The Orthostatic Tremor Forum (archive)

It has been about 3 years since I've last visited this forum. I was diagnosed about 11 years ago with OT. At the time my neurologist gave me Neurontin - which I took for one month before deciding I would rather try natural treatments. I was a little creeped out by the idea of missing a dose and having a seizure - I had 3 elementary aged kids and a very active lifestyle. I weaned myself off the Neurontin (which by the way had helped significantly). I have not taken any meds since.

I have tried MANY things and most have given me slight improvement. But collectively, I have experienced significant results. I can now stand for 20 minutes or so with only the heavy feeling in my legs - not tremors. I can climb ladders and paint, vaccuum, hang clothes in the closet, cook dinner, and wait in the check-out line at the grocery store. The are are times when I feel much better and times when I relapse a bit and have tremors after 5 minutes of standing. But the relapses seem to always revolve around lack of adequate sleep, too much caffeine, and hormonal cycles.

These are the things I have tried over the years which have given me positive results: antioxidant rich foods (blueberries, green veggies), blue-green algae tablets, yearly detox with a boxed kit from the health food store, exercising the quads (so difficult at first - squats, lunges, etc...), hot baths, limited sugar intake, manganese supplements, kinesiology (chiropractic), and here's a weird one: stand on one foot while brushing my teeth! (I developed that one myself because I found as the tremors started to go away - I had lost much of my balance).

I hope this can help a few of you - I was in bad shape when I was first diagnosed. I couldn't stand for more than a minute - I dreaded going to church and having to talk to people, my posture was suffering because I was constantly leaning on a counter or wall, and I had a very hard time with everyday activities like brushing my teeth at the sink, washing dishes, etc... I'd say I am 80 percent better most of the time. Keep trying new things - you never know what might help!!!

Amazing the improvements which you have had! Congratulations.

Where did you get the info about risk of seizures?

Lily

Have you developed these ideas yourself or had input also from a Naturalist or other professional?

Lily

My neurologist told me about the risk of seizures when he prescribed the Neurontin.

I got most of my info from other people who have tried natural remedies. I did see a homeopathic MD and he gave me the advice about antioxidants. My chiropractor told me about the manganese. He actually "reset" the memory in my quads and said the manganese gives the muscles the ability to hold that state. It is amazing how he did the "reset". He said my quads were over-firing even at rest. On a scale of 1 ot 10, most people have a muscle "rest" number of about 3 (1 being totally jello-like and 10 being in peak use - like a marathon.) My quads at rest are a 5 or 6. He actually worked to weaken the resting state so the corresponding muscles would not over-compensate: causing the tremors. All he did was tap the arm just beneath the elbow and then used a small laser light as an alternative to acupuncture. I did 3 of these treatments in one week and then took the manganese - I had great results!

How interesting!
Now to figure out how to try some of these ideas, especially about reseting the rest state.

Lily

I'm trying the Magnesium citrate supplements from Costco. . I have been taking 3 a day ( they are 150 mg. each ) So far so good, I've been able to stand longer and seem calmer. I take all 3 with dinner. It's only been 2 days so I'll keep you posted. I also bought Blueberry antioxident capsules but just started them so I know that the magnesium is helping so far.

Hi!

I've just recently discovered this site and so far CherylM's post is the most hopeful for me. I've been on Klonopin with not enough of an improvement to justify the side affects. When I discovered that taking this drug was also boosting my heavy metal loading (e.g. nickel and aluminum from the catalyst used to make it), getting off it was a no brainer. Getting off it safely was a slow process however. That coupled with the doctor's arrogance has only intensified my interest in finding a natural solution.

I would like to know how CherylM is currently doing, and would also like to ask for mor specifics on the chiropractic treatment and on the dosage of the manganese. I'm hoping for both our sakes that you are still doing well.

My sincere thanks to Gloria for organizing this wonderful source of support and information.

With respect and sincerity,
EdP1946

EdP1946 wrote: .... and would also like to ask for mor specifics on the chiropractic treatment and on the dosage of the manganese.

Hi there,
I suggest that CherylM did not mean a chiropractitioner but a chinesiologist (she also mention this in the first entry). The treatment she describes is 100% chineseology in my experience. This is a very interesting therapy for sure and seeing one could be very worth while.
I am grateful to you EdP for having brought this thread to surface.

Best regards
Golfnut (I am much better after homeopatic treatment and you can read about that in my "diary thread")

At Golfnut's suggestion I started seeing a Chinese accupuncturist about eight weeks ago and started noticing some subtle improvements in my stability. About three weeks later, I violated the cardinal for engineering and changed multiple variables in the same experiment.

The new variable is extra virgin coconut oil. According to Dr Mary Newport there are at least 180 out of 200 anecdotal reports of neurodegenerative diseases being benefited by the consumption of coconut oil. You can get all the details in her book "Alzheimer's Disease - What If There Was A Cure". For a quicker read, you can visit her blog at ...

http://coconutketones.blogspot.com/

At the top of the page there is a list of links to YouTube clips on the subject. Further down the page there's a link to news report conducted by the 700 Club.

What if any effect has this stuff had on me? I have had fewer bad days of instability and walking like I've experienced a stroke. My hand writing is as legible as it was seven years ago. Please note that if fail to get enough coconut oil, the benefits disappear pretty quick so this IS NOT A CURE, but it seems to help. And the only side effect that I experienced were fleeting headaches that came and went for about 10 days. Take it slow and watch for changes in bowel habits, headaches, etc.

Best wishes,
Ed P