Category Archives: sinemet

Side Effects of Parkinson’s Medications

Writing for my partner, H, 55, who was diagnosed with PD about 6 yrs ago.  Went on Sinemet last Sept when his body went rigid.  I “re-met” him in October and  immediately began researching alternatives.

H asked me to move in last Jan to assist with his care.  Since then, we have both turned our eating and exercise habits around 360*, his esp from the comfort of a steady diet of Coke, cookies and pizza to Dr. Wahl’s suggestions, tons of greens and veggies, no sugar/no wheat/little dairy.   

Exercise has increased to nearly daily walks, up to 4 mi, though it requires all his concentration to keep his right foot from dragging.

Body work — foot holding and gentle massage, Bowen as best I can understand it from books (no local practitioner).

All of this seemed to have a positive effect on his symptoms, several weeks with many good tremor-free days, mood elevated and better sleep until a few days ago when his tremors became suddenly more violent and muscles knotted again.   The massage gives him relief from the tremors for a few hours.

Is it possible that the 4 Sinemet he’s been taking daily might now be causing the same  symptoms they were supposed to help?

Nancy

Response:

I extracted the following information on side effects for Sinemet, a Parkinson’s medication, from www.drugs.com which is quoted below. There is quite a bit more information on the website you may also want to study.

Seek medical attention right away if any of these SEVERE side effects occur when using Sinemet”  

“Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black, tarry stools; blood in vomit; chest pain; confusion; depression; fast or irregular heartbeat; fever; hallucinations; mental or mood changes; muscle pain or unusual stiffness; new or increased involuntary movements; severe abdominal pain; severe light headedness or fainting; sore throat; thoughts of suicide; unexplained fever or sweating; unusual bruising or bleeding; unusual or painful movements or spasms of the face, eyelids, mouth, tongue, arms, hands, or legs; vision changes (blurred or double vision); yellowing of the skin or eyes.”

“Nervous system effects occur in as many as 50% of treated patients on long-term therapy and include involuntary movements and mental status changes most frequently. The types of involuntary movements due to levodopa have been characterized as choreiform, dystonic and dyskinetic. Fluctuations in motor function occur frequently and often increase as the duration of therapy increases.”

“This is not a complete list of all side effects that may occur. If you have questions about side effects, contact your health care provider. Call your doctor for medical advice about side effects.”

Response

My reading of the above side effects suggests that the answer to your question is yes – it is possible that the medication might be causing the same symptoms they were developed to help. Of course we do not know whether this is happening in your partner’s case.

The reason the FDA is involved in regulating prescription medications is to insure that the side effects are well documented.  As you will be able to see from a review of the side effects that are reported in the drugs.com website, the documentation on possible outcomes is exhaustive.

It is important to keep in  mind that everyone’s body is different. There will be a wide variety of reactions to any medication – some good and some adverse. My research reveals that Sinemet does provide relief for some people, but for other people it can cause side effects that can be worse than the symptoms they were supposed to address. This is really not that different from using any prescription medication regardless of the reason for its use.

It would be a good idea at this point to get a follow-up consultation with your doctor who will be in a position to evaluate what is really happening here and possibly suggest alternative courses of treatment.

Robert Rodgers, Ph.D.
Pioneers of Recovery’
http://www.pioneersofrecovery.com

Little Appetite Since Starting to Use Sinemet

I have had “diagnosed” Parkinson’s for about 5 years. I have been on Sinemet for about one year.  I have had trouble keeping weight on. In fact I have lost about 13 pounds, probably due to the fact that I have had little appetite since starting to use Sinemet.

Also, I often get “stomach aches” after eating and have to lie down. I can’t pinpoint any particular food that causes this distress. Have you come across this situation in your  very many conversations with people who have Parkinson?  

Thank you so much for your help.  

Sydelle

Response:

Everyone responds differently to medications. Each body is uniquely configured. That is what makes each person so very special.

Sinemet is certainly at the top of the list in terms of preferred medications to treat the symptoms of Parkinson’s and it has been shown to help many people. My research reveals it is not necessarily a good solution for everyone.

You ask if I have come across a situation similar to yours in my research. Yes, some people are unable to tolerate Sinemet. It would be very advisable to discuss the symptoms you are experiencing with your neurologist as soon as possible. They are the experts on prescription medications that can be taken to address the various symptoms of Parkinsons.
And of course they are the individuals who are qualified and trained to help you solve this problem. Neurologists attended school for years to learn how to help people just like you who have experienced the side effects of medications.

Since the appetite and digestive issues began after starting the medication, my guess is that these symptoms are likely due to the medication. Your doctor could determine this for certain.

The FDA does a good job of identifying and publicizing all possible side effects from medications. Below is a short list of side effects from Sinemet which I extracted from a search on the internet. It is a good idea to do your own search as well:

Side effects of Sinemet

Confusion; constipation; diarrhea; dizziness; drowsiness; dry mouth; headache; increased sweating; loss of appetite; nausea; taste changes; trouble sleeping; upset stomach; urinary tract infection; vomiting.

Gastrointestinal
Exacerbation of preexisting ulcer disease with severe upper gastrointestinal bleeding has been reported.

Gastrointestinal side effects including nausea and vomiting are the most common adverse gastrointestinal effects of levodopa. Anorexia and, rarely, gastrointestinal hemorrhage have been reported.

As you can see – the symptoms you currently experience are contained in the listing of some possible side effects. Your doctor is the best resource to solve this problem.

My research has revealed that some people supplement their prescription medications with natural sources of dopamine. One such source is discussed on the fava bean website:

www.favabeans.parkinsonsrecovery.com.

The host of this website – Aunt Bean – will be offering a workshop at the Parkinsons Recovery Summit in June where she will give detailed instructions on how to make your own dopamine from fava beans at home. This is precisely what Aunt Bean does to treat her own Parkinson’s symptoms very successfully.

In summary, it appears as though your body is telling you that this particular is not helpful. Discuss the problem with your doctor and explore other options with their assistance. If you decide to begin making a natural source of dopamine as Aunt Bean does, you will need to work very closely with your doctor. While fava beans and Mucuna are natural sources of dopamine, they are still medications which will influence the effectiveness of whatever other medications you may decide to take after consulting with your doctor.

Robert Rodgers, Ph.D.
Pioneers of Recovery
http://www.pioneersofrecovery.com

Mucuna

I recently started taking NOW brand Mucuna (120mg LDopa) along with my 1/2 Sinemet tablet in 4-hour intervals. Its been only 3 weeks, but I can feel the Mucuna working, even with the Sinemet dosage halved! I also ordered ZANDOPA from India. Can you comment on these 2 products?  

Thanks.

Javier

Response:

It is wonderful to hear that the source of mucuna (which is a natural source of dopamine) which you have discovered seems to be helping significantly. Hooray! From interviews I have done with herbalists, there are few, if any, commercial sources of high quality Mucuna that are available.

Andrew Bentely, a  herbalist who was featured in the 2009 edition of Pioneers of Recovery, reports that he does not prescribe Mucuna for his patients because he is unable to find a supply that is reliable. What he looks for is Mucuna that is grown in the wild which he has been unable to find anywhere in the world.

I have even had calls from some people who report that their supply of Mucuna had been working beautifully for them until they received a re- shipment – which fizzled. As you can see, reports are scattered all over the place.

I do not have any recommendations for a reliable source of Mucuna for these reasons. If sounds like your source may be a goldmine. I hope it continues to be useful.

One of the presenters at the Parkinsons Recovery Summit, Aunt Bean (Sandra), will offer a workshop where she will give point by point instructions on how to make their own dopamine at home from the sprouts of fava beans (or the tips if you have a garden). Her homemade tincture offers her wonderful relief from the symptoms of Parkinsons that she currently experiences. The Summit this year is in Cincinnati, Ohio June 22-23.

I do not have any specific information about the medicine you ordered from India, though I am certain it would depend on the specific source.

Robert Rodgers, Ph.D.
Pioneers of Recovery
http://www.pioneersofrecovery.com

Medications Not Helping Mom’s Insomnia and Depression

I am in Australia but I am asking you our question on behalf of my mother who lives in Victoria BC Canada and who has been diagnosed with PD about 5 or so years ago. In the last few years she has had her medication changed a few times and each time it has not agreed with her.

Presently she is on Sinemet 25/100 mg 2 tabs 4x per day.  She feels terrible most of  the time and phones me often saying she doesn’t know what is happening to her.  She can’t sleep at night and dreads going to bed. She feels depressed and is reluctant to take additional depression meds the doctors suggest.

The doctors she deals with seem to be very ambivalent and basically either change her dose or refer her to a shrink.  The deterioration is now very bad and it seems these  meds are making her worse not better.  

She has always been convinced she doesn’t have PD and certainly besides slight tremoring in the hands it seems she may have a point.  She does gets restless legs syndrome. We have NO confidence in the doctors where she lives and it is so difficult to get referrals to see someone else in the bureaucratic Canada health system.  

She lives on her own (insists on it), still drives, is 84 years old, tries to take her dog for a short walk everyday and besides reduced mobility is completely sane and lucid.  Some days she is good, usually after she has managed to have a fair nights sleep but generally because of the lack of sleep feels awful.  

Is there someone or some organization in Canada or the USA you can suggest can possibly help her.  She would like to get off the Sinemet as she doesn’t believe it is helping at all. I tend to agree although am reluctant to push her into doing that.  Your assistance and advice would be much appreciated.  

Kind Regards,  

Peter

Response:

It sounds like your Mom has given prescription medications serious consideration but regardless of what is taken or how much, the medications are not helping her feel better. Thus far she has pursued one option. The good news is that there are dozens of options she can consider that have been affording people with Parkinsons profound relief from their symptoms. Of course the challenge turns on deciding which options to pursue.

Wouldn’t it be incredible if your Mom could find information in one place about many of  the options that are helping people reverse their Parkinsons symptoms? Believe it or not, that golden opportunity will soon be available. Timing on your question could not be better.

You specifically asked if there is some organization in the USA of Canada that might be of help. I suggest that your Mom sign up to attend the 2012 Parkinsons Recovery Summit which will be held this year in Cincinnati, Ohio June 22 and June 23. Health Care Practitioners who treat Parkinsons using many different therapies and treatments will attend the Summit. Many will offer consultations. Some are offering workshops.

You can find more information about the Summit by visiting the Summit website:

http://www.summit.parkinsonsrecovery.com

Present at the Summit also will be some of the contributors to Pioneers of Recovery who succeeded in reversing their own symptoms.  The Summit will be a historic event for people with Parkinsons, since it will convene together at the same place and time people with Parkinsons who are all on the road to recovery.

Robert Rodgers, Ph.D.
Parkinsons Recovery

Numbness in Feet and Legs

Can someone help me I was told I have Parkinsons in 2007  I am on 7 Sinement a day and I have numbness in feet and legs and difficulty walking. I have to walk and work. I have had two back surgeries and I am looking for help

Kathleen

Response:

I have been conducting research the past 6 years on the various factors that cause symptoms of Parkinsons Disease the therapies that are helping people recover. The good news for you is that there are incredible resources that are available to you. Start listening to archives of the the Parkinsons Recovery Radio Show. You will discover a wealth of information and resources there. Any of the shows I have aired can be downloaded for free. Many of my guests give out their contact information so you can contact them directly for further input.

Parkinsons Recovery is sponsoring a Summit in Cincinnati Ohio June 22-23. Why not attend the Summit? You will discover a wealth of resources there.

http://www.summit.parkinsonsrecovery.com

Finally, you might consider taking daily baths with Epson salts which essentially are a form of magnesium. I am guessing the source of the problem may lie with a deficiency of magnesium in your body. You might discuss with your doctor the advisability of taking baths with Epson salts.

 

Help is available. You have taken the first important step by asking for it!

Robert Rodgers, Ph.D.
Pioneers of Recovery
http://www.pioneersofrecovery.com

Sinemet Titration

Lexie forwarded the progress report below and gave me permission to post it. Lexie is one of the 11 individuals who contributed to Pioneers of Recovery which was just released last week.
Robert Rodgers, Ph.D.
Parkinsons Recovery
Because of LDN, I have now titrated off of ALL of my ‘Sinemet – not even using that very occasional dose when I feel I might need it for a very long day, etc.  Now, when I have a foot tremor, I refuse to let my body go there and I just consciously “stop” the tremor and it is working! 

 

Wishing you and yours a beautiful Thanksgiving Holiday!  Thank you for all that you do to give people with PD hope that they can and will get well if “they choose to” and if they do the work that it takes.

 

Lexie 

How Do I Wean Myself Off of Sinemet?

I recently found out after 10 years I do NOT have PD. I am trying to get off Sinemet after being on it for 5 years and having a very hard time. I can’t find a single doctor with any experience in getting people OFF Sinemet. The doctor that diagnosed me as not having PD has been backed up by 4 other neurologists. While I have great respect for him I am very worried about NMS or DAWS.

Since he admits I am a bit of a novelty I am very concerned about his plan to get me off Sinemet in a week. I’ve been tapering very slowly due to debilitating muscle cramps that have torn muscles in my hip and knee. I am afraid this rapid detox while attractive might be fatal if I am living on the edge of DAWS as I suspect I have been for some time.

I would feel much better if I knew of a doctor with experience in weaning people off sinemet. Do you know of any such centers or doctors? I live in central California but can travel.

Thank you.

Laurie

Response:

I can certainly emphasize with your need to wean yourself off of medication that you do not need.  This process takes time and patience. In my research, I have found a wonderful resource who has helped many people wean themselves from one medication or another. He is Randy Mentzer, a compounding pharmacist. Randy is not a doctor, but he explains that doctors are not traineD to help people with such challenges. This is precisely what compounding pharmacists are trained to do. I would thus suggest that you consult with a compounding pharmacist.

A compounding pharmacist will compound a medicine with – say – a 95% potency which you can take for a period of time. If there are no side effects, the potency will gradually be reduced over time – little by little – until you need take none of the medicine. this process may take as long as a year or two. If there are reactions to a reduced potency, Randy will jump up the potency and then reduce it more gradually.He works closely with doctors as he changes the potency of medications for patients. You cannot make these reductions by cutting pills down.

In summary, you cannot go cold turkey and you cannot get off of the medication within a week. It takes time and patience to wean yourself but it can be done.  I suggest you find a compounding pharmacist in your local area and get a consultation. Randy also does phone consultations if you are unable to find someone locally. His e mail is: Randyrphconsulting@gmail.com

Robert Rodgers, Ph.D.
Road to Recovery from Parkinsons Disease
http://www.parkinsonsdisease.me

This May Be a Little Premature But …

This may be a little premature but I am so excited I had to write you. First of all I want to thank you for your dedication in helping so many people out there with Parkinsons or should I say people with Parkinsons like symptoms. You truly are an angel.

I was diagnosed with Parkinsons about 13 years ago and have been struggling with this awful disease since. I am a nurse and had to leave my job about a year ago. I have done every alternative Rx you could think of. I started listening to your radio show over a year ago and even attended your jump start program in 2009. So I have had the pleasure in meeting you. My symptoms started getting worse and the medication Sinemet was not helping – leaving me very fatigued and not able to walk across the room without assistance.

Then about a week my husband saw a old friend and he purchased some honey and bee pollen from him. I might add this guy is a bee keeper and has his own honey and pollen. Well I started taken a spoon full of pollen with a spoon of his honey and I swear I felt a little better the next day, so I have been faithfully take a spoon of each every morning and feel it given me a lot more energy.

Then I came across your interview with Cheryl which was a blessing. I really believe God put us in the places we need to be at the right time and we all need to tune into our higher self. Listening to Cheryl’s story really interested me because her story sounded a lot like mine. I actually called in and spoke with her. I was the last caller Rose.

I immediately called the Parkinsons Resource Center and talked to Ms Rosen and she got back with me. Since I live in Maryland she suggested I see Dr Branden Stack in VA. And as it turns out he is the Guru of this treatment. I made an appointment and saw him today.

OMG, after his examination he told me my jaw was grossly out of alignment – he stated 1 inch – and immediately gave me an order to get a mri which I immediately went next door and tried to get it done on the same day but could not. I have to wait and get it done tomorrow afternoon. Dr Stack says he can help me.

So I know it is a little premature, but I have a gut feeling this is my answer to getting my life back as Cheryl so summed it up in those words. I will keep in touch and let you know my progress. Like I said my mri is tomorrow and my TMJ might have to be corrected with TMJ surgery which is minor. When I think of all the years and all the money I wasted, although I take that back, this was a learning experience and I am truly a different person today because of it. THANK YOU ROBERT.

Rose

Power of Hormones

Dear Robert,

Apparently it is not only toxins that can make our lives uncomfortable.

I was diagnosed with Parkinson’s in March this year. I had rigidity in my legs and was shuffling.

I have had to increase the Sinemet dramatically following a five day stay in hospital with a very bad infection.

I saw the Neurologist and I asked for medicine to help me through the night as I was devouring the Sinemet. He was reluctant to give more medicine and agreed to give sleeping tablets.

He asked me to visit again after three weeks but, not to take any meds’ for 6 hours prior to the appointment. He wanted to see my symptoms.

He was unable to find any symptoms of Parkinsons.

He asked me so many questions in an attempt to understand what he was dealing with. I had been taking seratonin for depression for 2 years prior to the diagnosis.

Extra seratonin can interfere with the production of Dopamine in the Brain, I may not have Parkinsons!

How about that?

Paul


Response:

There are over 40 hormones involved that have to be balanced in the body each and every moment. Your story eloquently illustrates how dopamine is only one of these many hormones that are critical to sustain life.

I am so happy to hear that your symptoms are resolving. It doesn’t get much better than that, eh?

Robert Rodgers, Ph.D.
Parkinsons Recovery

Resources
Dehydration Therapy: Aquas
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Books
Road to Recovery from Parkinsons Disease
Pioneers of Recovery
Five Steps to Recovery
Meditations for Parkinsons