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johnny

Excessive Fragmentary Myoclonus

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Hello Everyone

Ive had PD since 2009.I started having Myoclonic Jerks three years ago.My doctors till this day have been unwilling to help me much.They like to write it off as stress.

I did find much relief with switching my carbolevadopa to a different generic but it did return when my CPAC machine failed.When I went back on it they died down.

I went to Colorado(high allitude)caused it to malfunction  and my apnea returned along with the jerking almost ruining my vacation.My AHI almost tripled to 12.The company said it should compensate but when I returned to NY my sleep got better and the jerking also

I found the condition Excessive Fragmatory Myoclonus which linking sleep apnea,PD,And myoclonus.Preety self explanatory but why over six Movement Doctors  didn"t know about it.

I guess the next step is getting another sleep study to maybe further understand this problem.

If any of you ever heard of this please respond

Hope you all are well .It seems I cant use my old name Johnny

Johnnny

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I've recently started having exaggerated startle reflex accompanied by momentary freezing when taking a step down from the sidewalk to the street and sometimes when standing upright in my apartment. I also have been startled awake with a jerk several times lately. After I read your post, I Googled "myoclonic jerk and excessive startle response in PD" and found an answer. One article said clonazepam is the treatment of choice. https://www.bcm.edu/healthcare/care-centers/parkinsons/conditions/myoclonus.

I thought I was experiencing an increase in anxiety and had just this week asked my Psychiatric Nurse Practitioner for an increase of an occasional 0.5 mg of clonazepam. I discussed the exaggerated startle reflex with my MDS yesterday. He did not mention myoclonus. Thank you for posting this topic.

Dianne

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4 hours ago, bill 1991 said:

Hello Everyone

Ive had PD since 2009.I started having Myoclonic Jerks three years ago.My doctors till this day have been unwilling to help me much.They like to write it off as stress.

I have Myoclonic Jerks that come and go and I can tell you with absolute certainty that they have nothing to do with stress.  In fact, they normally happen when I'm completely at rest.

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On 09/23/2017 at 7:49 PM, Beau's Mom said:

I've recently started having exaggerated startle reflex accompanied by momentary freezing when taking a step down from the sidewalk to the street and sometimes when standing upright in my apartment. I also have been startled awake with a jerk several times lately. After I read your post, I Googled "myoclonic jerk and excessive startle response in PD" and found an answer. One article said clonazepam is the treatment of choice. https://www.bcm.edu/healthcare/care-centers/parkinsons/conditions/myoclonus.

I thought I was experiencing an increase in anxiety and had just this week asked my Psychiatric Nurse Practitioner for an increase of an occasional 0.5 mg of clonazepam. I discussed the exaggerated startle reflex with my MDS yesterday. He did not mention myoclonus. Thank you for posting this topic.

Dianne

Mine were so frequent that it was interfering with driving.  Nothing like having your arm violently jerk while gripping the steering wheel.

Clonazepam got rid of the jerks for me.  Makes sense, as the drug was originally perscribed for seizures.

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On 9/26/2017 at 8:30 PM, afroney said:

Mine were so frequent that it was interfering with driving.  Nothing like having your arm violently jerk while gripping the steering wheel.

Clonazepam got rid of the jerks for me.  Makes sense, as the drug was originally perscribed for seizures.

Hi

Fred

I tried that drug but while it worked it made PD worse and when it came back it was worse.

I also could control the jerking pretty much if my mind was focused and I was moving around so I hardly got bad jerks while driving.

Another thing I usually get a shock like pain before they started. I've aso cut out  my c/l sr before bedtime and only take 1 25/100before bedtime.I get some leg restless but after some am coffee Im ready t go.

Im now a firm believer in the fewer drugs we rely on and the more we rely on our mind the better we will live.

Glad to hear from you again.

john

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