OT - Experienced over time; the Golfnut story

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golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

Just a very quick note: this post will be enlarged later this week as I'm seeing a specialist - but it seems I have inflammations in the bursas on both sides of my pelvis/hip bone! The inflammation is probably due to strain put on muscles/tendons as I started using various muscles more this spring... Actually when learning to use by bottom better (sorry, can you say that?) when walking up stairs. Muscles that had been sleeping soundly for years..

But, let's see what the orthopaedist say on Tuesday as this is still a theory..


So your nuttiest one will be back!
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: OT - Experienced over time; the Golfnut story

Post by Di Di »

Hi Golfnut ....waiting to hear how you get on !! :)
I am out of town and most probably off line from Friday for 6 days !!.............a few postings back you said you would give swimming a go ...jogger belt, wading etc ? ....I still believe that is the best-est way to exercise, and stretch muscles evenly with out bearing weight , not so good I guess for our calcium and bones ....you can Google and get great ideas for core muscle `pool` exercises .

when ever I exercise on dry land , it wipes me out for the rest of the day so just don't do it ...as you have said our legs get a great work out just trying to stay up right peeling the potatoes :)

I find if I have a really busy day ahead ,I don't go to the pool and save myself for getting through that day ,which would be a piece of cake for `normal none OT people `.....I ramble , :(

would just love to hear from someone else about my pool theory....thanks DiDi NZ
golfnut
Posts: 192
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Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

So - the theory proved right and both hips have a "very nice" inflammation in the bursas. I've also had the hips x-rayed and there are nothing wrong with the joint itself, so it is indeed muscles and tendons and the "fastening" point onto the pelvisbone that is irritated and angry. And yes. it hurts!

I'll now see a physiotherapist specialising in orthopedy and I'm sure they will have interesting things to say and do. I'm due there next Wednesday.. and I'm told these things take quite a while to heal. So now I'm caught between two evils; having a problem standing and hurting when I sit!!!
:roll:

But it is what it is and there is nothing to it but getting on with it...

take care all,
your nut (who has not put even her toe in a swimmingpool yet... :) )
golfnut
Posts: 192
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Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

Have I become "one" with my OT??

Someone said to me, not too long ago, that it is not un-common for people with a dicease to "become one" with it. It was suggested that you identify yourself as the person with OT for example, making OT the primary thing about you.
I've been thinking quite a lot about this and realise it is true in my case. I seem to consider OT before anything else and I see myself as "the person with a problematic situation caused by OT", rather than seeing other aspects. Especially other aspects that are more positive!

I also realise that this way of thinking is a straight path back towards a depressed state of mind for me. As I think "I cannot do this anymore", "that will be so difficult", "it will be impossible to do due to OT" as examples, I'm impregnating every day with negative thoughts. But isn't it true that things are impossible due to OT?
Well, not really - I think I can reconsider the thoughts if I try..
If I try to change the thoughts expressed above, I see that it is not impossible - I just need to find another solution to the situation. I need to ask for help perhaps, or manage in another way, or change behaviour - but it is not impossible! There are solutions to be found to the everyday problems; but "only" if I (manage to) choose to see possibilities instead of obstacles.
And this is all easier writing down than actually doing!

Considering these thoughts, finding out if and how I can change if I decide to, are part of my journey. The journey where I try to figure out how I can improve my life and find a way to live that is better for me. Again - only me and mine (this is becoming VERY self-centered! :) ) as only you knows what is best for you.

I feel that if I can distance myself from OT and not allowing it to be the lion-part of me and my life, I'll be better off! I'll also see what else I can do to feel better.. maybe try something completely different?
We'll see what happens..

take care everyone,
your nut
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: OT - Experienced over time; the Golfnut story

Post by Di Di »

Hi Golfnut ...We are on line together ...:)
I do hope the distancing yourself from OT does not mean going off line and the forum ...We need you and your writings , your wisdom and insights ...
With out sounding like nagging ,you say try something different...go on, try the pool?
love DiDi
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

How do I, as OT'er, address "new" things that come along? Am I open to them, willing to try or to consider an alternative way - or am I sort of "stuck" with the "fact" that OT is 100% irreversible, chronic and progressive? I've thought a lot about this after reading the Paleo-thread.

I quote from Sean in the Paleo-diet thread:
"Let me be clear: we ARE NOT taking the position we have a cure for the orthostatic tremor (OT). The dietary intervention we followed and reduction of various medications gave us our result – while we are thrilled, it is anecdotal."

I appreciate how Sean describes what has happened, that is is anecdotal, it is only their story. My understanding is that they basically want to share it in case it might help others.

In Dave's reply in the same thread there is a demand for proof - but I do not read Sean’s story as anything but a story. There are, in my opinion, no claims, only their personal opinion that a change of diet has helped them. And this is a story that gives me "food for thought".
If a change of diet, whatever from and whatever to, can help someone reduce or eliminate their tremors - isn't that great? Even if it's only one person?

So - I'm thinking: the reason we get OT is, as far as I know, not known to anyone. I have heard many ideas varying from exposure to chemicals to side effects from surgery - or that "it just happens". So perhaps sensitivity to certain foodstuffs can result in some of us getting tremors? Perhaps there are other reasons; emotional, stressful situations that leads to some kind of over-load in the brain that triggers tremors?

I'm going to the library. I'm not interested in purchasing books, attending expensive seminars or "following a guru" - but I'm definitively interested in learning. I want to read more about research regarding food, nutrients and how they may affect my body. I need to learn more about a lot of things, expand my views. I want to change my position that OT is irreversible.

I want to try and be open to the following idea: as I cannot explain why I got it - perhaps I do not need to be able to explain how it went away (if it does)?

I'm a bit confused actually. It's easier in a way to simply accept, learn to live with, and have that sense of OT as a base to stand on. By starting to consider if there are ways and means to change something "that cannot be changed" the fixed status is suddenly not so rock-solid.. It is interesting, mind-boggling and a tiny bit scary as well.. But as said in an earlier post; I do not want to become my OT.

Thanks for reading my rambling,
your golfnut - now nuttier than ever.
:?
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time; the Golfnut story

Post by Betty »

Hello golfnut:

I always enjoy your writings, the always make one think.

One thing you address is; "the reaon we get OT"; like you, I don't think anyone knows exactly why, but I do feel STRESS plays a big part of it. I had several very stressful years when caring for my elderly parents and in laws as well as an aunt. It was during this time I first started experiencing the first signs of OT.

I would make excuses as to why things were happening; but over the years, as my OT got worse, there was no "making excuses"; I definitely had a problem. I finally found out I have OT in 2003.

Now it is just a matter of coping with situations as they arise.

Keep up the good work ~ I think all of us enjoy your postings.

Betty
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

Dear all,
this year starts differently than 2012. The reason is that I'm now completely free of OT-drugs. Just over a month ago I reduced my intake of Gabapentin drastically and since mid-December I'm completely off.

So how do I feel, and why did this come about?
I feel fine! My tremors are still here but reduced to a state that is actually better than as when I was on 1200mg/day of Gabapentin. This amazing situation has been brought on by treatment given to me by a homeopath. The medication actually brought on an immediate over-night change in my OT situation. After taking the medication I had a night of pain all over my body and the following morning an acute strange sensation that I could not pin-point immediately. But I gradually realised that the strangeness was that I could stand, free, witout support! For about a week after Nov 20th when this happened (while I still had some Gabapentin in my body I think) the tremors were completely gone and that was indeed quite a strange sensation. I am so used to adapt to tremors that it felt very confusing being able to stand! Today, a month later, I'm chemically free and shadows of the tremors are here - if I stand too long they come back. But the difference to not being able to manage at all, is amazing.

My homeopath had a rather interesting theory. She asked if I had lived in fear or other very strong emotional stress earlier in my life. I have and these strong feelings were suppressed due to the situation I was in. The homeopath suggested that as the normal biological reaction to intense fear is that the body shakes, and as I had, during a period of time, suppressed great fear and stress - then perhaps this fear now later in life "trickles out" as OT?
I have no other explanation to why her medication helped me so dramatically, so I have decided to feel comfortable with her theory: that strong suppressed emotion earlier in my life might have led to OT (sort of as an overloaded pressure cooker) and that by releasing some of the blocked emotions (pressure) my OT has been relieved.

It feels so strange and actually not all together easy. I imagined earlier that if my OT was improved to the better, it would be an easy change in life. But it has been quite hard to cope with "being better". This indicates how merged my OT become with “me”, the illness became not part of my life, but life itself so to speak. I am so accustomed to explaining (even sometimes before it’s needed) about OT that being better becomes confusing. Strange, isn’t it?!? And very interesting..

So what I find important in all this is to try and separate myself from OT. I am not OT! I am a golfnut that in some specific situation are affected by OT – and there is a huge difference. Now, being so much better I look forward to continuing working with my homeopath and with others and see if I can make the OT go away completely. But even if it stays as it is now, I’m so happy not to be on drugs and being able to manage!

Do I suggest you try talking to a homeopath? I'd suggest anyone to do anything you feel comfortable trying. My belief is that as we are all different, OT affect us differently and remedies be found in different areas for different people. On this forum we have at least the following (that I've found) one person helped by acupuncture, one by paleo diet and now me with a homeopath treatment.
No one knows (as far as I’ve understood) why OT occurs. The suppressed fear/stress feels like a reasonable explanation in my case and the truth is that the homeopathic therapy has made me dramatically better. I have no idea if this would help anyone else - you just have to consider if you'd like to try or not.

So on this happy note I wish all of you a wonderful new year,
I'll continue to tell you what happens to me!
Yours truly,
the nutty golfer.
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time; the Golfnut story

Post by Betty »

Hello Golfnut!

I enjoyed ~ as usual ~ your writing regarding your experience with homopathy. I feel whatever works for someone, is a step in the right direction.

If you are now off all medications, that's wonderful. As you said, we are all different, and what might work for one, might not work for another; but it would be worth a try. I am still on a low dose of Klonopin, but my tremors are getting worse. I know stress is a trigger, and I am tryng to control that.

I will be most interested to read your next post as to how you are doing. It gives us all hope....

Happy New Year to you and a better 2013 for all......

Betty
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

Dear Betty (and other readers),
thanks for your kind reply! I am still feeling so much better than before, it is very strange but of course very positive. The shadows of tremors that occur when I stand too long (over a minute of standing rigidly and stock still) reminds me that the OT is still there, but if I move normally there are no tremors at all. By moving normally I mean standing free without support, but moving a bit as you would normally do, reaching for something after a bit, taking a small step to put it back. It is not often you sdtand stock still in normal life. In any case it is indeed a huge change of lifestyle from before!

I am not taking any OT drugs and I realise my feelings are much closer to the surface again. I think Gabapentin has reduced all kinds of brain activity and I now "feel" more again, both happier and more easy to cry and be emotional. This feels good!

I do sincerely hope that other OT sufferers will embrace the possibility to give alternative therapies a try. I was indeed very sceptical before trying - I sensed that something as "severe and difficult as OT could not possibly be changed by simple things such as homeopathy or diets"!!! But, having tried and getting such remarcable results I do hope others will try as well.
As a matter of fact, I'm pleased that I have been diagnosed by two professors here in Sweden and also by Dr Bain in London. If not, I might easily be thinking that I have not had OT at all as OT is considered to be chronical and progressive and not possible to change. But diagnosed I am, and my OT has changed. I'm so grateful that I gathered my courage and tried something "strange".

Do take care everyone,
best regards
your golfnut
gloria
Posts: 826
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Location: New Jersey, USA

Re: OT - Experienced over time; the Golfnut story

Post by gloria »

Hello Golfnut:
I am always impressed with your thoroughness of thought when dealing with this event of OT in our lives. I understand clearly why you are trying the unconventional. I have OT for almost 30 years and have tried many different avenues because existing science does not have anything that is adequate. In my case I realize I must think out of the “ box” for answers too, to find things that will help my OT in combination with other health situations going on in my body . I’m delighted that you are getting results ! Your ex-golfer friend, Gloria
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: OT - Experienced over time; the Golfnut story

Post by Betty »

Hello Golfnut,

I must also tell you, I always enjoy what you write and how you are coping with your OT. As I have said, I feel anything one can do to help ~ if not harmful ~ go for it!

I have not tried any unconventional things yet....but since my OT is progressing so much more quickly than I like to admit, I am beginning to be open to more things.

I am now at the point I have great difficulty walking; go out very little and am exhausted when I do and return home. But....I have tried to accept this, and it isn't easy.

Thank you for your excellent reporting of what is going on with you and what you are doing to help the situation.

I agree with Gloria....I am delighted you are getting results and it is working for you.

Keep us informed.

Also...an ex-golfer,
Betty
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: OT - Experienced over time; the Golfnut story

Post by Di Di »

Hi ...like Betty and Gloria I really appreciate your openness and honesty ....part of me has every intention of giving the homeopathic therapy a go , sorting the stress levels and getting rid of past baggage !! Yesterday was stressful with mini family dramas and I realized my OT was really bad with new pain coming from nowhere !! I have been re reading the interviews on the forum and stress really is a trigger .
But I think it takes a lot of courage to pull off those invisible layers of band aids and expose and deal with whats underneath .
Off to my annual Bronze casting camp for 10 days tomorrow...this time last year I had just made contact with Gloria before I left ...went with printouts of OT to get my head round it all.
Have come a long way , coping well , but avoiding dealing with the stress side of things ,mainly I guess for not wanting to let others down ....Well...maybe that has to change .................
thanks Gloria ......onwards and upwards !! Didi NZ
owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: OT - Experienced over time; the Golfnut story

Post by owen-lynettepickles »

Hello Golfnut
Your situation today sounds very similar to mine now that you are off the Gabapentin. I've found that I can also cope standing (with legs astride) for more than a minute, then either need to touch something solid for support or find a leaner. I've been like this for nearly a year now, but do wonder if all the standing I now do has generated the extra pain I suffer in the tops of my legs, especially when it is cold. That is the reason I am moving to a warmer part of New Zealand - will start moving into my new house at the end of the month. Now that we are in the middle of a warm summer, I've hardly had any pain - just a bit over the last few days as I am staying with our daughter, son-in-law and three young grandchildren and I know that I'm doing extra round the house to help her out. Just have to remember to say no once I'm settled into my new house so that I don't overdo things. That will lead to more leg pain and cancel out all the good from moving to a warmer climate.

I haven't yet resorted to trying anything else (homeopathy or diet change), but it will be much easier to do such things now that I'm back on the mainland and have easier access to such things.

All the best.
Lynette (previously the Chatham Islands, soon to be Blenheim, New Zealand)
golfnut
Posts: 192
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Location: Sweden

Re: OT - Experienced over time; the Golfnut story

Post by golfnut »

Dear all - your input and warm words mean a lot to me - thank you!!

My latest angle on the OT-topic is to think of OT not as a syndrome or disease - but as a symptom. This, for me, changes things quite dramatically. If I can consider OT as an effect of something, and this something might perhaps be changed and OT as well as a result thereof.

I know by personal experience that the brain can do strange things. One such thing is "self-depravation of oxygen”. When I was on the brink of being “burned out” (is this what you call it?) I had a sensation of floating. It felt as if my feet were not on the ground at all. Very very strange feeling. My doctor at the time (this was early 90’ies) said that this floating feeling was one of the last warning-signals the brain sent before shutting down in a complete burn-out, the kind that take over a year to get better from. The brain actually deprives itself of oxygen, creating the strange feeling, in the hope that the “owner of the body” shall change his/her ways… I took the warning and managed to stop the dangerous road to burn-out, becoming merely "singed at the edges" so to speak. Since then I cannot manage stress at all. I get physically unwell at once - so the stress-management is a very imoportant part of my life now.

But back to the thought; if I consider that the brain might be using OT as a signal to me… there is indeed an opening for change and improvement. If I can let go of more supressed fear and also reduce the element of fear in future (fear, anxiety, worrying aso) perhaps I can improve the OT situation even more?
basically this means to me, that If I think of OT as an illness/disease – it is fixed. If it is a symptom/signal – it is more possible to change. It’s only words – but words carry quite a heavy meaning and influences my way of thinking. So - here I am just now.. thinking along new lines and moving forward again.

Take care everyone,
The nutty golfer
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