CONFUSED: My husband who is 77 was... - Cure Parkinson's

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CONFUSED

Auddonz profile image
29 Replies

My husband who is 77 was diagnosed with Parkinsonism. After a bout in the hospital to treat AFib, he was put on a new med since the one he has been given was not working. The med is a heart med called Amiodarone which is controlling the AFib. But he suddenly had difficulty getting out of a chair, getting in and out of bed, getting in and out of the car and other symptoms of Parkinsons. Had a brain x ray, cannot have a MRI, since he has a pacemaker/defib. No tremors of any kind. He is very tired and sits down on the sofa and just falls asleep. I spoke to his cardio about this and he said it had absolutely nothing to do with the med. He was also put on Warffarin, prob spelled that wrong, Carbidopa 15Levodpopa100. He is and has been on other meds for his heart and high blood pressure. He is very frustrated with the complete change in his body. Has gone through PT and OT and has been shown tips and exercises to do to overcome some of the issues. My question, he takes all of his meds and there is some improvement in his movements but are the meds, specifically the Amiordarone causing the issues. His cardio said there is only one more med he can put it on but it over $300 a month which we cannot afford and has to go into the hospital for 2 days to determine if it is good for him. From research I have done when first put on Amiodarone you should be monitored. He was not. I need some input desperately and so does he. Why is this so difficult to determine?

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Auddonz profile image
Auddonz
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29 Replies
Hikoi profile image
Hikoi

Oh dear how very worrying for you. I find this site trustworthy and tries not to be alarmist. patient.co.uk/medicine/Amio...

It certainly lists extreme tiredness as a side effect. There is a cardiac / heart forum on here I'm sure and you may like to post there too. Is it possible to get another opinion on your husband's treatment and is he under a neurologist?

Auddonz profile image
Auddonz in reply to Hikoi

Hi Hikoi, Yes he is under the care of a neurologist as well as his cardio. Also since he has developed a cough so will be gong to a pulmonary specialist as well. Had a cat scan of his chest and nothing significant was found.

Roseyuk profile image
Roseyuk

Hi Audonnz

My husband has Parkinson's also.

Diagnosed 4 yrs ago, has had trouble been medicated

For awhile now..

He suffers with aches and pains trouble getting out of bed and chairs ect,

Plus he walks with a very bad shuffle and sometimes falls, our Parkinson nurse is very helpful with all this and trying to get Physio set up.. And a dietician, as he has lost weight.

He also has a pacemaker,

As for Amioderone, well I took that for quite a few years,

And the side effects, with me we're getting worse, so I was taken off it , and given heart ablation last year, but was not successful,

So awaiting another one in March.. I am 70 my hubby 76

At the moment I am in a beta blocker and warfarin to control my A fib.

I would never go back on Amiodeone.. Do some research on the drug or ask you're GP to explain other medication for A/ Fib

Hope you find some answers

Regards to you both ..

Auddonz profile image
Auddonz in reply to Roseyuk

Hi Roseyuk, He cannot have heart ablation because of his other heart issues. He is not in pain, except for his left shoulder. His OT has him doing exercises that will not aggravate the shoulder more. As for me I don't go to the Dtr except when medically necessary, do have heart issues, high blood pressure, along with IC and problems with my pancreas. My hubby is 77 and I am 76, trying to be thankful for what we have an what we can do. Are you in the US or UK?

Roseyuk profile image
Roseyuk in reply to Auddonz

Hi Auddonz

I can't. Remember, what heart conditions you said you're husband has.

I've had a massive hear attack. 10 yrs ago, have 2 stents in my heart..

And I have had one ablation with no heart issues,

Afterwards.

But it's obviously something you're husbands cardiologist. Or his EP guy would take his heart condition into serious consideration

And his general health.. Also

I hope you find the answer for you're husband soon.

.

Auddonz profile image
Auddonz in reply to Roseyuk

Thank you me too!

Roseyuk profile image
Roseyuk in reply to Auddonz

We live in the UK. Auddonz.

But did live in USA for 15 years..

Jash profile image
Jash

Been taking amiodarone for two years; I've noticed the tiredness too. It is better than the alternative of worry about afib. I was not monitored either, except that my physician was available personally on the phone if I noticed anything unusual. Another physician wanted to put me in the hospital for three-day's observation for another, stronger drug. When I read the on-line research about it, I said no way and got another doctor. That' where my amiodarone journey began. I think this one is safer---side effects!!!!!

Auddonz profile image
Auddonz in reply to Jash

Yes Jash, if I am correct amiodarone has been around for a while. I really prefer the older meds with less side effects than some of the new ones may have. Your lucky your physician was available personally on the phone for you. I call the 24 hour nurses that come with the OT and PT or with our insurance. Unfortunately, the OT and PT will prob be ending shortly. He likes working with them and the tips and exercises they have taught him has helped greatly.

mistydog1 profile image
mistydog1

Warfarin is a blood thinner with a "very narrow therapeutic range" This could very well be contributing to the symptoms you've described. Also as you know you must be very stringent about monitoring his diet while on warfarin as well. Things like green leafy vegetables spinach for instance can throw his warfarin level out of whack with more than eating a cup a week due to the Vitamin K . I would maybe ask his cardiologist about changing him off the warfarin there are better alternatives out there now.

Auddonz profile image
Auddonz in reply to mistydog1

He doesn't eat leafy green veggies, my friend told me about that and is monitored about every 2 weeks. Our diet is very simple and healthy, since I have issues that prevent me from eating anything fried or spicy. Along with most fruits. He has developed a cough and is now going to go to a lung specialist although the cat scan they did not show anything.

marion11005 profile image
marion11005 in reply to Auddonz

Hi, a side affect of amiodarone is a dry cough.

Auddonz profile image
Auddonz in reply to marion11005

Thank you for the info marion11005. As long as it won't hurt him.

Pete-1 profile image
Pete-1

From wikipedia Amiordarone best not taken with Warfarin. The wikipedia entry on Amiordarone is quite extensive so best if I give you a link en.wikipedia.org/wiki/Amiod...

Parkinsons disease is notoriously difficult to diagnose in the early stages as there are so many alternatives with similar symptoms and your husband as the added complications with heart problems which also seems to be complex enough on its own.

Regarding the PD and Levodopa - Carbidopa drugs i.e. Sinemet and Madopar etc. need to be taken in a large enough dose to result in better movement. I originally was given Levodopa-Carbidopa 62.5mg but found no benefit until my dose was double to 125mg then I was practically back to normal.

I would sugest that the heart problems are more important as people with Parkinson's go on for years and years without any significant effect on their longevity whereas having heart ailments mary present with more urgent need for treatment

Auddonz profile image
Auddonz in reply to Pete-1

Yes Pete-1, keep on telling him that keeping his heart issues under control is more important. His cardio is very much up on everything and very knowledgeable. If I ask him a question he always answers and explains it. But when I mentioned the amiordone being the cause of his movement issues he said definitely no. He also is the surgeon who changes his pacer/defib. He seems to be doing better, whether it is from the OT and PT or meds I don't know. He always asks me when I be back to normal and that breaks my heart. We have been married for 56 years and before that went to school together.

judam9 profile image
judam9 in reply to Pete-1

thanks pete, i found your answer very infomative, both with the heart and the PD.

Pete-1 profile image
Pete-1 in reply to judam9

Thank you - nice to have made something of a contribution.

Leilani23 profile image
Leilani23 in reply to Pete-1

Pete, from what I see, you always make excellent contributions. I'm always glad to see you posting here.

Jupeter profile image
Jupeter

I used to be on Warfarin until my blood count went haywire. Now on Apixaban (Dabigatran), much more reliable and doesn't need regular blood tests to control the INR level.

You don't say where you live but from your reference to costs I assume you are in the USA. I have no idea whether the cost of Apixaban is more or less than $300, it costs me nothing in the UK since I am 79.

I have also had AF for more than 25 years, coupled with low blood pressure. The AF is not a concern, it has reduced over the years so I am barely aware of it. But the low BP restricts my mobility and exacerbates the effects of the Stalevo, Sinemet and Ropinirole which I take for P, which was diagnosed about 14 years ago

The problem we all face is determining what, out of our cocktail of drugs, which are different for everyone, is causing what symptom. We can only relate our own experiences and hope others can gain some useful knowledge or guidance.

Auddonz profile image
Auddonz in reply to Jupeter

He has high blood pressure and you are right we do live the US. Appreciate your input. TY

wifeofparky profile image
wifeofparky

i just looked amiodarone up in my drug book. Fatigue is a common side effect. As well as tremor, low blood pressure, loss of coordination, muscle weakness and others. I would seriously discuss this with his cardiologist and discuss the pros and cons. Did you get a sheet from the pharmacist when you picked up the med? It should give you all this information. If not ask the pharmacist for a list of possible side effects and interactions with other drugs. My husband also had Afib and the only drug the cardiologist put him on besides warfarin was digoxin to maintain his heart rhythm. Anything else lowered his blood pressure and he had orthostatic hypotension.

wifeofparky profile image
wifeofparky in reply to wifeofparky

I would be careful where you research medical information. Wikepedia is not the best. Stick to sites like MayoClinic.com, Clevelandclinic.com, Johnshopkins.com. They are very reliable sources for medical information.

Auddonz profile image
Auddonz in reply to wifeofparky

Which is what I do

Pete-1 profile image
Pete-1 in reply to wifeofparky

Yes I have heard some complaints regarding wikipedia before. In fact I sem to remember reading something that I felt was a bit dubious about. At least with wikipeia there is the posiiblity of getting errors corrected. And ....... NO ADVERTS !!!

And it seems to be easy to get directly to the relevant page. Just have to be a bit careful with th content.

Auddonz profile image
Auddonz in reply to wifeofparky

Trying to discuss anything with his cardio is impossible. The first drug he put him on for the AFib did not work. The amiodarone is. I check all of the sheets that come with the any meds he is put on. He also as I said has a pacemaker/defib for other heart issues which he has had for years. His blood pressure is under control so far. I know the difficulty of moving issues is what bothers him the most. Getting up out of a chair getting in and out of bed and the car. TY for your input. It is much appreciated.

redread profile image
redread

I'm not sure why it is so difficult to determine exactly WHICH medicine (s) may contribute to weakness, fatigue and other movement issues but the fact that these symptoms are printed on many of those information sheets that accompany the meds may add to the confusion. Ironically, long term fatigue and some weakness that we attributed to heart meds in 2004-2010 was actually the beginnings of Parkinsonism in my 81 yr old husband. We still don't know what causes what! I will say, from observing my husband over time, the 25/100 carbo levadopa that he takes causes some sleepiness within an hour. Often, if he isn't doing something interesting he falls asleep after taking a dose. I keep urging him to fight the fatigue but it's very difficult. He also had PT and OT, but is not very faithful in following the recommended exercises. We take walks when the weather is temperate but he is not thrilled about walking because he gets tired and feels he might fall, so he now uses the wheeled walker. He cannot sustain a long walk either. I've adapted to the change and even put a transport chair that we bought from Amazon in the trunk of our car so we wouldn't be caught unprepared sometime. My husband has taken amiodarone for many years now but I don't remember thinking that that drug, specifically, had any particular effect on him. But, everyone is different.

Auddonz profile image
Auddonz

Hi Redread, Yes I realize everyone is different, it is just suddenness that it happened has thrown us for a loop. I keep on telling him to do the PT and OT as well and do see some improvement when he does them more than once a day. It breaks my heart to see him just sitting most of the day or sleeping. He uses a cane inside and out and I have a walker next to our bed for him to grab on to to help him get out of bed. The fatigue is constant along with the weakness. I wonder if it is the disease or the meds or both. Am going to shut down since I now have a respiratory infection along with a very upset stomach.

Auddonz profile image
Auddonz

By the way, his neurologist has said he should not drive. Is he correct? My husband said he no issues but I have been doing most of the driving.

cabbagecottage profile image
cabbagecottage

Keep an eye out if he is driving , I had never ever felt uncomfortable with Johns driving until he gradually started to hit the kerb more often his judgement on a bend . I then noticed he would ver to the centre of the road . he had his eyes tested and we bought a smaller car but gradually got worse until I would some have to hold my breat and close my eyes .

he wasn't at all aware of this otherwise he would have stopped driving himself . I was lucky that once O brought the subject up he listened and stopped driving immediately .

a big loss to both of m I don't drive and didn't feel up to start myself . I now do my big shopping on line .

have you noticed how it appears that most people who suffer Parkinsons also have heart problems AF.

in fact it was diagnoses at much the same time .

looking back he had had both for years l

my husband couldn't tolerate DIgoxin made thOarkinsons worse and caused serious hallucinations .

they wouldn't do the Ablationsaid it was far too dangerous for him !

a lot of the MEDS can cause a dry cough . I had to try. Few different ones before I found one that didn't give me the dry cough , it would make me heave .

you might find it helpful to get a grab rail or ask the Ot about one . It was a big help for my husband helps when getting out , turning over etc . take care when sitting on edge of bed that you gpsont slide off , my husband got stuck feet under the dressing table twice . A higher bed can also be difficult when getting into bed . I even placed. A step to help my husband he is quite short .

none of that matter now unfortunately he has progressed and is now hoisted in and out of bed or into his armchair or commode chair .

don't ever keep struggling , we do for far too long a little help goes a long and keeps you safer .

keep safe ypurself Auddonz .

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