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Primary progressive myoclonus of aging.

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Old 01-16-2017, 08:18 AM   #1
ElaineD
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Hello, I am having myoclonic seizures, mostly positive (jerking of left arm, left side of body) and sometimes negative (sudden collapse to the floor). They started in April and are escalating. I even get myoclonic seizures of my eustachian tube which produces rapid clicking! Occasionally I wake up at night having seizures in my abdomen.

I am seeing a specialist in epilepsy on the 30th of January.

Writing this is more difficult that usual because my hands jump occasionally.

I have been prescribed 1500 mg of Depakote, since December 19, but it hasn't made any difference.

In the past three years I have had two one-hour sleep deprived EEGs and one overnight sleep study with EEG monitoring, all of which showed nothing unusual with brain activity.

So good to find this forum.

Hugs, ElaineD
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Skeezyks (01-16-2017)
Old 01-16-2017, 01:40 PM   #2
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Hello ElaineD: I'm sorry you're experiencing these symptoms. I don't have anything as severe as you describe. But I have this constant sort-of "nervous" feeling throughout my body 24 / 7. The thing is I don't have anything to be nervous about. So although it feels like nervousness, I presume it must be something else. I also have what I typically describe as a restless-leg-syndrome sort of feeling also throughout my whole body 24 / 7. I haven't sought treatment for any of it, however. I also experience myoclonic jerks during the night occasionally. I also have been diagnosed as having Meniere's Disease. So I have some stuff going on that I presume is probably related to that as well (dizziness & balance issues.)

I did mention all of this to a psychiatrist I see a couple of times a year at present. He offered to write me a prescription for Neurontin. However I declined. I was on Cymbalta for a year or so back a couple of years ago now. While I was on it, I started to develop some jerkiness in my hand & arm movements. However, once I got off of the medication, that gradually went away.

Anyway, best of luck with your upcoming appointment. I hope it yields some beneficial results for you. Please keep us posted.
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Old 01-17-2017, 09:36 AM   #3
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Dear Skeesyks,

Thanks so much for your post. I have taken Cymbalta since 2010, 60mg/day.

I take it because it is on label for several types of pain, specifically osteoarthritis and Peripheral Neuropathy, both of which I have. And I have Immune Disorders which cause inflammation which causes depression, so I take it for depression as well.

I checked, and a 'rare' side effect of Cymbalta is myoclonus! It is possible that this has built up over time.

I will discuss this with the epilepsy specialist that I am seeing on January 30.

I would have to withdraw slowly from Cymbalta, of course, but I can do that.

Again, thanks for your help.

Hugs, ElaineD
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Skeezyks (01-17-2017)
Old 01-17-2017, 12:14 PM   #4
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I was on Cymbalta for perhaps a year or so (memory fails me... as usual.) I was on the maximum recommended dosage... 120 mg / day. It was, for me, the best of the antidepressants I ever took. Plus it also helped with some of my chronic physical problems as well. I went off of it when I had to change health insurance plans & the out-of-pocket cost skyrocketed.

When I made the decision to go off of the Cymbalta (actually by that time I had switched over to the generic) I went in to see my psychiatrist in order to get a withdrawl schedule. (In the past, when I'd gone off of antidepressants, I just took myself off.) Anyway, my pdoc suggested a withdrawl schedule that took me from the maximum recommended dosage down to zero over the course of two weeks.

I had read horror stories, on PsychCentral where I am also a member, about trouble members had experienced withdrawing from Cymbalta. So going off of it over the course of 2 weeks seemed very fast. But since that was what my pdoc was recommending, & I had not had any significant difficulties taking myself off of other antidepressants in the past, I decided to go with it. And I really don't recall experiencing any particular problems.

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