Stopping Carvedilol (Coreg): When will the effects wear off?
Hi everyone,
I am glad to be a part of this community. Please foregive the long post. I was wondering if anyone has had a hard time while being on and going off Carvedilol (Coreg).
I am an active 45 year old mom of a young child. I have always tried to eat healthily and keep in shape (I do yoga, pilates and, run about 5k 2x per week). My BP has always been pretty good, but since my 40´s it has gone up a bit (heredity factors play a role). My BP and heart rate also "spike" when I get stressed or anxious, but for the most part are pretty level during normal times. I do have anxious moments, but I would not say anxiety has been a major life problem. At my last check (Feb 2016), and after wearing a 24 hour BP monitor, my cardiologist suggested I start Carvedilol 6.25 1x per day (quite a low dose) for the spikes and to keep the heart from getting too excited. I agreed that maybe it was a good idea and started over two months ago. Other than stimulating rapid bowel movements, I did not notice any side effects at first. I would say about three to four weeks into taking the Carvedilol, I began not sleeping well. I also noticed my heart pounding, like a bass drum, slowly and steadily, at times. Then the heart pounding began to wake me up at night (it turns out my HR was down in the high 40s at night). Some nights I even felt my chest muscles vibrate, as if a phone on silence mode was on top of my chest. I started to notice this more and more and then I would have a few normal nights, so I figured I would just talk about this at my next cardio check (booked out in June). I also noticed I was getting more and more anxious. I wasn't too sure why little things were beginning to bother me. I thought it was hormones, PMS, whatever, and started looking for someone like a therapist to talk to.
The previous week was bad. I woke up from a few nightmares and I started to panic in bed, just woken up from sleep. I had three nights of waking up to panic attacks and body shakes. The experiences made me very nervous. At this point I started looking into the side effects of Carvedilol and I was seeing not only chest pounding, but in rare cases reported effects of nightmares, visual disturbances, tremors, anxiety. I also know one does not simply stop a beta blocker, so we talked about tapering down. I tapered down for four days, and then I got in to see another cardiologist on Monday and he said just stop immediately. The effects are rare, but they have been noted. Going off this medication has been frightening. I feel weak and shaky all the time, and I get sporadic periods of pounding and muscle tremors in my legs, anxiety and fuzzy vision. I frequently get so cold I begin to shake. Yesterday I went back to the clinic for an EKG (normal) and some blood tests (including thyroid) and everything was normal. I am just assuming this is my body reacting and readapting itself after being on beta blockers. It has only been five days, but I am wondering if anyone out there has had similar experiences. How long did it take you to feel normal again? I ran a 5k just two weekends ago and yesterday I could hardly take a walk. Thanks for listening.
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Dear hopeful the story that you are about to hear is one of Terror horror and submission.
It may be easier for me to just dictate a small part of this to you through my iPhone compared to typing it with my big fat fingers on a tiny little keyboard.
Otherwise I'm not quite sure how to get back onto the I guess blog or discussion.
The essence of what I'm looking for is that while on Coreg my lower body is retaining fluid ie swelling swollen and I need to get rid of this water weight.
I came off of Keurig cold turkey when immediately on to metoprolol my pre-surgical blogger and the doctors use LASIK in a two-day. I voided by way of catheter approximately 8 liters so far.
I have been released from the rehab facility without any incidents of pneumonia SARS MRSA or any other funky hospitalization disease so I feel ahead of the game but yet still have swelling in my lower extremities.
I have some anxiety I'm a little panicky and find a difficult to lay on my back with my feet up after having just a 6-way bypass and Maze ablation two hope my atrial fibrillation..Please excuse the autocorrect here on my cell phone I can only actually see two or three lines of text and I find it important to get this message back to you
@cabgx6maze517 Thanks for providing some more information regarding the type of reaction you had to the medicine and never worry about spelling or punctuation at Mayo Connect, we just appreciate your willingness to share your story with us. You say that you have "some anxiety I'm a little panicky." That is certainly understandable. I'm so sorry to hear about this reaction. I've never heard a reaction quite like this, however, we have many members in Mayo Connect who have discussed problems with this drug and I hope that someone will respond soon. I'm going to invite some Members into this conversation who have discussed problems with this med including @barnes123 @zany @teatime and volunteer mentor, @predictable. Perhaps they will share with you as well. Teresa
thank you for responding
3 weeks ago today I had A6 graft bypass and while in the Intensive Care Unit I had a dramatic shift in blood pressure and heart rate that the floor cardiologist addressed by initiating some dosage of Carvedilol
I immediately began complaining of a list of symptoms that I have since located as the textbook undesirable side effects of coreg the most extreme affect being that my blood pressure to the best of my recall was nearly 200 over 100 to 78 / 36 , as a matter of record.
Whatever physician made the decision simply said next time got his dosage in half.
I immediately felt an intense coldness and tingling in my fingers and toes and I became short of breath.
During the next hours my blood sugar Rose from never being outside the normal range of 100 plus or minus to 185 and as high as 285 whatever units they use
Not to treat the matter lightly but here I am nearly incapacitated half-a-dozen drips and oxygen and now I'm being told that I'm diabetic and I'm being administered multiple units of insulin which had never occurred to me before in my life I'm average weight average height prior to my bypass surgery I could push a lawn mower and cut an acre of grass ride my bicycle and or go country western line dancing.
During the next two weeks where I was continually fed this Coreg twice-daily I constantly ask why have I been taken off of metoprolol which function properly for five years.
And the doctor explained that the benefits outweigh the risk as my legs and feet slowly began swelling even to the point where I couldn't breathe enough to Force the spirometer Beyond a title volume of 500 and a vital capacity of 750 ml because I couldn't force my diaphragm to push against the water that was accumulating even up to my gut belly button
Just last Sunday in rehab after moving from ICU to CCU and then off campus I found a cardiologist willing to take me off of Coreg put me back on metoprolol and use Lasix to dispel some of the accumulated fluid
In the first two hours of the first day of Lasix I put out more than two liters and then additional leader and that first day on the second day of Lasix the same and my upper body shrunk a lot while my lower body shrunk a little
All in all within 3 days I lost 17 pounds by a scale
Since then my lower body has begun to swell again but I find it difficult to lay on my back because of the panic attacks and anxiety I have of trying to breathe deeply and having the breath shortness cuz by my diaphragm against my bloated belly
When I finally had a clear moment and looked at the side effects even the blurred vision cause me to have enough alarm to request getting off of Carvedilol and onto anything else but now here I am I still have anxiety and swollen lower extremities
Carvedilol didn't work very well for me and I am still suffering the consequences of trolls slowly eating my legs
I had to leave that in the autocorrect is just perfect
So I currently have appointments with primary care cardiologist and otherwise but until that I have tried elevating my legs I've tried walking knowing that my legs are my sick and heart for pumping the fluids and I need to get out of the room here and on with my day I will look forward to hearing from you
Hi @cabgx6maze517. Interesting that your moniker reflects your recent surgery! I know that some people taking Carvedilol have symptoms of discomfort, but not me. I'm taking 25mg of Carvedilol (Coreg) twice a day for its double purpose -- relieving a-fib on my pulse and reducing my blood pressure. No problems for me from this medication. Perhaps that's related to the fact that I haven't had heart surgery of any kind (including cardioversion, ablation, or Maze procedure). Can I assume that your a-fib is under control, given the MAZE procedure you experienced? What keeps you awake? Was your blood pressure high before your surgery, or is it now? We would benefit form more information about your "horrific experience" with Coreg "during" your surgery, if you can share that.
As Teresa wondered a few hours ago, your doctor's response to your medication troubles is pivotal to relieving your symptoms. It also would be very helpful to those of us who share your symptoms. Martin
@cabgx6maze517, it's certainly understandable that you call your heart surgery and its immediate aftermath a horrible experience. I understand that you are no longer on Carvedilol (Coreg) but have returned to your earlier beta-blocker Metoprolol. Bear in mind that getting off Coreg requires some time and phasing-out, so for a few days you may have some of the Coreg symptoms. Your situation seems exceptionally complicated and unrelieved so far and beyond the problems that a medication might cause. That may call for diagnosis and treatment by an advanced medical team with a lot of experience in dealing with complex and shifting symptoms.
Is it possible for you to take your case to Mayo Clinic in Rochester (MN), Jacksonville (FL), or Phoenix (AZ)? Or is there a state university comprehensive medical clinic available to you (e.g. Massachusetts General, Cleveland Clinic, etc.)? Your edema (excess fluid in your tissues) has me thinking about a kidney problem that might need a nephrologist's attention. The complexity of your symptoms might raise questions about your thyroid. The diabetes symptoms raise the possibility of a pancreas problem. I'm not a medical professional, so none of this can be seen as definite problems or paths to effective therapies. But the information you set down an hour ago raises a lot of questions that you will be glad to have answered. The best doctors available would answer them most effectively. Martin
Thank you for responding
I am incredibly confused because when I was introduced to Carvedilol I was in the ICU and was not aware that I could turn down the medications and it was only explain to me approximately 2 weeks later that I have that option and at that point my lower extremities were so swollen that immediately shifting to Lasix appeared to be a good idea but I am still suffering from bloating from the diaphragm down it does help for me to walk and I happen to be in Las Vegas where outside is not an option so I spend a couple hours at Walmart pushing a cart with my wife because it's cooler there and I have now insomnia because I'm sort of afraid to lay down on I rarely can't put my feet up
To get out of the rehab facility without any additional complications including Marissa or or pneumonia I took the option of removing from the facility
, I'm currently on the campus of a VA medical facility as I am a veteran and within walking distance of emergency room compared to having to be taken by ambulance
Every time I eat I go through incredible swings in lightheadedness and dizziness and today my regular primary care provider within the VA isn't working due to the recent holiday.
While in the rehab facility I regularly had blood work done but since leaving the facility do not now have access to the results specifically the most blood work in the CBC and A1c
So I have an incredible paper trail of fall tests that were performed recently but today as I visit my primary care provider they have the day off
It was my insomnia that brought me to a website looking for methods of getting off of Carvedilol that led me to the side with the Mayo Clinic so how does one get an appointment with the Mayo Clinic if I'm in Las Vegas Nevada
@predictable Thanks for your suggestions to @cabgx6maze517. A second opinion from another medical institution sounds like a great idea. This is a complex situation. Teresa
@cabgx6maze517, from Las Vegas you might prefer an appointment in Phoenix, but Rochester, Minn. is accessible if you can travel there. If you would like to seek help from Mayo Clinic, please call one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63. If you call them you'll have the opportunity for a helpful phone conversation with a medical professional, or you may wish to start off with an online application (the form is available in the right column of that page on the Mayo Clinic web site). Either way, ask the Mayo staff for help with travel plans from your house to your preferred Mayo Clinic.
I'm surprised that you have linked Carvedilol to symptoms of severe edema. I haven't seen that listed as a side effect of the medication. Sometimes it causes problems from an initial dose that is too high (more than 6.25mg twice a day to start) or when it is not taken with a meal. Over time, the dose sometimes is raised (mine is now 25mg twice a day). DIscussion of its side effects is available on this web site: http://www.rxlist.com/coreg-side-effects-drug-center.htm.
Before I went on Carvedilol, I was on Lasix for a few weeks to deal with swollen ankles and calves, but it forced me to slough off so much potassium that I needed emergency room treatment for severe hypokalemia. Have your lab tests included your potassium level?
Martin
Well, I have had another nearly sleepless night, of possibly 3 hours in one hour increments. But I am not really sure cause I was asleep. But I was aware of being awake more than unaware of being asleep. And I took 1 Lorazepam at 6:45pm, 2nd at 11pm and felt sleepy.
I cannot lay flat on the bed because my breathing becomes laboring immediate and anxiety sets in to near panic, so I sit up to sleep. Also I am unable to elevate my legs because I would need to lay down to do that. I am in Las Vegas Nv and it is so hot I go to super Walmart and walk in the coolness for exercise, the music is OK and I take Oxycod/Acatamin 5~325 a @ 4 hrs as needed to control some pain in my left / graft harvest leg and ankle. My legs are a large blood pump but I am not maximizing the effect, as my left leg is not getting smaller, even though I wear the compression tube from the HealthSouth rehab Hospital. in essence; walking for 2 hours and more does make me feel better, my edema did not decrease or improve in the two days since release. Today will be my first opportunity to visit my VA primary care provider and I will do that early, like 9;30 am for referral to other clinics in the Vegas VA system. I do already have in my patients copy of lab reports fro the rehab center to carry into this appointment. I have a scheduled telephone appointment with TRIwest insurance at shortly after 8am for some type of conversation. And then I will be off to get a patients copy of the disc and reports to forward to VA Arrhythmia Center Palo Alto as well as transfer files to the Vegas VA for my team to access the files.
I was prepared to go to the VA ER if necessary last night but did not feel any aspect of my current condition required that. I have already scheduled a follow~up apt with the CVsurg teams physicians assistant for Monday, but that is still a long time from now, too long...
Thanks Martin and others, TLC Tom
@cabgx6maze517 Thank you for the update. I hope that your appointment will provide you with some assistance to this very perplexing set of problems. Teresa