Apologies to the "family".....

[beehive23]

Well, apologies are in order. Im apologize for having a desperate moment yesterday partially play out in our forum. I did not mrean to be accusatory or "wear muddy boots into our living room"" or just an ass in general. I have a DNR so i am left with only what i can do myself with fun dystonic storms....i was desperately avoiding the ER because they dont have a clue what to do, i have a sub Q apomorphine protocol but in the ER your lucky if they remember that and you cant talk so your at the mercy of ...people who dont have a clue about pd. Im 240 miles from my neuro palliative Dr. Soooo thank you all for your assistance etc. I went back this am and checked my dosing thanks to a comment on rytary od. and i checked the physicians desk ref on conversions of rytary dosing and realized my "Dr." had put me on a dosing schedule that ended up "stacking" my dose ie: overdose...so ive backed off on rytary dosing per PDR...and feel a bit better so far..well see. Its an interesting situattion to be in a hospital at a pulmonary therapy unit with a DNR and an ER 20 feet away during a storm....they were a bit confused to say the least and i couldnt talk......... sooo good times....NOOOOT! Again sorry about that folks. I guess when the chips are down i dont think of this site as a public forum per se, my perception is that its "private" by current standards regardless of having a worldwide presence. Hang tough.

[park_bear]

I have not seen anything from you that I regarded as offensive. Perhaps I missed it. In any case, no worries, whatever it was is forgiven

There been a number of cases here lately of severe dystonia due to overmedication. Glad that you figured out the cause.

Agree – the ER is not a place for Parkinson's patients to get the meds adjusted.

[beehive23 in reply to park_bear]

thanks park bear! whats with the overmedication? is it associated with rytary very often do you think?

[park_bear in reply to beehive23]

It can happen with any levodopa medication when too much is taken.

[beehive23 in reply to park_bear]

yes im aware off that. i was wondering if you had noticed a common thread such as alot of rytary od ing.

[HekateMoon in reply to park_bear]

Even mucuna...

[Nuthatcher in reply to park_bear]

I’m wondering if that is what happened to me yesterday (Dystonia). Usually I put my meds in one of those days of the week meds containers. It, when I go out I have a little pill case in my wallet and my car. Anyway, I started having what I have always thought was dyskinesia in the early evening. My mouth does this weird thing where I lick my lips and I swallow quite a bit. It gives me an Upset stomach and last night I even puked a little. My movements are jerky. I just really don’t feel well. I am either freezing cold or roasting. I have been diagnosed with dystonia in my left foot and get Botox injections in it every 3 months. I take 2 Rytary 4 times a day.

[park_bear in reply to Nuthatcher]

Jerky movements would be dyskinesia which is also a symptom of overdosage. You could try just 3 times they see if that improves things.

Peak dose dyskinesia is the most common form and occurs at the peak plasma concentration. There is also such a thing as biphasic dyskinesia which occurs on the way up and on the way down.

[beehive23 in reply to Nuthatcher]

well the pdr says rytary has a half life of i think 8-9 hrs so your on an od dosing schedule...24/3=8.....

[Nuthatcher in reply to beehive23]

Well, my neurologist worked with me for quite a while because I kept having off time. Things go really well unless I mess up by missing a dose…. I’ve noticed certain things that seem to decrease the available medication but haven’t really realized that there may be things that do the opposite as well

[M-o-ggy]

What did you write that you thought might be offensive?

[beehive23 in reply to M-o-ggy]

i felt that my comments on being blocked by this site might sound accusatory.

[ddmagee1]

ER’s for PD patients, can be challenging. I sure can relate, when medical personnel don’t seem to understand, our problems!

[ForViolet]

At least in our area people say that the little urgent care facilities are better. You read of so much trouble at the emergency rooms. But people love the care at the Urgent Care.

[HekateMoon]

Beehive, i have a Parkinsons passport with all my meds plus protocols and supplements. Not sure how it works in case of an emergency. Last time i had one was due to a reaction to metformin...my diabetic med. I dont take that anymore and my glucose is at pre diabetic stage...At the time my Pd was very undermedicated. Not a nice experience when no health professional knows what the heck to do. Good you found a solution for now. Stay strong and keep digging. Deep within the many layers there is always an answer. I find nothing wrong about protesting something even venting pain in this forum...its ok. I know well how i get when pain kidnaps my ability to be calm and collected. Many blessings from the Emerald isle.