by Terese » Wed Aug 18, 2010 6:10 am
Hi, This is my first time on this site. I've had OT for 7 years now and mostly have learned to live with it. When I went to my doctor with my symptoms, he had no idea what it might be, but thankfully referred me to a neurologist. As soon as I described my symptoms she knew exactly what it was. She asked if I could actually SEE the shakes and I had to admit I hadn't ever looked. So I stood up and within a minute they started, and we could see them. She started me on .5 mg Clonazapam 3 times a day. It helped a lot in my opinion. After about 6 months, I asked her if I could increase my dosage and she upped me to 1 mg 3 times a day. I was on that for a year or two. It did make me tired and sleepy at first, but that passed. It didn't eliminate my symptoms altogether, and I decided to try another drug. I don't remember what it was but I had to build up to it slowly and had very strong side effects at first, which I was warned about. I decided to hang in there but after a month it was obvious that the side effects were getting worse. I felt I was on a narcotic and even stopped driving my car. I went back to the Clonazapam 1 mg 3xdaily and continued for a year or two. Then I asked if I could take it 4 x a day (which I had been doing on my own on severe days) and she said go ahead. I also kept my regular dr. informed. Recently my doctor put me on a blood pressure medication which had several side effects which I was expecting (tiredness, shortness of breath) but several I had not expected. My OT worsened and I started having chest pains and pain in both arms. (I had just had a complete cardio workup so wasn't worried about heart problems.) My doctor changed the medication and most symptoms lessened or went away. I still had the feeling of a tight belt around my chest and back and arm pain, but usually after exercise. One day I mistakenly took 5 Clonazapam and had a terrible reaction. The chest and arm thing was constant, and it was worse if I laid down. I almost went to emergency after a whole night of the pain...but decided not to for 2 reasons. I am visiting my daughter in Wales and was afraid of insurance issues and I had had this pain before. So I went through the night the next day took none of my medications at all. The pain came and went for the next few days, finally tapering off entirely. One unexpected side effect of not taking pills for one day... my OT disappeared for the entire day!! Of course it came back the next day, but I cut myself back down to 3 Clonazapam a day and am back to normal (in my way). When I get back to the States, I have an appointment in Sacramento (California) with a neurologist who specializes in movement. I plan to get the names of the drugs that I had a bad reaction to and see what this doctor's opinion is. I feel I lead a fairly normal life, comparatively. Yes, I do have to lean or sit when I shake, but that does work. I have not trouble walking (brisk is better), driving, etc. Since being here in the UK I've started unloading the dishwasher and washer and dryer sitting down, which was so frustrating for me before. Sorry this has been such a long post, but it's my first and I've read everyone else's. Thank you for talking to me and for listening to me (in our way). Terese