Coping with Dyskinisia

[Joanne_Joyce]

I have recently had the strength of my meds increased and I am so happy not with my almost normal mobility. But I am paying the price with dyskinisa on and off throughout day - usually for about 2 hours between meds. I'd love to hear from others who have the same experience. Is there anything anyone has found that makes them less uncomfortable while their body is twisting and turning?

[michaela13]

No

[Hidden]

see your doctor

change meds

this is not right

change doctor

do what ever it takes to get it right

meds are the problem in my opinion

it can be done

life is too short

take control

[Joanne_Joyce in reply to Hidden]

Thanks Bailey.

[98Rob]

Ask your Dr. about adding Amantadine to your meds. regimen. It may help reduce the dyskensia.

[Joanne_Joyce in reply to 98Rob]

Thanks Rob. I will certainly do so.

[R8360V]

I've recently had my meds propped up too, but that's what I'm dreading I have enough twisting and turning as it is with my dystonia. So what do I do? I'm caught any way I look at it, sorry for not been able to help.

Wish I could.

[Joanne_Joyce in reply to R8360V]

Maybe some of the posts here will be helpful. I hope so.

[Espo]

Rumor has It that " Ceylon 'Cinnamon Tea" is good for dyskinesias. I just got started on it and have nothing to report yet.

[Joanne_Joyce]

Thanks. It's worth a try. Please let us know if it helps.

[Hidden]

Joanne

Sorry to hear about the dyskinesia. Did the doctor warn you about it? I recently tried to get my doctor to raise my Stalevo (like Sinamet) dosage. He was reluctant but eventually increases it from 100 X 5 to 125 X 5. I have yet to get the new prescription but I'll be bearing your post in mind when I start.

I read about a new drug Safinamide an MAOI inhibitor but different from Levodopa. It's thought to be more useful against dyskenesia. It may be still at the trial stage.

[Joanne_Joyce in reply to Hidden]

Thank you Grey Stones. Yes, I had had serious dykinesia some years back and since then have had my meds adjusted. So I suspected this would happen. But it is quite mild and I just love being able to move so easily now so it is a small price to pay.I've been on my new meds for almost 4 weeks now and the dyskinesia is less than it was the first two weeks. So maybe (hopefully) the body adjusts. So that might be your experience too if you stick it out. Thanks for the info on Safinamide. I'll keep watch for more about it.

[Hidden in reply to Joanne_Joyce]

Joanne I find your approach to the whole thing quite impressive.

[Joanne_Joyce in reply to Hidden]

Thanks for the encouragement.

[arthur84 in reply to Joanne_Joyce]

for Joanne Joyce, what new meds are you on, that gives you less dykinesia & dystonia. I've been on Rtary, taking 2 each dose{6-11-2-4-, around 10 , Most nights I can't make it until 6 am. Am getting a new neuro next week. Am just miserable as the 2 tablets don't last, if I take 3 as originally prescribed the dykinesia is driving me "crazy".

any suggestions until I see my new neuro.

Thanks arthur84

[Joanne_Joyce in reply to arthur84]

Arthur, I am on Stalevo and Myrapex. I've gone from Stalevo 50Mg to 100 mg and I now take it every four hours from 5am to 9 pm. I'm really enjoying the new mobility. I used to need to use a walker in the night and early morning but not now. I can tolerate the dyskinesia so far. Moving around helps and that suggestion to ride my stationary bike really worked. I hope you get relief when you see your new neuro.

[arthur84 in reply to arthur84]

Thanks Joanne Joyce. Are you on Rytary Also?

Arthur 84

[Joanne_Joyce in reply to arthur84]

No. The 9pm Stalevo & Myrapex see me through the night. My neuro said I could wait until 10 to take the last Myrapex but I'm OK taking them both at the same time.

[arthur84 in reply to Joanne_Joyce]

I would like to know what your meds are that helped your dykinesia. I have it so badly in the mornings. I'm on rytary and the patch. my dr is working different amounts of each, not a lot of sucess, but my Parkinson is better than with the levadopa=cardiopa I was on with so many different neuros. I haven't been with this one a month yet, but am pleased as i have other serious health issue and very difficult to treat.

thank you and hope you continue improving.

Arthur 84

[Joanne_Joyce in reply to arthur84]

Arthur, I'm not taking any meds to help the dyskinesias. What I discovered prevents dyskinesias all day is if I bike for 10 minutes each morning on my stationary bike. I wrote about his in another post a few days ago. Also I learned from someone in our group that I should bike any time the dyskinesias are bad and that really works. It is as if it triggers something in the brain that stops them. I hope you get the help you need.

[bigmama53]

I have dyskinesia episodes as a result of taking Stelevo. Like you,this is the price I pay to be as though I don't have Parkinson's when the meds kick in. The only way I am able to stop the twisting and writhing is to consciously make me stop. Jolly hard work and tiring on both counts. I suppose I count myself lucky as I've been diagnosed with P for 11 years and have only changed my meds three times.

[Joanne_Joyce]

Thank you Big Mama. Yes, I found I can stop them if I concentrate on them but then one can't even think any other thoughts. I hope some of the suggestions from our friends on this site are helpful to you.

[Hidden]

i have now taken myself all meds to see what stage pd i am now in

2 days off meds only have stiffness in right arm and hand writing has gone to shit

but dont need to write anymore

all other symptoms are gone

better to live with pd than with side affects of meds

i think this is do with crossfit

exercise seems to be key

crossfit helps with mobility

try not to add meds to counter meds you will just get more side effects

with the meds off times became the norm

i was intolerent of every one

cost me my job forced to take early retirement

put me in the er 2 times in 1 week

almost cost me wife of 45 years

dont take meds if you dont have to

please use simple words to describe your side affects

dyskinisa is a med term i cant keep them straight

when i have dyskinisa i just go walking it seems to mask it

i had been on meds for nine years

ask your doctor about reducing meds you hve to do it the right way

typical workout

PreWod

10 min every minute in the minute

3 Power Snatches

2 over head squats

MetCons

3 Rnds 3min AMRAP Thrusters/KB Swings

3 rounds

3 Min as many reps as possible

10 Thrusters 75/55

10 KB Swings 1.5./1

Rest 1 Min

[Joanne_Joyce]

Thank you Bailey. I'm glad to hear that you can cope without your meds. I can't and I am very grateful for them. I am impressed with your workout. Wow!

[Joanne_Joyce]

By the way Bailey, I spelled dyskinesia wrong in my original post. It is time I learned to get it right.

[JWebb994]

I have had some problems with this but I found out it was more related to "wearing" off than too much meds. Until I found a doc who was willing to increase my medications, I found the walking was about the only thing that would help me. I have walked many a mile related to this and I sometimes did it in the house. It is important to set up a clear pathway if you do it in your home. I walk up and down the hallway and into a living area and back down the hallway, etc. I have mentioned before on this site that when I walk, I am very deliberate about stepping on my heels and rolling onto my toes. It sure beats the Parky walk of stepping on your flat foot.

[Joanne_Joyce in reply to JWebb994]

Thanks JWebb for your interesting post. Are you saying that you no longer have dyskinesia now that your meds are increased?

Thanks for the reminder about how to step from heal to toes. I too have found that moving around helps relieve the dyskinesia. Walking a mile within the house is a good idea, although it might be a bit boring. Do you still do it now that your meds are increased?

[JWebb994 in reply to Joanne_Joyce]

I don't have the dyskinesia anymore now that my CR meds were increased at bedtime. I was pretty sure all along that it was a "wearing off" symptom for me. I wear the MJFox Watch and connecting cell phone. It is just so obvious when I started the extra CR med. I can sleep thru the night with no problems. What a big difference there is in my functioning now that I can sleep!

I do seem to have a quick reaction to my meds wearing off and will get a reaction sometimes during the day but it is not usually a problem because I am taking them every 4 hours during the day.

If I am not working, I usually walk for at least 20 minutes every hour. When I walk, I am very focused on my heel-toe and lifting my knee. Getting bored with walking is not a problem as long as I stay very focused but of course, I don't have to do it for very long now since it is not happening when I would normally be asleep. When I was having a problem before, it would usually take that long before it would stop. Actually it might start as early as 1am and last until 20 minutes after I took my 6am medications

I am also practicing walking backwards now. Toe-heel. I am doing that because I am more likely to fall if I suddenly need to back up for some reason. I have even started running a little bit since I feel so confident in my ability to stay in balance.

[honeycombe3]

I am finding this topic interesting as I have been dxd for 11yrs (now 67) I have only recently begun to experience dyskinesia. I was warned that this might happen when I started injecting Apomorphine (ApoGo) to help stop freezing. This has worked well for me & I don't find the movements too bothersome but my husband & close friends say it can make them feel seasick

It obviously causes consternation amongst those who don't know me when I am out socially but reactions have so far been sympathetic. I love the way very young children use direct language & as I spend a lot of time with them I have become used to giving a plain answer at the appropriate level. I find this often opens a conversation with the accompanying adult(s) so giving an opportunity to explain PD & answer questions.

I saw my consultant today & he wants to introduce Amantadine (I think). When I get the new meds I'll feed back here.

[Joanne_Joyce in reply to honeycombe3]

Thanks for your comments Honeycombe. I like the way you are helping others understand PD. Let's see what happens with the Amantadine.

[Blue-jeans]

Just today my sister and I were invited to participate in a month long Medication Trial for dyskinesia. I don't qualify as I don't 'squirm' ;), so my sister will go on her own, this will be mid October, I'll relay any info I get on this.

[Joanne_Joyce in reply to Blue-jeans]

We will look forward to learning all about this, Blue-Jeans. Where are are and where is this trial based?

[Blue-jeans]

In South Africa

[Joanne_Joyce in reply to Blue-jeans]

That's impressive. I'm curious to know who is sponsoring it. Is it a drug company? It would be great if the drug companies research into this problem... and find a solution.

Please let us know how it went.