Your experiences with OT Medications

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

Lynda
Posts: 42
Joined: Sun Jan 25, 2004 10:37 am
Location: West Sussex, UK

Ambrotose

Post by Lynda »

Hi Donna,

I'm so sorry to hear that your OT has returned - it must be very frustrating for you when you had experienced some relief from it.

I have been taking two Ambrotose capsules a day for several months now (and no other medication) but unfortunately haven't seen any dramatic evidence of an improvement to my tremor. I have, however, noticed some changes. For example, I used to break out into a terrible sweat whenever I attempted to stand unsupported - but now that has greatly reduced, which makes life a lot more comfortable. Also I had suffered from a painful achilles tendon for a couple of years, and that is now completely better. I can only put these changes down to the Ambrotose - so I am keeping going with it and hoping and praying that I will see an improvement to the OT in time. It may help to take a larger daily dose but I'm afraid I can't really afford to do that at the moment. If you want to know more about Ambrotose (or order some) their website is http://www.mannatech.com. I hope this is of some help to you. Don't give up looking for answers to our problem!

Best wishes,

Lynda
hollang
Posts: 3
Joined: Wed Nov 16, 2005 9:07 pm
Location: Ridgefield, CT

Ambotrose Caution

Post by hollang »

While I'm glad to read of people who are finding benefit from whatever source they can find, I would sound a word of warning about some products. Ambrotose comes from a company, Mannatech, who has used research of questionable solidity. Here are some links with related information:

http://www.alslinks.com/HTML%20ALS%20Di ... 39.htm#(2)

http://www.caic.org.au/commercial/Manna ... tances.htm

There's no shortage of others.

I'm not saying there's anything wrong with this product, just the people should take care and carefully research any supplements or even prescription drugs before using them. It's usually been my personal experience that if a story seems too good to be true, it more often than not, is. :roll:
DEEmou
Posts: 21
Joined: Thu Mar 31, 2016 2:53 pm
Location: Northern Ireland

Re: Your experiences with OT Medications

Post by DEEmou »

Hi everyone, reading through these posts it seems many members that take Gabapentin are on quite a low dose, I have been presribed 3600mg per day of this medication, feel very fatigued much of the time,although on my 'very few better days' (less wobbly) I dont question is it the meds :?: I was told that the Gabapentin was prescribed to treat my O.T plus the severe migranes I was experiencing,I have also been experiencing sudden strong jolts particuarly in my legs mainly when Im in a sitting or lying position,has anyone any advice?
ALSO... does anyone on this site live in Northern Ireland? I would be keen to have someone closer to my hometown to keep in touch with and share an understanding of this condition....as few 'seem to get it' :roll:
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Your experiences with OT Medications

Post by gloria »

DEEmou:
The postings of the low doses of Gabapentin given to the other OT people you are referring to were the normal beginning doses for most OT people. As you have posted your situation is complicated with many different symptoms from the norm of OT. Gloria
Motherofviii
Posts: 3
Joined: Tue Mar 10, 2015 5:02 pm

Re: Your experiences with OT Medications

Post by Motherofviii »

I was diagnosed after a 3 year stint with a neurologist who finally referred me to another neurologist who told me I had OT and Migraine Associated Vertigo. (no migraine pain at all, thank the Lord) but I got double whammed.

Clonozapam gave me my life back. I never went up to the 1.0 mg he initially prescribed because I have one of the bodies that don't do well with drugs; I'm hyper sensitive to anything pharmaceutical and with the MAV, I needed to find my triggers and additives can be one among.

But a year and a half into the drug my body rejected it. Big rash, head to foot, breathlessness etc...so now, even with the slow 3 month reduction - 2/8's of a pill at this point, I feel its pull.

I've been doing a lot of research on supplements and herbs that have data that act like Clonozapam routing without crossing the blood brain barrier.

I've come across this wonderful supplement without any side effects derived from Milk peptides. Even if you're lactose intolerant the amount is only 1% milk so you still should be able to take.

It has been well tested; instead of going on, I'll post the link here. http://lactiuminfo.com/clinical-studies/
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Your experiences with OT Medications

Post by gloria »

Motherofviii: Very interesting different experiences with your meds, not the norm but you know your body chemistry and know how to search for your answers. Please keep us informed if you establish a procedure that is of help to you. Gloria
gardenlily
Posts: 18
Joined: Tue Apr 12, 2016 12:51 pm

Re: Your experiences with OT Medications

Post by gardenlily »

Since my initial diagnosis of OT a couple of years ago, I have been taking 0.5mg of Clonazapam twice a day(I also take 1/2 tablet mid-day) and some days my symptoms are a little better but other days, nothing seems to have helped. Initially my doctor prescribed clonazepam as 2 tablets in the morning and 2 tablets in the evening. Unfortunately, this made me into a rather "zombie-like" person, so we decided to go to the dosage I mentioned first.
My last visit to the doctor resulted in her prescribing Gabepentin in addition to the clonazepam but I am reluctant to begin the dosage for fear of "zoning out" once again.
Has anyone else been prescribed both these medications at once, and if so, how was your reaction to the combination? Did you find any more relief from the tremors at all or did things stay pretty well status quo?
Thank you for your help.
I hope everyone is keeping well, and that no one has been seriously affected by all the terrible storms occurring in the States and the Caribbean. Keep well, everyone!
lindainnd
Posts: 5
Joined: Wed Apr 13, 2016 9:48 pm
Location: Mandan, North Dakota

Re: Your experiences with OT Medications

Post by lindainnd »

Hi, this is lindainnd I take Clonazepam 0.5 tabs, two in am and 1 in pm. I also take Lamotrigine 100mg, 1 in am 1 in pm. When I wake up in am I feel shaky all over my body. I usually try to take meds. close to the same time each day, so once I take the meds it takes about 20 to 30 minutes before I can actually sit on a stole and hold a cup with liquid without spilling. Along with the OT I have Epilepsy. If my tremors are so severe I have a seizure. Since I have been first diagnosed with OT I just learn by experience what I can and can not do. The condition is to point now, where using a wheelchair is the only way of getting around. I do not know what the long-term will develop, I only hope for is a cure. I am sorry I am not able to give advice on any other meds. other then gab. which I had severe side effects. Take care. Just knowing we are not alone, is my efforts to keep going.
gardenlily
Posts: 18
Joined: Tue Apr 12, 2016 12:51 pm

Re: Your experiences with OT Medications

Post by gardenlily »

Thank you, lindainnd, for your response regarding your medications. I am sorry that epilepsy is added to your problems with OT. Has there ever been any suggestion of surgery to remedy the epilepsy or are medications the only solution for you?
There have been remarkable results from surgeries done for people with severe epilepsy these days.
It is an on going struggle with these OT symptoms, so I cannot possibly imagine having another more serious illness in the mix. I do hope you are able to continue to get around and maintain a decent quality of life, even though it takes different coping skills(as I and my extremely patient and helpful husband have discovered over the past few years).
Hope you have a good support system around you, and that you keep well.
LauraD
Posts: 2
Joined: Mon Apr 30, 2012 5:27 pm
Location: St. Louis, MO

Re: Your experiences with OT Medications

Post by LauraD »

Hi. I was diagnosed with OT 14 years ago. I was prescribed Primidone initially, which actually worked, but the side effects made me so sick I couldn't get out of bed, so had to stop that. Since then I have been taking Clonazapam. I take 1.5 mg before bed and 1 mg in the morning when I get up. Seemed to help a bit for awhile, but then I needed something more. So Propranolol was added. Was taking 80mg, but blood pressure dropped too low, so now taking 60mg once a day in the am. A few years ago I was diagnosed with Burning Mouth Syndrome and was prescribed Gabapentin for that and it has helped my tremors slightly. I take 300mg 3 times a day. I also was diagnosed with Fibromyalgia about 5 years ago, but anything I try to take for that makes my tremors worse. Not sure if it's the actual medicine making tremors worse or if it's just lessening the affects of all my other meds. Recently I was told my adrenal glands aren't functioning, so I was put on a natural adrenal tonic to boost my adrenal gland. Guess what...that made my tremors worse too. I guess getting some adrenaline going through my body just makes the tremors worse and again the meds conflict with the OT meds on both sides...can't get adrenal gland to function right and can't deal with worse tremors. One doctor said it's possible taking clonazepam all these years caused my adrenal glands to stop functioning. I'm at a loss as to what to do or try or not try. I can't "fix" anything, because too many things going on. I did try to go off the Gabapentin once, because I hate the side effects, but I had really bad withdrawals so started it again. The only thing my neurologist has come up with is increasing my Gabapentin (which I won't do) or adding in an anti-depressant, which makes me shaky and more tired. She also gives me as much Xanax as I want (low dosage) and suggests I take before I go out where I need to stand for any length of time, but that doesn't help much other than make me even more tired when added to everything else I take. Sorry this is so long, but if anyone has any ideas....HELP.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Your experiences with OT Medications

Post by gloria »

Laura: I'm sorry to say OT is a progressive neurological movement disorder and our standing time continues to be less with time and there is no medication that will stop it. The only thing that helps is to find coping skills to do whatever things we can do with our limited standing time. Walking at a good pace and distance will keep your leg muscles strong. As you point out too you are taking drugs for other conditions other than OT and that I would guess exacerbates your OT too. Gloria
McSweedy
Posts: 5
Joined: Mon Feb 19, 2018 10:19 pm

Re: Your experiences with OT Medications

Post by McSweedy »

Since I was recently diagnosed with OT at the Mayo Clinic in Arizona, I haven’t been referred to anyone for follow up. No one even explained my diagnosis. If I understand correctly, a person with OT should only have trouble while standing. I would appreciate if someone told me exactly what you are dealing with.

According to my EMG discharges, during standing, a prominent 13 - 14 Hz was seen in the bilateral lower extremity, paraspinal, and proximal upper extremity muscles. They saw 13 - 14 Hz muscle activation tremor in my face and neck muscles.
When they tested my facial muscles, I was asked to keep my mouth open, they probably didn’t want to hear my rapid teeth chattering.
They didn’t consider it myoclonus, Dystonia or other classic Dyskinesia. It was even considered as, “Poor relaxation.” From the minute that neurologist saw me, she told me that my movements didn’t match any known movement disorder. She also said, “I have been prescribing Gabapentin for many years and no one has ever developed a movement disorder.” I told her I think it’s a very rare side effect that not many doctors see.
Warren H.
Posts: 15
Joined: Mon Mar 13, 2017 9:03 am

Re: Your experiences with OT Medications

Post by Warren H. »

Hi, I have several postings under the Florida Clinical Trials which you can read. I've tried a whole list of medication, all of it for Parkinson's. None of it helped my OT and many med's side effects were terrible. I take Primidone for my upper body tremors and it works well but does nothing for my legs. I've also been to four neurologists, and with the exception of the FL trials, none could give me any help or encouragement. I hate to be negative, but my best guess is to live with OT and watch out for any side effects from meds. Warren Sharp in Venice, Florida
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