Last night, we were returning from the mall and when we reached home, I could not get out of the car. My wife was driving as she always does. I had started the day off with a later than usual dose of Sinemet (25/250) and had given enough time - about an hour for the most recent dose to kick in. Yet, after reaching home I couldn't get out of the car. I had just totally lost my will power!I was also intensely panicked and scared.
My wife got me Inbrija and after that didn't work, brought me another half of the 250 mg and when that didn't work, brought me the other half. That did not work either, so she brought me a 10 mg Propranolol and that kind of worked for at least letting me get up and stand next to the car so that my daughter could bring out the wheeled office chair and push me back to the house. It was thoughly frightening and embarrassing to say the least.
What frightens me even more is the realization that just one day of not taking my meds on time can mess with my response right away. It wasn't always like that even though doctors tell you to always take meds on time. In the old days if I had a situation like this I would just pop in a couple of those 250 mgs and go about my day with no worries. I can't do that anymore because I have low blood pressure in the evening. So, every pill counts.
Do you have any such experiences to share or have any other thoughts? Please do share.
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pdpatient
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I'm glad I have only experienced freezing in this severe form once. During the worst period of my PD, I started a long-distance trail along the coast of Portugal on my own. At the end of the day, I suddenly stopped in the middle of the path for no apparent reason. It was bizarre, probably due to exhaustion and a lack of levodopa. But then, fear struck me. There was no one else around, and I realized that this could be the end of my journey. Total blockage. Unexpectedly, it started raining, and I had to make sure I stayed dry. As I put on my rain gear, I realized that the freezing had disappeared. Relieved, I continued on the path without any problem and reached my final destination after another week as planned.
Perhaps the distraction and positive turn of events provided a tremendous boost, but it remains a strange experience…
I have experienced complete med failure a few times, always when I ate too much. The worst was when I couldn’t get to my meds and had to have some friends come and rescue me since my husband was working a distance away. I try to be aware of the timing of my meds and meals, but I have been losing weight and have to eat as much as I can whenever I can. Thank goodness for my Apple Watch and Siri.
This disease is very difficult to understand and yet it puts life in perspective. I used to be morbidly obese and a uncontrolled type 2 diabetic. Now I am just overweight and a well controlled diabetic thank you Parkinson's 😂😎
I was a foodie as younger ones call themselves these days. Loved food and I still do. Parkinson's does for me what Ozempic does for the overweight people these days. I no longer eat during the day.
But I don't know what my life would be without Parkinson's. I just know this - I look like 20 years younger and feel 20 years older 🤓🤓. Damn.
Makes me think of my cross-in-the-sand analogy. The flow of dopamine gets over-ridden by the release of adrenaline - in me, if not all PWP. It's like a traffic intersection where only one of the two flows can flow at a time. Anxiety blocks off the flow of dopamine, so if your dopamine isn't flowing due to protein intake and timing mistakes, don't panic. Just breathe, stretch and rest. And get distracted by something more interesting. Thanks for sharing; it's a good topic.
Can anyone else endorse my adrenaline/dopamine cross-in-the-sand analogy? It is just my own understanding of my own symptoms. If a prolonged period of chronic stress has remodelled our neural pathways to make the adrenal response unatuarally dominant, it inhibits and compromises the normal flow of dopamine.
This explains the mystery of dyskinesia as a withdrawal symptom of levodopa. As I see it, dyskinesia is caused by the combination of adrenal shock at the sudden drop in dopamine supply, and [excess] dopamine (from an artificial source) creating involuntary movement in the system. I put 'excess' in brackets because there might be a better word, like 'free radical' or 'escaped'. (I'm not a doctor, so I'd appreciate some verification of this from a medic.)
It's like a traffic light goes green for dopamine (normal traffic) when you take C/L, but as the meds wear off the traffic light goes green for adrenaline (paramedics who rush onto the scene) while the tail end of a government convoy shoots the red, compelled to keep up with the president. Chaos.
Adrenalin, also known as epinephrine, is a hormone and neurotransmitter that is involved in the fight-or-flight response. It prepares the body for action by increasing blood flow to the muscles, heart rate, and breathing12
Dopamine is another neurotransmitter that is involved in motivation, reward, and pleasure. It is also a precursor for adrenalin, which means it is used to make adrenalin34
When adrenalin is released in response to stress, it blocks the flow of dopamine in two ways:
It competes with dopamine for the same receptors on the nerve cells. This reduces the effect of dopamine on the cells3
It inhibits the production of dopamine by converting the amino acid tyrosine into adrenalin instead of dopamine. This reduces the amount of dopamine available in the brain4
The reason why adrenalin blocks the flow of dopamine is to focus the attention and energy on the immediate threat or challenge, and to suppress any distractions or rewards that are not relevant to survival34
However, some people may enjoy the feeling of adrenalin and seek out stressful or risky situations to trigger it. This is because adrenalin also stimulates the release of dopamine in the nervous system, which creates a sense of euphoria and excitement35 This is similar to how some drugs, such as cocaine, produce their effects by increasing dopamine levels in the brain5
Thank you. It is interesting how the two neurotransmitters work synergistically as well as competetively. Maybe we should focus on how to harness the adrenaline to supplement or replace some other the dopamine and achieve some benefits.
Isn't that interesting? I think my anxiety level is 10X when someone tries to help or even touch me. The only ones I have been feeling safe around are my wife and my immediate family. Even they raise my anxiety level when they insist on helping me when I don't want or need their help.
Methinks that anxiety and panic issues are 90 % of my Parkinson's.
Agree, it makes it worse when people try to help or grab me. I kindly say, "back off." I have an appt today, and lingering in the back of my mind, I worry about 'freezing." When I can, I take a sublingual Apomorphine..that usually gets rid of it in 15=-20 minutes.
I've never had the problem of freezing wile trying to get out of the car,. But sometimes my feet feel like they've doubled or tripled in size and I need my hands to help move them.
Hi. My experience with Sinemet has been interesting to say the very least. I was diagnosed with Parkinson's in 2017. My first regimen saw me taking 1 pill of a lower dose (100 I think). This was not found to be very effective, so this was changed to 1 Siemet 250,/275 , 3 times per day. I found after a while, that this was not producing the desired result. I currently take the Sinemet 250/275 - generally 1 1/2 pill 3 times per day. Now, I recently found that I have been falling inexplicably - very dramatic - I will be standing one moment and the next second, find myself hurtling to the ground. This is generally a fall to the left, right or backward (never forward).
My Neurologist has suggested that the falling may be caused by the high dose of the medication. So, she suggested that I change the whole regimen - new schedule - 1/2 a pill every 2 hours - 6:oo am, 8:00 a.m. 10:00 a.m. 12 noon, 2:00 p.m. and the final 1/2 at 4:00 p.m. Needless to say, this does not work - I am not able to carry out the most basic activities with this dosage - so I decided to try taking one pill (on the same 2 hour intervals). This has proven to be a bit more effective, but still not very helpful if one requires significant energy, mobility and mental clarity and stability, necessary for a productive day. There seems to be a reduction in the frequency of the incidence of falling at the regimen that requires me to take 1 pill every 2 hours. However, it does provide the other important benefits - mobility, stability, energy, etc.
In terms of the consistency in performance of the medication - that is a real problem. Fact is, the official dosage stopped working months ago. As mentioned above, I opted to increase to 1 1/2 pills 3 times day. To this I added 1 pill between 5:30 and 6:00 a.m. This allowed me to prepare for work (bath, put on clothes, prepare breakfast, etc.). I would then take the 1 1/2 at 7:-00 am, 11:00 a.m. and 2:30 p.m. Now the experience with taking the medication at 2:30 p.m. has been the source of the most stress. On any given day, it will either take as long as 2 1/2 hours to 'kick in' OR , as has happened on quite a number of times, it just does not kick in at all, even after 4 hours or more. At this point I would take another pill, which generally will give a little relief and this lasts for about an hour. And then, in order to have my muscles relaxed, to allow me to go to bed (at about 8:00 p.m.) and hopefully fall asleep by 9:00 pm. I take another pill. Generally, I would then sleep until about 2:00 a.m. Of course, I am aware that it is not recommended that the medication be taken before bed, as it is said to interfere with sleep.
My experience goes against this expectation. In fact, assuming that none of the other intervening factors that generally affect my ability to fall asleep - mosquitoes, loud music, barking dogs, etc. are present, the easiest way to fall back asleep would be to take one Sinemet, which generally 'kicks in' after about 1 hour - resulting in me falling asleep and remaining so, for on average 3 hours. I have also found it easier to fall asleep at any point, within say an hour after taking the medication - so, it is safe to conclude, at least in my experience - that the medication seems to promotes sleep. It is worth mentioning though, that I have found that trying to sleep during the daytime has not improved with the onset of Parkinson's, and the consequent taking of Sinemet. In fact, I am of the opinion that my brain has formed a schedule, which is set to match the timing of the taking of the pill. So, I will fall asleep, but you can rest assured I will be awake in time for the next time I am scheduled to take the medication, without fail.
Of course, this is a major problem. As I mentioned earlier, I find it pretty nigh impossible to go back to sleep once I wake up. I would lie awake until the morning, with my thoughts racing, dealing with every topic imaginable and with my body becoming very tense - from my waist into my toes. This of course is not a good thing, as sleep is very important in the functioning of the body (body needs sleep to facilitate healing and repair of this wonderfully created machine - the human body).
As a matter of fact, I am only 49 years old and based on the experience so far, I am now contemplating seeking early retirement. It has proven to be very difficult to function especially in dealing with members of the public. And the constant falling is not only inconvenient, potentially dangerous.
Thanks for sharing. I hope I have understood it properly. You are taking 25/250 Sinemet?
I believe that the best results are achieved with an empty stomach through out the day. You can either fast or have a no protein liquid diet during the day.
Also, there are Sinemet extending medications such as Comtan and Nourianz. There is also a powerful rescue inhaler called Inbrija. All of these are available in the USA. Ask your doctors about these if you are in the USA. Also, I hope that you are being treated by an MDS and not a front line Neurologist.
My doctor is not a Movement Disorder Specialist. In fact, she seems to be suggesting that I will need to see a specialist. She mentioned a facility in Miami, on my last visit.
As it relates to additional medication - I would generally prefer to keep the number of meds to a minimum. Fact is, these medications do not heal so, I don't see the point of overloading the body with these sometimes toxic chemicals, therefore overworking and stressing the body.
I have been actively researching natural treatments, but have not found anything significant yet.
I am 53, was dx'd at 40...I quit my job, as a therapist in rehab, at 48 y/o. My job was to physical and working with patients was hard. I take meds..I also utilize infared light for back pain, whirlpool, excercise...and today tried 'Cryo" therapy, u freeze for 3 minutes in this "booth."
Dopamine breaks down to adrenaline. Perhaps stress can cause this process to accelerate? Also, I would guess the higher the dose of l-dopa, the more adrenaline is created, which can feel like anxiety.
Thanks for sharing pdpatient. Could it be ashwagandha? Are you still taking it? I had a similar situation when I was experimenting altering the mucuna vs ashwagandha dosage and timing. Froze where I sat, and my husband had to literally carry me so I could rest - was scary… glad it happened at home. May have to do with dopamine vs serotonin levels (whole another big topic). I continue to use both mucuna and ashwagandha. In my experience, somehow ashwagandha (dose-dependent) helps mucuna work better (my shoulder pain is better), helps with sleep but makes the slope between on-off periods longer… where dyskinesia and freezing occur. Some think they can use mucuna and ashwagandha as much as they want as they are considered supplements - I treat them both as medicines with as much respect as ‘frenemies’ Closest analogy is synergy of sun and moon, low and high tides!
Thats really interesting, mitochondria . In fact I ran out of the Ashwagandha that day before I posted and then this. I have not reordered yet and I will be ordering it back soon as I do more research. I need to get to know more about the interaction.
Unfortunately I don't know if the doctors can help me because they have not signed on to the "program". Allopathic medicine doesn't go well with Ayurvedic medicine at least as far as the experts are concerned 😂
You are right. All these supplements are a boom and a pain at the same time. Once a fine balance is achieved, one mistake can screw it up! I am learning. Even after all this time.
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Closest analogy is synergy of sun and moon, low and high tides!
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