The Orthostatic Tremor Forum (archive)

HELP OTHER OT MEMBERS BY ADDING YOUR INFORMATION TO THE POLL, LOGIN AND CLICK ON THE APPROPRIATE ITEMS ABOVE, THEN VIEW THE RESULTS OF ALL PARTICIPANTS.

Also, please post your thoughts and other medications or treatments that you have stopped using.

THANKS!

Here you can post any medication that you have tried but stopped because it was not beneficial to your OT symptoms or the side effects outweighed or masked any benefit.

Thank you

**THIS POLL IS FOR GENERAL INFORMATION, AND ANY DECISION TO START OR STOP USING MEDICATION CAN ONLY BE MADE BY YOUR PHYSICIAN

** this is not a scientific poll it's purpose is for general information only

** even though you need to be logged in to post your answer this is anonymous.

** if there are any medications for OT that you have been prescribed by your doctor that are not listed please post that information so that we can add it to the list.

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ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH PROVIDER WITH ANY QUESTIONS YOU MAY HAVE REGARDING YOUR HEALTH. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE OR DELAY IN SEEKING IT BECAUSE OF SOMETHING YOU HAVE READ ON THIS SITE.

You must not rely on the information on this website as an alternative to medical advice from your doctor or other professional healthcare provider.

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You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this website.

The only medication that I have taken is Clonazepam. Initially I was to take 0.5 several times a day but I found that to be most debilitating, as I was doing academic work! So I ceased to take any. Several years later it was again prescribed but to reduce anxiety. I did benefit from this. I also found that I could fall off to sleep more easily when taking 0.5 Clonazepam. However I reached a stage when 0.5 was insufficient to induce sleep and I was not prepared to increase the dose. I sought help and enrolled in a cognitive behavioural program to overcome my sleep issue. Now things are fine and I only take Clonazepam for anxiety when traveling. My conclusion is that Clonazepam reduces anxiety and we have all experienced increased tremors when we are anxious! So it is certainly not the cure and as it is addictive it must be used in moderation. So I have not completely stopped using Clonazepam but I only use it in anxiety provoking situations.

Hello!

I think I answered most of the questions in my other post after taking the first survey.

Helen, if you are/were only taking 0.5 mg of clonazepam, no wonder my neurologist told me I was taking a mega dose. I have never found it caused any side effects for me; but each of us is different. That is the amount I was given when I first started it in 2003. As I wrote before, I have tried many other things; but all have severe side effects for me.

I hope this is helpful to the survey, and I hope all on this site will take this survey so the doctors who check this site will get some sort of indication of what is helpful and what is not.

Betty

Hello,
there are some of us that have used other drugs - pls add a way to submit information of drugs not listed yet as this poss is at this moment limited to "your" selection of drugs.

thanks
/golfnut

Hi golfnut

You are correct the list is limited to a set of information that was available. Please feel free to post your experiences, anything you have tried with or without success in this topic area. Often the discussion is more important than the numbers and can offer more details. I had posted the following in the initial message:

** if there are any medications for OT that you have been prescribed by your doctor that are not listed please post that information so that we can add it to the list.

Polling and Survey software rarely allows changes to the original setup, most likely to avoid anyone manipulating the data. In this case I wish we did have the ability to add more medications but we will need to wait for a new round of questions which could incorporate a more comprehensive list.

We can only draw upon the information that we have, which is why it is very important for everyone here to contribute their experiences, this forum is a cumulative effort and without the information posted by the members it would have no value.

best regards

I tried Beta Blockers of varying kinds and dosages. I'm also working on migraines as well as tremors. Beta Blockers seemed to be better than nothing, but the main side effect for me was a feeling walking on a rolling ship. I've now completely gotten off of those, and am on Gabapentin.
I've been on Gabapentin for a couple of months now, just getting it adjusted. I started out with 300 mg 3 x a day. I'm just now getting up to twice that. Headaches have been much less since I've been increasing. Tremors are better, but the urge to sit is still very strong, and of course stress amplifies it all. I can get by better with leaning again. Without Gamapentin, the tremmors were way more noticeable, and started quicker, but were primarily in my legs or arms if I leaned on them. With the Gabapentin, it seems like the tremor is deeper in my core. It's better, and I'm going to stay on it for awhile. I do like the calm feeling that seems to go with it. I'm still deeling with the side effects that do seem to get better over time; sleepiness, feeling of weakness, acidity in my system in general, loose stools or diarrhea at times. The moving ship feeling is gone, so I know that was from the Beta blockers.
Hoping this information is helpful for others.
Marlana

Hello Marlana,

I just posted on another topic you had questioned, so I think I addressed most of what you have written here, was address there.

I was on Beta Blockers years ago, but it was for high blood pressure; which I no longer experience.
I continued taking the Beta Blocker, under direction from my doctor, because he thought it may help my tremors; it didn't. That was BEFORE we knew I have OT. I had to stop taking that because it made my blood pressure too low and I was very dizzy upon standing.

I am now taking Klonopin (clonazepam), and have for years, but am now cutting back on that. I found the side effects were more than I wanted to experience. I am down to half what I was taking, which was 2 mgs. daily, but am now down to 1/2 tablet in the a.m. and 1/2 tablet in the p.m.

I do notice my tremors are much worse, but the side effects are less; and I would rather cope with my tremors than the side effects. We'll see how this works out.

Again, I am happy you are finding the Gabapentin is working for you. Keep us informed as to how you are doing; we are all interested.

Betty

Beta Blockers have a history of not being helpful with OT. Gloria

HI
I am taking Beta blockers since i had tremors.
I dont know if it really helps or not.
My doctor said it could.
Stella

Hello Stella,

I must agree with Gloria; Beta blockers don't seem to be helpful with tremors. As I stated above, I had been on a Beta Blocker for high blood pressure, but since I no longer have that problem; stopped taking the BB. I did not find it helpful with tremors.

Is that the only medication you take for OT? You might cosult with your doctor regarding this.

Keep us informed....

Betty

Hello - I was prescribed a beta blocker by a Locum GP we had on the Island at the time when my OT had deteriorated, despite the fact that I am an asthmatic (beta blockers are not recommended for asthmatics as they can aggravate the condition). Within two weeks my breathing was becoming laboured so I went back to the doctor (resident GP this time). He immediately took me off the beta blocker and prescribed a dose of prednisone to get my breathing back to normal.

We then contacted my Neurologist in Auckland (1,000 km over the water) who suggested I begin taking Clonazepam (0.5mg twice daily). So far I have declined this medication because of the known side effects.

I gave up my job in the local Council office at Christmas and there has been a noticeable improvement in my condition. I can now stand, legs astride, for much longer periods of time without having to grab hold of a prop or lean on something and have stopped using the hiking pole (my prop) when out walking on the beach. Family and friends have also noticed the improvement. When I get tired now, I sit down and relax - working never gave me that opportunity. I realise I am very lucky to not have to rely on the income from a job as my husband has a good income, but I can certainly recommend it to anyone able to become "a kept woman".

Regards, Lynette

Hi Betty,
Oh NO i take gabapentin for my tremors.
I do feel it makes a difference for me.
I have been taking it for 3 years now.
Stella

Hello Lynette,

I read your post some time ago, but didn't get around to responding until now. As I stated above, I was on a Beta Blocker for high blood pressure ~ years ago ~ but since I no longer have that problem, stopped the Beta Blocker.

I am unable to tolerate medications most find to be helpful, so I do take Clonazepam, but have cut my dosage in half. I don't like the side effects either, and have found my tremors have increased since reducing my medication. But....I will continue to cope with my tremors rather than the side effects of the medication.

I am also fortunate, I do not work either, so my tremors are not caused from the stress of working, just the stress of coping with OT and crowds.

Do keep us posted and good luck.

Betty

Hi Stella,

I know Gabapentin is the one medication most find to be the most helpful; but it is a medication I am unable to tolerate. I do hope you contine to do well and your tremors remain unchanged.

Stay in touch, and keep us informed.

Betty

I tried Gabapentin, and actually liked it for it's calming effect, and it did help calm tremors a bit. However, the side effects never quite mellowed enough for me. I tried a range of doses from 300 X 3 to 600 X 3 and back down to even 300 X 1. I finally learned what was side effects and what was the OT, that in itself is a challenge. Since my balance got worse, I was less able to catch myself when I needed to. With the higher doses my legs felt weak and unable to hold me up. That weakness decreased at lower dosages. I also noticed depression and suicidal thinking. I am a therapist, so I didn't buy into it, but it was still unpleasant.
The side effects that I could not tolerate were the more simple ones, like daily loose stools bordering on diarrhea. These bowel issues got less at lower dosages, but never completely left. I finally stopped taking it altogether about a week ago. Tremors are more noticeable, but not worth the other health issues that would occur with long term bowel issues.
I am disappointed, and I'm ok. I don't work, and I now have a wheelchair, so the stress of dealing with the tremors is less. At some point I may try clonazapam, but not yet. I am back to feeling my usual happy and optimistic self, so for all of those reasons, I'm glad I tried Gabapentin, and I"m now glad I'm off of it.

Marlana