially this web site; before ever visiting her - not surprisingly my GP had never heard of it! When I mentioned the possibility of OT to the neurologist she declared " it's all the same thing -postural,essential" and made quite light of it all - it seems to me with the neurologists, if you dont have Parkinsons of epilepsy, they are not interested and you should go away and be quiet. While I agree completely that it is a much less serious condition ,I still feel it deserves some recognition because of the effects it cn have on a person.
I will give you and hopefully others on this forum ( have never been on one of these before) a brief synopsis of how I think I acquired this condition. I fractured my ankle badly on Dec 22nd last and had operation which involved insertion of pins and plates. Six weeks in plaster followed and on its removal I got a condition(related to the fracture) called Reflex Sympathetic Dystropyhy. It was a painful condition which meant that physio could not proceed as swelling and pain was too much.
When this condition abated I started my physio in earnest and went from 2 to 1 crutch and started to walk again but slowly! However on each vist to the physios I mentioned how unsteady I felt in the shower or standing still for any lenght of time but was told that I just needed to build up the muscles in my legs again after such a long time of inactvity. This I believed, until on a visit to th U.S in early Sept after queuing for immigration in Shannon, and attempting to stand still for the finger print test and iris photo test , I was trembling so much that the "nice " Immigration lady officer said to me " Have you got Parkinsons Maam"?
This really scared me(I am not yet 60) and when I came home I did some research on internet and was relieved to know that i did not have it . It took me another week or to match my symptoms to those OT sufferers. I was relieved but also disappointed that there does not seem to be any real cure out there. The neurologist prescribed Rovotril which I gather is same as Clonezapen but it does not seem to have done anything for me - admittedly I have only taken about 5 tablets since they were prescribed - I was hoping for something that I could take only when I needed it as when I am at home, i can manage quite well with something to lean or sit on and have put grab rail in shower to hold on to . But I would like to go back to playing golf and not be afraid of meeting a friend on the street or in supermarket who wants to chat (HOW DO YOU EXPLAIN WHAT IS WRONG WITH YOU??)
I am convinced that there is a connection between the ankle fracture and onset of OT through nerve damage during operation but who will ever admit that -when I asked neuologist was it just coincidence she would not commit and said I probably had Et before that but became conscious of it after fracture!! Is she serious - I could have stood still on stilettoes for an hour before fracture - I think I would have noticed! Anyway no branch of the medical profession is going to implicate another so that will rest there but I will always be sure that there is a connection
I do not think my family even understand how frustrating this is as they mostly see me walking or sitting and it is hard to explain how exhausting it can be to spend even 5 minutes standing "chatting" and all you are looking for is a place to sit. Then next minute you get up and walk away and you are perfect- "can't be much wrong with her" you imagine them say - " just lazy". Anything better than Clonzepan out there PLEASE
I will give you and hopefully others on this forum ( have never been on one of these before) a brief synopsis of how I think I acquired this condition. I fractured my ankle badly on Dec 22nd last and had operation which involved insertion of pins and plates. Six weeks in plaster followed and on its removal I got a condition(related to the fracture) called Reflex Sympathetic Dystropyhy. It was a painful condition which meant that physio could not proceed as swelling and pain was too much.
When this condition abated I started my physio in earnest and went from 2 to 1 crutch and started to walk again but slowly! However on each vist to the physios I mentioned how unsteady I felt in the shower or standing still for any lenght of time but was told that I just needed to build up the muscles in my legs again after such a long time of inactvity. This I believed, until on a visit to th U.S in early Sept after queuing for immigration in Shannon, and attempting to stand still for the finger print test and iris photo test , I was trembling so much that the "nice " Immigration lady officer said to me " Have you got Parkinsons Maam"?
This really scared me(I am not yet 60) and when I came home I did some research on internet and was relieved to know that i did not have it . It took me another week or to match my symptoms to those OT sufferers. I was relieved but also disappointed that there does not seem to be any real cure out there. The neurologist prescribed Rovotril which I gather is same as Clonezapen but it does not seem to have done anything for me - admittedly I have only taken about 5 tablets since they were prescribed - I was hoping for something that I could take only when I needed it as when I am at home, i can manage quite well with something to lean or sit on and have put grab rail in shower to hold on to . But I would like to go back to playing golf and not be afraid of meeting a friend on the street or in supermarket who wants to chat (HOW DO YOU EXPLAIN WHAT IS WRONG WITH YOU??)
I am convinced that there is a connection between the ankle fracture and onset of OT through nerve damage during operation but who will ever admit that -when I asked neuologist was it just coincidence she would not commit and said I probably had Et before that but became conscious of it after fracture!! Is she serious - I could have stood still on stilettoes for an hour before fracture - I think I would have noticed! Anyway no branch of the medical profession is going to implicate another so that will rest there but I will always be sure that there is a connection
I do not think my family even understand how frustrating this is as they mostly see me walking or sitting and it is hard to explain how exhausting it can be to spend even 5 minutes standing "chatting" and all you are looking for is a place to sit. Then next minute you get up and walk away and you are perfect- "can't be much wrong with her" you imagine them say - " just lazy". Anything better than Clonzepan out there PLEASE
Re: Orthostatic Tremor - Irish Suffers?
Catherine, Sparrow & Amy:
I like the way you have all connected, this is how posting on the website helps because OT is international and has no boundaries. Also this is why it is so important to REGISTER and give your LOCATION for it helps our OT community to connect on a local bases, perhaps sometime meeting with others who really understand without explaining. Catherine you did an excellent job of searching out your problem. I suggest that you might want to go to a large medical institution that has a center for neurological movement disorders and perhaps find a neurologist that knows a little more about OT. Finding one is not easy!! Yes, we are a tremor disorder but we are defined as a separate entity. Clonazepam is one of the medications recommended but there is nothing that makes our symptoms go away completely it only eases the intensity of them, I have found something is better then nothing.
Enjoy our OT community, Gloria
I like the way you have all connected, this is how posting on the website helps because OT is international and has no boundaries. Also this is why it is so important to REGISTER and give your LOCATION for it helps our OT community to connect on a local bases, perhaps sometime meeting with others who really understand without explaining. Catherine you did an excellent job of searching out your problem. I suggest that you might want to go to a large medical institution that has a center for neurological movement disorders and perhaps find a neurologist that knows a little more about OT. Finding one is not easy!! Yes, we are a tremor disorder but we are defined as a separate entity. Clonazepam is one of the medications recommended but there is nothing that makes our symptoms go away completely it only eases the intensity of them, I have found something is better then nothing.
Enjoy our OT community, Gloria
Re: Orthostatic Tremor - Irish Suffers?
Hello Gloria
Thanks for your reply and your concern. I am afraid that with the pathetic health care system we have in this country, my problem would be considered bottom of the list of priorities. Finding and being able to go to a centre for neurological disorders would be about as easy as going to the moon! However I will persist in "pestering" my doctor ( the neurlogist said she does not need to see me again - even though I paid her quite a large fee for a 15 min visit) to see if there is something that suits me . So the battle begins!
I realise on reading the various posts on this web site that my problem is mild but my fear is that it will get worse even before it is properly understood.
Thanks again
Slan agus beannacht
Catherine
Thanks for your reply and your concern. I am afraid that with the pathetic health care system we have in this country, my problem would be considered bottom of the list of priorities. Finding and being able to go to a centre for neurological disorders would be about as easy as going to the moon! However I will persist in "pestering" my doctor ( the neurlogist said she does not need to see me again - even though I paid her quite a large fee for a 15 min visit) to see if there is something that suits me . So the battle begins!
I realise on reading the various posts on this web site that my problem is mild but my fear is that it will get worse even before it is properly understood.
Thanks again
Slan agus beannacht
Catherine
Re: Orthostatic Tremor - Irish Suffers?
hello to ale and catherine have only now discovered your messages its nice to hear from someone from england and kerry my experience is very similar to yours my doctor told me i was suffering from anxiety which i do only in recent three years up to then i could go anywhere and do whatever i wanted without this awful feeling anyway after i insisted that this tremor was a very physical thing and not my imagination he referred me to a neurologist who after a brain scan said i had ot my doctor had never heard of iy it i am not very good on the computer aas i am noe 79 yrs but only feel young inside i was prescribed rivotril but i only take it at night low dose 0.5 mg but it still leaves me feeling slowed down with the result that i do not take enough exercise and have put on a lot of weight of course christmas good food did not help but new year resolutions are starting ha ha i tried coming off rivotril but the tremor started again i was using a walking stick but a visiting nurse recommended a walking frame which i find a great help altho at first i was embarassed to go out with it but it is great when standing in queues it gives great support and i can go walking with no bother i havent ventured into centre city yet as it is very busy and i would need some of my family with me i do get back pain and leg pain buyt that could be the weight hope to hear from you both again happy new year agus slan agus beannacht go ciarrai o baile atha cliath
Re: Orthostatic Tremor - Irish Suffers?
hi to anyone who has clicked on today 10th feb. 2009 happy new year #
from sparrow dublin ireland weather not very good for walking as we have had some snow and frost but not as our neighbours in england they are really getting continuous snow and today rain and floods we are two great countries if we could have a roof put on 1
still on one dose of clonazapan at night controls body tremor but still have to use a walking stick and walking frame for longer walks dont know if its nervousness or the tremor but i depend on both looking forward to the spring when i will start getting out for some walks and lose some weight as i am becoming a couch potatoe and tv addict during the bad weather will say a prayer tomorrow 11th feb world day of the sick also feast of yhe lady of lourdes. bye for now slan agus beannacht from sparrow
s
from sparrow dublin ireland weather not very good for walking as we have had some snow and frost but not as our neighbours in england they are really getting continuous snow and today rain and floods we are two great countries if we could have a roof put on 1
still on one dose of clonazapan at night controls body tremor but still have to use a walking stick and walking frame for longer walks dont know if its nervousness or the tremor but i depend on both looking forward to the spring when i will start getting out for some walks and lose some weight as i am becoming a couch potatoe and tv addict during the bad weather will say a prayer tomorrow 11th feb world day of the sick also feast of yhe lady of lourdes. bye for now slan agus beannacht from sparrow
s
Re: Orthostatic Tremor - Irish Suffers?
hi to anyone who has clicked on today 10th feb. 2009 happy new year #
from sparrow dublin ireland weather not very good for walking as we have had some snow and frost but not as our neighbours in england they are really getting continuous snow and today rain and floods we are two great countries if we could have a roof put on 1
still on one dose of clonazapan at night controls body tremor but still have to use a walking stick and walking frame for longer walks dont know if its nervousness or the tremor but i depend on both looking forward to the spring when i will start getting out for some walks and lose some weight as i am becoming a couch potatoe and tv addict during the bad weather will say a prayer tomorrow 11th feb world day of the sick also feast of yhe lady of lourdes. bye for now slan agus beannacht from sparrow
s
from sparrow dublin ireland weather not very good for walking as we have had some snow and frost but not as our neighbours in england they are really getting continuous snow and today rain and floods we are two great countries if we could have a roof put on 1
still on one dose of clonazapan at night controls body tremor but still have to use a walking stick and walking frame for longer walks dont know if its nervousness or the tremor but i depend on both looking forward to the spring when i will start getting out for some walks and lose some weight as i am becoming a couch potatoe and tv addict during the bad weather will say a prayer tomorrow 11th feb world day of the sick also feast of yhe lady of lourdes. bye for now slan agus beannacht from sparrow
s
Re: Orthostatic Tremor - Irish Suffers?
Happy St. Patricks Day to all the Irish out there - just posted a message on main site about how I have changed drugs to great effect . But as it is Paddys Day will repeat it for all you Irish ( and anyone else of course) out there . Was on Clonazapan since first diagnosed with OT at beginning of Nov 2008. Found it to be pretty useless - just better than nothing -thats all . In mid Feb 2009 on recommendation of neurologist change to Mysoline (half of a 250mg tablet three times daily ) . Has improved things greatly - still a slight tremor when standing for a while but otherwise much , much better - if you are taking Clonazapan at the moment give this a go - by the way was origenally prescribed a full tablet thrice daily but this had adverse effects sot went back to the half and it's doing the job grand
Slan is Beannacht
Catherine
Slan is Beannacht
Catherine