Feeling better when you first wake up - have you found a way?

I'd like to hear from anyone and everyone who has found any way to feel better when they first wake up. It doesn't matter what your method is - medication, herbs, snake oil, incantations, whatever works for you. I don't have a problem going to sleep or staying asleep (I think this is due to the fact that I don't drink any caffeine or eat any chocolate). However, I always have to set my alarm and get up after 4 hours to take another pill. Otherwise, if I slept longer than 4 hours, I think I would not be able to get out of bed or walk to the bathroom. But even after just 4 hours, as I get up, I'm shaking and my foot feels like it is going to go into a spasm. Thanks for any suggestions.

24 Replies

  • Hi HeartSong,

    I am a retired teacher, 68, dxd 13 years & currently taking Requip 8mg slow release 1st thing when I wake along with 1 Sinemet+. I have been on this regime for 5 years but recently the kicking in has taken longer & longer & the 'on' time is shorter. Unfortunately Madopar didn't suit me as I have many friends who start the day with a soluble tablet. I have tried taking 1/2 Sinemet on going to bed & this worked reasonably well for some time . However in our constant battle with PD it sometimes seems the only way forward is by trial & error. My currrent (successful) regime is: one SinemetCR (pink) on waking, plus Requip, followed by 4 Sinemet+ (yellow) at even intervals finishing with 1 SinemetCR for the night. This seems to suit my system so I can get up, use the loo or have a drink. I am still shaky but it can be worked through.

  • I'm only on sinemet 25/100 three times a day. Not seeing any difference. I didn't know sinemet came in any color but white.

  • My CR are blue.

  • Thanks to everyone who replied. Honeycombe3, Can you tell me how adding SinemetCR affected your symptoms? Thanks.

  • Taking a longer lasting product at bedtime seems to be the thing dear. Also leave something at the bedside with a bottled water so you won't have to walk afar to get to your first (morning) dose. Then just continue to lie down until it kicks in. Glad to read that you have no problem going to sleep, no RLS. Too bad you need to use an alarm at 4 hours, that can disrupt a normal sleep cycle making your sleep less restorative. Catch 22, eh? Best to you.....wait, I just read your bio....ten years! and you still have a sense of smell and no handwriting problem!? Thank your lucky stars. I'm hoping to still be as well as you in 10 years. Honestly, that woould require a time machine because you are already doing better. LOL. Seriously, I hope you stop using the alarm and just put meds at the bedside for when you awaken.

  • Buzz, you mentioned taking a longer lasting product at bedtime. Are you referring to something like SinemetCR? Do you take that? If so, how does it affect you symptoms. Thanks.

  • Yes. Have not tried that yet. I am currently giving natural sourced mucuna pruriens a go. Have you ever taken diphenhydramine for allergies with good safe result? If so, you might want to give a few milliliters (4 or 5 ml) of the children's liquid formula a try. The side effect of using more than 5 ml is it may case excessive drowsiness in combination with other meds. Do a drug interaction search first if you try it. Someone that posts here swears her muscles are less tight in the mornings after sleeping under the influence of diphenhydramine. One of my past neuros warned me not to use diphenhydramine long-term for he said it worsens memory issues. That's why I only use it occasionally and in such small amounts. I already have enough memory issues. Hope you feel better. You know what makes me feel better, a hot shower followed by massaging arthritis cream or a menthol balm on my old feet. :)

  • Thanks, Buzz. My doctor doesn't want me to use anything that interferes with acetylcholine production in the brain, such as diphenhydramine, because of the very thing you mentioned - memory issues. Results of a large study were published not too long ago that showed that people who take this long term do have more memory problems as they age. I don't know if the study looked at small dosage usage.

    How is your use of mucuna pruriens going? Have you noticed any change in your symptoms? When and how much are you using? Thanks.

  • "How is your use of mucuna pruriens going? Have you noticed any change in your symptoms? When and how much are you using?" Well enough that I won't go back to taking Sinemet. My PD symptoms have progressed a bit. I take 5 capsules of Source Naturals brand MP 4 times a day with some natural inhibitors (EGCG & quercetin/bromelain) and I largely avoid protein. Just like when using Sinemet. The downside is the bulk of the supplements, having them with me on the go. The up side is they last longer and wear off slower, gives a guy warning. And that wearing off slower allows me to sleep a full night. But I'll always wonder if I should benefit from at least trying rytary.

  • How do I feel better when I wake up? That's a challenge every day. I have a multitude of health problems besides pd. I make sure I have things to look forward to.. Even if it's just one thing. I let my dogs out; make coffee and turn on TV. My nurse arrives. I take care issues... Whatever they r... And try to maintain a normal life tho it's not. Staying positive and peaceful is key.

  • I sympathize with you. I don't know if my advice here is of any use to you, but it has helped me.

    We all need to do regular exercise and walking is the best exercise to do, in my opinion. You may not think that you are capable anymore of walking, but I feel sure that you will be, if you are determined to try to feel better.

    Here is MY STORY, but please accept my apologies if you don't feel that this will help you:

    My first symptom started in 1963, when I found that I could not throw a ball properly. I was finally diagnosed with Pd in 1992 when my symptoms, most of which were being treated with medication, had slowly got worse and worse. Only when I started to shuffle was a neurologist able to diagnose the Pd.

    Because of severe back problems, I had been going to the gym every day, six days of the week, since 1968 and until diagnosis. Then I increased the time to 90 minutes a day. In 1994 my symptoms had accelerated and I therefore decided to stop going to the gym.

    Since 1994 I have been doing Fast Walking plus taking an MAO-b inhibitor, managing stress levels, keeping a positive attitude and doing regular mental stimulation. By 1998 most of my visible symptoms had disappeared. By 2002 I was able to come off all my Pd medication, and have continued to be medication-free ever since. I am 82 years old now in 2016 and live a 'normal' life, full of purpose!

    Many Pd patients think that they will not be able to do Fast Walking! I have found that many other patients, who had walking difficulties, even those who were wheelchair bound, have been able to walk normally, once I have shown them how to use their conscious brain to control the movement. I go all over the world successfully showing hundreds of Pd patients how to walk properly, with only three exceptions. One could not stand on his own legs and the other two were unable to understand how to use their conscious brain. Above all else, walking costs nothing and everybody's health improves, when they do fast walking, and if you put everything into it, then that may include you!

    Many neurologists throughout the world, who have never examined me, have told their patients that I do not have Pd and should therefore not listen to anything I tell them. I have been examined by four different neurologists, the last of which was in 2015, and they all told me that I have Pd. The problem is that I look so well and because there is no cure for Pd, I obviously don’t have Pd. It is not my fault that this is happening to me, but I am determined to share my good fortune with every other Pd patient, at no cost to themselves

    Obviously there is a lot at stake here, especially for the pharmaceutical industry, who have spent billions looking for a cure, and neurologists, because I have not needed to consult a neurologist since 2002, other than the one I asked to examine me in 2015.

    View my website - reverseparkinsons.net and contact me from there.

  • John, I always appreciate reading your encouragement to get and and walk.

  • Thanks! I sometimes need a little encouragement.

  • We all need a little encouragement - even people who are strong and healthy. I wish more people would aspire to be encouragers.

  • I spend my whole life helping people to deal more successfully with their Pd. I hope that falls in line with your idea of encouragement?

    I, long ago, realized there is no medication on the market that can slow down the progression of Pd. So I embarked on a walking program, which requires a little bit of effort, but hey, what else do we have to do these days? I have now been able to live a full life, free of medication since 2002, and I believe that many others can do the same, if they want to. Is that a cheerful message or what?

    Some people like it, others don't, but that is their choice!

  • Indeed, you are an encourager, John!

  • Have you tried to start doing the fast walking yet and if so, how are you getting on?

  • I started. I think once I become consistent with it, it will make a big difference. This past winter, I slacked off on some of my exercising, I am feeling it now. After I get my flower garden finished, I'll get back to serious exercising.

  • Check on Google the use of Benadryl 50 to sleep. I use it and works for me. Next morning I walk better few hours.

  • Prayer works for me!

  • Lionore, indeed it does! I'd be in much worse shape if I didn't know about and use prayer. It's a gift.

  • I have often said to friends that when I get up in the morning I read the obituaries and if my name isn't in them I get up and consider it a good day.

    Now that may sound flip but there is a message. I have trouble getting to my feet in the morning and straightening up but once I begin to move I feel better and once I take my pill I feel better.. and once I have my coffee I feel even better. An hour later I am walking briskly to the train station heading to work and I feel even better. So I don't really care that for a while I am at my worse when I get up. WHAT IS...IS! At least I am still alive and I know the day will get better the more I move.

    One last thought... At 70+ I wake up in the middle of the night to go to the bathroom, but I would never set an alarm to get up to take a pill. That can wait til morning.

    WHAT IS...IS!

  • My husband is 11 yrs diagnosed he takes 20mg slow release requip at 5 am along with 125 stelevo and 1 mg asilect then 125 stelevo every 3 hours until 8 pm when he takes 100 stelevo. Goes to bed by 9 sleeps well gets up 1/2 times to stretch go to loo but can get next morning ok, slow and stiff but manages well. Exercise during the day is key, sleeps better after golf/ gym or running !! 😀

  • I feel better with a good sleep. I take 5htp, melatonin, and maxsleep (contains gaba and other herbs) nightly.

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