sudden horrible off periods

[Mimi828]

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

[park_bear]

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.

[JumpSart]

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!

[Mimi828 in reply to JumpSart]

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

[JumpSart in reply to Mimi828]

if you don't feel you are doing all right, then you are not. Get a second opinion.

[Mimi828 in reply to JumpSart]

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.

[Taranto98]

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.

[Jjm0zx in reply to Taranto98]

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.

[DEAT]

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

[Grey_Area]

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.

[caitilin in reply to Grey_Area]

… similar to my experience, profoundly sad.

[Gallowglass]

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.

[Cindy27 in reply to Gallowglass]

I’ve often wondered the same thing after I was switched to generic! So frustrating.

[JohnPepper]

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!

[Oneworld23 in reply to JohnPepper]

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

[Crollo1 in reply to JohnPepper]

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

[Mandoblast]

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.

[caitilin]

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.

[jeeves19]

How on Earth have you managed to stay on such low doses for so many years?!