NEW TO OT: ALTERNATIVE THERAPIES/MEDS

[niasan]

Hi,
After a long process (taking over a decade) I have been diagnosed with OT. I was glad to finally have a diagnosis but now looking at the side effects of meds, I have some concern. The med that has been prescribed is clonazepam. I am concerned about the risks, side effects, addictions that are apparently commonplace in the information that is prominent concerning this drug. I am would like to know if there are any alternative (natural) medicines or physical therapies that help with OT. My flares have escalated in the past three years in intensity, longevity, and frequency. I do have good days with a minimum of problems. I am currently trying to stay active and do not desire to take any meds that would possibly curtail my activities due to drowsiness and lethargy. Thanks for any information that anyone can offer.

[maddie]

MY name is Maddie,
all ot meds. I have seen address the simtom not the cause so any way to work arround them is also good. For example do not stand still , plan how to move in each situation ,you look funny but hay! Make sure your legs get the blood they need as there seems a direct relation between tirdness and tremors. My Doc feels there are meny possable causes for ot . I saw a man get on the bus the other day he had a little folding stool he used as there were no seats left!!! Now I am planing to buy one!

[Di Di]

Hi ...I am posting this under new to OT....because I`m certainly that,diagnosed early this Janurary

I have been wading, stretching ,swimming in our local hot hydrotheropy pool every second day for the past two years .I well remember when I first started I had trouble with balance and keeping to a straight line ,and walking backwards was really tough,but I kept going back and it got easier ....
since my knowing I have OT ,I go daily...I know the saying `the truth is what works for you`
This is my truth to date
yesterday I met up with a fellow OT `Lynette from the Chatham Islands who found me via the forum , it was so good to talk with someone in the know!! thankyou all DiDi NZ.

[bobbinj]

I am new to this site, but not to OT. I was diagnosed about 3 years ago...and have been given various medications by my neurologist. Thus far, none have really worked and have had various side effects. I am still working with my neurologist in hopes of finding the right medication, however today I started an alternate treatment. I had my first accupuncture treatment. I was highly impressed with the hopefulness of the practicioner, and her claim to have helped several others with tremors. So....it is with great hope that I enter this new experience. I felt good after the first treatment, and actually did see a slight improvement. I was able to stand still for about 30 seconds before tremors set in again, and then...not as badly. I was told that not that many treatments would be needed for success....so I am definitely hopefull. I was told that warm daily bathes are great for leg circululaton and to keep my feet warm at all times. This could be just in my case, as she felt that my circulation was not great, and that massage and warmth were important. She also felt that wind effects tremors and to wear a scarf whenever out in the cold /wind.
So....this is my experience after one day. If you have had any experience with accupunture please do post and we can compare our progress.
Bobbi

[zivia]

Hi,
If you take a look under "Accupuncture...it works", you'll see that a few of us have tried accupuncture with varying results. I was going a couple of times a week for several months, with no improvement at all. For Dan it seems to have worked. I'd really be interested to see how you do. Good luck and keep us posted.
Rita

[bobbinj]

This is my second post...and it is after my second experience with accupuncture. I am learning a lot and seem to be seeing some effects. After my treatment this time I was able to stand still for at least a minute! For me....and probably most of you...this is sensational. I am ecstatic. This treatment was on both sides of my body and included some electrical stimulation. (interesting and not painful at all). I am now so enthralled that I am going to go 3 times a week. I am also going to be starting some Chinese herbs made expecially for me. So....since meds haven't really been successful I am proceding with this course. I am still continuing with my neurologist, of course. I would not just go holistic. I am not sure if I put this in my last post, so I will include it here...the accupuncturist suggests cooking with ginger to heat the body...and to try leg massages which are offered where I go for treatment. I have not yet done this, basically because the accupuncturist also massages my legs. She believes that a large cause of tremors is poor circulation and feels that this would help. I will keep you posted.

[golfnut]

Dear Bobbi,
I also tried acupuncture and felt it helped a bit at first, but then less. I hope your treatment is a success and I would not mind trying again later myself. The reason I stopped? My problem became pain. As the needles were placed in the exat same spot and I bruise very easily...

Anyway, I do feel that alternative things should be tried if you feel comfortable and confident. What we all know is that for any medication to help, one must have a positive feeling about it!

Good luck and keep us informed.
Best regards
the Golfnut

[bobbinj]

Thanks Golfnut. I also have been on clonazapam and requip. I had bad side effects from the requip and weaned off of it. Then my doctor suggested that I also wean off of the clonazapam. I was almost off of it when I had worsening of my tremors. It was awful...I thought that perhaps my diagnosis had changed. The doc feels that I was having withdrawal symptoms. Now she wants me to go back on the clonazapam until I reach a level where the tremors stop again. So...that is what I am doing. I'll let you know. I did not have any side effect from this med. but the effectiveness had worn off as I got used to it. We'll see how high a dose might help this time. I am still doing accupuncture...and am having a similar response that you had. It worked great at first, but now it doesn't seem to help. This could be because of the withdrawal symptoms I was having as I got off the meds. So I will continue accupuncture a bit longer and see what happens. It does hurt more now, and I am feeling more discomfort as the needles are placed. I am not sure how long I'll keep at it, but at least until I think that I have given it enough time.

[bobbinj]

Ok...I had problems with meds and my doctor has weaned me off of the requip and I only now take clonazapam. I have been going for accupuncture for a few weeks now and all of a sudden I am getting relief! I did not need to take any med until 1 PM for a few days this week, and my tremors are decreasing the rest of the day. I am cautiously ecstatic!! Maybe it is a fluke....maybe not. But, I do know that I will continue with the accupuncture until I can be convinced that it does not work. So far....the opposite is happening. Please contact me if you want any further information. For now...I am feeling like I could fly!

[dottiesport]

Hi, I have not posted anything on the form for quite some time. Wanted to wait and see what acupuncture was doing for me, I have been doing it for several months, twice a week but now once a week as insurance does not pay for it, and it gets costly. I have not seen any improvement but still not giving up. I will keep you posted. I was told by my doctor back in October 25th, 2011 that I have OT even though this has been going on for over five years, and every doctor telling me it was all sorts of things,but never was really tested but have all the stuff going on that everyone else has, not able to stand up without holding on for less than thirty seconds and not able to stand in lines, etc. I could not find anyone near where I live to do testing and the closest Mayo Clinic is four and a half hours away, finally found a doctor in Tampa, Florida,who suppose to be good and is with USF campus I cannot get an appt with her until August 6th, hoping she can give me some help after testing me. I am not on any meds as tried Clonazepan and gabapentin and neither helped but made me sleepy and like a zombie.Wonder if anyone found anything that helps.

dottie

[dottiesport]

I have gone back to my Neurologist Dr Zesiewicz Professor of Neurology in Tampa, Florida, as she has tried me on Gapapentin 100 mg and I had started at a low dose and up to 900 mg per day along with 1 propranolol 60 mg per day and do not seem to get any relief from the tremors at all, it feels the same as when I did not take anything. she was thinking of having me try a larger dose, but also mentioned a doctor in Gainsville, Fl called Dr Okun who does Deep Brain stimulation, sounds scary to me, has anyone heard of it also has anyone from the Gainsville, Fl area heard of Dr. Okun. I would appreciatae any feedback on this doctor also any feedback of any sort. I have looked up his profile and he seems to have excellent reviews but that is all I know about him. Hoping to hear from someone, maybe someone lives in the area that can help me, Gainsville is Three hours away from me as I live in Bradenton, Florida.

Dottie

[gloria]

Dottie:
If you would like to read some of the posting pertaining to DBS you can find them, but first login, then look up to the upper right hand corner of any forum page and you will see SEARCH, type in DBS. So far I have not found any favorable reports of any long term lasting cases that stopped OT Tremors. Gloria

[golfnut]

Hello Dottie,

I've been taking Gabapentin 3x300mg since January and just recently upped it to 3x400mg.
It helps me, not by making the tremors go away - but by making the feeling of the tremors "softer" and bearable. If I stand without support the tremors come almost at once, but I can stand it (!) for almost 45 seconds before I want to sit. So it helps a lot this way - but as said, the tremors are still there.

(edit in April 2013: the above post was written a week before I started my homeopath treatment in Nov 2012 and stopped using Gapapentin completely. The positive change came at once.. It feels strange that some months ago I needed to increase my use - and then I stopped completely! - end edit)

Best regards
the nut

[golfnut]

I have just posted in my diary-thread some interesting news.
I have seen a homeopath and this has drastically changed my situation. I'm no longer using Gabapentin, I can stand free without support for a bit and I manage! The tremors are still there, as shadows in the background if I push myself and stand too long. But I'm now in a similar (or a bit better actually) situation to the one I was in when using Gabapentin - so there is indeed a dramatic change to the better.

I'm not done with my homeopath treatment and I will keep you all posted as to what happens. But for a month now I'm adjusting to an almost normal life where tremors are not the main issue in the daily life anymore. So for me alternative therapy has given amazing results.
This does not mean it is a "cure-for-all" - this is only my personal story. But at least we (from this forum) now know of three happy cases; one helped by acupuncture, one by diet and me by homeopath treatment.
I sincerely hope we'll see more happy cases in 2013!

best regards
golfnut

[golfnut]

Hi everyone,
most OT'ers have problems just coping - and many suffer from progression of the tremors. So did I. But now, since December - I'm off all drugs and I have no problems with tremors! It sounds crazy but is true.
The homeopath drug I took three times in November 2012 (and have not touched since) has given an effect that lasts - or at least that has lasted until now.

I know I'm just an one-person case. I know homeopathy and energy medicine is very disputed. But for me it has worked wonders. I was so sceptic (and still am actually) but I can only admit that it has indeed given me relief from the tremors and I feel "normal" (or as normal as I will ever be! )

I just wanted to report this and if you want to know more, please feel free to contact me.

Best regards
golfnut