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Discussion:
Has anyone ever just stopped all of their meds
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Sometimes I wonder if taking 18 pills a day causes more harm than good. Anyone ever take a medication holiday? I know not to stop cold turkey as this could put your body in crisis but slowly withdraw. What do you think? Has anyone ever done this?
Posted on 08/17/13, 11:07 am
29 Replies | Most Recent Add Your Reply
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Reply #11 - 08/21/13  6:12am
" Thank you Terrapins for coming back and posting!!!! I am so happy Z got in contact with you!!! Your description of your gathering and consuming food right from the land is making me very very very hungry!!!!! It all sounds delicious!!! I love berries so I would definitely be in berry heaven!!! Oh, and the seafood - I get hungry when I go snorkeling so you can imagine how your fish, shrimp description has me very excited. LOL And I'm sure you do not suffer with a temper tantrum when someone walking in front of you, you feel, they are walking too slow because you have to catch a train. LOL

Thank you so much for sharing your experience with no meds - I really need the other side of the med story to see that I do have a choice and your sharing has given me the opportunity to hear the other side!!!

Thanks again, your post made my morning, I have to go use up all my stored up dopamine from my unrestful night's sleep to refrain from yelling at some poor soul "Do you mind moving so I can get by." or "Don't walk in my space, buddy." "
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Reply #12 - 08/21/13  12:56pm
" you are very welcom dfnj.....sorry i cant report that pd goes away, im just taking it on from a different route , that which results in less stress for me.

Brer T...off meds and haaaaapppppy. "
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Reply #13 - 08/22/13  10:52pm
" Terrapins, I am really happy to hear that you are doing well and that going off the meds has worked for you in many ways!

We all have to remember that the meds are used to treat symptoms of PD. And sometimes the side effects of the meds can be worse then the symptoms of PD. That is when one should re-evaluate using the drugs that are causing the worse side effects. We have options!

I asked one of my favorite nurses what would happen if I did not take any of the PD meds. She said you would eventually not be able to move. This nurse lives with and helps take care of her grandmother that has PD. I also remember reading that Michael Fox said that even with the dyskinesia, he felt so much better on the meds then he did off of them.

Not everyone is the same and not everyone can do what Terrapins has done. But maybe some can. And that's OK. We all have to find our way, what works for us individually. We just have to stay in tune with ourselves enough to know what works for us and what does not!

We have to be pro-active with this disease and stay in charge of managing it ourselves. The doctors are doing their best guess work based on their experiences and knowledge and are here to assist us. But we know ourselves and our bodies best and by doing research on the drugs and alternative non-drug treatments - by asking a lot of questions, not only to our doctors but also the nurses, and pharmacists, and others with PD, and by reading as much as we can - we can become educated and try to stay on top of our symptoms as much as possible.

We have to be our own best advocate. If things don't feel right - something probably isn't right - and we should not hesitate to speak up and seek help to fix it - take a look at our current treatments and re-evaluate them and adjust, cut things out or try something new when necessary. It's not easy - but we can't give up. It's our fight - and we have to stay vigilant! After all - it's our quality of life that we are talking about. And I for one want the best quality that I can have within my circumstances!! "
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Reply #14 - 08/23/13  7:15am
" I also think it is important to point out that there are some people who have been diagnosed with Parkinson's because they have Parkinson's symptoms, but they actually do not have dopamine loss. There are other diseased that mimic Parkinson's symptoms and there are also people who develop Parkinson's symptoms from long term drug use, like bi-polar drugs. Many of these people are diagnosed with Parkinson's and put on PD drugs to treat the symptoms. Most PD drugs like Sinemet and Agonists are treating dopamine loss. And some seem to respond a tad bit using the drugs. When these people are weaned off the PD drugs, they may do fine, because they don't really have the dopamine loss that the drugs are treating.

I have a friend that was diagnosed and was treated with Sinemet and Comtan for several years by a neurologists. She thought the drugs were helping the symptoms. But to me they did not seem to help very much. She was also bi-polar and had been on bi-polar drugs for over 30 years. When she went in the hospital for surgery, the hospital mistakenly and tragically stopped all of her bi-polar drugs. While this mistake set off a horrible episode with the bi-polar disease, it also stopped all of the Parkinson's symptoms. She was re-evaluated for Parkinson's and found to not have it, and was taken off all of the PD drugs. She was put back on the bi-polar drugs (she has to be on these), and the Parkinson's symptoms returned. They are the same as they were when she was on the PD drugs. The PD drugs that she had been on for years, really were not doing anything for her, although she felt they were at the time.

Anyways - another angle to this discussion! "
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Reply #15 - 08/23/13  8:29am
" Carol you are very wise and diplomatic.Your skillful maneuvering around the issue of taking the meds or not is brilliant . I agree with you , we alone can make the decision to take the meds or stay of it. Some of us are not strong enough. Exercise 10 hr a day ? I like exercise but even for me that is to much.Not enough hr in a day and I still remember the horrible feeling i had before starting the meds. Unable to sleep or rest . My body was so rigid, that it could not relax . I could not sit ,stand or lie down . the only way I could get relief , to kneel at my bed and rest my he'd on it. Even that i could not do for to long. before my knees started hurting and when they were titrating the meds. i did not sleep all night could not do anything because of the rigidity i was just rolling on the floor to find the comfortable place to rest , watch the clock until I can take my neds. Then I got relief and went to sleep. the only think which help was my painting . I could ignore the rigidity and the pain in my left arm . I like to get o the meds. in fact i decreased it by 2 whole sine met ,doe to the DBS. ,but could not get any lower. Am I strong enough . now when I know what to expect , to stop my medication.
Zlatica "
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Reply #16 - 08/23/13  10:34am
" Yes I have stopped Cold Turkey. My med (Requip) was taken off the shelves here in SA - no warning - i had two tabs. left. so had no choice really ! I started on various other tabs. bur all had bad side effects. I should tell you that i am very intolerant of PD meds. Finally, having passed our cold and taken to the hospital Emergency, I had all the tests done including a CAT and nothing was abnormal. (I know this doesn't sound normal ! ! ) but it;s true. How did I feel on the period with no meds ? Quite honestly no different really. My Doctor suggests I go to my Neuro. Specialist and he could probably make a cocktail (of drugs) that might work. Good luck ! "
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Reply #17 - 08/23/13  2:47pm
" CM that is interesting about the bi polar but is anyone here on bi-polar meds? I'm not, so is that really pertinent or just cloudy? I mean, aren't there 10000000000 mitigating circumstances that really don't address the question of placing yourself in a position to be dependent on pd meds or not? The people that i see that ask for advice are often (not always) people that have not yet started the meds. Those of us that are already fully dependent on them i don't believe can offer any advice to non dependents other than, i'm dependent and still have pd. Isn't that just defending an entrenched position that its too late to get out of? At a certain point what i hear from people is once they are dependent on the meds they cant get off them, their choices become extremely narrow at best...what advice is there for people who are not yet dependent on the meds? It should be a good thing that there is a choice BEFORE dependency, intercepting dependency and making a choice BEFORE you're dependent seems to be the question at hand as most people who are already dependent are just....well ....dependent and have only that experience to offer as valuable as that experience is to other DEPENDENT folks it does little to address the should i or shouldn't i question. I'm quite curious as to why such damaging medication gets so much support until i remember the Taco Bell commercials and compare them to saturation advertising tactics of Dr,s that are paid to keep you medicated and sick. Of course i realize that if i jump off a medication cliff #1 i don't want to do it alone and #2 after i jump i have a need to defend my jumping.
Further, being dependent on meds and than stating that it changed my life for the better and then consistently demonstrating frustration with those meds and or negative side effects and the outcome is quite an individual controversy played out daily here on DS. DOES ANYONE HERE HAVE A WESTERN DR THAT ADVISES AGAINST TAKING THE MEDS??????????? Surely in a choice driven situation there would be a noticeable% of Dr's that tell you that taking the meds is a bad idea. Doesn't it strike anyone as odd that nearly all the Dr's have only ONE opinion? and that is take pills? Lastly, i recommend that all pwp on meds already, do not try and stop, its hell. I can only advocate to those not already on the meds that there are other ways to deal with PD....not one single person has expressed more than a passing interest in just how to do that....there should be no wonder that numerous reputable Magazines do write ups on the western "pill driven society" since most of us apparently want the pills at any justification. You know... i may want to die with a clear head and undrugged body regardless of the time the pills may give me....the issue goes beyond do i or don't i? i might prefer to die unaffected by drugs and in pain etc. when the only apparent trade off for most of us is TIME....which i believe is made up. I believe that i will try and step up to the plate and face this head on without being dependent on drugs until i'm ultimately dead anyway. I also believe that i will continue advocate for those who are not dependent and do not want to become dependent.
Since there are few to no Dr's or patients that actually ADVOCATE not going on meds i believe it's time that someone does just that. And if there remains little or no interest I'll respectfully bow out.


peace and love to dependent folks and non dependent folks alike.

Bret T...still COMPLETELY med free and ecstatically happy. And advocating for abstinacy.hehehe.....(clever rhyme) "
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Reply #18 - 08/24/13  3:57pm
" Terrapins - Approx. 6 months ago I was going thru a HORRIBLE time with my PD. Looking back - I now know it was stress driven. During a check-up appt. with my neuro we discussed several of the issues I was having. I asked her about meds and she told me ABSOLUTELY NOT - you're too young! (Wow! At 55 yrs old I am actually TOO YOUNG for something???).

Meds may help with my symptoms, but I am in agreement with my neuro at this time. Just not ready to start meds, deal with any side effects that may come, and deal with med adjustments. Stress relief is what I am currently trying to figure out. So - for me - I don't need any possible stress a med regime may bring. Not saying I will NEVER take meds, just not right now. "
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Reply #19 - 08/24/13  6:50pm
" Thank you! Woderfull to hear a Dr who doesn't push meds! Theres a couple of us here who could use that kind of Doc. very heartening!

Brer T "
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Reply #20 - 08/24/13  9:03pm
" I'm going on 7 years now with minimal drugs......just Azilect once a day. I tried other drugs a few years ago with many side effects. I have tremor in my right hand, some stiffness in right arm, slight limp, so....really nothing.

My secret: stay calm, meditate, believe in your higher power, talk to your higher power, I joined a metaphysical church... so I'm surrounded with MUCH positive energy every Sunday, keep both physically busy and mentally busy, if you don't have enough to do around your home.....join a gym, only speak and think with positive energy, surround yourself ONLY with positive people..............

Vitamins:

E 400 IU
CO Q-10 800-1,200 mg
Fish Oil 1,200-2,400 mg
D 1,000 IU
Multi-Vitamin/Mineral Formula

You can heal yourself more than you know. You need to find the "BALANCE" in your life. Physical, Mental, Spiritual.


Peace to all,
Paul "

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