Finding Balance with Medications

Jean Mellano avatar

by Jean Mellano |

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(Photo by Michael Green)

What is my strategy?

I plan to take Parkinson’s disease (PD) medications as prescribed to get me to a point where I can function well and really push hard in my exercise. Then, I hope that a combination of exercise, diet, meditation, yoga, and massage will help me to deal with my PD progression and symptoms.

Currently, I take Sinemet (carbidopa-levodopa) 25/100, two tablets, three times per day. With my doctor’s guidance, I am weaning off a daily 4 mg Neupro patch. Sinemet has alleviated my internal tremors. However, I am still extremely fatigued all of the time.

Do I really believe the medications are helping?

I have never had any “aha!” moments as a result of taking medications. It was never like “wow, I feel so much better now.” I don’t experience the “off time” that some have when the meds are wearing off shortly before the next dosage is due. So, I question how much the medications are really helping me.

Why do I want to reduce or halt my PD medications?

Opioids target the brain’s reward system by flooding the circuit with dopamine. In the late 1990s, pharmaceutical companies reassured the medical community that patients would not become addicted to prescription opioid-based pain relievers. They were wrong — there is currently an opioid overdose crisis in the U.S.

Although opioids get more media attention, abuse of benzodiazepines (benzos) is equally rampant. Benzos create surges of dopamine in the body. Since their introduction in the 1960s, this class of medications, which includes Valium (diazepam), Ativan (lorazepam), and Xanax (alprazolam), have been widely prescribed to treat anxiety and insomnia, alcohol withdrawal, and other conditions. These medications must be prescribed with caution because they can be addictive.

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Levodopa, a component of Sinemet, may improve PD symptoms because it causes the body to make more dopamine. Neupro (rotigotine) patches work by delivering the dopamine agonist rotigotine through the skin directly into the bloodstream. Rotigotine stimulates dopamine receptors in the brain. This, in turn, mimics the action of dopamine, which is found in lower-than-normal levels in the brains of Parkinson’s disease patients.

My conclusion

From my simplistic, high-level view, I see a common denominator (dopamine) in the three categories of the medications mentioned above. Even though my brain may not be functioning properly due to PD, taking drugs that impact the brain does not sit well with me.

What will be said about PD medications in the future? I am not sure I want to find out. This is why I am choosing to wean off as many of the PD drugs that I can. I want to continue to seek balance and to pursue my more holistic approach to diet and exercise to tame the PD dragon.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Gloria avatar

Gloria

I'm taking the same dose of Senimet just tired all the time or stomach upset. How do you get energy?

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Jean Mellano avatar

Jean Mellano

Hi Gloria,

It is getting harder and harder to get the energy to work out. I was a disciplined athlete (cycling, race walking and weight lifting, dancing) prior to being diagnosed with pd. I have to dig so deep now to pull out the energy required to do the exercising I do. But, the fatigue can be crushing and no amount of sleep or rest can help.

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Forrest avatar

Forrest

I am struggling to work full time. I get to work really early to prepare for the day. Mid way through the morning I've very little stamina left in the tank. I limp through the afternoon. When I get home I sleep until tea then again till bedtime, then through the night. As the main wage earner, I'm trying my best to stay at work for my family. It's too tough and I wonder how much longer I can manage.

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Jean Mellano avatar

Jean Mellano

Hi Forrest,
I am so sorry to hear of your plight. I am retired and do not think I could possibly work feeling the way I do. You are so strong to be able to do that. Sometimes it is hard to explain to others the kind of fatigue those of us with PD have. I find no amount of sleep can make me feel better. Hang in there...

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Sandi Leon avatar

Sandi Leon

after reading these articles its making me really sad because as it goes on and seemingly getting worse I'm thinking there is no other thing to do except take more meds to even walk and more drugs to be relieved from the horrible pain in my legs. i go to the gym now 3-5 times a week. but like it said the energy gets me down at times then i have to sleep at least 0-15 minutes then i am good to go. and dementia...this is really scary to me as the forgetting things are already starting to happen. I don't like what is happening but its quite apparently going to do its thing no matter what i do.

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Jean Mellano avatar

Jean Mellano

Hi Sandi. I am so sorry my article has discouraged you. I find my outlook is better on some days while much worse on other days. I often go back to my blog to remind myself what I must do to get through another day with this disease. https://slippedawayblog.wordpress.com/2018/02/26/acceptance-gratitude-and-attitude/

I wish you well Sandi, hang in there

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Mary Schroeder avatar

Mary Schroeder

Hi Jean
Kudos to you for speaking out about two very difficult issues. Mental illness impacts the lives of so many and I send my sympathy for the tragedy you have endured.
I stumbled into your blog as a result of my use of Neupro, not for PD but for severe RLS. After years of taking Sinemet (both the 25/100 for days and 50/200 for nights) with moderate success, I began using the Neupro Patch. Although the patch provides more reliable relief, I have had to switch from the 3mg patch to the 4, and find it to be very difficult on my skin -- and the cost is becoming prohibitive. I am also trying to switch back to the Sinemet but am frustrated by my inability to sleep more than 3-4 hours/night. How do you get through the nights using Sinemet?

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Jean Mellano avatar

Jean Mellano

Hi Mary, since that article, I am still trying to find the right combination of Sinemet and Neupro. Currently, I am on (2) 25/100 Sinemet 2x/day and 2mg Neupro patch. Sinemet does not affect my sleep that I know of, but Dr. originally suggested taking Sinemet after lunch and at night. After several days w/o a morning dose od Sinemet (although I put my Neupro patch on first thing at around 7am.), I was so gfoggy and spacey, I started taking my first dose od Sinemet after breakfast and take second dose around 2pm. The larger the patch gets as u go up in mg. becomes cumbersome to apply as there is only so much real estate on the arms and legs to use it LOL. I do take a magnesium capsule before I go to bed and that may or may not be helping me sleep. Since my fatigue is so bad, someone suggested I be tested for sleep apnea which can be a symptom of PD in some. Rgegarding financial assistance for SInemet/NEupro, sometimes the drug manufacturer will provide co pay assist for the first year. Also, check out tafcares.org and panfoundation.org for co pay assist. Good luck and let me know how you make out...

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Nancy Easun avatar

Nancy Easun

Hi Jean! thanks for your article and information presented about PD medication. I recently found a site that delves deeply into withdrawal symptoms from levy-dopa (pdrecovery.org). it set me into a direction of awareness about what this medication does. It angers me that I was not informed about the addictive nature of levo-dopa and the difficulty weaning off of it. I was diagnosed with parkinson's 5 years ago. one year later I was diagnosed with stage 3 breast cancer and went through chemo, radiation and a mastectomy. So needless to say it's been a rough journey for several years, but I'm still here and growing daily! I changed my diet to vegetarian then started an exercise regime of swimming 3x a week with days in-between of yoga or walking or running. Also recently I started meditation. I have managed through all of this to keep my parkinson's at bay, with very few symptoms for years. however having recently noticed more dystonia and movement issues I am now concerned I am being affected by my medication more than my parkinson's. I'm assuming you were sensing the same about yourself. I have decided, according to the valuable information presented through publications on the pdrecovery site, that I will start reducing my meds. I'm taking 3 1/2 pills per day (Apo-levocarb: 3 full pills at 6 a.m., 10 a.m., 2 p.m. and the final 1/2 pill at 6 p.m., as well i'm taking amantadine 10mg 2x day at 10 and 2.) I'm curious to know if you suffered any withdrawal symptoms when you were reducing?
Any information would be truly appreciated!
thanks!
Nancy

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Jean Mellano avatar

Jean Mellano

hi Nancy
thnx for your feedback. Interesting website, thanks for sharing... when i went down on my C/L, it was titrated by my neuro and i did NOT suffer withdrawal. however, i did suffer what i believe was withdrawal on getting off neupro patch even though it was titrated by my dr. i gritted my teeth and for 3 days i felt horrible. sad to say i am back on neupro kicking and screaming. i feel terrible on the meds but even worse off the meds. my worst symptoms are bradykinesia and fatigue. i seem to be able to keep stiffness at bay by getting massage once/week. good luck to you. i do believe the meds are bad, however, they do help some people a lot, just not mre :-(

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Cyndi gibson avatar

Cyndi gibson

How do you know for sure you have Parkinson’s. I started having symptoms when my brother died. I think I was taking too much ambien and lorazepam . Due to my severe
Confusion I was not aware I was not taking the lorazapam when I ran out. I had hallucinations falls tremors weakness in my legs. (I think weakness due to minimal exercise wit this pandemic Etc etc and was diagnosed with parkinson. I really want to taper off the sinemet to see what happens. My neurologist says no. My husband says no. They are aware of my thoughts on lorazepam withdrawal but believe I have Parkinson. I go through this whenever I have no symptoms of parkinson. But I don’t want to take sinemet if I don’t have to.

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Jean Mellano avatar

Jean Mellano

Hi Cyndi, I am sorry for the loss of your brother. My PD was diagnosed 7 months after the suicide of my life partner. More than one neurologist has told me that emotional trauma can trigger PD. I went to 11 neurologists for "2nd opinions" Although it is not considered a diagnostic tool, until I got a Datscan, I was not convinced I had PD. I wrote the article you are commenting on in 2018,. Now, I do take generic carbidopa/levodopa, Neupro and selegeline. I get some relief from this regimen, but I also exercise, eat a plant based diet and try to reduce my stress levels as much as possible. Who knows what is making the most difference in my quality of life. There are so many unknowns with PD. People have different symptoms and some remedies work for some and not for others. I understand your apprehension about taking drugs if you dont have to. Anxiety, depression and apathy can all be non motor symptoms of PD. Unfortunately, with PD, because there are so many symptoms depending on which area of the brain is affected many drugs are prescribed for us. Sinemet (carbidopa/levodopa typically provides relief only for motor symptoms like tremors. Have you gotten a second opinion, preferably with a movement disorder specialist?

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Colette ayliss avatar

Colette ayliss

Hello! I was diagnose with PD in 2017 a GP noticed my right hand tremor and told me to get it looked at, a MRI appointment was booked but I didn’t know I was claustrophobic and could not have the MRI. I pity anyone with PD it is an awful disease and you just have to try different medications to see what suits you. PD is so different for everyone. I am taking 6 x 100/25 Sinemet a day and with a 2 mg Neupro patch at night. I find atm this is working but now I’m told I need to come off some Sinemet, so I tried coming off 1 x 100/25 tablet this week it has made me so ill and shaky after 3 days that I have had to go back on it! I do exercise each day and try to do most house chores but find it hard to go outside this maybe to do with Covid. My hubby is caring for me and does the shopping and cooking to help me. I don’t know what I would do without him! My question is am I taking too much Sinemet with a Neupro patch as I feel good doing this atm? Please reply

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