Hi everyone. The previous discussion from June is closed and there are a couple of things I didn't see there. I'd like to pass them by all of you for comments and your support.
I have sleep apnea and when I had the sleep study they found that I also have restless leg sydrome or restless limb. I first was given Mirapex for restless limb. The sleep neurologist also prescribe clonazepam to help control the jerking. She said that with restless limb, clonazepam lets you "sleep over the jerking." I was also worried about the habit forming potential so I took it very rarely. I still have that prescription from July of 2006, actually and when I have a mass of symptoms I take 1/4 of a 2 mg tablet and it works and I feel dopey in the morning.
After some years the Mirapex just all of a sudden quit working. Then I was given Requip XL and I'm on that now.
I have been diagnosed with tardive dyskinesia as a result of taking a medicine without knowing that TD was and is a possible side effect. The movements I had when I was taking Abilify were like Parkinsonian tremors. I went to a movement neurologist and he said he thought I had early Parkinsons but to be sure I needed to stop taking the medicine and after several months he would see me again.
Stopping that medicine caused immediate cessation of the Parkinson-like tremor which was good because I was really depressed at that point. But I started having jerking like a lot of you have described. My arm, just about always my right, would fly out away from my body from time to time. It was weird and embarrassing. When I got into bed at night my arms and legs started this jerking and my trunk had a twisting jerking. A few times I had the sensation of constant mild electrical shocks in the middle of my legs.
He recommended Gabapentin and that has helped but it reaches a peak and stops working and I have to have it increased.
The Gabapentin is increased now to three 300 mg capsules each day: one at dinner time with the Requip XL and the other two with my bedtime medicines.
When I get in bed I read for a short time and then I will have the first jerk. They are confined to the upper part of my body and they are twisting jerking movements. Those movements are my cue to turn on my cpap machine and put on my cpap mask. If I wait, I will fall asleep without even knowing it and I will wake up later with my book on my chest and the light on and me without the cpap I need.
I'm starting to have a few jerks in the daytime which probably means the Gapapentin will have to be increased before too long. I can only take it at night because it is so sedating so I'm not sure where the neurologist will slip another one in. I am sure, however, that I cannot live without treatment for the jerking movements. I really think I would have a psychiatric break within days and I'm not a pansy. Its just that they are that bad.
I'd really be glad to hear from any of you who know anything about these symptoms and how you are able to cope with them. And I can answer questions that might help you, I hope.
Thanks so much for reading all this.