Request for Help Weaning off Medications

I was diagnosed 8 years ago with Parkinsons. I have been on levodopa/carbidopa for 5 yrs plus ropinirole for about 1 year….I have come across an hypothesis as to the root of the disease….being connected to gut function and flora.
I have been trying to get off the above drugs but freezing is a common occurrence and because I am only 43 with a lot of family and professional responsibilities. I am having to take drug vacations instead of weaning over time since the weaning seems impossible because my body reacts in an all or none fashion leaving me little options on how to wean….these medication side effects cause me great anxiety…worry…and despair.
I would love an opportunity to speak directly to someone who has successfully weaned off these drugs….pharmacists and doctors in my community are just surmising, as they have no real experience doing so…..
Thank you and to anyone who can help me, as this is the most difficult experience of my life….
With Kindness,
Chris
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26 thoughts on “Request for Help Weaning off Medications

  1. chris
    my situation are the same as yours i have been contemplating reducing my medication and was interested in your connection to your gut function and flora.
    how did you come to that conclusion ? I have what feels like a lump in the lower part of my right had stomach, but the doctors say that there is nothing there.
    I would be interested in looking at the options with regards to reducing my tablets over a period of time to see the outcome.
    john

  2. My husband weaned himself completely off the drugs two years ago and he nearly died. He was unable to swallow, completely incontinent, almost paralyzed. Lost 35 pounds and was down to skin and bones. Wound up in the ICU, then hospital, then rehab, as he was titrated back to the drugs. Today, he is thriving, happy, productive, and taking his meds. Happier than ever in his life. A large part of the change was the decision to live and fight back that he was forced to make when he got close to death. Now, he doesn’t worry, doesn’t stress, has fun, and is grateful for everything every day. Every person is different, but a positive attitude will help anyone!

  3. I am 53 years old and was dx almost 7 years ago. I weaned off a low dose of carbidopa/levodopa spring of 2014. I am using the Hinz protocol with mixed results.
    It includes supplementing with tyrosine, macuna, cysteine, 5htp and B6 to balance neurotransmitters in the brain. Their position is that carbidopa CAUSES PD symptoms which limits the effectiveness of long-term dopamine (levodopa) supplementation.

    Website: neurosciencemyths.com
    this website appears to be password protected now which it didn’t use to be. It does say free referrals to docs using the protocol are available. You need to work with a knowledgeable doc to get the right balance.

    PS. It ain’t cheap.

  4. I stopped sinamet in April, rough at first. I too doing the amino acid therapy it works great but some stomach upset yes it is not cheap Ellie female 66yrs diagnosed 3.5 yrs

  5. I weaned off amandatine and was taking a holistic approach with traditional Chinese exercises etc. I could not walk hardly and freezing etc. I followed this for 4-5 months and was told it would get better. It never did so I was ready for med’s as had not ever taken any as my symptoms were mild. I decided life was too short at 65 years old. All I can recommend is to have exercise or something in place…some sort of regime….and see progress before you lessen your meds a little at a time. Hope this helps and is not too discouraging. There are so many causes of Parkinsons I have found.

  6. We have cut my husbands meds of sinemet and mucuna of 4 pills, 2 of each every 4 hrs to 1 and half of sinemet and no mucuna every 3 hrs plus using amino acid supplements, denatured whey protein, green foods, brain supplements, and essential oils for a month. Basically getting away from the side affects and trying to keep the brain thinking straight, slowly getting better. Evenings are harder specially with walking.

  7. Hi. I’m 58 and 21 years been tremoring….delayed taking sinemet till 5 years ago and kept dose low. Have reduced dosage to 1/3 with the assistance of wildcrafted mucuna powder, chlorella, ashwaganda, chinese stomach massage and yerba mate tea and foot whispering and hiking and biking yoga and chi gong. Doing well and realizing that sometimes less is more (I also am a homeopath) and I also suspect that timing has its own way with each of us. I am learning toreall y listen to my body and was suprisied when decreasing my med was actually helping me to feel better as I reallly got my life back when I started taking sinemet. Weaning from dopamine agonists may be entirely a different animal….

  8. i m a parkinson patient since 2003 & on medication since 2006.
    i m not able to stop my medicine but have found medicine milk effective.
    it helps me in movements at my off time,
    i take 1/4 glass water , 1/4 glass milk & 1 or 2 garlic cloves crushed.
    boil all three together for 10 to 12 minutes. add 1/2 teaspoon sugar or honey .
    this drink is useful to me & may help my parkinson friends.
    you can check this drink on net also.
    a parkinson wellwisher

  9. I am a naturopathic doctor and I have found in the weaning process something has to be given in place of the medication. Sometimes many different things at once, which is why I use probiotics , b vitamins, coQ10, small dose of macuna and some amino acids. My biggest concern is of the “thoughts” that come with the weaning/detox…. Such despair and anxiety ….. I suspect that thoughts too and/or my belief patterns caused my Parkinson’s…..any insights would be appreciated.
    Ps there are so many people who have recovered… I have very high hopes….

  10. I have almost managed to wean off sinamet. I was on 6 a day and developing dyskinesia. I’m now d own to 2 aa day. I replaced the sinamet with mucuna puriens. I am also weaning off mirapex. i don’t recall how many I was taking, but I’m down to 2 a day. I became very jittery and anxiious The doctor had told me to cut down one pill per week. It was way too aggressive for me. The neuropsychiatrist put me back on a dose of 2. I think because he didn’t want me increasing the dose I was taking of Lorazapam. This is the drug I’m weaning off now. I’m taking L-tryptophan, magnesium, 5-HTP and Gabba, Also, cannabis oil is very calming.. Hope this helps. It’s great to hear other people’s experiemces.

  11. Male 77yrs – diagnosed with Parkinsons a few days after Stroke 23/3/13 – put on low
    dose Sinemet…….did not like side effects and stopped ALL medication more than a
    year ago – now, after many ups and downs, starting to regain my health – thanks to
    Physiotherapy, Shiatsu massage, Acupunture, very organic diet, tricycling etc.

    I feel it to be very important to treat each disease SEPARATELY – otherwise how do
    I know where I am??

  12. I was titrated off sinemet a year ago. I have MSA
    so I am very symptomatic. I went off it because it was
    doing me no good and I was having more symptoms
    especially with my legs(restless leg) I went off it while doing photo
    dynamic therapy in the Philippines. The person treating me had me
    dissolve 1 tablet in 8oz. of water and sip it because of the half life.
    I did that thru the day going from 4 tabs to one for the whole day. It
    worked.I was completely off the sinemet in one month.No problems with
    the legs or sleeping. I tried the amino acid therapy.did not help me and is very
    expensive.I work with a naturapath here and incorporating John Coleman’s
    approach. Very promising…

  13. Hi Chris and All
    Sorry for the delay in responding. I don’t know anyone else who weaned off meds. I know one lady who never took any meds and everyone else I know of takes meds.

    I think when you go off a med you have to replace that with something else – a trade off that my acupuncturist called push-pull. I replaced Sinement with Macuna (dopamine) and Tyrosine.
    The Tyrosine boosts usage of Macuna in the brain and 5htp counteracts the nausea.
    The protocol also includes Cysteine, to boost glutathione to facilitate detoxification. It’s sulfur.
    B6 is important too no matter what you’re taking.

    Also, YES to gut connection!! I am only just learning about this now but I think I have leaky gut and it has made the protocol very tricky to perfect. If I ever get this solved I’m expecting to halt the progression of the PD and never need meds. That’s the goal.

  14. Moira and Maureen, could you please let me know where you get the macuna puriens? Are either of you doing the Dr. Marty Hinz protocol using macuna and amino acids? If not how do you know which other supplements to use with the macuna? I have just reluctantly started Sinemet with a neurologist, and am working with an Ayurvedic Dr. as well, who will be using some form of macuna once my digestion/elimination is more regular and healed. I’m also under the impression that it’s hard to get a reliable grade of macuna. I’m happy to hear that you are able to combine macuna with Sinemet and that it allows you to cut back on Sinemet. My neurologist is concerned about the combination and has no knowledge of macuna. Thanks for sharing your experience. I also cannot find any specific information on getting off Sinemet, so those of you who did get off or lower your dose, what did you do specifically and how long did it take? Thank you.

  15. Again, I am using the Hinz protocol. The Macuna and other supplements are purchased from them via your provider. CHK Nutrition is the company but they don’t sell to the public. They guarantee the macuna is standardized to 40%.

    I weaned off Sinemet while ramping up the macuna. My transition was easy perhaps bec. my dose was low and short term. (Maybe 6 or 8 weeks/??)

    Neurologists don’t have the complete picture re: neurotransmitters, which are interdependent and need to be supplemented in a balanced way to prevent long term decline.

    Note: my digestion and elimination did not really improve until i started the amino acid protocol developed by Marty Hinz.

  16. I was diagnosed to Parkinson in 2006,, discontinued syndopa due its worst kind of reaction in bl.ood . started one hour visit to local physcio-therapy centre 0n 2010. since than medicinal treatment and physio are running parallel. but for expressions, little off on staircases I fail to take notice of Pd

  17. Hi all, I was dx’ed in 08, I’m 59 now and female and the doc started me off on one sinemet 6 times a day, every 4 hrs round the clock. I was a real mess when he first saw me and said I definitely had PD and probably had it for 15 yrs prior to that. I’ve had a datscan and it confirmed the PD dx and I’ve also had other tests to rule out MS and other diseases. Just the PD is all they found. I have to admit the medicine worked wonderfully at first and I was almost symptom free for the most part for the first 5-7 years but then things started not working so well anymore and the dyskinesias started and I began to have a delay in the effectiveness of the medicine and my symptoms were magnifying and so I began a serious research project of my own, how to cure my PD and get off these awful meds. All my doc wanted to do was to put me on more medicine. No way!
    Fast forward, it took about 2 yrs to do it but I’ve weaned down to 1, maybe 2 sinemets a day and there are even real good days where I only need I and just the other day I went 36 hrs without anything at all and I felt amazing. During al l this weaning I changed up everything I was doing. My diet became pristine, nothing but pure and organic foods, nothing in a package or unsafe for my body, and I focused on all the dopamine increasing foods like almonds, apples, watermelon and more. I eat all these foods every day. Lots of water, hydrate, hydrate, hydrate, this will get the toxins out, the biggest PD culprit, and exercise and keep moving and doing all day. An exercise called qigong is awesome for body healing and in fact there is one lady who did this for 3 hrs a day and cured her PD after months of doing it, and I also take lots of really good for the brain supplements. I don’t know how I’m doing it, it’s just happening and I’m feeling great. The PD symptoms are still there, mild, but it seems like the more I do all I’m doing, the less the PD is there. I may not get all the way there, but I feel so much better on less meds than more. Research it yourself and see, there are many people doing other things for their PD besides drugs and it is working for some. Check with your doc first and if you decide to taper, do it ever so slowly, could be fatal otherwise. I did a half a pill every 8 weeks or so so my body wouldn’t miss it too much. Good luck to you. 😊

  18. Chris, I’m having great success weaning off sinemet and I feel pretty good, honestly. I’m doing all kinds of stuff and it’s working for me. My email is ankatu7@hotmail.com
    Please contact me for more info.

  19. I have not been diagnosed as of yet. I have a bad hand tremor. I take no mess. I saw neuro just yesterday and she prescribed sinemet. 25-100. I started it..but having second thoughts. I have only taken 3 pills. I dont want to start something that is so hard to stop .any suggestions

  20. Hi:

    Since you are hesitant to go the medication route, I would suggest that you explore the many natural options that are helping people reverse their symptoms. Begin listening to some of the 220 radio shows I have aired over the past 8 years and you will discover some remarkable suggestions for how people succeed in reversing their symptoms. All shows are archived and available for replay for free which is one of the many free services I offer through Parkinsons Recovery.

    http://www.blogtalkradio.com/parkinsons-recovery

    Robert Rodgers PhD
    Road to Recovery from Parkinsons Disease

  21. My husband has Parkinson and these past 5years have not been fun desperate to find help on how to come off these drugs

  22. My wife was told 12 years ago by a neurologist that she had PD. She was put on Requip and Sinemet, and doses have been increased over the years. She now takes 1 Requip and 3 Sinemets 3 times a day! In the past 6 months, 3 neurologists and an ER doctor told her she does not have PD! These drugs are now destroying her, and from what I’ve been reading there isn’t much hope to wean from them. Help!,

  23. My husband was diagnosed 2 years ago at 45 years old he never took the meds because we know of the terrible side effects but he has been taking pure levodopa powder from mucuna pruriens which I have been buying for the past year-and-a-half from a supplement store online it has been working beautiful for him up until 3 weeks ago when he woke up in the morning and was completely paralyzed and could not move a muscle. We went to the hospital nobody knew what to do for him I believe he has too much of the mucuna because most of it is dissolved in the body he has been falling stuttering and when he comes off of it he completely seizes up and his body starts twisting almost like dystonia and I feel this is all because of the mucuna pruriens he’s been taken for over a year-and-a-half he does not want to take the sinemet as he did try it already last week the low dose it didn’t do anything for him at all we just don’t know how to wean him off of this pure levodopa powder right now he is in bed frozen stiff so bad that he can’t even talk he can only move his eyes and it’s only when I give him the levodopa powder that he will be able to move again it’s a vicious cycle we don’t know what happened but all I know is he needs help and all the specialist we go to don’t know anything about mucuna all they say is to take the sinemet and an antidepressant meanwhile he’s in excruciating pain right now with no relief he doesn’t want to take anything anymore but I’m afraid to stop completely we just don’t know what to do and we are desperate for help

  24. Tina, try CANNABIS OIL rso IS THE BEST, IT WILL HELP WITH PAIN AND SYMPTOMS….AND IS A CANCER CURE TOO…..

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