I first was diagnosed with Parkinson’s at age 32… which was 11 years ago… man, time flies when you’re battling a degenerative neurologic disease, eh? Following my official diagnosis, I was prescribed the standard Sinemet 3 times a day. This regimen worked for a bit as I got a better grip on what it meant to be a Parkie. Figuring out how the medication worked in my body and what the on/off fluctuations meant. Things that helped my symptoms, or what made them worse but I just didn’t feel like I was getting the full benefit of my medications.
I can remember one of my first support group meetings I went to and a man was sharing a story about how he went up into the attic to pull down some decorations for the upcoming holiday. While puttering around up there his medications went off and he began freezing, becoming stuck in the crawl space. I couldn’t comprehend that Parkinson’s could have that kind of power over your body and I started to learn more about medication fluctuations.
Years later, that I began to understand that the dyskinesia I was experiencing, was due to having too much dopamine in my body. Just think of it like this, when you take a medication such as Sinemet your brain gets bathed in dopamine. But there are some areas of the brain that didn’t need that extra chemical which then leads to side effects such as vomiting, nausea, dry mouth, constipation, or in my case, dyskinesia. We can’t find a way to medicate the very specific target area where the damage or dysfunction is occurring, so we end up flooding the whole brain.
My Neurologist eventually gave me a prescription for Sinemet 4 times a day. But this caused problems because I could be feeling on, not ready for another dose of medication, but it was technically time per my Neurologist’s orders to take another pill. Me being the angel that I am, I wanted to comply with his recommendation, but then it would make me feel worse.
Self-Medicating
This is when I began listening to my body. I knew what it felt like when I was going off and needed more Sinemet. I knew if I was going to exercise, eat protein or have a bowel movement… yes, everyone poops… that could impact the absorption of my medications. I noticed that sometimes I just needed a little bump of medication just to get my dose at full effect, while other situations I needed less. I began to self-medicate based on my personal diagnosis and the knowledge that I had acquired.
Disclaimer
**The following disclaimer is from my legal department:
All events or experiences described in this blog are solely based on Perky Parkie’s life adventures. And while some Parkies might have similar events, we are all snowflakes and no individual can replicate her exact experiences. Besides, who would want to? She is a bit nutty.
Furthermore, although freakishly smart, Perky is unable to diagnose, treat, or predict the progression of any individual’s Parkinson’s disease. Also, I want to remind you that my blog is strictly for entertainment purposes.
I’m not a doctor so, you should probably follow-up with someone a little more serious than myself.
Learning how my body reacts
This is how self-medicating came into play. I thought it was ridiculous that if I stuck with the schedule of taking my medications every 5 hours as prescribed, the hour before I can be totally off and debilitated, just waiting for the time to take my next dose. Then I go from so depleted of Sinemet to a wave of medication making me dyskinetic and nausea.
By self-medicating, I’ve learned how my body reacts to various situations, for example:
-I can’t eat large amounts of protein with my medications.
-I know that when I am exercising a small bit of Sinemet helps me fatigue less.
-I know certain foods that will prevent absorption of my meds… a perfect example is Oatmeal. Whenever I eat oatmeal my prescribed drugs, just sit in my stomach, and then when it would be time to take another dose which made me dyskinetic.
-When I am in a stressful situation, such as public speaking, my Dopamine depletes quicker.
Microdosing
This journey has led me to what I call microdosing. No, nothing as cool as microdosing with LSD or psychedelic mushrooms which I have been told make you more creative. But, come on… how more creative can I be? I use that concept along with self-medicating to control my symptoms. I take more Sinemet, as needed. Maybe I’ve done an exercise class and now I am moving slow and having problems walking to my car. I can break a pill in half, a quarter, or even a small bite off a corner of that little yellow tablet or even a lick. Ok, now that’s too micro. What I am saying is I use less medication, more frequently, based on the knowledge of my body and how my Parkinson’s would react.
Now some of you just take your medications as prescribed and that’s great. Being on a consistent schedule is helpful, but this self-medicating and microdosing has worked well for me. One thing to remember is I always stay within the boundaries of what my Neurologist prescribes. I take up to 4 tablets of Sinemet a day… respecting my Doctor’s orders, but how frequently and the amount taken is left up to my body is reacting.
I know I’m not alone in this… how many of you fabulous Parkies are self-medicating or microdosing?
Please get a hold of me when you get a chance, I have a few questions I was hoping you’d be able to answer. It’s very important. Thank you, Sandi
Hello. I was wondering any of you had DBS and are having any problems with pain or headaches in the head and neck area where the wires are?
Patrick,
I did notice in the beginning, I would get headaches from the wires being a little too tight, but now that I’m used them, they don’t seem to bother me.
Thank you. I guess I will just wait a bit longer. I have had the DBS only 7 months.
Good Morning All,
My name is Patrick. I am new here. I must say that this blog is so very useful. I am 57 years old, retired military and retired HS teacher. I wish there was a blog, as good as this one, say about 8-9 years ago. It would save me so much aggravation while having PD (diagnosed 2012). Essential tremors since 2006. Been a very painful learning process since 2008. I did get a DBS procedure just this year, but it does me no good, except it did stop the severe cramps and the heart attach and stroke like symptoms, that I was getting weekly or more before the DBS procedure. On July 202, I got a different procedure called Duopa. It helps but not at a full effect. I have about 50% of quality of life of what I had before. My Neuro doc says that is about the best I will get. I no longer use a walker or at times a wheel chair. Still need a cane when I leave the house. Once in a while I can drive. One thing that I cannot get rid of is the pain associated with PD. I got severe back pain and I am trying to get that work out ASAP. Hopefully I can be of help to anyone here. Have a great day. God Speed.
Ask your doctor about desoxyn for pain, Patrick.
Good Morning,
I was told about your blog website a month ago. I finally checked your blog site last night, I read the last 3 months of blogs and I really like it. I was wondering if anyone can answer these questions based upon your experience with PD or what you have learned from another person with PD.
A little about myself. I am 57 years old, I was diagnosed in 2012. I started the shakes (Tremors) around 2006. Around 2018 the DBS was mentioned to me but that was about it. I did some research and some complications came up(which I won’t bore you all with). I finally was able to get the DBS done in Jan 2020. Before the procedure I was suffering from cramps of my body and violent tremors. But since then the DBS, the only thing I don’t have anymore are the cramps. The tremors were still bad and taking 12-18 sinememt tabs per day. I did try Rytary a couple times, but those were not good for me. I was told I needed to get another procedure called DUOPA. Because the doctor could not get that “sweet spot” anymore from the DBS adjustments. I got the DUOPA done in late July 2020. That help me from using a walker and at some times a wheel chair when I needed to go to my appts. I still take an average 1/2 sinement every hour. my legs are always weak. I do try to exercise them daily. About every other day I still get those violent tremors. I would say that I am only at about 50% quality of life with the two procedures. Here are my questions below:
1. Once you were diagnosed with PD how long did you wait before your Neuro Doctor offered DBS to you?
2. How long has the DBS been working for you?
3. What kind of complications did you have before the DBS surgery? What complications do you with DBS?
4. How much C/L are your taking while you have DBS?
5. Did you get a second opinion once your learned you had PD?
6. What sort of body pain did you have to deal with since your PD diagnosis?
7. Did anyone have DBS and it did not work out got you or you know of anyone?
I think that is about it. Sorry for the tall order. Thank you in advance for your time. Have a great day 🙂
Patrick,
Thanks for reaching out. To answer your questions, 1. I got DBS the following month after my diagnosis. Very quick. 2. I’ve had it for 11 years. 3. Not a lot of complications, except I broke a wire which had to be replaced. 4. Up to 4 tablets of Sinemet a day. 5. No, I didn’t get a second opinion, because I had been to so many Neurologists prior. 6. Pain comes from being rigid and stiff. 7. Very few people I’ve heard of that have had bad experiences with, but there are always a few cases you hear of. For more information about my experience, search my blog for DBS… here is the link: https://www.perkyparkie.com/?s=DBS Hope this helps!
Ok, great. Thank you again.
my neurologist suggested the same flexible dosage guidelines you describe here since only I feel the effects good or bad. currently taking Sinnemet and Pramipexole. too little and there is tremor, too much and there is stiffness. DBS has been discussed.
Hi William,
I use to take the Pramipexole. Within a month I had to stop taking it because it made my tremors worse. I am only on sinnement because it is PD med thing my body doesn’t reject.
Hi all, great discussion. Since staying home more I’ve noticed a need for more Sinamet if I’m less active.
For those who have mentions DBS does it help bradykinesia (slow movements?)
I find I’m crazy sensitive with the heat? Does anytime else wrestle with hit weather?
Thanks.
Sage
Sorry I should have proofread before posting. Hot weather is what I meant!
The best thing about DBS for me is not having to take any meds. Used to take 1 25/100 C/L every 2 hrs, And yes, intollerance to heat is a PD symptom. I have it.and have a hard time in the summer,
Hey Perky, have you had DBS?
Karen,
Yes, I got DBS done 10 years ago, right after my diagnosis. Been life-changing!
I too am heat intolerant, on a hot day last July I blacked out fell and ended up with a concussion.
Hello Allison!
I can’t tell you what a blessing it has been for me to follow your blog. I have never commented on the blog before, so today will be my first time.
I was diagnosed 11 years ago, most of my symptoms have been a non-motor. Though I have very little tremor, I do struggle with managing on and off‘s. I was so glad to read the blog of today about self-medicating. Sometimes it is my husband who asks me, “are you due for a Sinemet?” I will look at my watch, and tell him, “not for another hour“. But he sees me slowing down, my voice getting very weak, and he knows what happens when I freeze, which scares him. So now I listen to him, and I am listening To my own body as well, and not waiting for the exact hour when I’m due for my Sinemet.
Gail,
So nice to hear about your adventures with Sinemet. Thanks for sharing.
I do the same thing. Dx for 3 years. Not on a huge amount of sinemet, 1/2 a pill every 4 hours or so. When my cycle is due, stressed, or fighting a sickness my meds aren’t as effective, so I take a 1/4 more. It may seem ridiculous but it works. It is just enough and I don’t feel overloaded.
It is said that if you seen one Parkey you’ve seen one parkey. It seems that are doctors believe that if you’ve seen one Parkey you seen them all. The best doctor you have on your side is your body it talks to you every minute of the day. Just listen!
Perky, One of the best things I have done is to learn to listen to my body and to self-medicate. When I was first diagnosed (11 years ago as well), I too was given the prescription that is given to many early-stage parkies – Sinemet 3x a day. Initially, this worked well but, like you, over time I experienced dyskinesia which became so bad it was debilitating. It was at this point that I decided that DBS was needed. That and the micro-dosing have helped tremendously. I sometimes will switch to Rytary during the midpoint of the day and use amantadine. I also use exercise as a medicine and find that on days when I can squeeze in a lot of exercises I feel much better. I also can change the settings on my neurostimulator and experiment with different settings until it feels right. Trying to determine how my diet, stress, and exercise impact the efficacy of my meds and making necessary adjustments has made a big difference in my fight against PD.
John,
I use Gocovri instead of Amantadine for dyskinesia which has extended my on time. A huge help!
I know when my meds are wearing off and when I need to take more. It’s so much harder to play catch up from running low. Sometimes if I have a really hard time getting them to work a sip of something carbonated and chew one.
I’m prescribed four 50/200 CR and eight 25/100. I normally take one of each every four hours. I’ve tried taking one without the other but it’s just not enough. On a good day I will only take four of the 25/100, but on a bad day (usually about 2 days before my period until several days after it starts) I sometimes can take all eight. Sweating from the heat can make me need more also. I also like having extra 25/100 on hand. I have them stashed everywhere so I never get stuck without some. Plus my clumsy self drops them all the time. I would love to know how many have fallen under the seat in my truck.
I can’t eat oatmeal either!!! I used to love to eat it for breakfast in the winter. Now I have to eat it as a bedtime snack. Wheat Chex is another no no ☹️
LJ,
Isn’t that weird about the oatmeal. But non of the literature speaks of it.
Could it be the protein in milk that is pllaced on oatmeal, Carb enter the small intestine within 2 hours of consumptio, bup prteins take abot 4 hujrs I am told.
I definelty micromanage m sinemet.. I take 1 x sinet 25/100 and 1 Rytary 162/242mg every 1.5 hoursln from 4:30am to about 6:00pm. I usualllly dose and end up in pain, which reminnds me to take a dose. But i might add a 25/100 iegular does to make up oor the one I forgot.
One of my PD friends does an eighth of a pill around the clock.
You had DBS surgery one year into your diagnosis?!?! WOW!!!
Ron,
I actually was diagnosed in March, 2010… then had my first DBS surgery the end of April the same year. I would do it all over again. Best decision I’ve ever made.
I second that! DBS has been a lifesaver for me and I feel blessed that I qualified – I had my procedure done at NIH as part of a clinical trial.
I was diagnosed with PD in February 2007. I have a great movement disorder specialist who talked with me about self-medicating after about five years of staying on a pretty strict medication.regimen. The meds I had been taking didn’t work as they had before.. My doctor suggested that I should listen to my body and take what I needed when I needed it, staying within the amount of Sinemet prescribe. I self-medicated successfully until the spring ol 2018. I developed severe dyskinesia and highly unpredictable off periods. . In May of this year, I had DBS surgery and now I’m finding that it is still a balancing act with mes, food, and the DBS device.
Parkinson’s is so different for each individual . Understanding the diisease, listening to one’s body, and taking the medication that meets ones’ needs can make a difference in your quality of life.
Ruth,
It sounds like you have a great Doctor taking care of you. Thanks for sharing!
I do the same thing. Stressful things make my symptoms worse, for example, heat and humidity, this summer has been bad, even with DBS. Hopefully I can cut back on the sinemet as the weather gets cooler.
Hi Allison,
Have you ever thought about getting Deep Brain Stimulation (DBS)? It works particularly well for patients who are dyskinetic. You will benefit from it if Sinemet helps you but you dont like the side effects it causes. Just a thought…
Patrick,
I got DBS surgery 10 years ago… it’s been a life saver!
I saw that movie! The young lady microdosed to get smaller or larger. I have to say you are impressive in the way you manage your needs. It’s not a Wonderland, but you are making the best of it.
Dad,
You got it. Yep, managing my medication is a balancing act… just hope I don’t go chasing white rabbits.
I do much the same as you describe.I modify my meds timing to fit in with any particularly challenging tasks.As you say,after a while you get to understand what works and what doesn’t. I agree with you that it’s sensible to stay within the overall daily dosage that you agree with your specialist.
I do it too Allison! Haven’t tried just a lick yet but have taken 1/4 pill. Just a dab will do ya sometimes!