[Conductor71]

Hi,

I have had a rather abrupt change in my symptoms that came on rather suddenly and thought I was just having a "bad night" but then that night become a "bad morning". I am now on my third night and day of this.

I am tremor dominant and rigidity has rarely been a common symptom for me. However, have been awakened bys stiffness or cannot get to sleep because of it. The weird part is that only impacts me on upper half of my body especially in my arms. This morning my neck became super rigid to the point where I could barely turn it and if felt really heavy; this was after I had been up for an hour. During this time, Sinemet seems to never fully click "on" and an extra pill rarely helps.

I have not changed my diet, drugs, or routine, so I can't figure it out. I am a bit freaked out this is my new "normal" in my life according to PD. Has anyone else experienced anything like this?

Laura

[NorCalGal]

I can sympathize but unfortunately have no solution for you. That was my chief complaint before I was diagnosed.

Norcalgal

[ol'cs]

To go through periods where you lose your response to your medication regimen. This sucks, big time, because you become "non-functional" in a sense, and it can be very scary, with hypotensive events where you wonder if this is the "moment" and it will soon be over.. However, it seems like, for all the torture of PD , you just keep on living, living with pain from dystonia (muscular cramping), the tremor which is horrible, and the roiling dyskinesias ( which are extremely uncomfortable and often painful) living in a world that you would rather withdraw from. One begins to withdraw, as one loses function, yet MUST find the courage to carry on. That is why PD is so devastating to young onsets. They must be prepared to take care of themselves as well as their children, spouses and even parents. It becomes just to much to handle, and many just give up under the intense pressure. Over the last year, I have also taken a serious turn for the worse, but I will keep trying, I mean, it is better to have tried and failed than to never have tried at all. I am sure that there are medication changes that may buy some precious functional time.

[johnt]

Laura,

I hope you're feeling better.

Since it's a sudden change, I advise seeing a GP.

Regarding the upper body symptoms, I'm like that all the time; my legs are almost unaffected. I find that I have a dopamine threshold for each action. This varies from action to action; I always have enough for my legs, whereas my wrist only works when I'm fully on.

John

[reverett123]

Laura-
With sudden changes like you are dealing with, always consider the possibility of a hidden infection such as a UTI or an abcessed tooth. Neither is necessarily going to be obvious but they can kick the immune system into overdrive in the brain with the increased symptoms being the result.
-Rick

[soccertese]

laura,
my progression always seems to be an "event", i go to bed, wake up the next morning and am noticeably worse. maybe once or twice a year, not enough to really scare me though.
still no tremor unless very stressed or cold.

[lurkingforacure]

Laura,

First, I am really sorry to hear this, I know how scary it can be. Hold on

Second, when things happen suddenly, my first suspects are drugs: I know you said your med regime is the same, but did you open a new bottle of pills? Maybe they are not the same maker/formulation....on the other hand, if not a new bottle, perhaps the old one got into some humid air, too hot, etc.....sinemet and heat are a bad combo, Rick has posted about this before (never leave the drugs in a car on a hot day....)

If not a pill issue, any new stressor? Stress has an immediate and horrific effect, so think about that. If you remember something, try to figure out how to get that stressor out of your life.

Try deep breathing several times a day for five minutes or so...you have to take deep breaths, hold for a few seconds, then exhale slowly. I have read that this deep breathing slows down the autonomic system (it can't stay revved up if you are controlling the supply of air!) and that may help.

When all else fails, hug someone you love and don't let go

[reverett123]

Lurking made a good point and made me think. Three weeks ago I filled a 30-day script for sinemet CR 200/50 at a local CVS pharmacy. Comparing the new ones to the old, it was taking almost exactly two hours to get me on my feet where the old one was a solid one-hour experience. What meds you using?

[Conductor71]

Hi all,

Thank you for your input and support. I am doing much better as I am back to 90% full "on time".

Rick, I take the formulation of levodopa made by Teva and I was already 2 weeks into using that batch so they could not have been a generic issue.

I think it was a combo regular hormonal peaks and valleys, plus I forgot that last week I cut down my Comtan intake rather quickly as I had done previously with no problem. I have also been sleeping a rather glorious 5-8 hours a night! So the two chemical changes with lack of movement was resulting in needing more meds plus big time muscle/joint aches with some neuropathy. Did I mention how much I love this disorder?!?


Johnt, I don't know how you or any of you can hack the chronic rigidity; I know we all adapt and it may become less uncomfortable over time, but I am a wuss. I used to think I had a high pain threshold...not so much


Laura

[vlhperry]

I have fluctuations every so often and usually it requires some med adjustment. I was diagnosed 29 years ago. Most of my fluctuations occur more frequently now since aI have finished going through(sorry, the word slipped from my brain; think it starts with "M") all woman experience if they live long enough, which I have. For those newly diagnosed, hope that you follow Ol cs advice, it msy be aa downer when this happens but it is all in your attitude. Go Parkies! Go Parkies Go Parkies!!

Dianna