Parkinson's Disease Tulip


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Old 08-10-2018, 10:18 PM #1
Parkins1964 Parkins1964 is offline
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Angry Going cold turkey with carbidopa/levidopa

While in the hospital for a refusion of my right foot the house neurologist stopped my parkinsons meds cold turkey. As a result I was basically left without use of my left side extremities at first and slowly my right side. Research says not to do this. After starting my meds back I slowly regained use, yet I now have constant headaches and major dystonia in my feet. Is this common and is it signs of NMS????
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Old 08-11-2018, 12:54 PM #2
ashleyk ashleyk is offline
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Default Very Dangerous

My father who had PD for 16 years and died at 88 was taken to the hospital after he fell and couldn't get up, no broken bones. After 5 days in the NWH hospital, he was beginning to walk whereupon he came down with aspiration pneumonia with a fever. They could not bring the fever down after another 5 days. The idiot Infectious Control doctor decided that my father had "drug fever" and stopped all Sinemet. After another 4 days my father was totally stiff and died of a pulmonary embolism. I found out from his nurse the day before my father died that the Sinemet was dc'd. I called dad's neuro and told him what I just heard. The next morning. they had given dad a sinemet shot and he perked right up. That afternoon, he died of a blood clot to the lung.
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Old 08-11-2018, 03:40 PM #3
johnt johnt is offline
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Parkins1964,

Welcome to the forum.

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 08-11-2018, 06:36 PM #4
made it up made it up is offline
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Quote:
Originally Posted by Parkins1964 View Post
While in the hospital for a refusion of my right foot the house neurologist stopped my parkinsons meds cold turkey. As a result I was basically left without use of my left side extremities at first and slowly my right side. Research says not to do this. After starting my meds back I slowly regained use, yet I now have constant headaches and major dystonia in my feet. Is this common and is it signs of NMS????
Next time let your neurologist, surgeon and anaesthetist know and one, two or all
of them will write up in your notes and allow you to take sinemet with a sip of water till not long before your op and recommence normal dosages post op.
The dystonia in your foot you may have mistaken it for post op pain but you say it was in both feet is that right?
The house neurologist is probably unaware of the consistent need for PWP to maintain their levodopa levels and you can remind and educate them as well!
Headaches, perhaps have your blood pressure checked? I haven't heard of stopping PD meds abruptly causing headache but I'm just telling you what I've learnt over the years.
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Old 08-11-2018, 07:14 PM #5
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Here are the recommendations from NHS Scotland.

"Acute management of in-patient Parkinson’s Disease patients"

https://www.fifeadtc.scot.nhs.uk/med...eline_2017.pdf

They make it clear that Parkinson's drugs are to be taken on time, if necessary by NG tube, or failing that a rotigotine patch.

John
__________________
Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 08-12-2018, 01:09 PM #6
lurkingforacure lurkingforacure is offline
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Default Wth?

Quote:
Originally Posted by ashleyk View Post
My father who had PD for 16 years and died at 88 was taken to the hospital after he fell and couldn't get up, no broken bones. After 5 days in the NWH hospital, he was beginning to walk whereupon he came down with aspiration pneumonia with a fever. They could not bring the fever down after another 5 days. The idiot Infectious Control doctor decided that my father had "drug fever" and stopped all Sinemet. After another 4 days my father was totally stiff and died of a pulmonary embolism. I found out from his nurse the day before my father died that the Sinemet was dc'd. I called dad's neuro and told him what I just heard. The next morning. they had given dad a sinemet shot and he perked right up. That afternoon, he died of a blood clot to the lung.
I am so sorry for your loss, and for the (non)care your father received. Thank you for sharing what must be a difficult story to relate, so that the rest of us know what can happen unless you are very proactive about the meds with hospital staff.

Also, I have always read how dangerous (and potentially fatal) it is to suddenly stop sinemet. I'm shocked a doctor would order that without doing the most basic of checks and/or communicating with your father's doctor.

Last edited by lurkingforacure; 08-12-2018 at 01:12 PM. Reason: more to say
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