Has anyone stopped their meds cold-turkey... - Cure Parkinson's

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Has anyone stopped their meds cold-turkey for say a few hours and experienced symptom free for a couple of hours.

Coblrman profile image
17 Replies

For example this morning I didn't take my meds when I normally do and about fifteen minutes later (after urinating) I went symptom free for about two hours like I had taken the meds. I finally took my meds around 4pm in the afternoon. This hasn't ever happened before.

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Coblrman profile image
Coblrman
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17 Replies
soup profile image
soup

Going cold turkey from meds is very understandable because we want to feel in control, but it is incredibly dangerous. Please contact your consultant or nurse if you would like to pursue this and get some sort of supervision.

Dennis profile image
Dennis in reply tosoup

I agree that maybe not in control of my meds but I want to know WHAT I AM ON, WHY, HOW MUCH, WHEN, PLUS OTHER QUESTIONS LIKE CAN BECAUSE I HAVE THREE HANDS IN THE MIX COULD T HAT CAUSE ME MORE PROBLEMS.

soup profile image
soup in reply toDennis

I was commenting more on the fact that we don't feel in control of our lives and not taking the drugs gives us the illusion that we are standing up to it all.

judam9 profile image
judam9

i did , by accident, i missed the first two times in the day and i felt just rotten , and i hope to never forget again.

Dennis profile image
Dennis

How are you doing now after your trial of being off your meds for 15 minutes and then back on them and your pain ???????

For me...I missed by mistake all of my 1 PM meds and it was not long and I could hardly walk and in pain.

For sometime now, since my meds were adjusted again, I can hardly walk and I shake

and pains in both legs.

powerfemale profile image
powerfemale

I am out of my country. Someone threw all my meds out by mistake! It took 2 days to get

Ragasaline, Azilec and cost me £100 a box. Its all i take and thought that having taken . It for a year that it was wearing off however not taking it for 2 days I could feel my symptoms. Would also say that I feel worsening, more shaking than before so would not recommend sudden stopping.

Louise

Dennis profile image
Dennis in reply topowerfemale

Would you recommend try getting off your med for a time and see how you

respond and feel --or-- alwasys taking your meds "no matter what?

lmbanni profile image
lmbanni

Hi Coblrman,

my husband has PD and I stay home with him. He did that a few times actually. He felt the same way!! He wondered just like you why this would happen!! He was symptom free for quite a while also. It is a strange thing isn't it? He asked the doctor why this happened and his response was, 'the medicine builds up in the body." We took that as an answer but don't think that is true. If that was the case then why does he have to normally take it every 3 to 4 hours? It seems it would build up all the time and he could do without it alot longer than 3 hours. Sooo the mystery remains!! If you find out please let us know!! God bless you!! Mary

Coblrman profile image
Coblrman in reply tolmbanni

Thanks, I tend to agree as it was like a large effect for the two hours. I heard one explanation years ago that the brain kicks in and produces dopamine for awhile.

Coblrman profile image
Coblrman in reply tolmbanni

Went about 24 hours from 6pm yesterday to 5pm today before giving in to immobility. Did not have the reaction described this time. Could definitely tell the EVOO helps with feeling of stiffness (especially in the hands).

lmbanni profile image
lmbanni in reply toCoblrman

Coblrman, why are you doing this? Are you experimenting? I really don't think that is a good idea. You may have a bad experience or it may take a long time to get your meds back on a good schedule doing this. My husband only got that reaction when he forgot his meds. He was not doing this often or close together like you are now. Please don't try anymore to see how long you can go without the meds. Your doctor should probably be told about this. Maybe he or she can change your dosage to make you feel better. Are you thinking you may need less medicine? What are you trying to know?

Dennis profile image
Dennis

This was a good post with questions, comments and insights. Thanks for sharing.

PatV profile image
PatV

Depends on what I've eaten, digestion in general, sleep, stress, etc. Sometimes I go by clock and sometimes by symptoms.

honeycombe3 profile image
honeycombe3

Hi Coblrman, when participating in 2 clinical trials (2.5 yrs) it was a requirement not to take PD meds for 12 hours prior to the first tests. The tests were video recorded & repeated at intervals before & after taking meds. I was a mess without the meds - poor coordination, balance, motor & cognitive skills. The testers all commented how quickly I recovered after taking my meds & how high a level I attained in all the test areas. The battery of tests was repeated twice before meds & twice after taking 2.5 - 3 hours altogether.

I will shortly be taking the Apokyn challenge which will mean coming off meds for 24 hours under medical supervision. Anyone using this drug will have taken the challenge.

It takes me 2-2.5 hours in the morning to feel & act 'normally' but after that I'm usually fine for 12 hours if I keep to my meds regime.

Coblrman profile image
Coblrman

I had a lot of trouble sleeping last night (after no meds all day until 5:00 pm). I also slept in later than I have in years. It appears that the meds have a great impact on my sleep or lack there of.

GaryTorch profile image
GaryTorch

Coblrman,

I'm Johnny-come-lately to this discussion, but i don't start my meds now till noon or 1 pm almost every day. i love this off time when i am not running high on dopamine. i don't move great, but i feel better off than on. once i start meds in any given day, i must stick with them religiously because going off from on is harsh, whereas waking up off and staying off is not harsh, it's relatively benign. i highly recommend it. my neurologist didn't feel i was doing any damage, as i'm 11 years with PD and already dyskinetic. i am a writer, and the poetry i write in this mode i call "Pre-medicated poems," because i write them before i take my meds. i know this puts me in a minority, but i highly recommend trying to go unmedicated at the stet of any day. see what happens. might surprise you. some days i wait to 3 pm and even once 5 pm, and i still get along little doggie...

Coblrman profile image
Coblrman

I'm not so sure I'm a glutton for punishment that much as I was quite miserable. If your mind works like mine does when I'm off then your writing should be quite emotional. Unfortunately that emotional instability contributed to my wife becoming my ex.

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