One of my biggest problems is nystagmus and poor vision due to my eyes jumping around. This is particularly problematic when I watch TV or try to use my computer or phone. Help?
I had Oscillopsia in 2000 for 5 solid weeks. It was horrible and I had to sit still to avoid severe nausea with it. I wouldn't discount medical cannabis. It really helps so many MS symptoms & it is time for proper trials. It's safer than most meds routinely prescribed for MS. Try it and see if it helps. It's annoying that it's not available on the NHS.
I check the box with most all cerebellar issues. The vision problems with nystagmus, though nothing as severe as in the film, are driving me bonkers, particularly with computer screens and large movie screens. I cope with looking down slightly, if that makes sense (imagine canting your head back and looking down your nose). I’ve also covered one eye at a time for what seems to be increasing double vision. Baclofen is no longer tolerable; for whatever reason, it now causes aphasia. I’m prescribed diazepam. I don’t know about others, but oddly, the smaller the computer screen, the easier to deal with. But, no matter, I still find myself terribly vertiginous after computer/screen use. I will try an actual eye patch to alternate after reading this. I’d like to hear more about prism glasses. ?
The patient describes both tremors and nystagmus. I had these in “relapse form” while RRMS, for perhaps 6 months to a year (maybe longer), back in about 1995. They made handwriting and driving difficult. As I suppose part of my visual shaking was due to tremor in the neck as well as nystagmus, I used to push back hard with my head into the headrest while driving, which did help. I also used baclofen too, but it was of “gross assistance” (had to take a lot for a minor benefit).
I had a very good neurologist back then. We tried a variety of drugs, primarily on the tremor, to no avail (he called it “intention tremor”). In discussions, I disclosed that when “partying” (I was still “young”), that alcohol seemed to alleve the shaking. He confidently then prescribed Clonazepam, (“this should do it”) and guess what- tremors immediately stopped; like a switch had been turned off! Oh, I needed it so bad and I was so pleased! It is a class IV drug (here in The US) but I never realized any other “partying benefit” from it, and usually didn’t take it when I was home. So in a few years, I stopped it as I didn’t need it. Never felt like I had to take it. As for the nystagmus individually, I do not recall to what extent it exclusively helped with that, if at all. Today at 64 (in a milder SPMS “stage”), I have a bit of nystagmus but learned a long time ago how to deal with it during my activities. I never think about it. It takes my eyes a moment longer to rest on something for examination (close or far). So avoiding "rush" situations always helps.
So Clonazepam was a successful option for me at least in terms of tremor.. Good luck to everyone- keep plugging away.
I had Oscillopsia in 2000 for 5 solid weeks. It was horrible and I had to sit still to avoid severe nausea with it. I wouldn't discount medical cannabis. It really helps so many MS symptoms & it is time for proper trials. It's safer than most meds routinely prescribed for MS. Try it and see if it helps. It's annoying that it's not available on the NHS.
I check the box with most all cerebellar issues. The vision problems with nystagmus, though nothing as severe as in the film, are driving me bonkers, particularly with computer screens and large movie screens. I cope with looking down slightly, if that makes sense (imagine canting your head back and looking down your nose). I’ve also covered one eye at a time for what seems to be increasing double vision. Baclofen is no longer tolerable; for whatever reason, it now causes aphasia. I’m prescribed diazepam. I don’t know about others, but oddly, the smaller the computer screen, the easier to deal with. But, no matter, I still find myself terribly vertiginous after computer/screen use. I will try an actual eye patch to alternate after reading this. I’d like to hear more about prism glasses. ?
The patient describes both tremors and nystagmus. I had these in “relapse form” while RRMS, for perhaps 6 months to a year (maybe longer), back in about 1995. They made handwriting and driving difficult. As I suppose part of my visual shaking was due to tremor in the neck as well as nystagmus, I used to push back hard with my head into the headrest while driving, which did help. I also used baclofen too, but it was of “gross assistance” (had to take a lot for a minor benefit).
I had a very good neurologist back then. We tried a variety of drugs, primarily on the tremor, to no avail (he called it “intention tremor”). In discussions, I disclosed that when “partying” (I was still “young”), that alcohol seemed to alleve the shaking. He confidently then prescribed Clonazepam, (“this should do it”) and guess what- tremors immediately stopped; like a switch had been turned off! Oh, I needed it so bad and I was so pleased! It is a class IV drug (here in The US) but I never realized any other “partying benefit” from it, and usually didn’t take it when I was home. So in a few years, I stopped it as I didn’t need it. Never felt like I had to take it. As for the nystagmus individually, I do not recall to what extent it exclusively helped with that, if at all. Today at 64 (in a milder SPMS “stage”), I have a bit of nystagmus but learned a long time ago how to deal with it during my activities. I never think about it. It takes my eyes a moment longer to rest on something for examination (close or far). So avoiding "rush" situations always helps.
So Clonazepam was a successful option for me at least in terms of tremor.. Good luck to everyone- keep plugging away.