I recently had my annual visit with my neurologist. The main thing I asked him to help me with was to adjust my meds to reduce off times while preventing/reducing dyskinesia. Since I had been on Stalevo he suggested I change to Sinamet with the same strength but without the addition of entacapone that comes in Stalevo. A few days after my visit I got the Sinamet and made the switch. What a terrible experience! I just crashed - could barely move all day and suffered all my usual miserable "off" symptoms. By evening I gave up and went back to Stalevo. Now I am experimenting with taking Stalevo 3 times a day and replacing it with Sinamet 2 times. That is working better but I am still making adjustments. I wonder if can ever make the transition to taking only Sinamet but I'll have to when I run out of my supply of Stalevo from my earlier prescription.
Also when I complained about leg cramps at night he suggested that may be because I'm not getting enough dopamine at night and that is why I am so stiff when I sleep. So he suggested I increase my night dosage. I'm still testing that theory out. Let's see how it goes.
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Joanne_Joyce
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From our experience with our son, any change in meds should be phased over a period of days, if not weeks. We had a similar sudden change 3 years ago and he ended up in A&E until 3am. For night time our son has used Controlled Release Sinemet tablets (50/200) for a long time with no ill effects.
Could someone please explain off times to me?Hubby has Parkinson and ankylosing spondylosis and scoliosis!Could the fatigue falling asleep after pills at lunch from off times?
Off time refers to the return of symptoms when the medication wears off and the next dose hasn't yet taken effect. With me, I get very stiff, I shuffle and move very slowly and generally feel miserable. When the next dose takes effect I feel fine unless I have dyskinesias.
Hi Joanne-Joyce. Have you ever considered starting to do fast walking, while you in an "on" state? If you think you are unable to do fast walking, let me know and I will tell you how you can do it.
Are you aware that no cueent Pd medication can or does affect the progression of Pd? Whether you take medication or not, yur condition is slowly getting worse and worse and the longer you leave it the worse it will get.
I am doing a tour of the USA and Canada right now and am coming across lots and lots of people who are severely affected by Pd and have terrible walking problems. I have been able to help every single one of them. Every one of them was able to walk properly, when shown how. It only takes 2 minutes. Does that sound like snake oil to you? Do you know, they did not have to pay me anything for this?
Why is it that people don't beleive what I am telling you right now. I am not in it to make money, so what do I stand to gain by travelling all over the world, at great expense?
John. Thanks but maybe you forgot I even had a foot path made around our house so I could take up fast walking. Unfortunately it is rainy season now here in Nigeria and my foot path is unusable. By the end of Sept. I should be out again.
Hi. I now take Stalivo in the morning (5am, 9am) and after that I take Sinamet every 4 hours. I can't say I have solved the problem as sometimes I have dyskinesia all day regardless of whether I'm taking Stalivo or Sinamet - especially if I'm under stress. You may have seen from a recent post that I have reduced the length of off periods by taking coffee with my meds. But that doesn't always work either. Just last Saturday I thought my 5pm meds would never kick in. It is clear that there are many factors that affect our symptoms aside from the meds and not all of them are under our control. I do hope you are doing well.
I am a 14 years PwP and for the last year I have been trying to achieve more "On Time" but without the dyskinesia which comes with any increase in medication.
I was good on Sinemet plus Azilect plus Amantadine plus Requip until I completed my 13 years as a PwP. At that time, I had to leave a clinical Trial I was participating in due to my bran's inability to absorb the requisite amount of infused protein. The previous year I had a brain op for the Trial but despite the best efforts of everyone involved (including a second brain op) I had to leave.
My Parkinson's symptoms were much worse by then (Freezing and Falling in particular but with balance and walking difficulties as well) but I cannot say it was the result of the two brain ops rather than just the onward progression of the condition.
The Neurologist responsible for the Trial (A guy I really respect) recommended I change from Sinemet to Stalevo 200MG. After a few months of waiting for the Stalevo to kick in, I switched to Stalevo 150MG (although the Neurologist could not understand this) 5 times per day and it became more stable. I kept the other meds as before but he also recommended I take slow release Sinemet for during the night and have dispersible Madopar 100MG for use in emergencies
I discovered that if I didn't take my last Stalevo at 21.00, I did not get the "during the night" dyskinesia (I reckoned that it was the last Stalevo working with the slow release Sinemet which I took at bed time (22.00 to 23.00). If we are out or have friends for dinner, I take the last Stalevo since we go to bed later and the clash of the two meds does not take place
I carried on with this regime until I could not achieve sufficient "on time" when in conjunction with a local PDNS, I started taking half a Madopar about 20 minutes before taking the Stalevo and this worked well until we were on holiday in Anglesey in September with friends nd I had 2 days when I was "Off" most of the time. I upped my Madopar to a full tablet which gives me more "On time" but increases my dyskinesia episodes. I will need to resolve this before I next see the PDNS on 24 November
I would appreciate you comments
I must say I was impressed with your taking your meds with coffee- wherever did you pick that up from?
I would also be interested in knowing how long you have been a PwP?
I wholeheartedly agree with you that there are many factors affecting our symptoms and not all of them under our control
HI Bob, Sorry for the delay in replying. I can certainly relate to your experiences. I was diagnosed in June 2009 and I've been on meds since then. Honestly I am still struggling to get my meds working right. I thought I was doing well taking Stalevo in the morning and Sinamet in the afternoon and evening. But recently they only worked for 3 hours instead of 4 hours. Then last week my off times reduced (with no change in my med schedule) but my dyskinesia was terrible - even while I'm taking Sinamet instead of Stalevo. It could be that the effect of Stalevo is still lasting into the period I switch to Sinemet. But if'm afraid to replace the Stalevo with Sinemet in the mornings because of the increased off times while I'm I'm at work.
Do you find the amantadine helps reduce your dyskinesia? If it does, it might be possible to only take Stalevo. Is madopar an agonist? I take pramipexole, which is an agonist, every four hours also along with my L-Dopa med. I was taking it 3 times a day a few years ago so I took it between my L-dopa and when my neuro found out he told me I was confusing my brain. He said the meds are supposed to be taken together so they are part of the same cycle. I thought of that when you mentioned taking your madopar 20 minutes earlier.
Have you tried drinking coffee with your meds? Does it help you?
I have now started taking my meds every 4 hours including 1am. I got this Idea from somone on this site and it really helps me since I wake up an hour or two before my first morning meds and I don't wake up "running on empty". But recently I wondered if that has increased my dyskinesia in the morning so now I only take a half tab of Sinemet at 1am along with the pramipexole. I don't know if that helps or not.
Well it is all clearly trial and error. I hope you have a good visit with your doctor this month and will let us know what he says.
Strangely, my Specialist Nurse has suggested I reduce my slow release Sinemet which I take at bedtime by 50% - and only take the other "half" if needed - not sure how I will know if needed but this is an attempt to cut down my L'dopa
She also agreed that I cut out my 21.00 Stalevo unless we are going out. I am happy with that.
Last night we were out at a dinner / dance (which is a rare event in our lives). I spent the whole evening with Dyskinesia and it was only the great band which had me jiving by 22.00. I didn't stay long after that and ha a dreadful night in the hotel and hardly slept. I was feeling awful this morning at breakfast and only started to come round about 14.00. I then had a couple of hours in bed but still don't feel great. It is now 20.00 and I'm hitting the sack at 22.00.
The Madopar dispersible is an L'Dopa drug which is quick acting and usually takes effect within 10 minutes and a half hour later I take the Stalevo. I started at half a tablet until Setemberwhen I ws on holiday with friends AND IT STOPPED WORKING so I started with a full tablet. I know this is yet another increase in my L''Dopa si I might try reverting to half a tablet from tomorrow
Your consultants advice about the taking of an Agonist srikes a chord with me. I have been taking Requip 16MG in the evening but am trying to bring it forward - the only thing is I get Restless Leg if I don't take it later - yet another conundrum for me to work on!
I am depressed (not clinically) with this dyskinesia versus mobility battle but will keep fighting it
Yes, I believe that the Amantadine was good at protecting me against dyskinesia but it needs some more help. now. The nurse thought about me moving to a third capsule but decided against this for fear of me starting hallucinating - which I do not want to experience
Hi Bob, I can sure relate to all you have reported. It is good you have a nurse you can consult with between visits to your doctor. I'm just experimenting on my own. I used to keep daily records of my symptoms/meds but recently I have given that up. It is almost as if there is no cause and effect relationship between meds and dyskinesia and mobility - There must be so many other factors involved like degree of stress, how much sleep, how much exercise etc - most of which we have little or no control over.
I'm just coming from the dentist and the dyskinesia was fairly bad although I took the sinamet instead of stalevo, hoping my body would stay quiet while I was in the dentist's chair. The poor man thought I was experiencing terrible discomfort due to the dental work and I saw he was getting very stressed about it. I finally had to explain that my body was moving because of dyskinesia, not because of the dentist's drill. That's another problem - do have to keep explaining?
First, a point for clarity - I haven't seen my neurologist since February (He does not make himself very available I'm afraid) so the nurse is all I have - apart from my GP of course so I feel very much on my own as far as Pd is concerned.
Your dentist visit reminds me of mine last week. I kept sliding down the couch and at one time my head got stuck facing into his and he had to tell me to move - I don't think he realized that I couldn't just lie back unmoving. Yes, w have to always explain
Hi Joanne, is Rytary,a controlled release C/L drug available in Nigeria? I am just curious about the availability of PD drugs in Nigeria.I should think,Mucuna puriens,s easily available.Also,what is the prevalence of PD in Nigeria"
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Anyone experience a wearing off cough/shortness of breath?
