Is there any way I can sustain my few minutes of PD-free life all day long?
Just wondering why my PD symptoms are vir... - Cure Parkinson's
Just wondering why my PD symptoms are virtually absent when I awake in the morning, but then start to emerge as the minutes tick by?
Written by
DeanGreen
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32 Replies
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I have the same question - I’ll also email my Neurologist and post what he says.
It is the same for me. I try to take meds before I get up and that seems to help but eventually the symptoms come.
I've always assumed that during the night ones movement is minimal and the brains own manufacture of Dopamine, although largely destroyed is still able to produce and store some Dopamine. So what little is still produced and stored is enough to keep you going in the early morning as though you had no or early stage PD.
Yes, I can have as much as 1 1/2 to 2 hours symptom free upon awakening, but I have another experience that perplexes more.. I take my first dose of levodopa/carbidopa, together with minimal amounts of miropex and selegiline, as per my doctor's instructions at 8 AM. The meds often begin to wear off between 11:30 to 12 noon. Rather than take the next dose at that time, I find that if I go without the 2nd dose for another 20 to 30 min. and just suffer thru the tremors, rigidity , etc., somehow, the symptoms will lesson in intensity and then disappear. I can then be okay without the meds, often for another 2 hours or so. I can thereby delay the second dose until 2 PM, take a third dose at 7-8 PM and then go without a 4th dose for the day. I am curious as to whether others experience this and I wonder if it is OK to modify dosage times like that. I wonder what mechanism is at work to relieve my symptoms if the meds had worn off and supposedly, I am not producing sufficient quantities of dopamine on my own.
Since the time I was dx, 26 yrs ago, I have modified my perscrip and taken less than was perscribed. I have experienced symptoms lessening, but usually only when I take the extended release carbodopa. I cannot rely on this happening, however.
Amazing! 26 years and still going! I admire you and want to know your secrets of having Parkinson's walk through life with you
fishinggirl, no secrets, really. I believe that every case of pd progresses differently. I think my attitude is......I didn't want this.......but now that I have it.......I am not going to be miserable, so what can I do to make my life better. Eat well, exercise (I don't do very much) The progression was very slow for 20 yrs. but there was progression. Without my levo/carbo now, I would not walk at all. I had no tremor until Jan of 2013. That is so annoying bc it wakes me up. I can only sleep 4 hrs max at nite, but I take naps. Stress plays a huge part in symptoms, for me, anyway.
Hi finlander
I am a layman but the advice I hear is don't vary your tablet taking times. as you see from my earlier post I do not need meds when I awaken as as I always waken "On" so I do vary them by as much as 1.5 waken " I have been diagnosed 11 yeas
I also used to "not take" mu 4th dose but that was when I went to be about 10.00- now it is midnight plus -= and when I started to get RLS and sleep deprival, I took the 4h dose and it helps me through the night
kind regards
Bob
Don't know if it's true, but heard that your body makes dopamine while you sleep.
Interesting. Maybe you're cells have stored up a bit of excess dopamine after the first dose. When the free dopamine from the levodopa/carbidopa is depleted......maybe it takes those charged cells about 20-30 min to get cranked up. Just a thought. I'm not a neurologist, but it would be nice have have a neurologist as a member of this community to help answer questions such as yours.
Hi Dean
I am exactly the same - I always waken up "On" and this is the case no matter when I go to bed - last night (or this morning) it was 01.45 and I wakened at 09.10 - which as good for me. The less sleep the slower I am but I have no Tremor and my voice is fine. I have sometimes gone to 11.00 before I take any meds but normally take them between 09.30 and 10.30 - depending on the days plan.
It has never been explained to me - I don't think neurologists know -- but I guess it is the overnight "night shift" of dopamine
nerve cells which build up a supply for the morning?
I sometimes get an extra hour before I need my meds after as particularly and I have no stress but that does not happen every time
Another trick I have learned is that if we are going out in the evening and my meds timetable doesn't fit, I can go to bed and have a Power Nap which gives me an extra hour
Kind regards
Bob
Stress
Hi Deaaaan Green!
Your query is intresting. I feel you caaan prolong your early morning "On" period by doing following Micro Exercises or Sukshama Yoga
1. Clenching of fist and unclenching the same simultaneously stretching the palm.
2. Turning the clenched fist in clockwise and anti clockwise directions
3. Turning shoulders clockwise and anti clockwise
4. Squatting on the floor or a wooden table and running the palm on the knee clockwise and anti clockwise simultaneously Turning shoulders clockwise and anti clockwise
5. Raising and lowering of the foot in standing and in lying in prostate position.
6. While sitting on the floor stretching both legs and moving the foot clockwise and anti clockwise.
Worth a sevenday trial to see if your body is active for an additional hour or two without medications.
Kanu Kamdar
Hi Guys!
I'm new to this forum and must say it is the most useful and uplifting source of information I've yet found. Thanks to the info on here I'm now on my 5th day of coconut oil (3/4 tbsps per day) incuding 1tbsp at bedtime. Today I wakened up, bounced out of bed and suddenly realised I felt almost 'normal!' It usually takes me a little while to reach speed, but not today. It's now 6pm and I'm still feeling great. I hope this will last and that it's not a fllash in the pan. I will NOT let this beat me...
Chrissie
Keep us up to date about the coconut oil please
I certainly will. There are some interesting threads on this forum re coconut oil - that's what made me persevere with it
Thank you , I did get some coconut oil and we started to use it , I cooked with it as well , but , my husband wears dentures and his mouth became so slippery his dentures would become loose and I had to stop .I did get some capsules but not sure of the strength .
My sister has been taking she hasn't got Parkinson's . She feels much better and it is helping her skin.
I can see the dentures could be a problem! I understand the capsules are not nearly as strong and you really need to take a lot for it to have any effect on the PD. I usually find that if I take it after my meal and then have a hot drink that seem to clear the greasiness. It seems to be the latest 'wonderfood!'
Good luck if you try it again with your husband.
Regards,
Chrissie
Will try again . I read an article today , they are trialling it for Altzeimers .
I too, wake up "on". Does not seem to matter as far as taking an ER version of sinemet or regular version. I've always assumed it to be the fact that most of our bodies do not present symptoms while sleeping...?
Best Wishes,
Steve (Bisbee, AZ)
I, too, wake-up less symptomatic. I have heard this called "the morning benefit." I have been riding it all year, my tenth with pd, and usually wait till 11 am to take my meds. That's a good 3 or 4 hours I'm awake and unmedicated. I love my morning benefit, it's the best time of the day. but once I take meds, I have to keep taking them, because when I am off, there is no benefit, I just can't move. I don't know the mechanism of it, but I'd enjoy the morning benefit as much as possible. Ride it as long as it lasts. Best to you ...
Hi DeanGreen. As many of you know, I only took eldepryl for ten years after diagnosis, and no other levodopa or agonist medication. for the past 11 years I have not had to take any Pd medication at all. That does not mean that I don't still have Pd, I do. I speak to many Pd patients every day and every week and every month. I spend my life trying to help others to deal with their Pd. The biggest problem I come across is their total reliance on their medication and their total lack of attention to exercise and their eating habits. This question is not a chance for me to talk about exercise but to talk about medication. When we understand that, other than MAO-b inhibitors, no medication has any effect on the progression of Pd. That means that if you miss a medication time, you are not doing anything to make your situation worse. The body gets used to any form of toxic subsatance you take. It then tries to adjust to that toxin, that means that you have to take more of that medication in order to get the same effect. The more you take, the more the body gets used to it. This is the same as drug addicts. They have to take more of the drug in order to get the same benefit. Then they overdose and it kills them. The Pd medication does not kill you, but it is still a toxin and it does not do you any good. You get the benefit from the temporary relief from certain symptoms, but that is all. In the meantime you are having to take more and more medication in order to get that temporary relief. That is not a healthy situation. I have asked most patients what happens if they stop taking their meds. Most are too scared to do so, and they will never know. Some are brave enough to delay their next 'fix' and others go without their meds over weekends. The results are always the same. To begin with, they suffer with a drop in their ability to function properly but after that has worn off, they function normally. However. None of them have ever tried to stay off the meds. Why? I don't know. If the meds are not slowing down the Pd and they only temporarily hide some of the symptoms, then what are the real benefits? I never had a resting tremor. For those that do, I ask them, is it sore, does it cause you any pain? The answer is obviously,"NO". If that is so, then why take medication, just to take away something that is unsightly, but not a discomfort or painful. There are other symtoms which are much more serious, like walking and balance problems, that might or might not be temporarily helped by the meds, and if they are then I understand why the patient still carries on taking the meds. If not, then why take the medication? If it does nothing to slow down the pd. then why take it?
This is a genuine question and I know it is going to upset a lot of people but it is a serious question and deserves serious consideration.
John
I agree with you, but I believe the majority of PD folk would not take the medication if they didn't have to. Part of my job requires me to type reports and I work in a lab where my hands need to be steady. I also play guitar. I exercise and do yoga. Without the meds I cannot do any of the above. Once I retire, I'll try to kick the meds, since I'll probably will not need those skills.
I basically agree with you. I take meds to continue to be productive and creative. without them, i'm no where near as functional. maybe that doesn't matter to you, but to me, as an artist, it matters a great deal. but i have been considering trying a few days without meds. is that safe? will my brain react? usually, I can't even exercise unmedicated..
Hi GaryTorch. Are you a professional artist? I also do some oil painting, but do not have lots of time in which to do it. I have painted about thirty paintings so far, the latgest of which is 4 feet by 5 feet. My children are running out of space now! I am not a creative artist, I take a photograph and then copy it onto canvas. I call it, "Photographing in oil". They are very realistic but not artistic. I have to try and loosen up and paint quicker. When I am painting, I get very mentally tired. I cannot paint for longer than three hours. If it was my job I would have a problem.
John
The benefits of my meds, Sinemet, Mirapex, and Amantadine are that I can function fairly normally when I take them. I have tried not taking them and end up not thinking clearly, moving in slow motion, unable to write, and in general, feeling terrible. I have been a full day before with no meds but I choose them. Glad it works for you and hope it continues. We all make our own choices but thanks for the info. By the way, I exercise almost daily and find that it helps tremendously.
I wake up in pain about 5.30am pain goes when i get up feel "ok", take first medication at 8.00am.
Hello Everyone. In another blog on HealthUnblocked I spoke about MAO-b inhibitors. Let me repeat what I said there. MAO-b inhibitors stop the breakdown of dopamine in the brain. As a layman it is difficult to understand what happens in the body. Every chemical produced by the body has to be used within a certain time, otherwise they get destroyed by the system of apoptosis. My question is, "Why would we want to destroy any dopamine we have, when we suffer from a shortage?" As a layman, I wonder why all doctors do not prescribe an MAO-b before any other medication? MAO-b inhibitors do have one side effect and that is they tend to elevate our blood pressure. That is because they also stop the natural breakdown of Tyramine. We therefore have to eat less foods containing Tyramine. If you Google "Tyramine, Food", you will find a list of foods to avoid. I was only prescribed Eldepryl, which is an MAO-b inhiitor and after ten years, I ceased to need any medication at all.
John
How fortunate so many of you are to wake up not having symptoms of PD. I can hardly roll out of bed. I quickly take my meds to give them time to activate before I go to school and teach kindergarten. But I am getting ready to begin Apokyn, a medication I will inject myself and get a quick boost before there's any down time. I would LOVE waking up with no symptoms.
I wake up with terrible stiffness and can hardly walk across the room. The first dose of meds is so wonderful! I feel I can do ANYTHING and am so productive but it's downhill from there.
Because in some cases your own dopamine supply is sufficient to deal with your symptoms but then when you take your meds you have that working with your own supply. But sooner or layer your own wears down and you become parkinsonian
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