Increase in Sinemit : Recently my... - Cure Parkinson's

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Increase in Sinemit

M-o-ggy profile image
23 Replies

Recently my specialist doubled my Sinemit. Recently my heart has been even more erratic than usual and has developed a new habit of missing more beats than I feel comfortable with. I know it sounds dramatic but one Saturday evening I felt so ill that I thought I was going to die. The result was a week of doing very little at all.

We have also been through a very stressful time recently and I didn’t know how much of an effect that has had.

Well yesterday I started thinking more and reacting less. Last evening I reverted to my last dosage of Sinimet.

My heart is still erratic 34 -104 so far today without obvious missing of beats and I have felt well enough to take some exercise instead of 36. -140 lying on the sofa most of the day yesterday with a lot of missing beats

I am stage 3 and was taking 10 12.5/50 tablets and 1 long lasting 25/100 at night along with other supplements which I know is not a lot.

Does this make sense.

Tried contacting my Doctor. The process is thatfor an appointment in a few days I tell the receptionist my symptoms who tells the nurse who rings me back to ascertain that my need to see a doctor is not a ‘long term condition’. A non emergency appointment averages about 6 weeks.

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M-o-ggy profile image
M-o-ggy
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23 Replies
Kevin51 profile image
Kevin51

You may have a heart problem as well as Parkinson's. You need to see your GP about your heart not your Parkinson's. If that is a new condition and you have not been prescribed medication for it then you should be seen quickly and you should ask for a referral to a cardiologist.

When you check your heartbeat is it usually regular with maybe the odd missed beat or is it sometimes quite irregular with lots of missed beats?

M-o-ggy profile image
M-o-ggy in reply to Kevin51

On reflection since the increase in Sinimet it has been irregular with lots of missed beats. Before that I would say there might have been an occasional missed beat.

Today I have taken my pulse and it has been the occasional missed beat with a range of 34 - 124. The 124 was when I was feeling a little anxious.

The Saturday night I mentioned it was 6/7 beats and a missed beat. It frightened me so much I only took it twice.

park_bear profile image
park_bear in reply to M-o-ggy

Why not back off on the Sinemet? It is purely for symptomatic relief. If it is making you feel worse there is no point.

Kevin51 profile image
Kevin51 in reply to M-o-ggy

See your GP asap. Or you can simply go to A and E with heart irregularities. Try to take some notes as having it all written down helps when it comes and goes. It is not always easy to take your pulse - do you have a friend who can do this and corroborate? Good luck!

jujulini profile image
jujulini

park bear is right. cut back on the sinemet, and see if you feel better. doubling it seems excessive. i certainly wouldnt wait to hear from the md, or for an appointment. dont be afraid to take charge of your treatments.

JohnPepper profile image
JohnPepper

Wow! I talk to hundreds of Pd patients and listen to the common complaint that when they see their neurologist he/she always increases their medication, usually the sinemet. That does not apply to everybody!

In many cases the patient tells me that they were doing fine until they were put onto the extra medication, then this or that happened.

I always ask patients, who are doing the fast walking, if they had found any improvement in their symptoms, and here and there, some of them have.

This week, Colin, a patient said that he did his walk that morning and felt great. He did not take any medication until after 11 am, when he began to feel the need for it. Then he started to get Dyskinesia. Why is that?

Unfortunately, his neurologist had not tested for any improvement in his condition, when she last saw him and she increased his medication, which has brought on the dyskynetic movements now.

He asked me what was happening? I said that his condition was obviously improving, which was why he had been able to do his one hour fast walk, and had not needed any medication until 11 that morning. The reason why he was getting dyskinesia was because he was taking too much sinemet. His neurologist should have reduced the dosage, not increased it.

I am not in the position to tell a neurologist what to prescribe but Neurologists should be made aware that fast walking does repair the Glial cells in the brain and when that happens the brain produces more dopamine, which means the patient needs less medication.

How do I get that across to the medical profession if they won't talk to me?

I have had many other Pd patient who have had that problem.

If you have a suspected arrhythmia then you should get to your GP or to A and E. You really need an ecg to see what is going on. Wait and see is not always the best option for suspected heart problems!!

aspergerian13 profile image
aspergerian13

I have been posting about dysautonomia and cardiac in Parkinson's because I have blood pressure issues related to orthostatic hypotension and especially postprandial hypotension.

Levodopa, amantadine, and methylphenidate are vasodilators. Other PD medications that area dopaminergic may also cause vasodilation.

I recently obtained a blood pressure cuff. i am learning how and when to use it.

Martink58 profile image
Martink58

I have PD and Atrial Fibrillation. I feel there is a connection but neurologist denies. Frustrated and Helpless. Get your heart tested.

jeffmayer profile image
jeffmayer

My pd nurse had increased my sinemet by two thirds which has stopped wearing off but caused dyskinesia sounds like you could possibly have something not right with your heart my blood pressure is.about 120/75 I do check it every day sounds like you need to see your neurologist again

Sane1 profile image
Sane1

I agree with Martink58. If your heartbeat is irregular and you are getting varied pulse rates you may very well be in Atrial fibrillation. If left untreated for long it can affect the pumping action of your heart.

You need an electrocardiogram (ECG). Go to the emergency department if you cannot be seen right away.

Anxiety would usually have you feeling palpitations and your heart rate will be normal or a little fast but not irregular. Either way an ECG is indicated.

SELFMeder profile image
SELFMeder

Is Sinemet similar to what John Pepper refers to as a MAO-B inhibitor, which I believe is the drug he relies on along with fast walking and dieting?

M-o-ggy profile image
M-o-ggy in reply to SELFMeder

I am very sorry. I don’t know

Hikoi profile image
Hikoi in reply to SELFMeder

No sinemet and MAOB inhibitors are quite different drugs and are not interchangable.

Beverly2017 profile image
Beverly2017

I think Azilect and selegiline are Mao. B inhibitors but sinamet is not

Ruffinglgo profile image
Ruffinglgo

Hi I have to prepare for this hurricane but after reading your post I have just been diagnosed with afibb. I know that palpitations have gotten worse since starting Ropinirole. ( would prefer Requip). Blood pressure cuff shows erratic heart beat as well whenever I tried a new BP med. Swings in BP readings always a high BP. I have read that Ropinirole is a trigger for afib. I was happy with Isradipine 5mg mornings and Lisinipril 5 mg afternoon. Now cardiologist has entered my life with Metoprolol ER and Eliquis that new blood thinner advertised every night on TV. I feel much worse and have trouble exercising. How to explain that I have PD and would prefer less meds! Does this help?

PDGal4 profile image
PDGal4 in reply to Ruffinglgo

I'd check with the doc on side effects of metoprolol. Not sure if that's the one, but one of those afib meds can cause flutter, which is worse. Don't stop taking but check.

Ruffinglgo profile image
Ruffinglgo in reply to PDGal4

I will check on side effects of metoprolol. Thank you!

francis6 profile image
francis6

I have gone down the exercise and diet (very low carb) route and had to cut my Sinimet medication because I was getting palpitations and severe anxiety after starting the diet. My neurologist advised against but I cut my medication by 2/3rd and feel much healthier (mentally and physically). My anxiety lifted within a day or two and palpitations reduced over the next week. Since I cut my Sinimet (about 5 months ago) I feel much better.

Prior to this my neurologist had been steadily increasing my Sinimet which seemed to produce no benefit but just made me more anxious.

This is just my experience not a recommendation.

M-o-ggy profile image
M-o-ggy

This morning I was even more sensible and read the leaflet accompanying the meds. It says that Sinemit can cause the symptoms I have experienced and if it happens see a doctor. As that is likely to be a 6 week wait or earlier if I can convince the nurse. As Sinemit is not a cure I shall just experiment and see what happens Thank you everyone for your support and advice. It has been invaluable

aspergerian13 profile image
aspergerian13

An excellent, important discussion. IMO, to many physicians are medicationists, focusing on office calls and prescriptions while turning away from research showing interconnections. Examples include dysautonomia, postprandial hypoperfusion, orthostatic hypotension, and atrial fibrillation.

Levodopa is a vasodilator.

"How do I get that across to the medical profession if they won't talk to me?

I have had many other Pd patient who have had that problem."

Neurology wants to continue this status quo. They get paid by sending patients away with a script. bob's your uncle, next! That's why Neurology is never an answer. You never get better.

M-o-ggy profile image
M-o-ggy

Hi all

It has been a bit of a journey but I feel I am getting there (I hope)

Cutting my medication back turned out to be a good idea. A lot of experimenting with dosage and timing.

Am sometimes taking three tablets a day then long release. Sometime 4 and no long release. Sometime take a tablet and take a half tablet an hour later. My heart has settled and I do feel that there is a link between the tablets and the heart rate.

I couldn’t face going to the doctor. They are so negative. With my profile I just intend to keep as far away as possible

Have developed a sweet smell (which I assume is body odour). If I smelt that in the sheep I would say it was keotosis

It is intermittent at the moment.

This last week I have usually been waking around 5 in the morning with stiff leg muscles I now get up and take a Sinimet tablet. It takes a while to work.

I read recently that being emotional is a sign of Parkinson’s. Wow. Something else explained. I used to be very unemotional and practical. Now I cry at every small sadness weather it is something on the news or some v small personal upset I can clearly remember the first time it happened. I was crying buckets over a radio program talking about a disaster at see that happened 40 previous. . My son sat by my side just looked at me in amazement.

To sit there with tears streaming down your face and logically wonder why is a very unsettling experience.

So I am not going mad

And

Thank you everyone for being here. You are such a support.

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