The Orthostatic Tremor Forum (archive)

Hello everyone: Gloria, I took your advice and completed the survey. I was already registered on the website. I think you probably know who I am as I wrote you about one week ago and you responded.

Currently, my Dr. has me on Clonazapam (for the last ten years) and has been trying every type of drug available (most times in combination with the Clonazapam and sometimes by themselves. I believe I've tried just about everything on the market including many drugs used for Parkinson's Disease. The latest one was Catapres (a blood pressure medication) which he prescribed as a patch. Needless to say the drug had no positive effect, notwithstanding the fact that the longest time the patch stayed on was 5 days (it was supposed to stay on for 7). I'll be seeing him again on October 7. I 'm wondering what other combination he will come up with.

I feel like a guinea pig; the quality of my life has gone steadily downhill. I can't walk and hold my grandson, fearing that I will somehow trip and fall. On top of the tremors, I had surgery last year for a torn meniscus. This does not help my situation any because the knee is now arthritic. I don't have to describe anything else because I know you all have probably experienced it all. OT is controlling my life and I hate it. It is debilitating and many times embarassing, but I am not going to let it get the best of me. I'm much too young to just sit down and give up. My doctor calls it an inconvenience, not a disability. I'd like to see him experience some of what we all go through and then tell me that its "just an inconvenience"

If anyone has had any success with other drugs besides Clonazapam, please write me back. I've tried just about all of the PD drugs, Mysoline. Someone spoke about the drug Neurontin. Has any one been able to compare it to Clonazapam. I find that Clonazapam helps very little; my tremors are so bad at times, it starts affecting my back. I know that every one of us reacts differently to medications. But I'd like to hear some feedback from those of you who have had some positive results. At this point, I am willing to try just about anything short of surgery!!

Thanks for listening.

Hello I am Lorna replying to Kaylie and others regarding my second try at Neurontin (Gabapentin). I have now been on Gabaspentin for 6 weeks and am now taking 3300mg per day. As I said in my last posting I just could not stand anymore than a few seconds, I was really struggling. Now I am able to stand for a few minutes, long enough to make a cup of coffee, do the dishes, stand longer to vacuum (sit after a time). I am an avid gardener and cope quite well with this now. What gabapentin has done is just give me a little more time before the tremors start and I must say a few minutes is better than nothing. I think 6 weeks is quite long enough to evaluate whether the gabapentin was worth continuing. Gloria encouraged me to try a higher dose than I took 18 months ago and I am glad she kept at me to do so. I take a generic brand called Genrex as its much cheaper than the brand Neurontin.

I also take a tablet (natural) call Same, pronounced Samee, this tablet is wonderful for keeping away the blues that a lot of us with OT experience, I take this 3 times per day. Same can be checked out on the internet and has been around for a very long time and is highly recommended for people with depression (also may help with arthritis).

As we all know this OT is di bilitating and depressing and for a doctor to say its an "inconvenience" is just plain disgusting, I know if he was struck down with OT he would soon change his attitude.

So anybody that has not tried Gabapentin or may have but not a higher dose may want to try it. The only side affect is a slight weight gain, but this is a small price to pay. All the best to all OT friends. Lorna.

Hi everyone!
This is a reply to Kaylie & Lorna. I have been reading with interest the information on various medications and how well they work. Meds affect us all differently but there maybe seems to be a common thread as well.
Following the advice of a few I decided to ask my Doctor for higher doses of Gabapentin. I think he was a bit skeptical but went along with me. I worked my way up to 3200mg per day and didn't really notice any difference at first. I felt like my body was vibrating at times and really didn't like the feeling. After about a week at that level I dropped down to 2800 mg (2-400mg 3 times a day & 1 between 3 & 5 a.m.) I also tried to get more active each day and watched what I ate more carefully. I have been unable to be very active the last 6 months due to another problem unrelated to OT.
Slowly but surely I have started to notice my tremor, after about 3 weeks, is not as severe as it once was and I am able to function a lot better. I can now stand and make dinner without too much problem ( any longer than 5 minutes and I start to shake more and my hips start to ache quite a bit). I also can vacuum or wash floors without as much pain in my hips. Gardening has become a lot easier and I am finally able to tackle my jungle of a garden. I still use my trusty stool a lot which helps me to do things longer and have rests when needed.
I find I always have my tremor but it is not as noticeable for longer periods and I seem to be slowly getting my life back. I don't avoid social occasions as much anymore and don't dread shopping like I used to. I still have to sit and rest a lot but people seem to understand generally.
I have really not had much problem with depression. I guess I am quite lucky that way. I have taken early retirement from my job which was becoming very difficult to manage. That alone has made be a lot happier as don't have the stress of worrying about standing and leaning all day!!
My Doctor seems at a loss as what to suggest for me but at least he seems to understand what I am going through. He has seen me tremor at my worse when I was not on any meds at all. I was on Clonazapam for a year and it didn't really help me very much even at very high doses. It did however make me quite depressed and changed my personality somewhat (according to my husband).
Thanks for listening all and hope this helps a bit. I will keep in touch and look forward to hearing from you all about your meds, etc.
Keep well and hang in there!
Chris

hi there
a message to chris or anyone who would likt to contact me
would like to hear from you if you would email me. my address is
x_candysee@yahoo.com. I am from canada also and just found out i have OT