Do you experience "wearing off"?

[jupiterjane]

If you are taking carbidopa/levodopa you most likely have experience "wearing off". Have you ever experienced a time when you felt a "wearing off" at an unpredictable time and if so did you panic or suddenly "freeze"? Was there a reason why you felt that "wearing off" feeling?

Jupiterjane

[WayneP]

Experience wearing off, you bet ya!!! Can feel it a coming around the mountain when she comes. Oh sorry, that's a song!! But it hits me pretty fast some times and I have gait freezing withing the meds so it can make me get into some awkward situations. I use a laser device to help me walk so it is not to bad but still freeze up. It can be scary at first cause you don't know is doing it I.E. the meds wearing off or I getting a new symptom. I just have to say this though, but the answer to you last question, the reason why you felt the wearing off is because...... Your meds are WEARING OFF!!!!! LOL LOL

[jupiterjane in reply to WayneP]

Do you ever feel the "wearing off" other than from the "Normal" your meds wearing off, like when you are under a lot of stress? Sometimes, when I have a long list of things to do in one day, or I'm in the middle of an argument, I can become overwhelmed,and my head will start to bob and my hand to trembling and my insides will rumble, but I may be right in the middle of my dose, so I know it's not the meds.

I feel like I'm having a hard time getting my message across.

[Hidden in reply to jupiterjane]

I have found at times of stress I also have a hard time getting my message across.

I take another 100mg Carb/Levo. It seems to help.

[PatV in reply to jupiterjane]

Extra sudden wearing off due to Stress?? Yes!

[harding55 in reply to jupiterjane]

yes stress does that to me too. I usually have to take an extra xanax or smoke a little pot.

[jensen in reply to jupiterjane]

i have had excactly same situation like hurry complete project,

or the waiting party outside house sounds horn to come fast,

but i am doing fasest as possible with all my attention and

efforts. when horn sounds i stsrt to trmble and hasnds shake,

hard to button up my shirt. i believe we all have same pattern

of symtom with hugh variation of time, place, seerity etc.

coping mechanism of each inviduals are quite a different measure.yelling, stop and lay down. i do learn a lot going various

support groups. i have been with PD 15 years.

[etterus]

For years I seldom felt much wearing off, but now I do. The most significant symptom is actually anxiety. It typically starts 60-90- minutes before i"m due for the next dose. 30-40 minutes after I take it I start to relax back to mild anxiety. Seldom do I feel content-normal. I usually lose control of my right foot when I'm off and use a cane when I am out of the house. If I don't my foot hurts. There are time when I'm walking very good and people don't know I have anything... it's such a roller coaster.

I just received a M J Fox email stating that the Neupro patch will be available again in July. It is supposed to even things out.

[jupiterjane in reply to etterus]

How about you etterus? Will emotional or physical stress bring about a "wearing off" episode?

[etterus]

You betya... I'm a absket case over little things.

[jupiterjane in reply to etterus]

Thanks etterus!

[WayneP]

Now we talking about something different, stress for me is like a meds killer. It just reduces the effect like no bodies business. And you know most people will tell you that even off meds that stress makes symptoms worse. Funny little disorder we have I got to say. Got a funny thing to share with you, I was reading the other day that PD can vary so much from person to person that there is only one symptom that common to all PD patients, constipation. I thought that was so funny. So I guess we are all just full of poop!!!

[tlongmire in reply to WayneP]

So funny and so sad at the same time.

[Court]

My tablets are very unpredictable. Some days I can go nearly all day without them wearing off, others they sometimes do not work for up to 2 hours after I have taken them and then last for perhaps one hour. I am always worse

of an evening when I do not get much relief from my tremor.

Stress and worry affect my meds, usually only on a bad day.

[reverett123]

Yes, avoiding wearing off is a constant struggle and, as many have pointed out, stress is a major player. Then there is an hour's delay between what I take to correct and the effect that I seek, so it is like driving a car with a big time delay between turning the wheel and the car changing direction.

Seems that the only defense is to avoid stress and stick to a strict regimen that keeps the meds level in that "sweet spot". It takes a lot of experimentation and is a constant. And what works for you one morning fails for me the next evening.

As I mentioned above, stress (actually, our response to it) can destroy us immediately. PD is as much a problem of the adrenals as of the substantia nigra and that is why we see so little progress in treating us. It is being handled by a bunch of neuros who know little about endocrinology. Or immunology. Or the GI tract.

PD is a system-wide problem and has to be looked at that way if we are going to have any hope of a decent life.

[PatV in reply to reverett123]

Hear, hear!!

[Hidden in reply to reverett123]

How are you doing today?

[PatV]

I went off Stalevo because wearing off was sudden and total! Thanks to Stalevo I am using walker every time I go out because I do not want to be a block away from home and unable to walk! Also any random pain that pre-PD I would've ignored becomes a BIG DEAL with PD. A couple of trips to ER convinced me that first I take the meds, with food, regardless of whether it's time, apply ice, heat, pop a couple of advil or half a xanax, and give it a chance to kick in (doing my chant meditation) before I PANIC!

[grammy004]

My wearing off period is usually a few hours before my next dose...Stress don't help my wearing off periods I shake more and I get real BITCHY towards my Husband and then when I settle down my meds won't work at all I can't sleep at all up every night @ 2 this not being able to sleep brings alot of stress in my day I am gonna talk to the Dr again on the 10th and hopefully she will guve more than just a 1/2 pill of klonopin a night it ain't working I need something for this anxiety and this bitchyness

[Leyther]

Seems most have that the same problems.

This i what I find causes me to wear off

1 Forgetting to take meds on time, in particular the second Stalevo of the day as this is taken two and half hours after first and boosts me up for the day. DONT FORGET

2 Eating a heavy meal, especially if high in protein or fat, too close to taking pill or before pill has kicked in. DONT DO IT

3 Lack of sleep / rest GO TO BED / REST WHEN TIRED, READ BEFORE BEDTIME, AVOID STIMULANTS, STAY IN BED LONGER IF NO REASON TO GET UP,TAKE A POWER NAP.

4 Stress / anxiety. Both the same really, I differentiate them as Stress is usually a reaction to an event where as Anxiety is an involuntary reaction usually to something I put off for no apparent reason eg opening post

AVOID THINGS THAT STRESS YOU OUT IF POSSIBLE. RECOGNISE ANXIETY IS A SYMPTOM AND THAT YOU'RE NOT GOING MAD. ASK FOR HELP IF YOU NEED IT. WRITE DOWN PROBLEMS EVEN IF NO OBVIOUS SOLUTION. IT HELPS TO STOP YOU KEEP GOING OVER THEM IN YOUR HEAD.

5 A change in medication ie a generic drug prescribed instead of the usual one (or the other way round) generics can vary between 80 to 125 % of the patented drug. CHECK YOUR DRUGS FOR DIFFERENCES FROM THE NORM.

6 Sitting in the same position for too long. GET UP, MOVE AROUND, EXERCISE.

7 Constipation DO WHAT YOU HAVE TO DO, DRINK MORE, IMPROVE DIET.

8 Dehydration DRINK MORE WATER GENERALLY AND WHEN WORN OFF

9 Illness eg cold flu etc. REST

10 Interaction of PD and none PD drugs. READ LEAFLETS AND CHECK OUT

GENERALLY

I find that taking my levadopa based drugs with fizzy drinks helps them to work better, HALF A GLASS IS ENOUGH.

I you wear off at any time try this

2 spoonfuls of instant coffee, one of sugar.

half a cup of hot water

have a couple of mouthfuls (its horrid ) then rest,feet up

I find that works a treat to bring me back on.

Cheap caffeine drinks also help. Dont need much just a glass when needed.

iF AFTER TWO HOURS AND NONE OF THE ABOVE HAVE WORKED I TAKE ANOTHER PILL

NOTE THIS IS A RARE OCCURRENCE. IF YOU ARE REGULARLY NEEDING MORE MEDICATION YOU NEED TO SEE MEDICAL TEAM.

MAKE SURE YOU ARE OK TO TAKE CAFFEINE WITH YOUR DOCTOR

Leyther

[jupiterjane in reply to Leyther]

Life and the quality of life are on a fine line. How delicate our daily activities have become. We adjust our schedules around the taking of a pill in order to get the most out of a very limited energy. We are quite creative when need be, doing the best we can with what we now have.

Thanks for all the responses!

Jupiterjane

[CheriH]

Hi Jupiterjane,

With my meds, this has been the biggest problem for me....the wearing off between dosages. My neuro has recently changed my medications by adding Stalevo 100. I take it 4 times daily and take 1/2 tablet of carbidoba levidopa 25-100 in between the Stalevo. I also take 3 Requip XL before bed. It took about 3 weeks; but I'm doing much better and not experiencing the "wearing off" as often. Also of upmost importance is taking my meds timely. My life has become a series of alarms for my med schedule. I added alarms on my cell phone to remind me when it is time to take my medication.

Take care,

Cheri