I was diagnosed with PD in early 2011 but probably had it for at least 2 years before that. Since diagnosis I have been on Madopar (cobeneldopa) at increasing levels. Now I'm on 187.5 mg four or five times a day plus a 125 CR at night. I also have 24 hour I mg patches of Rotigotine as an an additional agonist. Since the start my main symptoms have been - Freezing, shuffling and poor movement from starting off, dyskenesia, burning legs and feet, excess saliva, inner tremor, tiredness, not being able to stand and chat and periods of switch of (zombie like feeling).
In the last last year and a half I have also had bouts of muscle pull or tightness that have gradually got worse. I'm informed that this is Distonia and coupled with Dyskenesia, it's causing some increased distress. This facial Distonia has steadily got worse and quite frankly it's horrible to live with. It's also starting to affect my speech a bit.
It seems to be linked with too much Madopar but the problem is if I decrease the level I get bad switch-offs, where, almost as a warning, I start to get the inner tremor symptom then - BANG, I become spaced out like a zombie with the dreaded PD stare and I have to wait for up to an hour or more for it to wear off.
As a newcomer to this forum (see introductions) and having read some of the story's told. I can only admire the stoicism and fortitude of people and feel almost guilty that I may seem to be moaning, especially when I read about relatively young people. I put up with and accept (reluctantly) most symptoms and continue to be as active physically and mentally as possible. I go for walks (up to two miles) with my wife and when I get cranked up and have forward momentum, I'm no too bad but stopping and starting are a problem. My cognitive skills are still good. I'm not allowed to drive because of PD.
What's really bugging me however is this facial distonia (muscle pull) it's so awful but does often ease off. So after all this and if I haven't bored the pants off you, what I'm asking is, has anyone in the forum any suggestions on how to reduce this problem, preferably with non medicinal remedies. Facial exercises help a bit
After zero reply's to my posting about facial muscle pull and its effects, I guess this is not a common problem.
I'm rapidly developing a feeling of isolation. Hey-Ho.
We're sorry to hear you are feeling isolated. Please remember that you are not alone, and if you need to speak to someone you can call our Helpline free on 0808 800 0303. Our opening times are: Monday-Friday: 9am-7pm, Saturday: 10am-2pm. Our trained advisers, include specialist Parkinson's nurses who will be able to talk to you about the facial muscle symptoms you mention.
I hope this helps.
have you tried spacing your meds abit more little an often remember pd drugs have a 4 hr window half an hour to work 3 hrs on ! time last half an hour wearing off! maybe try smaller doses every 2 hrs .have you spoke to your pd nurse about it ,as i used to get very bad dyskinesa causing muscles to tighten up !
Your advice is really helpful.
On Tuesday just gone, I managed to squeeze in an appointment with a PD specialist. She, more or less said what you recommend. So I'm now trying a lower dose of Madopar but every two and three-quarter hours. She has also upped my twenty-four hour patch of Rotigotine to 2 mg as 1 mg is, as she describes it, merely homeopathic.
Early days indicate some improvement, but I need to give it, say a week before drawing a conclusion.
Your input was just the sort of thing I was searching for on this forum. I have to try and ease this facial problem.
yeh sorry i never wrote sooner hope it works for you .i think maybe your question would have got answered if you went to the introduce yourself page ,but hey your here now so welcome & i will keep a eye out for your post or just private message me .remember no to take pd meds to close to bedtime a it will be very hard to get to sleep, if you take slow release take at bedtime .all the best
It`s easy to feel alone with this condition. I feel that the isolation is probably the worst thing to contend with. It`s really not very common, and I would welcome some contact with others going through this.
I`m fairly fit at the moment, and active, but would like the opportunity to talk to more people in our situation, who are also grandparents.My GP thought a Parkinsons group at this stage was not a great idea.
All the best,
Thanks for your sensitive and kind reply. I went to couple of group sessions a few years back, mainly because of local fund raising and had very mixed feelings about them. Attending them I came across the whole range of conditions and the whole human array of responses. In some ways it was like looking into the future and that didn't appeal to me. The optimists were encouraging but the pessimists sort of won the day. I haven't been since. I'm encouraged however by the remarkable stoicism of many PD sufferers and try to use them as my guiding light.
Like most I get down sometimes. My wife is very understanding but of course sometimes (particularly when I'm having a bad time) it's hard for her. My identical twin brother, whom I was very close to, died from a massive stroke, bleed to the brain last June and that left a big hole in my life. I communicate with my sister a lot, she has had PD for fifteen years and is ever the optimist, so that's good.
I live in a small village and have been active in it for thirty years. The people are very kind, but again you get the full range of responses, eg - "a friend of mine has Parkinson's, he's still mountaineering and skiing" or "a friend of mine has Parkinson's, he was in a wheelchair within six months and is now in a bad way".
The feeling of isolation I mentioned is complex and I think, to do with this facial muscle pull which is horrible and has only happened in the last four months? I've found it difficult to communicate this and get some responses and felt that maybe it is unusual symptom. Gus came up with some good advice.
Being a Granddad is great but my three granddaughters are grown up and we don't see them as often as we used to.
Good to hear from you.
Hi Gus and all,
Just an update on my facial muscle pull problem and your advice about taking smaller doses of Madopar more often. I took your advice and I'm sure it's helped a bit.
One problem however is however, as I mentioned, I saw a PD specialist and his advice was similar. But the specialist also recommended I go on 2 mg 24 hour Rotigotine patches. Since taking them I have been more sluggish and more zombie like. I reported this to my GP, who says stick with them for a while but after a week, instinct tells me to come off them.
Three questions to all tuned in - Does anyone else on the forum get this horrible muscle pull in the face? I'd be interested to hear your story and medical and non medical solutions. Does anyone else have experience of Rotgotine? Is instinct occasionally more fruitful than medical advice?
I love and admire the humour of some of you guys and girls out there, in spite of your problems. It cheers me up.
no more ideals on facial muscles i still think its to do with your meds ,do you get alot of dystonia or dyskinesia if so i would put that all together .when you take your med & it takes say 45 mins to come on in this period off 2hrs 15 mins does your muscle pull come then ! if so i would say maybe down your dose where you feel happy ON & no muscle pulls ,im not a professional but i do recommend people to play with there meds abit thats if they are a 100 % sensible with it ! how bad are your symptoms
If this is a form of distonia, has anyone suggested botulin (Botox) injections?. These are in common use for PWP's and others with distonia. My PD nurse suggested this could be arranged for my eyelid which wont. open til a while after I wake up. Bit of a sledge hammer to crack a nut in my case but in your situation worth a mention to your medics?
I'm sorry that you're still experiencing facial muscle pulls despite the suggestions from other forum members and your PD specialist. It sounds like quite a distressing symptom, especially if it's starting to affect your speech.
I just wanted to remind you that you should always check with a healthcare professional like your GP or Parkinson's specialist before stopping or making any changes to your medication. You can also call our free helpline, as Joanne mentioned on an earlier post, to chat to our Parkinson's nurses for advice and suggestions on how to deal with your symptoms, or to discuss your medication.
Hi gus, Eileenpatricia and moderator plus all reading this,
The facial muscle pull I get is Distonia. I've had muscle pull for at least three years and it's been bearable and to some extent, controllable with Madopar but facial Distonia has only been a problem in the last four months and Madopar has not been that effective, although less more often has helped a bit.
Rotigotine patches (at 2mg) however have been a failure, worsening my other PD symptoms, especially akynesia and making me sluggish and zombie-like. Instinct told me to come off the patches. This I have done and things are a lot better but still the facial Distonia persists. So I will contact my PD nurse and PD specialist this week.
I do get Dyskenesia and Distonia and many other symptoms that are typical PD.
I'm not prepared to attempt Botox injections without lots of discussions with PD specialists and even then I I would feel uneasy about it.
hope it all works out for you.
My experience with tightly cramped toes is that botox is often mentioned in a vague possible future treatment kind of way, but later you are told it's too painful, you would need it so often, you wouldn't like it and it would only be a tiny help anyway.
Best of luck
I to have Distonia but not in the face it starts in my right foot the spreads to my left foot before taking over my shoulders I have never allowed it to go further than that it's the worst possible symptom for me as it makes me feel so vulnerable. And I am a very feisty 50 year old who stills likes to party, I do not have a non medical suggestion except I feel the cold makes it worse my medical answer is the Apo-Go drug in injection format it generally corrects the problem within 5 to 10 minutes and most days I get at least one attack per day.
Mine is not caused by my meds it is a symptom of my PD.
I wish you luck and hope this info helps.
Have read a lot of your inputs.
Sometimes you make me laugh, sometimes you make me cry, sometimes you are bit naughty. But above all you an example of how human beings can deal with adversity in many ways.
I've never heard of Apo-Go, I'll look it up on the web?
I get Distonia in my legs but the facial thing is horrible. It's starting to affect my speech and starting to give me the PD grimace.
Thanks also for your input Mosie.
Jules77 (soon 78).
You describe me to perfection that is the feisty argumentive person I am. But as stated in a previous post I am still a big softie who cares about anyone who is suffering the same s*** as me.
If you want further info on Apo Go I suggest you look on the Distonia society Website and you could also call the help line here. Some Dr's are of the thought process to prescribe it sooner rather than later . Can I ask which hospital are you under?
And when I have brought tears to your eyes I hope they have been tears of laughter because that is something we must never ever forget to do.
Yes it's mainly tears of laughter, but sometimes it's a Big Blub. I remain cheerful and as active as possible. Laughter and Music are great pick me ups and can seriously reduce symptoms for a while.
I saw my GP today, he is not keen on ApoGo at this stage, saying its for advanced cases. To be honest I'm not too keen either but thanks for telling me about it. My GP prefers to experiment with Madopar (co-benelldopa). After nearly five years I've tried all the additional agonists, patches and oral, none have suited me.
I have also been given some facial exercises but have to do them in private as I look like those gurney people and I don't want to spoil the good looks that my cracked magic mirror tells me I have. Trouble is it also tells me that someone called sea anglers looks are fairer than mine. That can't be!
The balance of too much Madopar, to too little is difficult and problematic, both can cause switch-offs. When I have a switch off, that's when the facial Distonia is worst.
Stress, arguments or tension alway affect my PD symptoms, especially the facial muscle problem. I used to love the cut and thrust of a good disagreement, but no more.
So Hey-Ho, I will keep trying to get it right.
The very best of Luck to you glad I have mostly made you laugh.
If every you want to talk just private message me we can exchange numbers then and I promise I will be here for you,
Kindest Regards Karen BB x