Primary progressive myoclonus of aging. IS THIS ME?

[Carolina]

https://www.ncbi.nlm.nih.gov/pubmed/18709679


Primary progressive myoclonus of aging.

Well, this is what I think I have.  The reason I have 'episodes' (sometimes called seizures) when my left hand jerks, or my torso jerks, and both hands have tremors (not always), and why I sometimes 'greyout'' and fall, badly, usually on my right side.

I meet all of the diagnostic criteria: age, type of myoclonus (another word for 'jerking'), lack of brain related evidence (two EEGs show nothing), no dementia, no secondary causes, blah blah blah.

I am still going to put my bet (and hopes) on a side effect of Gabapentin.  And I'm decreasing my dose as quickly as I can to see what happens.   If it isn't the Gabapentin, that means I'll have to try another drug to stop the myoclonus.  My neurologist already has a drug in mind.  But really I can't bear to do any of this.  Of course I will, but I feel so trapped.

I am so tired of falling.  My bones are very strong, and so far I haven't hit my head badly, and so I just wind up with bruises.  But the emotional effect of falling is actually the worst part, so far.  And I fell a couple of days ago, just over a week from my back surgery.

I always use  my walker, but it doesn't protect me from this sort of fall.  I fall away from the walker,  I even broke the wheel on my walker on the fall before last.  It is terrifying.  I try going so cautiously, but then suddenly I'm shaking and then falling.

I guess my husband should just move me around in a wheel chair!    Can you imagine being so tied down?

I'm really complaining a lot I know.  My back is healing well, and the sciatica doesn't seem to be there (which was the point of the surgery), but then I don't walk upright for very long so maybe I haven't tested it out enough?

Unless my Gabapentin causes this myoclonus, the next best guess is just myoclonus of aging. 

I'll keep you all posted.

Hugs,  Elaine

[Deb 27]

I've heard gabapentin can cause myoclonus for sure. I hope it goes away when you lower your dose. Take care of yourself and be careful. It doesn't sound very pleasant. Can you just quit it cold turkey? Darn medications and their side effects. It seems the older I get, the more sensitive I get to medications.

[irish]

I hope that you can taper off this med without any problems. It is terrible to fall. I guess if it was me I would just use the wh/ch for a while to prevent anymore falls. Can you just sort of scoot with your feet and use your hands a little. I know it is very physically draining to use a wh/ch and one has to sort of work themselves into it.

Take it easy now and hang in there. Good luck. Irish