Hello everyone!
my name is erika and I have been diagnosed with OT for several years now and I am only 23. Doctors had a really hard time diagnosing what it was. By the time a neurologist figured out what it was my OT was so progressed. So, they put me on topamax and clonezapam. I was walking with a cane (I had lost most of my memory).....and eventually was in a wheel chair. BUT, I started to take these minerals and vitamins....and slowly slowly it started to help. Today I am not taking any medication and I am walking by myself. My OT is still there but under control and my tremors are minimal. So, basically I just wanted to let everyone know that there are tools out there that will help you as opposed to the medications that the doctors put you on that most of the time cause more harm than good.
ALTERNATIVE ways for Controlling OT!!
Moderator: gloria
Alternatives
Hi Erika
I was pleased to hear that you are now walking unaided. Can you advise what minerals and vitamins you take? How was your memory affected as you say most of your memory had gone, was that as a result of taking the clonazepam and topomax?
Sue
I was pleased to hear that you are now walking unaided. Can you advise what minerals and vitamins you take? How was your memory affected as you say most of your memory had gone, was that as a result of taking the clonazepam and topomax?
Sue
Hi Sue,
These minerals that I take contain 77 minerals in a bottle. They are plant derived and were found in Utah. In addition to the minerals I take vitamins, EFA (essential fatty acids) which also helped.
In regards to my memory.....The neurologist said that my OT was so progressed (like he has never seen before) so, as a result my memory was affected as well. He said my case was very rare.(So rare in fact that they video taped me) Apparently, I had developed OT at a very young age just that the doctors were unable to diagnose it. However, taking the topamax as well did not help either as that causes memory loss too. It also affected my vision. So, I cannot tell you how happy I am that I am off that medication as I truley beleive it does more harm than good. I feel that I was given a second chance at life!!!
Erika
(edited by admin)
These minerals that I take contain 77 minerals in a bottle. They are plant derived and were found in Utah. In addition to the minerals I take vitamins, EFA (essential fatty acids) which also helped.
In regards to my memory.....The neurologist said that my OT was so progressed (like he has never seen before) so, as a result my memory was affected as well. He said my case was very rare.(So rare in fact that they video taped me) Apparently, I had developed OT at a very young age just that the doctors were unable to diagnose it. However, taking the topamax as well did not help either as that causes memory loss too. It also affected my vision. So, I cannot tell you how happy I am that I am off that medication as I truley beleive it does more harm than good. I feel that I was given a second chance at life!!!
Erika
(edited by admin)
Forum Rules
Hi Erika,
The forum rules don't allow the posting of advertisements or commercial solicitations on the OT forums. Forum rules can be found at:
http://www.orthostatictremor.org/phpBB2 ... c.php?t=37
We are aware of the Multi-Level-Marketing (MLM) programs of many of the vitamin/mineral companies and whereas there have been many claims of such companies we think that it would be best to use the forums for the open sharing of information without any conflict of interest. Thank you for understanding.
regards,
admin
The forum rules don't allow the posting of advertisements or commercial solicitations on the OT forums. Forum rules can be found at:
http://www.orthostatictremor.org/phpBB2 ... c.php?t=37
We are aware of the Multi-Level-Marketing (MLM) programs of many of the vitamin/mineral companies and whereas there have been many claims of such companies we think that it would be best to use the forums for the open sharing of information without any conflict of interest. Thank you for understanding.
regards,
admin
Hi Erika
No need to apologize, and I appreciate the sharing of information on the forum. Our goal is just to keep our forum open and safe for the visitors. This is truly a non-profit site, we don't ask for donations, sponsorships or advertisers and hopefully that adds to the open atmosphere and comfort level for all participants.
I'm always pleased with the helpful, caring and knowledgeable responses that can be found on the OT forum and that is what is important.
best regards, and thank you to all of the OT Resource members that participate and add to the true value of this site,
admin
I'm always pleased with the helpful, caring and knowledgeable responses that can be found on the OT forum and that is what is important.
best regards, and thank you to all of the OT Resource members that participate and add to the true value of this site,
admin
Question
hello admin,
I have a question for you. When I started to talk about the minerals I take which helped me get back on my feet and improved the quality of my life......why is that taboo???? When others discuss what medication helps them and what they are taking down to the mg that is considered to be accetable...but when people ask me to tell them what minerals I take that is unacceptable and you edit my entry. I don't find this right. The pharmacutical industry puts pills out there that have so many side effects. Does more harm than good. I have actually found something concrete that can help people BUT BECAUSE IT IS NOT CONSIDERED TO BE MEDICATION TO YOU I AM NOT ALLOWED TO TALK ABOUT IT. I THOUGT THIS SITE WAS ABOUT HELPING PEOPLE WITH THEIR OT. I LIVED IT IN THE WORST POSSIBLE WAY AND I AM SO MUCH BETTER. WHY CAN I NOT SCREAM IT OUT TO ALL SO THAT EVERYONE COULD HAVE THE SAME CHANCE AS I HAD AND HAVE
ERIKA
I have a question for you. When I started to talk about the minerals I take which helped me get back on my feet and improved the quality of my life......why is that taboo???? When others discuss what medication helps them and what they are taking down to the mg that is considered to be accetable...but when people ask me to tell them what minerals I take that is unacceptable and you edit my entry. I don't find this right. The pharmacutical industry puts pills out there that have so many side effects. Does more harm than good. I have actually found something concrete that can help people BUT BECAUSE IT IS NOT CONSIDERED TO BE MEDICATION TO YOU I AM NOT ALLOWED TO TALK ABOUT IT. I THOUGT THIS SITE WAS ABOUT HELPING PEOPLE WITH THEIR OT. I LIVED IT IN THE WORST POSSIBLE WAY AND I AM SO MUCH BETTER. WHY CAN I NOT SCREAM IT OUT TO ALL SO THAT EVERYONE COULD HAVE THE SAME CHANCE AS I HAD AND HAVE
ERIKA
Hi Erika
Hi Erika,
The forum is a great place to discuss anything that helps. And, certainly I would never think to discount the effects of alternative methods and products. So the problem wasn't that "IT IS NOT CONSIDERED TO BE MEDICATION". I applaud anything that could help with OT, alternative or traditional.
The problem occurred when you posted limited information about the product and then requested for readers to contact you directly to "find out more information" (that was the only part that was edited from your post). That is where a problem may arise and could introduce a conflict of interest. Please feel free to post any and all information about what has helped you, brand names, dosage whatever, just as others have posted their information. By putting information about what may be helping, without requesting to be contacted reduces any conflict of interest by someone who may benefit from selling products. I apologize, but some rules were needed to establish a safe environment, and it was not meant to censor anyone, the rules were meant only to restrict the use of the OT Forum as a vehicle for advertising. Rules are never perfect, but often necessary.
" I THOUGT THIS SITE WAS ABOUT HELPING PEOPLE WITH THEIR OT."
Hopefully the visitors of the forum benefit from the open environment of this website, the sharing of information, discussions and the work that is necessary to keep it up and running.
"WHY CAN I NOT SCREAM IT OUT TO ALL SO THAT EVERYONE COULD HAVE THE SAME CHANCE AS I HAD AND HAVE."
Please do, that is what the forum is for.
regards,
admin
The forum is a great place to discuss anything that helps. And, certainly I would never think to discount the effects of alternative methods and products. So the problem wasn't that "IT IS NOT CONSIDERED TO BE MEDICATION". I applaud anything that could help with OT, alternative or traditional.
The problem occurred when you posted limited information about the product and then requested for readers to contact you directly to "find out more information" (that was the only part that was edited from your post). That is where a problem may arise and could introduce a conflict of interest. Please feel free to post any and all information about what has helped you, brand names, dosage whatever, just as others have posted their information. By putting information about what may be helping, without requesting to be contacted reduces any conflict of interest by someone who may benefit from selling products. I apologize, but some rules were needed to establish a safe environment, and it was not meant to censor anyone, the rules were meant only to restrict the use of the OT Forum as a vehicle for advertising. Rules are never perfect, but often necessary.
" I THOUGT THIS SITE WAS ABOUT HELPING PEOPLE WITH THEIR OT."
Hopefully the visitors of the forum benefit from the open environment of this website, the sharing of information, discussions and the work that is necessary to keep it up and running.
"WHY CAN I NOT SCREAM IT OUT TO ALL SO THAT EVERYONE COULD HAVE THE SAME CHANCE AS I HAD AND HAVE."
Please do, that is what the forum is for.
regards,
admin
Hi Erika,
I am interested in finding out what you are taking. I have also experienced great relief in the form of natural supplementation. I wonder if we are taking the same thing. The product I take is a glyconutritional --but I will withhold the company name so as not to spark any more controversy. I have almost completely recovered and want to shout it out to everyone who has lost hope and given in to this syndrome. My life has returned to normal and I have no more retrictions from the OT!!!!!! I have suffered for 6 long years and now I don't have to worry about it anymore!!! I posted a note on fighting OT the natural way if you want to know exactly what I am taking and what lifestyle changes I made.
I know exercise and diet has played a key role in my recovery but the supplementation cannot be discounted. I am a firm believer now, as you are, that there are alternatives to traditional meds.
Thanks for your testimony.
Standing steady and strong,
Cheryl
I am interested in finding out what you are taking. I have also experienced great relief in the form of natural supplementation. I wonder if we are taking the same thing. The product I take is a glyconutritional --but I will withhold the company name so as not to spark any more controversy. I have almost completely recovered and want to shout it out to everyone who has lost hope and given in to this syndrome. My life has returned to normal and I have no more retrictions from the OT!!!!!! I have suffered for 6 long years and now I don't have to worry about it anymore!!! I posted a note on fighting OT the natural way if you want to know exactly what I am taking and what lifestyle changes I made.
I know exercise and diet has played a key role in my recovery but the supplementation cannot be discounted. I am a firm believer now, as you are, that there are alternatives to traditional meds.
Thanks for your testimony.
Standing steady and strong,
Cheryl
please do post the company name : )
Hi Cheryl,
I'm glad to hear that you have found something that is working for you!
I'm sorry that this posting went off in different tangents. The comments that I had made were an attempt to keep everything in the "open", and to ask that information be posted on the forum, not the opposite. It had nothing to do with the validity of supplements (which I take daily).
So, if you don't mind, I would think that everyone would like to hear about what you are taking, including brand-names etc. Please feel free to post any information that you wish. This is your forum : )
regards,
admin
I'm glad to hear that you have found something that is working for you!
I'm sorry that this posting went off in different tangents. The comments that I had made were an attempt to keep everything in the "open", and to ask that information be posted on the forum, not the opposite. It had nothing to do with the validity of supplements (which I take daily).
So, if you don't mind, I would think that everyone would like to hear about what you are taking, including brand-names etc. Please feel free to post any information that you wish. This is your forum : )
regards,
admin
Here are the supplements I have taken:
SUN Chlorella A tablets - I started with 10/day and worked up to 24/day (These tablets can be purchased in bulk over the Internet and are very small in size.) This is a powerful antioxidant and purifies the body of heavy metals and other toxins. As a bonus it also improved my digestion and took away the aches and pains in my back and neck. I stopped taking these in July but saw very marked improvement while on these supplements. I found that the Chlorella capsules and tablets sold in the health food stores were too harsh for my digestion and made me nauseated. The SUN brand has a broken cell wall and is easily processed.
Ambrotose powder or capsules. I currently take 2 capsules twice a day but more is better. (It is pricey but is all I can afford.) Ambrotose is a glynutritional (natural sugar) that allows cell to cell communication and repair. It can be purchased online through Mannatech.com. I began taking this in July and within weeks my tremors were gone. My husband is currently taking it for a neurological condition called CIDP where the lining of his nerves (myelin sheath) has been breaking down. He has very mild symptoms compared to most and we are seeing amazing improvement in his syndrome as well. He is taking 1 tsp. of the powder twice a day.
Eat Healthy! Stay away from processed foods especially sugar. Eat lots of fruits and vegetables. Avoid caffeine.
Exercise Walking briskly followed by a period of time when you can elevate your legs. At first my legs were like Jello and throbbed miserably after exercising. I couldn't do anything afterward for several hours. Now it's easy and I don't need to rest afterward. Try taking a hot bath to purge impurities from your system ever further. (Just make sure you are going straight to bed afterward!)
If I were to give a number to the improvement I feel it would be 98%. I am able to function like normal again. The only times I still feel heaviness in my legs are mornings (if I don't exercise) and the week before my monthly cycle. But even with the heaviness, I can still stand unassisted and I don't have tremors. It is bearable compared to the years I spent groping for the nearest wall.
I have been able to photograph 3 weddings this summer- without draping my body over the tripod. In fact I used a monopod (a camera on a stick) for the last wedding. I can vacuum, do yard work, cook without leaning on the counter and many other tasks that were much to taxing before. I have found I still lean on things out of habit and am working on standing erect.
I hope at least one other person can try this. Don't expect immediate results - this process has taken me over a year but it is well worth the effort.
Cheryl
SUN Chlorella A tablets - I started with 10/day and worked up to 24/day (These tablets can be purchased in bulk over the Internet and are very small in size.) This is a powerful antioxidant and purifies the body of heavy metals and other toxins. As a bonus it also improved my digestion and took away the aches and pains in my back and neck. I stopped taking these in July but saw very marked improvement while on these supplements. I found that the Chlorella capsules and tablets sold in the health food stores were too harsh for my digestion and made me nauseated. The SUN brand has a broken cell wall and is easily processed.
Ambrotose powder or capsules. I currently take 2 capsules twice a day but more is better. (It is pricey but is all I can afford.) Ambrotose is a glynutritional (natural sugar) that allows cell to cell communication and repair. It can be purchased online through Mannatech.com. I began taking this in July and within weeks my tremors were gone. My husband is currently taking it for a neurological condition called CIDP where the lining of his nerves (myelin sheath) has been breaking down. He has very mild symptoms compared to most and we are seeing amazing improvement in his syndrome as well. He is taking 1 tsp. of the powder twice a day.
Eat Healthy! Stay away from processed foods especially sugar. Eat lots of fruits and vegetables. Avoid caffeine.
Exercise Walking briskly followed by a period of time when you can elevate your legs. At first my legs were like Jello and throbbed miserably after exercising. I couldn't do anything afterward for several hours. Now it's easy and I don't need to rest afterward. Try taking a hot bath to purge impurities from your system ever further. (Just make sure you are going straight to bed afterward!)
If I were to give a number to the improvement I feel it would be 98%. I am able to function like normal again. The only times I still feel heaviness in my legs are mornings (if I don't exercise) and the week before my monthly cycle. But even with the heaviness, I can still stand unassisted and I don't have tremors. It is bearable compared to the years I spent groping for the nearest wall.
I have been able to photograph 3 weddings this summer- without draping my body over the tripod. In fact I used a monopod (a camera on a stick) for the last wedding. I can vacuum, do yard work, cook without leaning on the counter and many other tasks that were much to taxing before. I have found I still lean on things out of habit and am working on standing erect.
I hope at least one other person can try this. Don't expect immediate results - this process has taken me over a year but it is well worth the effort.
Cheryl
alternative treatment
I have read with interest Erika and Cheryls comments regarding the medication Ambrotose and decided to search the net to see what I could find out about it. Well there are many sites about Ambrotose to look at, I came across two that was of concern to me, one site was from Australia and the other site from New Zealand (Aids Council), both sites stated that Ambrotose came about through a religious group who said that it came from God, and both said that it is made up of 8 different sugars. It is also sold though a form of pyramid selling. The New Zealand government were monitering the selling of this product. Also did a check of prices on well known Antioxidants and Ambrotose and I found $30-40 Aust for well known medication and $195 Aust for Ambrotose.
I also have a close friend in Australia and she is in a self help group and all are taking antioxidants because of breast cancer, all of the women are taking different types of meds, but one lady is using Ambrotose and is constantly pressuring the other members of the group to to take Ambrotose, I must add she is selling this product. All the women in the group have resisted this pressure and are happy with their own meds.
I am happy for Erika and Cheryl that Ambrotose has worked for them, but feel before any of us use a product its worth doing a lot of homework researching it first or checking with your doctor. regards Lorna.
I also have a close friend in Australia and she is in a self help group and all are taking antioxidants because of breast cancer, all of the women are taking different types of meds, but one lady is using Ambrotose and is constantly pressuring the other members of the group to to take Ambrotose, I must add she is selling this product. All the women in the group have resisted this pressure and are happy with their own meds.
I am happy for Erika and Cheryl that Ambrotose has worked for them, but feel before any of us use a product its worth doing a lot of homework researching it first or checking with your doctor. regards Lorna.
I know Ambrotose is pricey - I stated this in my last transmission. As a point of reference, I am NOT selling it or anything else for that matter.
The bulk of my recovery has been due to the lifestyle changes I have made, the exercise, diet and vitamin supplementation. I achieved great results from the Chlorella and have just recently switched to Ambrotose. I don't mean to imply that the Ambrotose is the cure to OT after years of having this affliction. In fact, it is only a very small piece of the puzzle. I don't mean to suggest that anyone that just taking this sugar supplement will take all the symptoms away.
This journey has been very long and difficult at times and I would be doing a discredit to all of you to claim any one thing has cured me. I am still in the process of regaining my health. It is hard. Self-discipline is not my strong suit. Please understand I was only sharing the total program which seems to be working for me.
Cheryl
The bulk of my recovery has been due to the lifestyle changes I have made, the exercise, diet and vitamin supplementation. I achieved great results from the Chlorella and have just recently switched to Ambrotose. I don't mean to imply that the Ambrotose is the cure to OT after years of having this affliction. In fact, it is only a very small piece of the puzzle. I don't mean to suggest that anyone that just taking this sugar supplement will take all the symptoms away.
This journey has been very long and difficult at times and I would be doing a discredit to all of you to claim any one thing has cured me. I am still in the process of regaining my health. It is hard. Self-discipline is not my strong suit. Please understand I was only sharing the total program which seems to be working for me.
Cheryl
I too encourage you to do your research before taking anything- even if it is a vitamin supplement. Also research the current meds you are on. I chose to pursue a natural approach to fighting OT because I was learning just how harmful long term medications can be to my body. Over time, they become toxic and we become immune to their effects.
As to the origin of the Ambrotose, yes it is extracted from a plant. Depending upon your belief system you get to choose where you think plants come from. I do believe God created plants (and animals and humans for that matter). But if you believe all life came from primordial soup than you can say Ambrotose and apples and oranges came from the same basic soup recipe. My point is, I don't think religion should play a part in deciding which supplements will work for you. Maybe we are lacking certain sugars in our diets, maybe not. But I was willing to try.
Regarding the cost, you have to consider other factors. For instance, I was spending $50 per month on Nuerontin. The dosage was continually increasing and I'm sure I'd be paying more by now if I were still taking it. My doctor's visits are $25 each and I still supplemented with vitamins at the health food store - about $30 per month. I spent money on over the counter pain meds for the achiness, I shopped as quickly as I could regardless of the price because I just wanted to get out of the store, I bought a lot of drive-through fast food because I didn't have to get out of my care or cook. All in all I averaged $90 - $120 a month fighting OT the traditional way.
Now I spend $60 per month on the Ambrotose, and much more on my groceries since I purchase organic fruits and vegetables and buy meat without hormones. I haven't seen a doctor in over a year. I am probably spending the same amount.
Cheryl
As to the origin of the Ambrotose, yes it is extracted from a plant. Depending upon your belief system you get to choose where you think plants come from. I do believe God created plants (and animals and humans for that matter). But if you believe all life came from primordial soup than you can say Ambrotose and apples and oranges came from the same basic soup recipe. My point is, I don't think religion should play a part in deciding which supplements will work for you. Maybe we are lacking certain sugars in our diets, maybe not. But I was willing to try.
Regarding the cost, you have to consider other factors. For instance, I was spending $50 per month on Nuerontin. The dosage was continually increasing and I'm sure I'd be paying more by now if I were still taking it. My doctor's visits are $25 each and I still supplemented with vitamins at the health food store - about $30 per month. I spent money on over the counter pain meds for the achiness, I shopped as quickly as I could regardless of the price because I just wanted to get out of the store, I bought a lot of drive-through fast food because I didn't have to get out of my care or cook. All in all I averaged $90 - $120 a month fighting OT the traditional way.
Now I spend $60 per month on the Ambrotose, and much more on my groceries since I purchase organic fruits and vegetables and buy meat without hormones. I haven't seen a doctor in over a year. I am probably spending the same amount.
Cheryl
Alternative treatment
Hi everyone!
I have read with interest the postings by Cheryl (and others) regarding alternative treatments for OT. It's great to hear of Cheryl's success and it gives us all some hope that this thing can be beaten, at least in part.
I think I have mentioned before that, due to the results of a hair mineral analysis test, I started to take a magnesium supplement and vitamin B6. I wouldn't say that this has neccessarily helped the tremor, but it has helped me to feel generally healthier and able to cope well with everyday life. I have also been investigating Ambrotose on the Internet, with mixed results! However, I have now bought some, and I'm going to try it for a couple of months (with an open mind) and see how I get on. I will of course let you all know if it has any beneficial effects on the OT. If it works, I'm quite willing to accept that it came from God - and thank him for it!
Just one question for Cheryl: How big a part do you think that the mercury toxicity played in your OT? Are you sure that it wasn't getting rid of your fillings that improved your condition, rather than the natural supplements? I know this is probably very difficult for you to answer, but I just wonder what your views are on it.
Best wishes to everyone. Keep smiling.
Lynda
I have read with interest the postings by Cheryl (and others) regarding alternative treatments for OT. It's great to hear of Cheryl's success and it gives us all some hope that this thing can be beaten, at least in part.
I think I have mentioned before that, due to the results of a hair mineral analysis test, I started to take a magnesium supplement and vitamin B6. I wouldn't say that this has neccessarily helped the tremor, but it has helped me to feel generally healthier and able to cope well with everyday life. I have also been investigating Ambrotose on the Internet, with mixed results! However, I have now bought some, and I'm going to try it for a couple of months (with an open mind) and see how I get on. I will of course let you all know if it has any beneficial effects on the OT. If it works, I'm quite willing to accept that it came from God - and thank him for it!
Just one question for Cheryl: How big a part do you think that the mercury toxicity played in your OT? Are you sure that it wasn't getting rid of your fillings that improved your condition, rather than the natural supplements? I know this is probably very difficult for you to answer, but I just wonder what your views are on it.
Best wishes to everyone. Keep smiling.
Lynda