Freaking Out.

shop deals on amazon
Shop deals on ebay
Advertise with us
Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
O

OrlandoTommy

Hello Everyone,

I recently (4 weeks ago) had a Aortic Valve Replacement, I also was born with a Bicuspid Valve, which I just found out about when i went to get my echo done that I had a damaged valve from a old infection. I have always been extremely healthy, extremely active and all of a sudden i was feeling a bit dizzy last month and I went to the doctor.
Within 3 days I had a heart cath and on the 4th I was getting OHS.

It was extremely scary for me. I smoked about a pack of cigs a day and went out with my friends on weekends like clockwork.

Since my surgery I have never touched cigs nor had a drink, nor will I ever again, i need a reason to quit both and im proud of myself for making it over a month now without either, and the desire seems to be gone, although im eating everything in site but im at a normal weight still (6'0"/210lbs).

Anyways I am back doing everything I normally did such as walking up stairs, going to work, riding my bike,etc...

The only thing that has happened a few times is double vision. Right after surgery they had me on Lowpressor and Coumadin. I got double vision like clockwork about a 5 days in a row aroound 1PM, it was last about 2-5 minutes, and if i covered a eye i could see fine.

They switched me to Toporol XL and the double vision went away, it has been gone for almost a month now and 2 days ago I was walking up stairs and it came back strong for about 5 minutes. It freaked me out. I called my doc and he said go to the ER.

I went to the ER, i was there for almost 3 days, they did bloodwork, cat scans of my brain, cat scans with Iodine, i saw 2 different Neurologists, 3 different doctors etc..

They all said it wasnt a clot or a TIA, they didnt exactly know what it was but they saw no signs of those things, which i guess is good.

Its just really hard to live your life when your constantly thinking "is the big one going to hit me soon and ill never be able to talk, walk or think right again". Its really bothering me bad, i just want to be normal again when i have the double vision it scares me to death.

This is all so new to me, i just want this bad dream to go away if you know what I mean.

My Coumadin levels are at about 2.4, i seem to have a hard time getting them higher, my doc put me on Amioderone to make the Coumidin work better but im holding at 2.4. Luckily I have a INR test machine at my house so i can test my levels often.

Anyways, thats my story, thanks for listening.

Tommy.
 
Hi Tommy! Welcome :)

I'm just up the road from you, nice to see another Florida person :)

Maybe your Toprol dose is a little too high. Do you have a blood pressure machine? I find if I get a little woozy it means my bp is down, I have to constantly take my bp to check the heart rate, which is the reason I take Toprol.

Sorry, I don't know anything about coumadin, others can help you with that!

Sounds like you've had quite an eventful month or so....stick around and you'll get all kinds of information here.
 
Your doctor put you on Amioderone to make your Coumadin work better? :confused: Amioderone is a very serious antiarrhythmic - some say it is a "last resort" drug for those whose arrhythmias are harder to control and/or dangerous. Amiodarone has some serious side effects. In my opinion - and others can weigh in, this was not a good move for your doctor to make. All your doctor needs to do to make your Coumadin work better is to raise your dose. The amount of Coumadin that is "safe" for you is the amount needed to keep you in range. I hope your doctor isn't pulling the "I've already got you on a big dose of Coumadin" line.

Sorry if I'm freaking you out even more, but if you are just on the drug to make your Coumadin work better you need to get a new doctor.

I'm not convinced your double-vision was TIAs. Possibly, but you just had major surgery. You "cold-turkied" cigs and alcohol as well. Plus the fact that they were all at the same time of day. It's possible it's TIA's, but at your stage of recovery, it could be anything. It could be allergies - my allergies give me double vision for brief moments from time to time.

I've not been on Amiodarone myself, I just know what I read here. I've never read of anyone being prescribed it in order to make their Coumadin work better. It will raise your INR, but using this serious of a drug to do just that is.... well, I'll just stop here.
 
Oh, and I meant to say WELCOME! I should have first thing, but the Amiodarone kind of freaked me out.:eek:

You will learn a lot here. You didn't have the advantage of doing research and study prior to your surgery since it sounded like it was somewhat of an emergency type of situation.

You will want to give this thread a read, if you haven't already. http://valvereplacement.com/forums/showthread.php?t=17116 Make sure you visit and bookmark the www.warfarinfo.com site. There is an incredible amount of myth, and old outdated info being used by the medical community and you'll want to become your own expert on Coumadin in order to recognize those who don't know how to deal with Coumadin.
 
Forgot to add...

Forgot to add...

The reason my surgeon put me on Amioderone was because 2 weeks after surgery my heart went into Atrial Fib (first time ever), it only lasted a week and I believe he saw my 7.5mg dose of coumadin wasnt working well enough nor fast enough so he wanted to make sure my blood thinned quickly due to the Atrial Fib.
Im no doctor so i dont know all the details, for the first 5 days i was taking 2 Amioderone in the AM and 2 in the evening.
Now im only taking 1 pill every morning, but he wants me on it for 3 months, he says he typically puts 2/3's of his patients on it after surgery that have Atrial Fib.
This is all so confusing to me... but I have no more Atrial Fib, hopefully thats gone for good.
Thank for the website lead, very good info.

Tommy
 
My surgery was just over 3 years ago, and I still get "double vision and/or dizziness".....think it is from my bp and heart rate getting too low. My cardio thought it might be vertigo. When I reduced my atenolol (beta blocker med) from 50mg to 25mg daily, these incidents seemed to be much less frequent. I just recently increased my daily dosage to 50mg and will monitor bp and heart rate to find out if there's a coorelation to these incidents.
 
The Big One?

The Big One?

Hi Tommy,

As others have stated here, there are a lot of issues which could be causing you the double vision and the episodes that make you dizzy. Despite how much these issues worry you, I doubt you're ready to have the big one yet. Make sure you're working with a cardio doc you have confidence in and remember there's nothing wrong with getting a second or third opinion from other cardio docs.

My AVR surgery was 4 1/2 weeks ago and they've determined that I'm a slow responder to coumadin. I've gone as high as 5.8 and as low as 1.8 since leaving the hospital. Even at 1.8 my surgeon felt I had a good margin of protection since the valve he implanted has a very low tendancy to throw clots. This said, both my cardio doc and the surgeon want me to average between 2.5 and 3.5. Both have advised me that it may take some time to get dosages adjusted to have me consistently within my zone. Making adjustments is simply a part of the game.

Your home monitoring machine is a real plus. I don't have one yet.

You'll get to where you want be. Just roll with the challenges rather than letting the challenges roll over you. Hang in there!

-Philip
 
Hi Tommy,
I had similar vision problems after my AVR. I would get double vision and sometimes just gray spots that would block my vision. I saw a neuro-opthamologist. He said that stuff sloughs off mechanical valves all the time and that no amount of coumadin was going to protect me from all of it. It doesn't happen very often any more (1-2 times a month, I had the surgery 9 months ago), but it is scary. It happens more often when my INR drops below 2.5. Luckily it only lasts 3-5 minutes and then I am fine. Someone else on this website suggested taking an aspirin when it happens. In fact, just recently my cardiologist suggested taking 1 baby aspirin a day since I'm still having these symptoms. I'm hoping I'll at least get the vision problems less often.
Welcome to the website! It's been very helpful for me when I gets some of these crazy scary symptoms. :)
 
I would hope to God that your not still on Amiodarone:

Straight from the manufacterers mouth:

INDICATIONS AND USAGE
Because of its life-threatening side effects and the substantial management difficulties associated
with its use (see “WARNINGS” below), Cordarone is indicated only for the treatment of the
following documented, life-threatening recurrent ventricular arrhythmias .when these have not
responded to documented adequate doses of other available antiarrhythmics or when alternativeagents could not be tolerated.
1. Recurrent ventricular fibrillation.
2. Recurrent hemodynamically unstable ventricular tachycardia

http://www.wyeth.com/content/showlabeling.asp?id=93

There isn't any reason why your INR shouldn't be in range and stable. Sounds like lots of mismanagement going on in your care.
 
Hi Tommy, Welcome to the vr group.
I too have had the vision thing and still have it every so often. They too did a ct scan and found nothing I even went and had a eye exam. Got better sunglasses which seem to help some. Every so often I get the vision thing, but I also had it before surgery to. When it happens I just let it pass and go on. Thought I have been through so much already don't need to worry about now if everything checks out ok. Don't know if I've help or made things worse but had to share with you about whats going on with me. Hopefully I helped. Crystal
 
Tommy, I hope we aren't freaking you out more. As you can see, Amiodarone is a very serious drug. If it were me, I would ask your doctor to wean you off of it and see what happens. But also keep in mind that your INR will probably drop too. Home testing is the best and I'm glad they got you started with it right away.

It sounds like you are doing well 4 weeks out. Keep up the good work.

Most of all, I would just assure you that understand that the amount of Coumadin you need to keep you in range is not going to affect you adversely. Some people take only 2 or 3 a day, we've had a member or two as high as 25 a day. I take 11/day right now (just raised it due to increased activity).

Best wishes.
 
Welcome Tommy.

I, too, have to chime in about the Amiodarone. I am in constant a-fib and my cardio will not touch the stuff for a-fib. He would rather do an ablation for chronic a-fib than take the chances with the Amiodarone. Please talk to your cardio about weaning off.

I have the double-vision thing about once a month or so. Feels like I get a muscle spasm behind my eye and then the vision goes double. Lasts from a few seconds to a few minutes. Have had all the tests but nothing showed up. The doctor thinks it might be migraine related because I have other strange things with my migraines like numbness.

Hope things stabilize quickly but they will eventually so try to be patient. You are still very early on in your recovery.

Congrats on all you have accomplished.
 
Thanks!

Thanks!

Just wanted to say thanks to everyone for all the good info and suggestions, def makes me feel much better.

My surgeon is from the Cleveland Clinic and is supposed to be one of the most experienced in the nation, he does between 200-250 valve replacements per year. So im a little hesitant to question him, he put me on the Ami when i went into Atrial Fib and he wants me to stay on it for another 2 months, 200mg per day one tablet every morning.

I go to see my cardiologist May 7th and im going to let him know about the drug as well and see what he says.

My doctors at the hospital all seemed to agree with me being on it, so im a little confused because I believe everyone here since they have dealt with it happening to them.

Ill keep you all posted, i did ask my surgeon "what if i stopped the ami right now" and he said i would be fine, but i think he has me on it for the Coumadin.. i dunno, so confusing...uhggg.

Thanks and ill update soon,
Tommy
 
Tommy:
What does, "He has me on it for the Coumadin mean?" As far as I know, there is no relationship between the effects of Coumadin and the use of Aniodarone. My next-door neighbor is nurse practioner/physician's assistant in one of the large Cardiology practices here. She works with the Electrophysiologist Cardio who is responsible for the A-fib patients. When I just asked her about Coumadin and Aniodarone, she said she was baffled. She said it does not have anything to do with anticoagulation. She also said, as others have said here, that it is much too problematic and powerful to be used for simple a-fib after surgery and that you should be closely monitored.

I developed a-fib last year for reasons unknown to me. When I asked my doctor for Aniodarone, he too said it was the drug of last resort and put me on Toprol.

Kind Regards,
Blanche
 
Amiodarone makes the INR go way up!! I had A-Fib in August 2005, was cardioverted and given Amiodarone (among other things) and Coumadin to keep me stable until I had my surgery.
 
Adrienne,
thank you so much for the clarification. You are right, a side effect of amiodarone would be an increase in INR. If this is why it is being prescribed, I have to agree with Karlynn, I would run, not walk, to a different doctor. To risk the side effects of a powerful drug to increase INR is, IMHO, not a wise choice. And, to make things even worse, what the hades is wrong with an INR of 2.4? The range for aortic valves in 2.0 to 3.0. The range for mitral valves in 2.5 to 3.5. Allowing for variance, 2.4 is just fine. If you want a higher INR that's just fine...increase the does by 10% per week.

You know, this is not witchcraft. It is just common sense.

Blanche
 
Tommy,
Like you, I'm new to this board. After both my open heart surgeries last year my surgeon put me Amioderone and Coumadin. He said the Coumadin was to prevent blood clots from forming in the hearts atrium during episodes of a-fib and the Amioderone is a powerful antiarrhythmic used to regulate the hearts rhythm post op. Due to recurring bouts of a-fib I was put on Coumadin for life to lessen the possibility of strokes. After my second open heart surgery last December, he again prescribed the Amioderone for thirty days post op to control arrhythmia. I requested to be taken off of it shortly after leaving the hospital due to a number of bearable but undesirable side effects. Both my surgeon and cardio advised me to stay on it for the thirty days as the benefits would out weigh the short term side effects I was experiencing. I stayed with it and they were right, the side effects have disappeared. Since I was already on Coumadin for life it made choosing a St. Jude mechanical valve to replace my worn out aortic valve a slam dunk. It would probably be a good idea to follow your doctor's recommendations.

Wishing you a speedy and complete recovery.
Jim
 
Ami

Ami

Thanks Jim and everyone else, everything everyone says makes sense.
Keep in mind my surgeon prescibed these meds, im going to see my cardiologist for the first time on May 7th so I will see what he thinks as well.

My levels were 2.0 this AM which kind of freaked me out since they were 2.4 last night, i have been taking the 5mg of Coumadin every night like clockwork, i just dont see how the levels go down so fast, i havent been eating greens either..

They had me on 7.5mg last week and my levels went up to 5.0 which freaked me out a bit then the doc had me stop taking it for 2 days and my levels dropped like lighting down to 2.4.

The Ami doesnt seem to bother me at all, i take that by itself with my Prilosec in the AM but i would like to get off of the Ami, one less pill to worry about if you know what I mean..

Tommy
 
I was reading through your posts and just have to jump in and agree that there are many meds for afib rather than amnio. Also don't ever feel you cannot question a doctor due to the place he works or the number of surgeries he does. You are still paying his wage. I had afib 24/7 and it ruled my life for years and years and after exhausting many meds we tried the amnio but after a week I said no longer. Afib seems to happen in many patients after surgery especially in the two to five week recouperation time. You may feel better but it takes a while longer for the heart to get over the surgery. Take a deep breath and make sure you are letting yourself heal and come to terms with what has happened. It is an emotional ride.
Kathleen
 
I don't care who your surgeon is, if Amiodarone is used as a first resort, you have every right in the world to question it! That stuff will screw other body systems up and is exactly why the manufacterer states, to be used only when all other methods have been tried and failed.
 
You must log in or register to reply here.

Latest posts

Back
Top