Getting off Meds

Question

Is there anyone who has stopped heart medications, under the cardiologist's supervision? I realize this sounds like a reckless post, but over time, in my case two years, I think I don't need medications anymore. Further, flecainide and cartia really diminish the quality of my day with symptoms of extreme fatigue.
This morning I faxed my cardiologist and asked her if I could go off meds for a month and see what happens. 
Just wondering if anyone has gone off and what the circumstances were. Frankly, if she says yes, I would be just as much scared  as if she said no.

FJOHNONE · Answer

Just received word from the cardiologist that it is OK to keep off flecainide until my next appointment. Well, I got what I wished for and you know what they say about getting what you wish for.
If I get any palpitations I am to call her and maybe go on cumadin. 
This might be my last chance to see about the side effects of flecainide. But you know, its worth the risk. I came off alcohol and then got by the anxiety, this is just another hurdle.
Wish me luck and thank you everybody for your support.

FJOHNONE · Answer

Update...

Off of Flecainide for 17 days. Have not heard from my cardiologist. Feeling stronger and capacity for exercise has increased. More stamina. Am continuing with Cartia. 
Taking one day at a time and not getting ahead of myself. 
I forgot to mention that I stopped alcohol almost two years ago and also am doing an excellent job of managing anxiety. I only mention this to tell you that my history of overcoming gives me lots of confidence.
You know I always wondered whey I didn't feel better as I expected stopping alcohol and and managing anxiety. Could it have been that I have been taking Rhythmol and more recently Flecainide about the same time?  Duh?
I trust myself. I am guided by this trust and faith in myself.

Fjohnone

misha_AL · Answer

I did quit taking the verapamil 120 1x daily.  I was having constant palpations and couldn't handle the extreme fatigue, depression and definite weight gain (probably side effect of sleeping all the time).  I did start taking 600mg of CoQ10, continued the 81 mg aspirin daily and also taking my mega fish oil supplements.  Seemed to really work for me.  The bloodpressure is not constantly great but it wasn't on Verapamil either.

Good luck and keep the doctor in loop.  If you use the CoQ10, make sure you get the doctor to check your liver enzymes.  Supposedly rare side effect is it can elevate the liver enzymes. Get with your doctor and see if he/she can give you the prescribed activated form of ubiquinone (much cheaper for you usually) - you can check with the pharmacy of your choice to see if they have it in stock and verify with your medical coverage to see if they cover it.

Google ubiquinone, CoQ10... here is some general information to start from website: 
http://www.ahealthyme.com/GetHerbContent.do?primerid=21682&name=Coenzyme%20Q10%20(CoQ10)


"In general, CoQ 10 appears to be extremely safe. No significant side effects have been found, even in studies that lasted a year. 44,79 However, people with severe heart disease should not take CoQ 10 (or any other supplement) except under a doctor's supervision. 

As noted above, two studies suggest that CoQ 10 might reduce blood sugar levels in people with diabetes. 45 While this could potentially be helpful for treatment of diabetes, it might present a risk as well; people with diabetes who are using CoQ 10 might inadvertently push their blood sugar levels dangerously low. However, another trial in people with diabetes found no effect on blood sugar control. 46,58 The bottom line: If you have diabetes, make sure to track your blood sugar closely if you start taking CoQ 10 (or, indeed, any herb or supplement). 

Interactions You Should Know About
You may need more CoQ 10 if you are taking: 
Cholesterol-lowering drugs in the statin family 
Red yeast rice
Beta-blockers (specifically propranololmetoprolol , and alprenolol ) 
Antipsychotic drugs in the phenothiazine family
Tricyclic antidepressants
Methyldopa
Hydrochlorothiazide
Clonidine
Hydralazine
Oral diabetes drugs (especially glyburide, phenformin, and tolazamide)
You should not take CoQ 10 except on a physician's advice if you are taking: 
Coumadin (warfarin)
CoQ 10 might improve general sense of well-being, but worsen peripheral neuropathy symptoms if you are taking: 
Reverse-transcriptase inhibitors (for HIV infection) "

sick and tired 47 · Answer

Perhaps just changing meds would help alleviate some of the side effects. I tried lots of meds.... was SO tired, had other bad side effects or they  just did not work. I am now on a low dose of atenolol and it is working for me. Still have some days where the  heart palps, chest pain is there... but its tolerable. 
  As my dr. said, you are the patient. You need to find the right med for your body/heart... and we will try as many as we need to find something that works  for you!!!
( love that dr).
Good luck all!!

FJOHNONE · Answer

Good stuff. I like the way you are comparing the past with the persent and finding progress. I guess it would be your choice to just state the stuff that you are still dealing with, but you chose the improvement. Can't tell you how important this. My dad used to say, "If you want to whip a dog you can always find a stick." 
Something tells me that you are not through. You have great resolve that will end up not only in things being tolerable, but thriveable.
Blessings,
Fjohn

FJOHNONE · Answer

There is plenty, I repeat plenty of hope. You will find your own formula and you will not only flunction but you will thrive.
The first step is the biggest because it will turn things around. So you need to stop the negative momentum. My way will be different from your way because you will create your own formula.
Is there a place you know of, maybe an activity, maybe a thought, maybe a person, where you feel that you get a little break from your symptoms/side effects? For example, no matter how bad I felt, and it was awful, I exercised at a local club. Getting on my sneakers and start dressing was a major hurdle. When I got to the club, I still felt awful, while exercising, awful, stretching after, awful. Getting in the car with the thought of "Gee, I did it" started the slight relief. It was only slight but it was noticeable. 
My point was if I did nothing, the momentum would carry me into bad, really bad. I had to create my "something" and exercise was it. I never missed a day no matter what. It was a contract I made with myself, my "something."
Thank you for reading. I care about you and take the first step of thinking about "something" and don't do it yet. Just think about it. 
Blessings,

banglamom · Answer

I take the 100mg flec 2x/day and beta blockers and cartia... and the other stuff too.  It takes all of it to control the rhythms and unfortunately my pressure starts a bit low too.  I too feel halted in my tracks by the side effects of the meds.   I tried last week and sometimes have given it a whirl... my rhythms were going decent and I was tired of low bp... so I went really light on the meds... but just like with past attempts, today the rhythms completely went sideways and ran away.  If it goes unmedicated, it gets less and less organized and faster and faster.  So, I take the meds  (defeated) and it takes days to catch up to the rhythms- days of fluttering in my chest and throat and rates from 130- 190 if I just do nothing.  I knew it would probably come to this because it has for years.  I will no doubt do it again though when I think ANYTHING else would be better than trying to function with a bp of 80/40.  I'm still looking for the magic formula myself as well.  Let me know if you find it.

FJOHNONE · Answer

Yes. I get palpitations in the throat area too. Hardly ever in the chest. Do you feel the palps while your\ are up and around or just when you are reclining or sitting down? Your cardiologist needs to know about your hard week and how that manifests for you before he/she evaluates that you don't need a beta blocker. What happens to your anxiety level when you palp? Kind of what comes first, the chicken or the egg. What kind of thoughts do you have and do they contribute to your anxiety?

I still think meds are a last resort.

oceanminded · Answer

I actually wanted to take a possible beta blocker but my cardiologist thought I didn't need one. Maybe because my BP is on the low side. 110/70. This week is a bad palp week. I have PAC's all day all week. They seem to stop late at night and then return around the late morning. The worst part now is I'm really feeling them in my throat. It feels like someone is constantly putting a little pressure right under my adam's apple. Is this a normal symptom for PAC's?

FJOHNONE · Answer

You are so much like me. I too take Lexapro. I do take Flecainide and Cartia for two years now. Do you get any pressure from your cardiologist to take heart meds? I think you are lucky not to have any side effects which are much worse than any symptoms? How long do your irregular heartbeats last? I like your attitude of live and let live. Good for you.

oceanminded · Answer

I'm not on any heart meds myself for my PVC's and PAC's but I do take  Lexapro, fish oil, magnesium/potasium/calcium supplement, and valium and resterol as needed. The thing I've realized is my palps have a mind of their own. I don't think any of these meds have any negative or positive affect on my irregular heartbeats so I sometimes wonder why I take my meds at all since my palps will happen when they want to :)

ksig · Answer

Yes, I was recently taken off all arrhythmia meds only after having an AVJ ablation with pacemaker implant.  I was really looking forward to the day I didn't have to take any more meds.  I was on Tikosyn, Diltiazen XR and Atenolol and also on coumadin.  (Still on coumadin)  I, too, was tired all the time.  I have been off the meds for 14 days now.  I feel great BUT the AFib is still there.  I feel it every day but it is not racing or rocking at breakneck speed due to the pacer.  I can take this activity level.  It is far more tolerable than the days with the meds and a thrashing heart.

Goo luck to you.
KSIG

SooZeeATL · Answer

I certainly wouldn't say proud, I'm just trying to live a normal life. My primary goal was to function normally and not have break-through afib.

You know, my EP started me on 100mg of Flecainide BID. I really could not function on that dose and I suggested the 50mg TID. He was fine with that dose and it really worked great for me for almost 2 years. Spreading the smaller dose across the day didn't give me all the drugged side effects, maintained a consistent level of the drug in my blood stream, and it was enough to control my afib. Could you request a change similar to this to maybe regain your quality of life?

I since failed Flecainide and had a PVI ablation 3 weeks ago. I'm going for the permanent cure! My mom and her brother are in permanent afib and my brother was just diagnosed. I hope with this surgery that I can beat the family odds.

Best of luck to you!

FJOHNONE · Answer

You must be so proud of yourself for trying to cutback the Flecainide. Most of us simply take side effects as part of the deal and you tried. Wow! The thing is now you don't have to wonder and you got peace of mind.

I too have that drugged feeling while on Rhythmol and recently Flecainide. My daily exercise has been limited as I have so many side effects from this drug. In the medical world this is known as paying the price for maintaining sinus rhythm.

Well, I am not going peaceful into the night. Doctors are not on the same page as me. They want the heart to be in rhthym and I want a quality day. Go figure.

Thanks for serving as my inspiration.

SooZeeATL · Answer

Are you on Flecainide for afib? Have you had any break-through afib while on your current dose? What is your current dose? Have you considered backing off your current dose to a lesser dose to see how you do rather than going off it all together?

I was feeling very drugged on my 50 mg TID of Flecainide and hadn't had afib in months. So I asked my EP if I could back off to 50 mg BID. He had no problem with it and I felt great for about a week and then I started getting break-through afib. I had to up the dose again. 

This is just a suggestion but you could try to back off the drugs to see if maybe you don't need as much as you currently take or maybe, you don't need it at all. But approach it more slowly. Of course, all with your EPs approval!