I take Sinamet, Losartan, and Quietapine before I go to sleep, and after 2 or 3 hours, I wake up and realize that I have Parkinson's, which I forgot while I was sleeping. I'm now awake and in the dark, and the fears of everything threatening me begin to affect me. So I turn on the light, go into the kitchen, and drink a combination of water, turmeric, and cayenne pepper as an anti-inflammatory, and go back to bed. When that doesn't work, I take 550 mg of Tylenol, and later, 300mg of Gabapentin, and later a half-pill of Sinamet, and later, another, and if that doesn't work, 1.25mg of Valium. The combination usually works, but then after I get up in the morning, the toes on my foot or feet curl, simultaneous with having a headache, and usually constipation as well. So I shuffle back and forth across my apartment, take more Tylenol, more Sinamet, more Gabapentin, and by around 10:30 am, I'm "normal." I may have panic attacks or extreme anxiety during the day, however, which I counter with Gabapentin or Valium.
I feel like the quality of my life has been significantly degraded. I've learned a bit of Qi Gong, and I see a neurologist, psychiatrist, and psychologist, and I guess that they help, and some people in this community tell me to "Be strong" or pray, or try a particular technique or take a particular supplement, but I spend quite a bit of time feeling scared, powerless, or depressed.
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Alock2020
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Holy Moly! In my opinion you are taking way too much stuff. The anxiety is probably caused by you worrying and some of those things not mixing with others. I’m not the smartest person on here but I do have some experience, sadly to say, 20 years.
First, make 3 copies of the post you wrote and mail each one to each of your doctors. They probably know what meds your on, but they may not. Giving them your words on paper will show them how you are feeling at one of your “bad or off” times you have. Also write a small note to tell the names of the 3 doctors you sent it to. Sometimes when you go to a doctor’s office you don’t feel as bad as you would at home.
It’s true PD is a horrible thing but you can learn to live with it if you put your mind to it. I understand it’s very difficult to be more positive than negative but do you have a choice?
One more thing, you need to exercise and give it all you can!
It sounds like you might need more Sinemet (Carbidopa levodopa). My Neuro prescribed 2 pills(24/100) every 4 hours 4 times a day and 2 at night if needed. Also magnesium lotion on feet helps at bedtime along with CBD cream .
Have you considered taking GoCovri. It’s a new formulation of amantadine that you take at bedtime. Ive been taking it for about 3 years and it helps keep my dyskinesia under control without any significant side effects.
Try melatonin 10 mg. If that doesnt work try another 10 mg. That is what my pwp does. I dont know what to tell you but as counterintuitive as it sounds ( and is) PD has been a blessing. It has taught us patience and care. It has shown us the quintessentially most important things in life and has bolstered our faith in each other and in our Heavenly Father. That is priceless. Hood luck. If you can get a good nights sleep you can conquer the world.
Agree with you. I am grateful to Parkinson's for forcing it to control my diabetes. It probably saved my life. I know it sounds cynical but it's worth reflecting on.
Thank you for your post! I agree that PD does have a silver lining and that we need to "Count it all joy", but I have to say that it is really darned tough sometimes. My verses are "I can do ALL things through Christ who strengthens me" and "Be still and know I am God" on the hard days...and, well, everyday. Thanks again for writing!
Dear Alock I have nothing to offer but I do understand you totally as I am in the same boat if it is of any help. You are not alone. I know you are doing your best trying to get some relief, taking a minute at a time. I am thinking how badly I will die and worried as I cant function by myself.
Funny thing is that my memory is not affected at all and for that I am grateful. I remember every body 😊. You may want to read my latest post on the effect of beans on Parkinson's symptoms in conjunction with Levodopa. I am going to get Soybean flour and add to my diet. Studies have shown that it prolongs the bioavailability of Levodopa!
Although glyphosate-resistant soybeans are presently not grown in Europe, their widespread cultivation in the USA and Latin America has resulted in substantial residues of glyphosate in soy products imported into Europe for food and feed.
I've taken 400 mg of gabapentin a night for several years and haven't had a problem with it. I began taking it to cope with the restless legs I was suffering with at night. I've taken increasing amounts of carbidopa / levodopa so I suffer dyskinesia, as a result.
What helps me the most to relax and sleep is to chew two gummies containing melatonin, l-theanine, and magnesium before bedtime.
Hi Alcock. I was diagnosed with PD in 1992 and in 1994, after finding that no medication does anything to reverse my PD symptopms, I started doing FAST WALKING! By 1997 I was clear of all PD movement symptoms and have remained PD movement symptome--free ever since. I am now 89 years old and still walking. Talk to me!
I understand what you are going through, Alock. I have had PD for almost 13 years and I have struggled with difficulty sleeping for most of those years. For years I had only 4 or 5 hours of sleep at night. But when my neurologist warned me that I was at risk of having dementia if I don't have enough sleep, I started taking my sleep time very seriously. It is especially challenging because I take my meds (Sinamet & Pramipexol) every three hours so I have to wake up during the night to take them. However I have now trained myself to just reach out and take the tabs on a table by my bed, preferably without water, go right back to sleep. I have to discipline myself to not check my mail on my phone and anytime I don't fall back asleep right away I have to force myself to wait quietly in the bed until sleep comes. Keeping myself well medicated with the Sinamet helps my body and my mind relax. I've discovered to a certain extent anziety and panic are primarily "chemical" reactions due to a lowered level of dopamine. Of course we also need to control our thoughts. You appear to be worrying a lot about what will happen to you since you have PD and you will need to deal with that in order to have the peace of mind that allows you to sleep. I found my peace when I decided I had a choice of being preoccupied with praying for healing for myself or concentrating instead on developing a deepening relationship with Jesus. Now I see my PD more as a nuisanace than as a burden and I concentrate on living my life to the full. I hope you will find some of this helpful.
Thoughts on sleep. In descending order of what helped me most.
You said Losartan. Is your BP well under control? Get a cuff and test it and keep a log for you and your MDs. Test it when you wake up in the middle of the night. I had to go on Amlodipine as well. Getting my BP under control substantially reduced and almost eliminated my anxiety.
I switched my workouts to the late afternoon or early evening which helps clear my mind. Light dinner and no news or devices. Make a note of if your aerobic or strength helps you sleep better.
Consider a Sleep test! Or at least get an oxygen saturation log device, (everything from the Oura Ring to a $35 one like the MD uses) and make sure you are not desaturating during sleep. My sports watch was not good at logging overnight O2. CPAP or O2 are less horrible than too many drugs IMHO.
Heating Pad (with auto shut off) helps calm cramped muscles.
NSAID anti inflammatory on occasion if I am very sore (as little as possible as it seems like they are not good for the microbiome)
Melatonin or CBD as sleep aids. If I had a bad night the night before, then I am probably going to try one. I had to cut back to 1/2 dose of Melatonin as I was too sleepy the next day. Right now I rarely have to take one now unless I listen to the news....
Hi Alock, I can see you are working hard to get support in your journey, that's commendable. I would just mention that in your work with a psychologist you may want to inquire about or find someone with experience in EMDR (eye movement desensitization and reprocessing) or IFS (Internal Family Systems). I have found those two therapeutic approaches the most appropriate.
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