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-   -   Do people with tremor dominant PD respond to different meds than people with stiffne (https://www.neurotalk.org/parkinson-s-disease/164855-people-tremor-dominant-pd-respond-meds-people-stiffne.html)

trixiedee 02-13-2012 07:38 AM

Do people with tremor dominant PD respond to different meds than people with stiffne
 
I am just wondering if people with different dominating symptoms respond differently to meds. I don't have a tremor (unless I'm really nervous) but suffer from stiffness and bradykinesia. Am wondering what meds people with these symptoms are on that are particularly helpful. Apart from L-dopa which seems to help most people.

Trixiedee

budgies 02-13-2012 11:23 AM

My husband is two years into his diagnosis, and has bad tremors in both arms. He is on Requip XL 18mg twice daily, and Madopar 100/25 three times daily.

Unfortunately, the medication doesn't stop the arm tremors, although they would probably be far worse without it.

Fortunately he doesn't experience any stiffness.

Hope this is of interest to you.

Conductor71 02-13-2012 11:31 AM

Tremor hard to treat
 
Quote:

Originally Posted by trixiedee (Post 851145)
I am just wondering if people with different dominating symptoms respond differently to meds. I don't have a tremor (unless I'm really nervous) but suffer from stiffness and bradykinesia. Am wondering what meds people with these symptoms are on that are particularly helpful. Apart from L-dopa which seems to help most people.

Trixiedee

I have all tremor types (lucky me)...:p

Started with action, postural, and now resting. Prior to PD diagnosis, I responded to a beta-blocker. Now l-dopa helps me so much that tremor rarely emerges anymore. I also still respond to a beta-blocker.

From what I have heard, tremor is not always responsive to ldopa. I have heard it can be hard to treat, so I feel fortunate.

Laura

budgies 02-13-2012 11:40 AM

Quote:

Originally Posted by Conductor71 (Post 851225)
I have all tremor types (lucky me)...:p

Started with action, postural, and now resting. Prior to PD diagnosis, I responded to a beta-blocker. Now l-dopa helps me so much that tremor rarely emerges anymore. I also still respond to a beta-blocker.

From what I have heard, tremor is not always responsive to ldopa. I have heard it can be hard to treat, so I feel fortunate.

Laura

You are indeed fortunate Laura to have your tremors under control - my husband would give anything to have the same.

Perhaps he ought to talk to the neurologist about beta-blockers when we next go?

Last October I bought an exercise bike, but since using it for ten minutes daily, his arm tremors are considerablly worse, and I'm wondering if the cycling could have caused this.

Any advice would be gratefully received.

aftermathman 02-13-2012 05:51 PM

Trixiedee and Budgies ...
 
his tremors could be worse simply due to physical exertion tiring the muscles and leaving him out of breath. It is tough to know as we don't know his age or state of health or general fitness level.

I do know that exercise is claimed to be only good for Parkinson's and I feel my exercise program has helped.

I would stick at the cycling and as he gets fitter the tremors may become less, (assuming he was relatively unfit, which may be a wrong assumption).

Trixiedee, as for the original query, I remember a thread about a year ago which defined a number of Parky profiles and there response characteristics. See the link below, it may be of some help.

http://neurotalk.psychcentral.com/thread101685.html

Neil.

indigogo 02-13-2012 06:37 PM

I am tremor dominant; l-dopa is effective - but Amantadine helps.

Peony 02-13-2012 11:41 PM

I am definitely tremor dominant (big bad noticeable tremor, both sides now) and have not yet found the right med to control it, or the right combo of meds. I've tried a few, had some fairly minor benefits but nothing that worked for tremor, and nothing worth the side effects. I'm on a very low dose of Sinemet (higher doses gave me dystonia--muscle cramping--right away). Also tried Amantadine, again some benefits, not for tremor, and intolerable side effect--severe insomnia. Brief Mirapex trial, did nothing for me, but got vision problems after just a few weeks (MDS said unrelated, but seemed like a big coincidence to me). If anyone finds the right stuff, I'd love to know what worked for you, esp. in cases where Sinemet didn't (like maybe the ET meds, for example?).

budgies 02-14-2012 10:37 AM

Quote:

Originally Posted by aftermathman (Post 851323)
his tremors could be worse simply due to physical exertion tiring the muscles and leaving him out of breath. It is tough to know as we don't know his age or state of health or general fitness level.

I do know that exercise is claimed to be only good for Parkinson's and I feel my exercise program has helped.

I would stick at the cycling and as he gets fitter the tremors may become less, (assuming he was relatively unfit, which may be a wrong assumption).

Trixiedee, as for the original query, I remember a thread about a year ago which defined a number of Parky profiles and there response characteristics. See the link below, it may be of some help.

http://neurotalk.psychcentral.com/thread101685.html

Neil.

Thanks for that Neil.

At the moment he is "resting" from the exercise bike to see if his tremors lessen. It's only been three days since he last used it, and so far the tremors haven't subsided at all.

I just hate the thought that the tremors are getting progressively worse.

We walk at least 2 miles daily, and for 68 he is pretty fit, so I'm keen for him to keep up the cycling. As you rightly say, I have only read good can come from exercise.

Nan Cyclist 02-14-2012 01:04 PM

Unfortunately, for the cycling to work, the patient needs to go for at least 40 minutes at 60-80 rpm three times per week. Add 10 min of warmup and cooldown. Keep the heart rate at 60-80 of maximum heart rate (220-age). Most people have to build up to that, but it is possible. In addition to cycling and meds (6mg ReQuip XL/day) another PD patient taught me to use a form of self-hypnosis to control the tremor. I was dubious, but found that by being still and saying "Quiet hand" on breathing in and "Peace" on breathing out my tremor usually stops, especially when I'm trying to go to sleep and I keep patting myself!

budgies 02-15-2012 05:43 AM

Quote:

Originally Posted by Nan Cyclist (Post 851598)
Unfortunately, for the cycling to work, the patient needs to go for at least 40 minutes at 60-80 rpm three times per week. Add 10 min of warmup and cooldown. Keep the heart rate at 60-80 of maximum heart rate (220-age). Most people have to build up to that, but it is possible. In addition to cycling and meds (6mg ReQuip XL/day) another PD patient taught me to use a form of self-hypnosis to control the tremor. I was dubious, but found that by being still and saying "Quiet hand" on breathing in and "Peace" on breathing out my tremor usually stops, especially when I'm trying to go to sleep and I keep patting myself!

Thanks for that Nan, but surely even ten minutes of cycling daily to the best of his ability has got to be a good thing?

I don't know if we're imagining it, but since giving up the bike four days ago, his arm tremors seem to have improved slightly. Having said that, from all that I've read, I do think it's important that he goes back to the cycling and tries to reach the goal you've described, albeit possibly in the distant future.

johnt 02-15-2012 08:03 AM

As far as I understand it, the Alberts's approach to forced exercise depends on the cadence (rpm) more than the effort. So, you could pedal slowly in a high gear, or pedal quickly in a low gear with both methods requiring the same amount of work and both getting to the same speed. But, as far as PD is concerned there is some evidence that the high cadence approach is better.

I have no experience of forced exercise cycling, but last year I built a machine to give me forced exercise of the arms. My stiffness reduced. But, interestingly, like Mr Budgies my tremor worsened. I don't know whether there was a causal relationship.

Has Mr Budgies tried the simple tremor reduction technique described in a recent thread? It helps me slightly.

John

budgies 02-15-2012 09:58 AM

Quote:

Originally Posted by johnt (Post 851908)
As far as I understand it, the Alberts's approach to forced exercise depends on the cadence (rpm) more than the effort. So, you could pedal slowly in a high gear, or pedal quickly in a low gear with both methods requiring the same amount of work and both getting to the same speed. But, as far as PD is concerned there is some evidence that the high cadence approach is better.

I have no experience of forced exercise cycling, but last year I built a machine to give me forced exercise of the arms. My stiffness reduced. But, interestingly, like Mr Budgies my tremor worsened. I don't know whether there was a causal relationship.

Has Mr Budgies tried the simple tremor reduction technique described in a recent thread? It helps me slightly.

John

Thanks John, I appreciate your input, and it was interesting to hear your findings after your forced arm exercise last year. May I ask - did the tremor that resulted from that last a long time, by which I mean minutes after the forced exercise, or until the next day?

Whilst I understand the need to reach 60-80 rpm in order to make any real difference to the PD symptoms, I'm still thinking that if he poodles along at his own pace, on a daily basis, this has got to be good for him?

I did see the tremor reduction technique detailed here in a recent thread (which I now can't find), but as it said the relief only last seconds, I didn't mention it to my husband, (who is also called John). Having said that, I'm very pleased to hear it works for you, albeit in a small way.

We're in the UK too - are you anywhere near Devon by any chance?

budgies 02-15-2012 09:59 AM

Quote:

Originally Posted by budgies (Post 851944)
Thanks John, I appreciate your input, and it was interesting to hear your findings after your forced arm exercise last year. May I ask - did the tremor that resulted from that last a long time, by which I mean minutes after the forced exercise, or until the next day?

Whilst I understand the need to reach 60-80 rpm in order to make any real difference to the PD symptoms, I'm still thinking that if he poodles along at his own pace, on a daily basis, this has got to be good for him?

I did see the tremor reduction technique detailed here in a recent thread (which I now can't find), but as it said the relief only last seconds, I didn't mention it to my husband, (who is also called John). Having said that, I'm very pleased to hear it works for you, albeit in a small way.

We're in the UK too - are you anywhere near Devon by any chance?

Sorry - just noticed your location, so ignore my last question!

Nan Cyclist 02-15-2012 12:57 PM

Distant future is fine. Where ever you are is a good place to start. If he can keep adding a few seconds or minutes each day or week, he'll get there, even it takes a long time. Worst case scenario is he gets more fit. I have no idea if his worsening tremors could be related to cycling/not cycling.

When I cycle inside, I both watch TV and listen to music so there is always a beat. Oddly enough (for a 66 year old woman) I can pedal most rapidly when I'm watching sports. Go figure.

Inspiring story: I met a guy last year who could barely walk. At age 81, he was over the limit for PFP but he begged to get in the program and his doctor finally said okay. I saw him again last week and he walked over to me, albeit slowly, and announced with a big grin that he had gone skiing the week before. Not far, no moguls, but he had gone skiing!

budgies 02-16-2012 05:54 AM

Quote:

Originally Posted by Nan Cyclist (Post 852007)
Distant future is fine. Where ever you are is a good place to start. If he can keep adding a few seconds or minutes each day or week, he'll get there, even it takes a long time. Worst case scenario is he gets more fit. I have no idea if his worsening tremors could be related to cycling/not cycling.

When I cycle inside, I both watch TV and listen to music so there is always a beat. Oddly enough (for a 66 year old woman) I can pedal most rapidly when I'm watching sports. Go figure.

Inspiring story: I met a guy last year who could barely walk. At age 81, he was over the limit for PFP but he begged to get in the program and his doctor finally said okay. I saw him again last week and he walked over to me, albeit slowly, and announced with a big grin that he had gone skiing the week before. Not far, no moguls, but he had gone skiing!

Thanks for the encouraging words Nan. I'll try and persuade my husband to get back on the bike.

After having said his arm tremors seem to have lessened since not cycling, last night they were bad again, so that's knocked that theory on the head!

As you say, the cycling must really do him nothing but good, so fingers crossed he'll keep at it.

When we see the neurologist at the end of April, I really don't want him to suggest an increase in medication to try and cope with the increased arm tremors, as from what I've heard the side-effects of increased meds are far worse thant the tremors themselves.

Would appreciate any further input from anyone please.

Peony 02-18-2012 02:24 PM

I try to bike every day, but am nowhere near the recommended pace or amount of time. I keep plugging away anyhow. I use an stationary recumbent bike (best with Ska reggae type music from free Pandora internet radio!), but am having difficulty maintaining speed due to sciatic pain in hip, plus a tendency to get winded quickly and lose energy. My tremor does sometimes worsen while biking fast, but goes away when I stop. I figure it's worth it, because some exercise should be good for general health reasons, even if not enough to be effective for possibly controlling PD symptoms or progression.

Arsippe 11-21-2012 01:21 PM

Quote:

Originally Posted by budgies (Post 851872)
Thanks for that Nan, but surely even ten minutes of cycling daily to the best of his ability has got to be a good thing?

I don't know if we're imagining it, but since giving up the bike four days ago, his arm tremors seem to have improved slightly. Having said that, from all that I've read, I do think it's important that he goes back to the cycling and tries to reach the goal you've described, albeit possibly in the distant future.

Have any of you who are tremor dominant tried antichiolinergics. Also, can something non prescription like Benadryl help tremor?

aquario 11-21-2012 08:28 PM

benadryl
 
I only use it to get a good night's sleep (when my tremor disappears). Haven't tried taking it during the day for fear of falling asleep with my face in my food.:)

Peony 11-25-2012 02:44 PM

I'm definitely tremor dominant, huge tremor. Briefly tried Artane, only because I really needed relief & nothing else worked, but got bad side effects (it's known for that). Benadryl not impressive. Haven't noticed improvement with exercise, but maybe I need to do it more & faster. Six years in, I've just about tried it all, but still found nothing for tremor relief. MDS Doc says I'll probably need DBS, but I'm chicken; hope something less scary comes along. Anyone have any tremor relief success stories?

Arsippe 11-25-2012 09:35 PM

I don't know....this is called one disease when some of us move too much and others move not at all.... Something is wrong with this diagnostic picture... Exercise seems to help a bit and sugar, on the other hand, cranks those tremors up. But I am not getting the theme here for tremor dominant sufferers....are we supposed to be helped by the same meds that help freezing? I'm just saying....:confused:

Aunt Bean 11-27-2012 08:51 AM

My friend had a hand and leg tremor even with meds...she tried fava sprout balls and the tremor stopped. As for the recipe...check four acres to grow favas Post. Personally..a really firm stretch as far as the arm will go can stop the restlessness and if the arm has come up into puppy begging position. (grab wrist of the problem hand with your other hand and stretch it to the other side shoulder level til tight and HOLD...crossing over to the other side of the body may have something to do with it) Worth a try . In church, I just sit on my hand if it bothers me or do a gentle stretch across my legs and down toward the seat. I don't usually notice tremors unless sitting for longer than 15 minutes...and it's hard to catch me in a 15 minute sit!

Arsippe 01-28-2013 02:13 PM

Which Beta Blocker?
 
For those of you who are tremor dominant--what beta blocker do you use to help with tremor? Or any other med that helps control tremor? It seems that there is almost nothing that is successful against tremor, at least from what I read and research. :confused: I started out with resting, then postural, more recently action.

aquario 01-28-2013 07:49 PM

beta blocker
 
20 milligrams of Inderal (propranolol). Helps if the tremor is stress or adrenaline induced.

Jon

Arsippe 01-29-2013 06:51 AM

Aquario, thanks for the info. Have you or anyone else who is tremor dominant tried Isradipine?

aquario 01-29-2013 09:40 PM

Isradipine
 
Talked with a doctor who was willing to write an rx, but my blood pressure has been so consistently low-normal (110 over 60) that I didn't want to lower it further. But if you give it a go please let me know the results.

Here's a link to a MJFox Foundation story.

https://www.michaeljfox.org/foundati...afe-Parkinsons

Jon

Arsippe 01-30-2013 07:09 AM

Thanks Aquario. I spent some time on the mjff website and saw they might need participants for a phase 3 isradipine clinical trial and will look further into that. Will let you know if and when I start taking isradipine.:)

Jim091866 01-30-2013 08:17 AM

tremor dominant PD
 
Hey all you fellow movers and shakers. I am not tremor dominant, bradykinesia and rigidity are my constant companions. I have had DBS and wonder how many of you have looked into it. The results are far,far better for tremor than any other symptom. They can target the leads right to where they need to be in order for them to be effective. I have had PD for 15 yrs. now and I'm on sinemet 25/100 1 tablet every 2 hours. Agonists only raise the chance of dyskinesia. I have tried benadryl with good results but the other people on the road won't stay home so I can get out. :eek: Couldn't stay awake!
I guess its the old story of write down all your problems then exchange papers with someone and you'll want your paper back!

Jim091866 01-30-2013 11:59 AM

Response to different meds?
 
I got to thinking about this and it would be kind of obvious to me that as someone who takes the sinemet (carbidopa/levodopa) in order to move otherwise I get rigid. So I would reason that no it would not be effective in reducing tremors since it enables movement, as opposed to slowing it. The DBS interrupts the signals that are too excited and cause the tremor. Just my thoughts. I would not think that the carbidopa is very effective, any input? Maybe someone who has a tremor AND rigidity?

Arsippe 01-30-2013 12:39 PM

Musical Chairs
 
Quote:

Originally Posted by Jim091866 (Post 952522)
I got to thinking about this and it would be kind of obvious to me that as someone who takes the sinemet (carbidopa/levodopa) in order to move otherwise I get rigid. So I would reason that no it would not be effective in reducing tremors since it enables movement, as opposed to slowing it. The DBS interrupts the signals that are too excited and cause the tremor. Just my thoughts. I would not think that the carbidopa is very effective, any input? Maybe someone who has a tremor AND rigidity?

Jim, I often wonder the same thing. Your problem, from what you indicated, is you can't get out of your chair due to rigidity, whereas mine is I can't stay in the chair due to tremors. So I would guess the same med you take to enable movement wouldn't necessarily do me any good because I need to diminish movement. They almost seem like two separate diseases with the need for two separate therapies. BTW, I can take 38 mg of benadryl and notice only slight slowing of my tremors and with no drowsiness. Prior to all this PD mess, you could have knocked me out with 25 mg of benadryl....go figure.:confused:

Nan Cyclist 03-05-2013 11:52 AM

The Parkinson's Disease Foundation pdf.org has a regular posting of science news that will be of interest to most on this list.

Read PDF’s take on a study which found different brain activity in people living with Parkin
son’s who experience tremors versus those who do not have tremors:
http://www.pdf.org/en/science_news/r.../pr_1361899345

I'm finding this distinction in many sources.


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