So I am new to this forum..I am 59 and was diagnosed in 2011 with PD. I am now on disability from a 30+ years as an oncology RN.

[Annie11]

I take Sinemet 100/25 2tabs q4 hrs which makes me nauseous and sleepy. I have tried holding a dose if I'm at home then I have difficulty with my balance and have blurred vision. My neurologist is really no help at all spend 5 min with him to hear you really look great come back in 9 months. I believe I have a good understanding of how Sinemet works but does anyone have the same difficulty managing their meds to offset their sx's if so please enlighten me

[Annie11]

Hi clanchattan,

I hope you will find what you need...I find the participants are awesome and have a lot of well researched info to share..best wishes to your sister

[Norton1]

Hello Annie11

There are other facts that need taking into consideration in order to give a helpful answer to your question. May I ask, do you have a Parkinson's nurse in your area or what about discussing your concerns with your GP in the absence of a helpful neurologist?

Regards

Norton

[Annie11 in reply to Norton1]

Yes to both questions..I was enrolled in the walking / music program...felt good and had to stop due to personal reasons then came depression...just pulling myself out now and plan to return to exercises walking at least 20 minutes a day..I've also looked closely at my diet and have decided to cut out white anything eat more greens and fruits ...this I've gotten from this website and research on my own. YY for your questions Norton

[landman]

My GOD why are you doing this to yourself? First get a new neuro that YOU like. Keep a health log and adjust your healing devise whether it is drugs or natural remedies. What YOU are taking now does not agree with YOU. Get new drugs. Marijuana best of all.

[BillDavid]

I take Sinemet 25/100 x 3 daily. My Neurologist recommend a fast an hour before and after taking a pill. Works for me, no upset or noticeable side effects at this point.

[JohnPepper]

Hi Annie11. I am not a doctor, but just a patient. I have only ever taken sinemet for 3 months, after which I took myself off them, because they did not do anything positive for me. It sound to me as if you are getting far too much dopamine with that amount of sinemet. Speak to your doctor and ask him to reduce the dosage and see how you feel then. if you still feel nauseus i=on a small dose, then stop taking it. You have enough prpoblems without giving yourself any more. If he/she does not want to reduce or change the meds then find someone who does.

Good luck

John

[Annie11 in reply to JohnPepper]

How can I purchase your book

[JohnPepper in reply to Annie11]

Hi Annie11. You can look at Amazon, where you can buy the book, "Reverse Parkinson's Disease" in book or eBook form. Tell me if you have any problems.

John

[Annie11 in reply to JohnPepper]

Thank you...I will take a look..I neglected to mention in my first post that I had a "mild " heart attack in April 2012. My husband researched correlation between heart and PD but cardiologist negated the information. However cardiology did not have any answers other than I am an enigmas and shouldn't have had one. I have enjoyed reading your posts which are educational as well. Will buy your book...it's time for me to get started on a new road

[landman]

I guess. I have learned some remedies less is more.I suggest internet. 3 inch leaves good for making xxx coconut butter. Do your research internet.

[quirkyme]

oh, here we go again with the alternative treatments, like coconut oil. I will stick to regular medications.

I was an oncology RN (in a state hospital in Massachusetts that did radical surgeries) years ago. My husband takes only medicines prescribed by his primary care physician, neurologist, and now, urologist. That works well for him.

As for marijuana, from my work in hospice, I know it is good for GI pain/back pain, etc. and also for nausea. Where we live the state is now allowing medical marijuana and I fully support that along with the majority of voters.

My husband is relying on exercise and stretching for his back pain and naproxen when it's bad. But with the exercise it is much better.

As for depression, as a sufferer myself and as a leader of a PD group, depression kinda comes with the territory with PD. And the newly diagnosed (and loved ones) have to go through a trauma depression/grief depression reaction until we accept it and turn to positive responses, including gratitude (I used to be a chaplain). The APDA (American Parkinson's Disease Association Group), other groups, and neurologists (including movement disorder specialists) recommend exercise and maintaining fitness/muscle mass as the one thing that pays benefits now and later in the disease.

Good luck.

[Cags3 in reply to quirkyme]

Yes agree with you alternative treatments are just false hope. I will stick with the regular medications and exercise.

[Lindylanka]

The commonly used anti-nausea medication for use in PD is Domperidone. Once you have taken Sinemet for a while nearly all the nausea disappears. Or that is the case for most people. A few cannot tolerate it. A lot of the difficulties with Sinemet come from it being introduced with no/too little guidance. Ask your doctor about it. If you are in the US Domperidone may not be available though it is in Canada. Hope this helps.

[Lindylanka]

Forgot to add that PD nurses in the UK sometimes advise taking ginger in some form, ginger biscuits, ginger tea/ale/beer all can help. Ginger has anti-nausea properties and is also sometimes used to combat morning sickness. I used it in my early months on sinemet and it helped. I chose a sweetened ginger tea from my local chinese supermarket, though you can also infuse slices of fresh ginger.

[Annie11]

Thank you for all of the above information..have already fired my nuerologist and have requested a referral to a different one. The nausea is still present even if I decrease the dose. I have and will continue to explore natural remedies which I believe can be used in conjunction with standard meds. I feel I am coming out of my depression and will start my walking again...I was never prone to depression previously...John I would like to buy a copy of your book because I've read other information you've sent out and it makes sense to me, please let me know where I can purchase.

I also wonder if anyone has a tasty recipe to use the coconut oil /greens and berries together in a smoothie.. Greatly appreciated all of the replies. It's comforting to not feel alone !!

[Babygirl]

I takes Sinemet. I also take Azilect, Roniperole, Amantadine,. I take all of these drugs, and if they are doing me any good, I can't tail. The only side effect I have with them is sleepless night. Every now and then I see things that aren't there briefly.

[wifeofparky]

Please ask to be referred to a Movement Disorder Specialist. They are neuros with advanced training in PD. Once my husband switched to one, his meds were changed and he improved. Depression is a component of PD and needs to be addressed. I am also an RN. I educated myself as best as I could on PD and joined a support group. I hear your concern and hope you find the correct neuro really soon. BTW- where are you?

[Annie11 in reply to wifeofparky]

I was referred and have seen him 3 x. In the process of being referred to another neurologist..we have also joined a support group..I'm in Calgary Alberta Canada .

[wifeofparky in reply to Annie11]

I was hoping you were closer so I could give you names. Best of luck. Write down everything they say and every test and result that is run. Be proactive in your care and DO NOT assume every problem or symptoms is from PD. My husband also developed DVT and multiple PE's after his diagnosis and since the PD diagnosis was new, we thought it was related

[Annie11 in reply to wifeofparky]

That is very good advice...I have already requested all of my reports, drs notes etc. I didn't mention in my email that I had a mild heart attack in april2013 .the cardiologist could not find any reason why and would not consider PD as an underlying cause...hope your husband is well.

Where do you live?

[chirodoc]

I have very little tolerance for any of the recommended drugs. Wish they did help.I have been using Dr Hinz's Amino Acid protocol for the dopamine wiithout side effects to minimize the use of the RX's. See Parkinsons in web site:

Neurosupport.com. Meant for physicians but don't be intmidated...explore

[Annie11 in reply to chirodoc]

Thank you..I will

[JohnPepper in reply to Annie11]

Hi All. As I say in all these threads, "I am not a doctor". Having said that, doctors are trained to prescribe medication! All Pd patients are not alike! No two patients have the same symptoms! The one FACT that most people do not understand is that most Pd medications DOES NOT SLOW DOWN THE PROGRESSION OF PD! They only mask CERTAIN SYMPTOMS! If any medication does not help you with any of YOUR symptoms, then STOP TAKING IT! By not taking the medication you are not making your Pd any worse! If you can find nothng that helps YOU then don't panic.

I mentioned that most medication does not slow down Pd. There is one group of medication that does and can slow down Pd and these are MAO-b inhibitors, like Eldepryl and Azilect. They stop the body's natural process of breaking down all the chemicals produced by the body that have not been used by a certain time. I don't know what that time is, but it can be quite short. Can you imagine if our sex hormones were to keep building up in our bodies and we were not using them, what would happen to us? I think our brains would burst and we would fly around the room like a balloon that has been let go without being tied up. Why would we want to break down the dopamine we already have in our brain? If we could stop that breakdown then we could avoid taking levodopa to replace that dopamine. Levodopa medications have very serious side effects. Those side effects are worse than the Pd. Why even start taking that type of medication, if all it does is make us stop shaking for a few hours, but does not slow down the progression of the Pd?

Exercise is the only way I know to slow down the progression of Pd. I am told that Coconut Oil also slows down Pd but I have seen no evidence of that. Walking hard makes the brain produce something called GDNF (Glial Derived Neurotrophic Factor). I don't want to bore you with the explanation, but this is a medical FACT. It repairs the damaged brain cells, and therefore reverses the symptoms.

Contrary to what many reports tell us, the brain cells that produce dopamine do not get KILLED by the Pd they only become DISABLED! If they can be revived again, they start to produce dopamine again! That is a FACT! So, if you take an MAO-b inhibitor, like I did, and do some hard walking, for one hour three times a week, as I did, you may also be able to reverse your Pd, as I did. There are other things I also did, like getting rid of harmful STRESS out of my life. Mainly, I gave up my job, which was very stressful. I also took one Folic Acid pill a day and one chellated Calcium and Magnesium pill a day. All of these chemicals have a very strong influence on Pd. It is important to take chellated Calcium, as it is able to pass into the blood stream from the intestines and get into the brain as well. It is no use taking alternative medications if they don't get into your bloodstream and into the brain. They just go straight through you and out the other end.

I hope this helps you!

John

[Espo]

Greetings Anne11, I’m tardy in responding but I hope not too late to do you some good. First off, the obligatory disclaimer: I am not a medical professional and these remarks are provided for information only, and are not intended to replace a consultation with an appropriately qualified medical practitioner. Nothing here is an attempt to offer or give medical opinion or engage in the practice of medicine. What I am is a Parky who has been living with PD for 10 years, during which time I have learned that there is much controversial information afloat out there, response to medication can vary from one individual to the next and one hour to the next, and there are a lot of charlatans out there who would have you believe that they know the answer to how to slow, stop, or reverse the course of PD. Caveat emptor!

Nausea from Levodopa is common, which is one of the reason that nobody takes straight Levodopa. It is almost always combined with Carbidopa (Lodosyn) because one of the features of Carbidopa (Lodosyn) is that it can relieve the nausea caused by Levodopa. However, the common 4/1 ratio of Levodopa to Carbidopa (such as in your Sinemet 100/25) may not provide enough Carbidopa to contract the nausea, and additional Lodosyn is prescribed. Check it out.

[Shakinginnc]

I am on Sinemet also 25/100 4 times daily. I have nausea and terrible belching , plus when I take a dose of 50/200 ( two tablets) the dopamine hits my brain like a freight train and my tremors go into hyper drive with hands arms and face/head and legs involved. My question to you is how did you go about getting disability if your Dr. is of no help?

[Jeansm in reply to Shakinginnc]

Why do you take a double dose if it causes problems?

[Shakinginnc]

If I take a single dose it doesn’t last and my off time is even worse than the side effects of a double dose.

[Shakinginnc]

I am also trying to get disability and am now waiting on a hearing, I have PD neuropathy and cervical stenosis and nerve damage. My Neurologist is of no help at all in supporting me . I have a lawyer but I don’t feel very optimistic about the outcome😔

[Erniediaz1018 in reply to Shakinginnc]

Are you in the US?

[Shakinginnc]

Yes are you?