ATAXIA & TREMOR: caffeine effect

[BUZZ1397]

Is it just me? I find coffee helps to decrease ataxia, increasing manual dexterity for daily tasks, e.g., buttoning, tying shoelaces, typing.  However, if I drink a whole cup of coffee early in my day on an empty stomach, that makes it more difficult to raise my medication level to the point I have managed the tremor in my hand. So, I'm back to having trouble with ataxia. Now I have decided not to quit coffee but to move the AM cup of java back to some time later in the day when I have gotten my tremor managed. Made sense to me when I thought about it and now I have implemented this habit I want to suggest to every coffee drinker here that you try it too.  

[silvestrov]

There are several components of coffee that could possibly explain this anti-ataxia effect.  

EHT is one:  nature.com/scibx/journal/v4...

Coffee also has beta carbolines (MAO inhibitors): 

 ncbi.nlm.nih.gov/pubmed/161...

Glad to hear the coffee is working for you.

Rich

[BUZZ1397 in reply to silvestrov]

Way over my head but glad the researchers are trying to help us

[silvestrov]

EHT can be purchased for monotherapy:

neriumeht.com/

[silvestrov]

Then again perhaps you should just stay with coffee. It is good to doubt and re-check information:

infinitepenguins.net/nerium...

Perhaps you should stick with coffee.

[Bailey_Texas]

Do you have ataxia and Parkinson's 

[BUZZ1397 in reply to Bailey_Texas]

yes, and the ataxia seems to be progressing. Whats on your mind? 

[Bailey_Texas in reply to BUZZ1397]

never heard of it and did not know if it was a part of  PD

[BUZZ1397 in reply to Bailey_Texas]

Not every PWPD presents the same symptoms and you are one of the "lucky ones" to not have some difficulty coordinating voluntary movement and/or balance issues (ataxia). The neuro you go to ever ask you to close your eyes and just stand still awhile? They were checking you postural balance; a sign of ataxia is losing your balance when eyes are closed. You are so lucky Bailey.   

[Bailey_Texas in reply to BUZZ1397]

I am beginning to believe that. I have no tremor. I also can tolarate meds i take 1 50/200 C/L and 1 25/100 C/L  5 times a day without any side effects and 1 6 mg requip and 1 azilect 1 time a day. With these meds and a almost stress life style and exercise i get along very well. Only things that i have a problem with is sleep and my hands tend to get stiff at the last of my med cycle. 

I am 62 10 years DX and 25 years (as i look back) of early signs. 

  keep well and never give up

Bailey

[Beckey in reply to BUZZ1397]

Coincidentally, that position, standing fairly still with eyes closed, is a tai chi exercise called "the stem in water." I do that every day at the close of my routine.

[Mondoug]

It appears - from much reading - that it is important to drink your own ground-coffee, rather than Instant for best health outcomes!! 

[BUZZ1397 in reply to Mondoug]

I make coffee by pressing fresh ground and I use no sugar but add a dash of cocoa. No instant ever, yuck.

[Beckey in reply to BUZZ1397]

I get my coffee, dark French roast Fair Trade, in quantities of about a week's worth at a time at the health food store. I grind the beans there on the espresso setting. Is that as good as grinding them at home, or...?

[BUZZ1397 in reply to Beckey]

You live in SF don't you Beckey?  I know that everything is better there right off the boats and as fresh as could be. I've read before that fresh ground coffee stays "fresh tasting" about a week and longer if you keep it tightly sealed and in a cool dry place. For myself i've cut back to only a half a cup. Love fresh coffee but just can't take the vigorous shaking that large quantities bring on.  I admit to being a dunker so I start with a full cup so the cookies get fully immersed but I only drink half. Benjamin Franklin was right, everything in moderation...

[Beckey]

Buzz, what meds do you take that manage your tremor? I've been taking C/L but it hasn't affected my tremor one iota. I'll try your method and see if that helps.

[gypz in reply to Beckey]

remember  tremor dominant PD has less problem with cognitive problems and dementia. You may shake but your not crazy.

[BUZZ1397 in reply to gypz]

you're funny, thanks! I hope, that would be something sort of positive. Yay for us shakin but not too forgetful people.

[Sedona in reply to gypz]

Unless of course you shake like crazy.

[BUZZ1397 in reply to Sedona]

Took long enough but worth the wait for that one.

[BUZZ1397]

If I've had a good night of sleep I will not begin to tremor  right away as I get out of bed. Sometimes, barring anything stressful happening I can go a half an hour or so feeling near normal. When the tremor reaches my shoulder and chest I start my every 3 hour regimen. I take half of a 25/100 C/L, half a 12.5 mg benadryl tab, and a 250 mg capsule of GABA-plex. Until I get the C/L level up and tremor is managed, I avoid protein, I eat apple and drink some pureed veggie drink I get from the store and rest, waiting for the C/L to get up in the tissue giving me a flush. Soon after the flush the tremor begins to decrease. By the second time I do that routine I can navigate the day. Lunch and supper meals are regular but with small portions of protein. That goes on every 3-4 hours all day and usually at lest once at night when the creepy leg sensation wakes me up. I've gotten used to taking pills all day long, isn't it funny what you can do to be comfortable? Keep it at bedside with a bottle of Perrier because carbonated water seems to help speed absorption. That's my routine for what its worth. We know everybody has different needs. What has been your routine?

[grower in reply to BUZZ1397]

Buzz, by "flush" do you mean like a hot flush? Sweats? 

[BUZZ1397 in reply to grower]

I get warm and reddened skin for awhile.

[gypz]

It is true coffee is on the list of helpful products, so is nicotine. Ask google for the list of  OTC products and herbs that benefit parkinson's.

[BUZZ1397 in reply to gypz]

I used to smoke. Quit in 1995 as my wife insisted. It's all her fault I have PD. Seriously, I've since tried the nicotine substances people use to quit smoking to try it for PD and they were a 50/50 trade off. Calming yes but they increased ataxia. So, I thought no benefit and quit them.

[Sedona]

I find it interesting that you all are so in tune with what causes what and how you are able to remain so focused on your regiment of drugs and lifestyle, especially you Buzz. I mean this as a compliment! I feel like a complete idiot, I've been dealing with this for 13 years now and just know that I can feel different at any given moment of any given day. I must be the most unroutined pd patient ever! I can't seem to take my meds before they wear off completely, I eat what I want when I want, drink far too few liquids, except for coffee and have terrible sleep habits. I really don't know why, but my life is the same way. I stay busy, but jump from one thing to another, thus accomplishing nothing.

[BUZZ1397 in reply to Sedona]

Nice of you to give me compliments. I know nothing but how I feel. If I felt I had a good day, then I make an effort to remember what I did and what I ate over the past day and make notes. Then I try to do that again. Sometimes I learn something I can improve upon and add to my routine, sometimes I don't. You are well educated, I can tell. Sedona, I've cut way back on my caffeine intake with beneficial result. I still make a full mug of coffee but I only drink a few gulps to help swallow some dunked ginger snaps and that not until I,ve got my morning fruit and veggie puree' foods in me and got a handle on tremor with sinemet and supplements. Have you ever purposely decreased your coffee drinking?

[Sedona in reply to BUZZ1397]

I just can't seem to get a handle on it, there are just too many variables that come into play. Since I have very low blood pressure & blood sugar, I am often light headed, so often end up eating with my meds or when I feel this way. Some nights I'm in bed by 7pm, though usually wide awake by midnight, so get up & start my day at 2 or 3 am. Other days I may stay up until 9pm & sleep in until 4 or 5 am. I seldom drink coffee after noon, unless I have to drive in the afternoon or need too stay awake for something. My dyskinesia is sporadic and seems worse when something stresses me out, more so than with the timing of my meds.

[BUZZ1397 in reply to Sedona]

yeh stress is definitely a cause for worsening my pd too. What is the cause of low blood sugar in your case if you don't mind me asking you a off the topic question?

[Sedona in reply to BUZZ1397]

I've always had an issue with low blood sugar & low blood pressure, since I was a kid. At my Neurologist apt the other day, as often is the case, the digital machine could not read my blood pressure. They tried multiple times to get a reading with the manual type, and finally thought it was about 72/55. My instructions were to reduce my Ropinirole & increase my water & salt intake.

[BUZZ1397 in reply to Sedona]

yikes! Hope that b/p remedy works for you. My new neuro and I discussed my experiences w/caffeine's effect on my tremor. He assured me the caffeine in my coffee is making my tremor worsen when I drink coffee but it is not preventing the sinemet from working. He said the caffeine excites nerves so whatever tremor is there after dosing is not managed completely & becomes more intense until the caffeine effect is gone. He said, I should try green tea.