after nearly 30 years dealing with this awful disease, I’m experiencing horrible wearing off symptoms. I take my sinemet every 3 hours but now if I’m just 5 to 10 late, I completely shut down, having this feeling that I’m just going to die, it’s become very scary and I’ll take my meds and just wait it out for about an hour then I’m back to my “normal” self, if you can call anything about this disease normal. Is this normal? Has anyone else had this issue? Thanks
sudden horrible off periods: after nearly... - Cure Parkinson's
sudden horrible off periods
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Mimi828
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You do not say if you are taking anything else. In the event that you are not, opicapone or entacapone can help extend your on time, or an MAO-b inhibitor like rasagiline or selegiline.
Are there any side effects from these you named? ...because in this world of ours, I've come to learn that no benefits comes for free
Mimi, I have had PD for over 25 years and have experienced similar results. First, remember PD is a degenerative progressive disease. We are all on a down hill ride. When I was first put on sinemet I took 1/2 of a 25/100mg tab 3 times a day. Between sinemet and Rytary I take the equivalent of 7 - 25/100mg tabs a day. Why? The disease had progressed. When carbidopa is combined with levodopa the half life is said to approximate 90 minutes. So if you are taking sinemet every 3 hours, you are running out of sinemet. Also, remember you should not have any protein half an hour before you take your sinemet or one and a half hours after because it interferes with the sinemet. Lastly, I discovered, by statistical analyses of my own bodies response to sinemet, it was critical to take it at a regular time and with in a narrow window of 10 minutes. I warn you that am not a doctor, am relating my experiences. You should consider seeing a neurologist that specializes in movement disorders. God luck!
I save all my protein until the end of the day and I can’t take any other meds typically used with the sinemet as I have very bad reactions. Good to know I’m not the only one. I exercise regularly too but lately it feels like I’m losing the fight.my doctor is a MDS and she says I’m doing all the right things. I’m so frustrated
Jump start, if you don’t mind me asking, you said that you are taking 7 pills a day so how often do you take them? I was doing pretty good on 4 a day and then suddenly it changed and I’m finding myself taking one dose in the evening before bed just to be able to move well throughout the night especially if I have to get up to use the bathroom.
I'm on eight a day...I take two 25/100 tablets, one normal release one controlled release (it's just what I have learned worked for me rather than my health teams insistence that all normal or all controlled release would be "better", and yes it did take a heck of a lot of persistence to persuade them they were wrong) every six hours.
The issue I'm facing is I'm at 800mg per day of L-Dopa, and our national health service has set that as an upper limit. Whether that is for pharmacological reasons or cost reasons is unclear, though the fact I've heard some Americans are on as high as 1600mg makes me strongly suspect the latter (the NHS is a free service of course, so financial aspects do have an effect).
Hi Grey Area, I'm surprised you say there's a cap on l-dopa of 800mg in the UK. It didn't seem like there was a cap on it while I was there (I only moved to Ireland several months ago).
If you continue to need more ldopa and the cap remains, you probably won't be able to cope. I'm really surprised about that
bmjopen.bmj.com/content/2/6...
Diagnosed 2015, only hit the 800mg last year.
More complete reply later ..symptoms bad now.
NHS will not let you have the proper treatment for your disease that you need? They cannot be doctors and who would know better than doctors, and you? Do they have a limit to cancer treatment too, or treatment for other diseases prescribed by doctors? Can this really be true? What happens if one of their own employees or family members get a disease? What do MPs and Ministers do???
If you have money you can go private. The NHS is funded from taxes and they have limits on most things if they are expensive. Parkinson's drugs are probably just over the threshold so a certain amount they will pay for but then they look at the "benefit" vs the cost...if not enough benefit they won't fund it. Hence 800 mg on L-dopa. Some Alzheimer's drugs they just flat out won't pay for.
Carbidopa levodopa is dirt cheap. In the US I am paying $0.30 per pill, extended release version.
Costs in the UK seem to vary wildly...see next post
Costs of levodopa pills £12.88
Price number 2. I'm not clear on the two different numbers, trying to find out...
Price of levodopa pills £19.31
And this helps not one jot...clear as mud...
As if taxes weren't high enough in your country... I've often heard it said that "if you think healthcare is expensive now, just wait until it's free"... Now you can't even get adequate appropriate care for the taxes you do pay.
Healthcare is generally excellent in the UK and not just for some.
I am quite familiar with NHS, having lived in England for a time. Nothing I've seen since then suggests any change. I'm sure your opinion of the US is equally evidence-based.
It sounds pharmacological. Originally set in America. "When approved by the Food and Drug Administration (FDA) in 1988, a maximum daily dosage limit of 800 mg (eight tablets) of the 25/100"ncbi.nlm.nih.gov/pmc/articl...
Plausible Deniability...people from the US and other countries don't have this limit. It may have started as a safety limit, but minimal googling will find studies showing it's not really applicable any more...but my so called "specialist" is sticking to his 800mg guns...
Yes. A simple Google found the study above showing it shouldn't be a hard rule.. The latest US FDA doc i can find recommends a max of 800mg.I wonder if there's an element of flexibility that neurologists can apply. So maybe a different neurologist would ignore guidance.
"Off label" authority granted every prescriber in the US renders (and historically has) every such FDA dose pronouncement to be strictly a recommendation, and has for many decades, if not always.
Mimi828, I should have said i take 7 carbidopa levodopa pills a day. I start with a medium dose of Rytary (time release) plus 1/2 tab 25/100 sinemet at 7:30 am. and then i take one 25/100 tab at 9:00am, 11:00am, 1:30pm, 3:30pm, 5:30pm and if I intend to be out late I take one at 7:30pm. I am not happy with Rytary and may go back to just sinemet. I also take many other pills for, dyskinesia, low blood pressure, Hashimoto's Disease, etc. All together i have 4 autoimmune diseases if i include PD as one
I go kayaking every Sat (in Florida). We used to start at a civilized time of 10:30 am for "paddles in the water". So if I got up at 5:30 or so I was on my second dose of Rytary with a rasagiline kicker and I also wear a 24 hour neopro patch.
Now with the heat we moved our start time up to 8:30am. So I am in the water before my meds build up in my body. As a consequence (I believe) I lacked the strength in my arms to keep up with the group. This happened on two occassions including yesterday. As my wife wingwoman paddled by my side back to the launch site we determined and defined the importance of timing your meds according to your energy needs. So this will now be more fully factored in on my part.
One more comment; if you can find a good DIY electronics guy, build and use vibratory gloves. I bet it will be 5 - 10 years from now before they get approved but this techology is for real.
I have been following the vibratory glove issue for over 2 years (Peter Tass) and I also believe this technology is the real deal also. What I don't understand is why isn't this product being provided on the black market. Many of us don't have 5 to 10 years to wait. The demand is certainly there.
You are amazing. Anyone who deals with PD for 30 years needs a bravery 🏅 medal.Sorry about what is happening to you now but you have encouraged me very much
God bless you
Happening to me right now after ten years with diagnosis. The mental state it puts me in is out of proportion to the physical symptoms. The only word I can use to describe is "wretched"...despair, fear, loneliness...yet an hour or two later I'm fine again. Sometimes I wonder if 1 in 100 Sinemet pills are placebos! Oh yeah, paranoia goes through the roof too...I've no solutions sorry, though a good meditation session can help the feeling pass...IF I can apply myself enough to start one...but once the wretchedness has me in it's grip I'm a different person.
I have found a difference in coverage with each new prescription. The pharmacist said that they get the c/l from different providers and there is no way they can get it from one specific provider. I know that there is a difference in coverage. When I bought this up to my movement specialist she said she has heard that from other patients. I asked if she could designate a specific supplier and she said no.
Well, I _MAY_ have found a trick there...apparently there's only one manufacturer of a 200/50mg controlled release tablet.
If you speak with your doctor you can tell him that by simple reaction dynamics, dissolution rate is directly proportional to surface area, and one large pill has a smaller surface area than two small ones of the same mass.
So a larger pill gives slower release...perfect for overnight if you don't want to be woken by the return of your symptoms every 3 hours or so.
I say "MAY have found a trick" because
1. It may be just my country (UK)
2. It indicates this size is rare, so no one knows how long they will continue to make it
3. Even while it exists, it often has to be specially ordered by the pharmacist.
4. Convincing a specialist that you're anything other than a brain dead idiot and thus that your opinion on your own body and condition is worth paying attention to can be very difficult.
5. The clinical downside is that whilst the slower dissolution makes it last longer, it also makes it take longer to take effect - by my reckoning the 200/50mg takes between 90-120 minutes to "kick in", whereas 2x100/25mg tablets take 60-90 minutes.
I’ve had the same problem and my pharmacist said all I need to do is have my doctor include on the prescription it only be filled by “Mylan (or whoever)” and the Pharmacist will use the specific manufacturer noted. I’ve been using that method for quite awhile. But since the beginning of the year Mylan has not been working so well. It’s so frustrating! 🥊
Thanks for your help.
my problem is I don’t remember which prescription I had at the very beginning. When I asked the pharmacist, they said they couldn’t tell me so I guess if I find another prescription works better than what I’m taking now I’ll ask my neurologist for that.
I would ask the pharmacist again and maybe even the doctor. They both agreed that it would be a good idea to change the manufacturer.🥊
same thing here, but only diagnosed for 3 years. I am age 71. It happened 6 months right after my insurance changed manufacturers for generic Carbidopa levidopa. I was told there was no difference but it’s an odd coincidence. I have only 30 minutes of ON time now per 4 hours. Tried dung Entacapone which helped for a which (got 30 extra minutes of ON time) add then stopped and then I got dyskinesia. Now I have dizziness often and tons of muscle pain and dystonia (toe curling) and odd cramping of abdomen.
I’ve often wondered the same thing after I was switched to generic! So frustrating.
I had the same experience and I insisted I needed to go back to the original manufacturer of the meds. Now, I am on controlled release and I really like it.
No Medication is capable of reversing PD.
The only way to do that is to start, regular FAST WALKING!
I have been PD Movement symptoms-FREE since 1996.
No Medication: No symptoms; NORMAL LIFE!
I do not get paid to do this, I do it because I want you ALL TO GET BETTER, AS I DID, Twenty eight years ago.
I turn 90 years old in October and still look forward to many more years of LIFE!
You are amazing John and even though it was hard work for my brother to follow you advice, because he is quite resistant to change, it's so worth doing it. Thanks very much foryour book.
Reverse-Parkinsons-Disease- By John Pepper from Amazon
how can a person fast walk when they can barely regular walk? I don’t have the stamina or strength to go far. I get back spasms
I think you just start where you are and one step at a time. Anything more than zero is an improvement, so you start a very gradual increase as you can, that's all. Get to the point where you can't and then stop. Until the next time which should be "soon" (next day, next hour, next something, let your body tell you when). Then at some point, when you get to "when," you take another step or two until "can't". But don't kill yourself. You're not in a hurry to get anywhere anyway!
We have two distinct areas of the brain . The one that normally controls our walking is the subconscious area but, PD affects that area.
The other area is the conscious brain, that is consciously controlled by you.
If you want to consciously move your legs , you will find that YOU CAN1
If you consciously put your weight onto your left leg then you can consciously move your right leg. That is what we have to do to walk but, after walking consciously for some time,, it becomes a lot easier.
Try it and let me know.
Thanks John
My trouble is that I walk with my weight forward, pressure on by big toes. it hurts and is starting to cause deformatio. Any suggestions? thanks
Are you unable to consciously stand upright, when you walk?
Thank you for responding!
My balance is off and so I sort of lean forward on my toes, it’s as if I am falling forward and my feet are trying to keep up with me. I can stand up straight when I’m stationary but when I’m moving I tend to tilt forward
I still have that problem, when I am not concentrating on everything I am doing.
Concentration is the answer to your problem.
While you are concentrating on your leg movements, you must also concentrate on your posture.
Thank you!
Wow. I'm only 5 yrs in and I'm noticing this. Sometimes I go longer and I'm surprised. Then something triggers it. Negative thought, conflict, fear, any deadline.... sometimes at work I forgot the pill and somehow just powered through. I don't have it figured out. But the abrupt switch-off is new to me.
Something I'm trying the last few days is to dip a finger-tip in some of the "99% levadopa" extract and put it under my tongue. (As well at taking my half-pill.) I want to see if that is a faster path in.
Yes, it’s been 7 years since I was diagnosed; and I’m also experiencing sudden “off” periods throughout the day, everyday, that are exhausting me physically, emotionally and mentally. I take one tablet C/L 25/100 IR, every 3 hours, eight times per day. I don’t take anything else for PD.
How on Earth have you managed to stay on such low doses for so many years?!
I don’t know I just haven’t had to increase up until the past year. I Guess it’s just the combination of exercise every day, lots of hydration, a super clean diet, only organic foods no packages or processed foods, no sugar or dairy, only eating protein at the end of the day, b 12 and some other vital supplements and vitamins, and a positive attitude. I guess some of us progress slower than others. Ive done lots of research and have discovered things that have helped I guess.
Do you drink plain water to stay hydrated or do you use electrolytes too?
I also have osteoporosis. I am having a hard time getting enough protein when I try to eat it all at night. Any suggestions would be appreciated. Thanks
Interesting that longer term sufferers are seeing degradation at about the same global time (rather than time since diagnosis) as more recent sufferers.
Does said global time coincide with the move from Sinemet to generics? Discuss.
I have been on the same brand the whole time. The pharmacy mistakenly gave me a Different brand one time and it threw me for a loop. I make sure now they give me the same brand I’ve been taken from the start. I don’t take any other things with it, no agonists or anything.
My pharmacist said he has to go with whatever supplier is available at the time he puts in the order.
If anyone has moved from Sinemet to a generic and thinks the new drug is inferior...ask for another! I won't take Caramet any more as the easy-to-swallow coating was triggering a rapid heart beat (I saw it suggested elsewhere and persuaded doctor to let me try an alternative). Not gonna lie, it's hard work persuading health professionals that you may be right, so you've got to do your homework.
I have something similar. I take carbidopa/levodopa, two tablets four times a day every four hours. A total of eight. But over the last year, my On periods only last for maybe three hours and my Off periods are like going off the edge of a cliff! I shake violently my throat gets tight. My diaphragm gets tight. I feel like I’m having a heart attack, I’ve had to add clonazepam otherwise I will go into a full panic attack. It was working very well for about two years. My neurologist says it may be time to think about DBS. (deep brain stimulation.). On periods, I look and feel normal, but as I’m coming down off them I hate being in public. It’s like changing from Dr. Jekyll to Mr. Hyde. I’m sleeping less sometimes I wake up in the middle of the night shaking violently when before I would just sleep till seven with no problem at all.! My mood also drops dramatically as well and I get very scared if I’m alone. And yes, sometimes I do feel like I’m dying. You’re not alone.
Meditation and deep breathing helps getting more and more difficult
Panic attacks are machine and metabolic phenomena, nothing wrong with anxiolytics and muscle relaxants, maybe talk to your prescriber about alternating them because they're not the same thing and that can help with fears of tolerance habituation or dependency, like having aspirin and naproxen available and one day you might use one and a different day you might use another without getting too deep into some sort of dose increase cycle.
nsofka, I’m almost identical to what you are experiencing! My meds are only working 3 hrs and then my off times are “off the cliff”. I shake violently from head to toe and I am in a bad mood and feel lots of anxiety during my off time. I’ve been on C/L for 11 yrs and this just started happening around the first of the year. It was happening a little before this year but got a lot worse at the beginning of the year. The pharmacy changed the manufacturer around that time. I’m taking 7 per day. The manufacturer of mine is Mayne Pharm and previously it was Mylan. My neurologist also recommended DBS. I’m thinking I might try it. I was diagnosed 20 yrs ago and I’m 66. During my good times, I’m almost “normal “?? I’ve been doing Rock Steady Boxing for 17 yrs. 🥊
Yes! It sounds exactly the same. My doctor wants me to do DBS. But I am choosing a different therapy; less intrusive. Repetitive Trans cranial magnetic stimulation. RTMS. this is done on top of the scalp. My daughter is a doctor of SLP speech and language pathology. She works with people that have brain injury or dementia etc. she believes this would benefit me. I’m going to give it a try! You may want to look into it as well!
What is RTMS and where can you get the treatment? Thanks
bonjour
Pourquoi prenez-vous le sinemet alors qu’il existe le Stalevo qui contient en plus la carbidopa et l entacapone sensés améliorer l absorption de la l dopa
En France il existe sous l appellation Stalevo
Cordialement
Rose
Definitely know the feeling, and it's often. Read some stoicism guides or guidelines or summaries, sometimes that helps me. It's actually a pretty good philosophy, pretty applicable I mean.
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