OT - Experienced over time; the Golfnut story

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owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: OT - Experienced over time

Post by owen-lynettepickles »

All the best Golfnut with your meeting with Dr Bain. I know how you feel about living in a small country where there is not the same resource/knowledge to assist with the condition. Coming from New Zealand where there are very few Neurologists, I just feel grateful that the first Neurologist that I visited was able to diagnose the condition within an hour. However, he could not offer me much advice except to keep walking which I try to do several times a week. I have the added difficulty of living on a remote Island 800kms off the coast of Christchurch (a city badly devastated by a major earthquake earlier this week) which makes access to medical assistance much harder. When my condition noticeably deteriorated during 2010 the General Practitioner (GP) here on the Island suggested that I contact the Neurologist in Auckland who originally diagnosed me in June 2009. The Neurologist suggested that I begin a course of Clonazepam, something I was loathe to do because of the known side effects. After discussions with my GP, I have decided not to take any medication in the mean time. I have resorted to using a walking stick at times for support, especially around my work place. While on holiday with my husband in Canada and Hawaii earlier this month, I found the stick gave me reassurance negotiating crowds, especially in airports and cities. I turned down wheelchair assistance within the airports until our return to Auckland International. It was very busy with a number of flights arriving at the same time, so the wheelchair was a blessing to get through the queues quickly. My husband has said that in future when we travel overseas, I should accept the wheelchair all the time, as it was far less stressful for me and also for him as I wasn't having to grab his arm all the time.

Kind regards
Lynette Pickles
Chatham Islands, New Zealand
podhorodeckisz
Posts: 15
Joined: Thu Sep 09, 2010 9:40 am
Location: Sandbach, UK

Re: OT - Experienced over time

Post by podhorodeckisz »

I had 6Hz coherent OT since 1988 (much milder than anyone on this site). Where it came from nobody knows although it has been linked to a cerebellar dysfunction which I've also had since then. As OT was first diagnosed in 1984ish it was not picked up in 1988 so it has taken me 23 years to get it diagnosed. My condition remained unchanged till 2 or 3 years ago when one of my legs started doing it's own thing. I shake a little more now and towards the end of last year Dr Bain spotted and diagnosed the OT component. I am only 41 now so am yet to learn what awaits me but certainly for many years things remained relatively static.
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time

Post by golfnut »

Dear all,
I had a very positive meeting with Dr Bain a couple of weeks ago. It's just so very nice to talk with someone that has a lot of experience with OT. As you know who has followed my thread, the doctor I have here at home in Sweden has only seen about 4-5 patients over a lifelong career! Today Dr Bain has some 60 patients I think, and that makes of course a huge difference.

The thing that made my spirits rise the most was his "forecast". I had sensed that my OT was getting much worse last year, and he told me that his experience is not a continued worsening of the tremors. He said that after the initial 2 years or so, after diagnosis and when the OT "settles in" (all of this is my words, not his - but I have his permission to write about the meeting here.) then the next 10 years show a much lesser worsening - almost none. So, that was indeed good news as I was prepared to hear that the OT was going to be worse every year.

Secondly he suggested that I reduce and quit the current medication. The drug I use ( a valproate) was not one of his favourites as it actually can induce handtremors and also is a hindrance to weight loss (weight loss being important, we know that. The less heavy we are, the less tremors). He had other drugs to suggest. We spoke of other things as well, but these are the general things that I find can be useful also to others.

Stopping the drug I use had already been an idea of mine. I thought about it around Christmas as I wanted to see "how I really am" also as I had a feeling the drug was changing me mentally, I have become a bit subdued somehow. Instead, at New Years, we actually increased the dosage as I was worse.

Back at home I discussed the situation with my doctor and she agreed we'd go in the opposite direction. I am now down from 5 pills a day, to 1. And - lo and behold - I feel much better. My legs are the same, trembling away, but "I" am better. My hands are steady, my mind clearer and, yes!!! I am losing weight again.

The trembling starts very quickly but at home and at work -this is not really a problem. Leaning on the zink washing up aso is the solution. In principle I have almost quit standing "free" without leaning on something. But, the golfing season is getting nearer and I do need to practise some swings before the snow melts. And that is going to be a challenge. Two-three shots and then rest will be the solution I think. We'll see...

Spring greetings,
the golfnut.
maddie
Posts: 3
Joined: Mon Apr 11, 2011 3:17 am

Re: OT - Experienced over time

Post by maddie »

My name is maddie I live in china . My histroy at age 48 while standing in line I noted my legs were shaking . That was the first time but like you I always liked to sit if possable.I am now 61 and can not stand still for more than 30 seconds so I look like I am dancing or I must lean on somthing.
My Doctor thinks it is because the 4th bone in my neck is growing into my spinal nerve, which makes my legs get tense and stay that way (tap my knee and my leg kicks strate out).
The effect is my legs look very good :lol: but feel very tired and they are getting stiffer. So I strech every day and take Baclofen and a chinese herb for circulation.
Last year I quit ice skating and can no longer write with a pen.
Tremors are much worse after exersize or excitement or too much cafine. Hope this helps, Maddie
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time

Post by golfnut »

Hello everyone,
the OT situation is for me not acceptable without any medication anymore. I can now only stand still for about 12 seconds before the tremors start, and after 20 sek they are severe and almost impossible to handle for example in the shower or standing in line at the supermarket. So I'm now going to try Clonazepam and see how that works on me. The Valproate worked well, but not in high doseage as I got sideeffects such as tremors also in the arms. So I'll try Clonazepam and see what happens. Apparently I might also be able to combine the two.. I feel a bit lie a guineapig - but I'm happy to try things in order to find what works best for me.

I'll let you know how what happens, but I suggest that you also try Valproate as it seems to be a positive drug for us with OT. I may go back to it if this Clonazepam does not help better.

all the best
the golfnut
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time

Post by golfnut »

Hello - time for a small update I think.

I am trying Clonazepam but have not sensed any change apart from tiredness. So I have, on my own, reduced the dose from 3 pills to only 2 - and that probably doesn't make any difference at all.. :-) But I want to be as free from med's as possible now. Because I am also trying akupuncture. I visit a chinese, very experienced and educated man, and this is very interesting. I have only been there 2 times yet, but the feeling is that I, immediately after treatment, is much better. Then the effect seems to go away over the next few hours or so. I'm not keeping too much track of how it works yet, as this is a treatment that needs patience and time and is very new to me. But 2 times a week I go there and time will tell, and you will know later on.

I have also tried bicykling for some other kind of excersise. It seems that the legs "dislike" this a bit, but I intend to keep it up for some time, Going on short trips, not too hilly as I find it gives a bit more heart-excersise than the walks I do during winter. And getting a bit more stamina is good.
So, a leisure-bikeride with a picknick seems to be the idea for this upcoming weekend.

As for golf, I CAN play - but putting is now pure chance more than anything else.. :-) I am glad to be able to be out on the course and try to see the positive in things despite becoming a "worse" golfer. And sloooow walking is definitively difficult and tiring.. So I speed along and then plop down on my stool to wait for the others and rest. :-)

Spring is definitively here, they leaves are all new and green, tulips are blossoming in my garden and life is nice to live!
take care everyone!
the golfnut
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: OT - Experienced over time

Post by gloria »

Hi! Golfnut: I'm a former golfer and as I read your note I see that you are forming ways of golfing that keeps you playing. With help and understanding from the people you golf with your participation is doable. I always encouraged my friends to read the website so they would better understand our situation. So keep on going, it is good for the mind and the physical challenge.
Gloria
lorna
Posts: 29
Joined: Mon Feb 09, 2004 8:28 am
Location: Victoria, Australia.

Re: OT - Experienced over time

Post by lorna »

Hi all, I was looking for all the posts on Lyrica but to no avail so decided to add my bit here. This was a trial I did myself and as we all know not all meds react the same way with all of us. I have been taking Lyrica now for 6 years, started on 75mg once a day, I was on this dose for about 2 years and then went to 150mg once a day. Last year my Movement Disorder doctor said to trial 225mg once a day, which I did for about 4 months and found no different in the tremors, so backed off again to 150mg once a day. Anyway about 5 months ago I decided to cut back to 75mg once a day to see what happened, no difference to multi doses, so now am only taking 75 mg per day, and coping ok.

But, because I decreased my Lyrica I lost 3kg, and that was sooooo good, also I found my stomach (which was really extended) was a lot better in size, yeh :lol: I also found all the excersie I do does not take off any weight (I ride a bike 6 kilometers each day), so am putting this down to my medication. And have come to terms with this.

I am a real shoe freek (my daughters call me Imelda), how many women cannot wear shoes with heels, I have been wearing flat shoes for years and drool over lovely shoes with mid heels and would love to be able to wear them. Heeled shoes and boots really put me out of balance when walking. Regards to you all, Lorna
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time

Post by golfnut »

Hello all,

I can report that after 9 acupuncture sessions I have gained several seconds standing time. I started with 10 and this is almost doubled. I will now have a break in the treatments and it will be very interesting to see if this improvement stays on - or if it fades while my doctor is in China. I have almost cut out other meds but will need some painkillers as my legs have started to ache a bit again. Minor problem. Not so minor problem is a slight depression; the issue of handling this all alone is not easy to face. But I have found help and will start sessions in the fall. One just have to get the help one needs!

Golfing still ok - hcp is up a bit, but I can be out there and some good day's even play well.

Enjoy the summer, or winter, depending on where you are on this globe of a golfball of ours,
the golfnut
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time

Post by Betty »

Hello Anne,

It has been a while since I have checked the Forum and even longer since I checked your writings.

I was hoping you would not decline, as you have indicated, but that seems to be 'the nature of the beast'.

You said you now experience tremors in your lower arms and hands; I experience the same thing and have for some time. My hands tremor to the degree it is difficult for me to write now, so I try to type whenever possible. I find I am now clumsy ~ I have never been clumsy in my life ~ but when I reach for things, or try to do certain tasks, I knock things over and that is very upsetting to me.

When one has always been very active; as you are, and as I was, I think it makes it even worse. I was also an avid golfer, but have been unable to play golf since 2005. I keep thinking I CAN do it, yet, I can't even stand for more than a second or two before I must find a place to sit or lean. Sitting, of course, is best, because when leaning for any length of time, I become 'frozen' and have great difficulty getting my legs to move. Fortunately, my husband always comes to my rescue and helps me to a chair.

I, and I think I speak for all here, will be very interested to hear the outcome of your appointment with Dr. Bain in London.

Good luck Anne, and keep playing golf as long as you are able.

Betty in Florida
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time

Post by golfnut »

Hello Betty,
if you scroll up you'll see my report from the meeting with Dr Bain which took place in March.
The arm and hand tremors went away when I stopped using the medication so that is now fine.

Since my last posting I have stopped all meds and I'm now free of chemicals (I think). I stopped as I wanted to try and live without. Today my standing time is about 10 sek and it is "liveable". It's quite amazing how much you can adapt. I'll be seeing a therapist in the fall to get some help in coping and also get ideas for products that can help at home. I might also get back to the acupuncture but I'm not sure. I think it helped to some degree, but I feel that just now - I simply want to live without too much involvement in OT - somehow.. I think you know what I mean.

Life, that has been very hard and dark for quite some time, has now balanced itself out and it isn't too bad. It is what it is and you just have to cope and make the best out of the situation you're in.

the golfnut
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time

Post by Betty »

Hello Anne,

I haven't been checking the forum as often as I did in the past; but have decided I really need to check more often for anything new.

I had not checked during March, so had not read the report of your meeting with Dr. Bain. It must have been quite an experience to see a neurologist who ACTUALLY has many OT patients.

I found what he told you regarding his 'forecast' as to how OT progresses very interesting.

"He said that after the initial 2 years or so, after diagnosis and when the OT "settles in" (all of this is my words, not his - but I have his permission to write about the meeting here.) then the next 10 years show a much lesser worsening - almost none. So, that was indeed good news as I was prepared to hear that the OT was going to be worse every year."

I wish I had the opportunity to have him see me; because I do not fall into his 'forecast'. I have been told by at least three neurologist, I indeed have OT, but I also have something else going on, and none know what it is.

I have digressed over the years since I found I have OT ~ which was December, 2003. I, too, have tried to become 'drug free', have stopped taking Klonopin, which is what I am on now, and even though it helps very little, I continue to take it because without it, I am unable to walk.

Walking for me is very difficult; my gait is awkward, but I continue to try to learn different ways of coping. I think that is what we all do; learn how to cope with OT.

I am pleased you have been able to stop taking any medication at all, and you are still playing golf. Even though you can't take much time over your putts; you are still out there enjoying the game. Hit a few for me next time you play!

You wrote:

"I feel that just now - I simply want to live without too much involvement in OT - somehow.. I think you know what I mean."

Yes! I do know what you mean. Somehow OT often seems to become our focus because it affects almost everything we do; but you seem to be coping very well.

I also understand how very hard and, at times dark, life can seem, but somehow we make the best of each day and, as you said, learn to cope and make the best of the situation we are in. It isn't always easy, but somehow, we do it. First and foremost, we must keep a positive attitude. I think we all try to do that.

Good luck to you, and I will check the forum more often for further updates.

Betty
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time

Post by golfnut »

So - about time for a new report...
After a summer mostly free from all meds, I started Clonazepam in August. After having gotten used to it (tiredness passed after a while) I realised this drug makes me completely anti alcohol! And yes, that might not be such a bad idea but - I'm not just prepared to loose that joy as well... Just 2 glasses rendered a splitting headache. Not fun. Also sleep seems to be affected.
Now I've reduced Clonazepam and is trying a mixture of Clonazepam and Ergenyl (mentioned earlier). However I also realise that the low dose of Clonazepam helped a bit.. So it's just to keep on trying to find something that works. Or -- be alcohol free when golfing as the extra seconds gained there did make a difference for the fun of the game. Decisions, decisions...

I have bought a folding cane, very pretty - dark green with flowerprint. It does'nt help standing, but it is very helpful in sending a signal to others that all is not ok. One of the difficulties about OT (no one can see you have a problem) is thereby reduced. I use it in shops and at client meetings and I find it very useful as it helps me asking for assistance without having to go inte lengthy explanations..
Huge relief.

Also just acquired today a hunting seat, three legged, quite high when extended and you can fold it and put it in a small bag for carrying. Now it has been added to my "tools". This will shortly be tried at the theatre and also at the cinema. I found that being in a crowd is extremely hard, and I hope this will help.

Else - life moves on...
Take care everyone,
the golfnut (50 rounds this year.... :-)
Anne
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time

Post by Betty »

Anne, I always enjoy reading your posts; they seem to touch on what most of us experience to some degree.

I have been on Clonazepam for quite some time, but also found I didn't like the side effecrts...so, I am taking myself off the medication, very slowly. I started in October, was taking 2 ~ 2mg. tablets daily. My neurologist suggested I split them and take 1/2 at 8:00 a.m., 12:00 noon, 4:00 p.m. and 8:00 p.m.

I have dropped the doses at noon and 4:00 p.m. and just take 1 mg daily; 1/2 in a.m. and 1/2 in p.m. The side effects are less but my tremors are worse. I have decided I would prefer to cope with more severe tremors (and they are severe) than the side effects. I hope to be off Clonazepam after the first of the year; we will see.

Keep us posted as to how you are doing, and keep playing golf!

Betty
golfnut
Posts: 184
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time

Post by golfnut »

News - again! :-)
After discussing with another doctor I have now turned to Gabapentin to try this out. Clonazepam helped, gave me some more seconds of standing time on the low dose. But it could not cope with a glass of wine. The doctor agrees that it's useful to try other medication as he, and I, believe a glass of wine is part of the good things in life... I can live without, sure - but I'm grateful he feels it reasonable to at least try another medication in order to find out what works best for me..
So now it's Gabapentin, 300mg in the morning and starting today also 300mg in the evening after a week's introduction. Headaches occur, but are fading..

Results? Seem to help a bit as well with standing time. And yes, it's possible to have a glass of wine without getting a splitting headache immediately. Hurray - so in joy I went a bit overboard and the result was that the day after - the legs were in a terrible state. I had no hangover - it wasn't that bad a party, but the alkocol consumed had completely taken away the medication's effect.
So - I've learned a bit more about how it works. The only way to know, it to try..

Now - some might disaprove of my writing about wine and alcohol. But I try to be as honest as possible about how my life is affected by OT. I'm a grown woman and yes, I do enjoy a drink now and then.

The cane mentioned in my earlier post is really a blessing. Having it shows for example new client's at meetings, that I have a problem. I can handle questions much easier as it becomes natural to explain it very quickly - or in more detail - depending on the situation. But without the cane, it was more difficult to start the conversation about me not being able to stand there and chat. I do recommend it - as a signal it really helps.

Today is cleaning day and I'm sitting around, or standing a bit vaccuuming my apartment. The good thing is that you really get some exercise; up and down, and that the small corners really get's dusted - you tend to see them when you are sitting on the floor!

The Golfnut who is looking out at this winter's first snow.. Wet and heavy as it's not cold at all.
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