When a Stroke Is a Warning Sign

Managing a double diagnosis of stroke and atrial fibrillation

In talking with stroke survivors over the years, I’ve observed that nobody is blasé about a stroke diagnosis. But how does someone respond when the stroke is also a symptom of another diagnosis? Sometimes this is the case with atrial fibrillation (AFib). AFib causes an erratic heart rate, which may allow blood to pool and clot in the chambers of the heart. It’s possible for that clot, called an embolus, to be pumped out of the heart and into the brain, causing a stroke.

It is not unusual for survivors of these strokes not to know they have AFib because it often has no apparent symptoms. “That’s one of the reasons that AFib can lead to a stroke and that the first presentation or awareness of AFib can be at the time of a diagnosis of a stroke,” said cardiologist Patrick Ellinor from Massachusetts General Hospital and Harvard Medical School. “Many patients who have a stroke and are found to have AFib may have had it for a while, be it days or weeks or months, and they weren’t aware of it. If people were aware of it, they would go to the doctor, get on a blood thinner, and potentially avoid the stroke. That’s what makes AFib so dangerous.”

As most stroke families know, the effects stroke causes are primarily determined by size and location of the brain injury. “The most common feature of strokes that arise from AFib is the extent of the injury,” Ellinor said. “Strokes arising from AFib tend to be larger, more serious and have more devastating consequences than strokes that are not due to AFib. That means less likelihood of recovery, greater limitations in mobility, and even a greater risk of dying.”

With respect to the AFib itself, Ellinor identified three broad categories for treatment:

  1. prevent blood clots
  2. control the heart rate
  3. control the heart rhythm

Preventing Clots

Dr. Patrick Ellinor

Not using blood thinners after an AFib diagnosis is rolling the dice. Ellinor is emphatic about their use, but adds that they are not safe if there was a bleeding component to the stroke. “But for the majority of patients who have had a stroke, the treatment of the AFib that would be critical would be getting on a blood thinner to prevent or reduce the likelihood of a future stroke.”

For those concerned about taking blood thinners, Ellinor wants to ease their minds: “Anticoagulants offer dramatic protection from the risk of a stroke for most patients. That’s one of the most important things that we tell our patients with AFib even before they’ve had a stroke: ‘The single most helpful thing that we can do for you is get you on a blood thinner.’”

Controlling Heart Rate

“If the heart rate is too fast, we give medicines to slow it down. If the heart rate is too slow, a patient may need a pacemaker that will bring up the heart rate,” he said. “Sometimes, people have both and we use both medicines and a pacemaker to get to a happy middle ground.”

Controlling Rhythm

What is done to bring the heart back to a normal rhythm? “That ends up being a very personalized approach,” Ellinor said. “If someone has no symptoms at all from the AFib and their heart rate’s well controlled, they may decide to go on medicines to thin the blood and slow the heart rate as the primary treatment. On the other hand, if people have a lot of symptoms like racing heartbeat, fatigue or windedness, then they may be better off using either medicines or procedures designed to get them back into a regular rhythm such as cardioversion or ablation.

Ablation is a procedure that destroys a small area of heart tissue that’s causing the problematic beats. Ellinor is cautious about using it with stroke survivors. “That wouldn’t be prudent to do that early on after a stroke,” he said. “First thing people should do is recover from the stroke, then give it a few months for things to settle down before you consider that.”

In addition to increasing stroke risk, AFib also increases the risk of heart failure, a chronic condition where the heart is unable to pump blood. “When someone develops AFib, the most likely major condition for them to develop is actually heart failure and not a stroke,” he said. “I think stroke is the most feared consequence, but heart failure is actually more common. There is also an increased risk of dementia if you have AFib, and an increased risk of death in people with AFib, presumably because they’ve had heart failure or stroke.”

Exercise can be a concern for survivors with AFib. “The most important consideration is that the heart rate be well controlled both at rest and with exertion,” Ellinor said. “Sometimes what will happen is that the heart rate will go up very quickly when they start exercising and then level off. It’s important to make sure that the heart rate remains under reasonable control, with medications if necessary.”

For Family Caregivers

Ellinor offered some counsel for caregivers of AFib patients: “You want to reduce the risk of a stroke, so the blood thinner is a crucial part of their loved one’s treatment. I am aware that there are concerns about blood thinners because of the risk of falling, or people have had complications.” Ellinor emphasizes that — particularly after a stroke — the benefits of taking a blood thinner are dramatically greater than any potential risks.”

Emotional and Coping Challenges after Diagnosis

Getting a stroke and AFib diagnosis is kind of a double whammy, especially if there has been loss of function. Mayo Clinic researcher Pamela McCabe, Ph.D., R.N., has many years of observing families in this situation. “The first reaction is usually along the lines of ‘How did this happen?’ — particularly if there were no problems before, and no risk factors,” she said. “It can be very disturbing to patients when there doesn’t seem to be a good reason. Now, if a person has other risk factors like high blood pressure, maybe they’ve been a smoker, or are overweight, sometimes those kinds of things can be easier to explain. Another reaction I have observed is that people will have symptoms of AFib but not realize that’s what is happening, especially since the public really doesn’t know much about it. Patients second guess themselves, ‘Well, why didn’t I go in for this? I should have done … I shouldn’t have put this off. I should have known.’ Really, that’s not the case. If you are not aware of the symptoms, you wouldn’t have known. I think second guessing makes it more difficult to accept the diagnosis.”

When stroke and AFib diagnoses coincide, it can ratchet up fear and anxiety about another stroke. Also, McCabe has observed that intermittent AFib adds to the uncertainty and anxiety. “Survivors may focus on whether the anticoagulant drugs are really working,” McCabe said. “With warfarin, it’s difficult to get their clotting times regulated, so there was often a concern: ‘Is my blood thin enough or is it too thin? Am I going to bleed?’ The newer anticoagulants provide a better, continuous source of anticoagulation, so some of that fear may be allayed.”

Photo of Dr. Pamela McCable

Dr. Pamela McCabe

Depression is another concern with AFib patients who’ve experienced a stroke because it occurs, and can make recovery more difficult, with both conditions independently. “It’s an area where we really have no knowledge about how the combination of the two conditions affects a person’s mental wellbeing,” she said. “I think some of that may depend upon the type of atrial fibrillation the person has. If they have the type that comes and goes and is very unpredictable, that’s going to contribute to more stress, particularly if they’re very symptomatic with it. Then again, if a person has a more persistent form, but has no symptoms, they may not feel any additional distress. It may be more about dealing with the stroke, and the atrial fibrillation may actually be in the background and the stroke really takes priority in terms of coping.”

As for antidepressants and how they interact with AFib or stroke meds, McCabe says there are too many of each type to make a generalization. “They need to talk to their cardiologist about that,” she said.

Coping strategies for AFib are the same as those for any chronic disease. “What we find is that people who take an active role in their care and try to maintain a positive, optimistic attitude do cope better,” she said. “Patients are better off if they actively seek information and make use of their resources like their providers or support sources. I encourage patients to take a more proactive approach to dealing with the stressors. Now, that’s not to say that these patients shouldn’t feel discouraged or that emotional distress is something unusual, and it doesn’t mean that they aren’t coping well. But in the long term and overall, people who do these more active coping mechanisms do have better outcomes.” McCabe says that means:

  1. Not being afraid to ask for help from others, whether it be family or friends.
  2. Being aware of the resources available to you, for example, through your therapist(s).
  3. Setting goals for yourself that can be realistically achieved, that are not far outside your capabilities in the early stages of recovery.
  4. Building on top of each goal that is achieved.

As for the double diagnosis situation, McCabe said her counsel for caregivers is:

  1. Make use of your resources.
  2. Take time for yourself, making sure that you protect your own health.
  3. Be there for the appointments. “Remember, AFib is not just a patient affair, it affects the whole family,” she said. “The more the caregiver can partner with the patient and understand the treatment plan and work it, I think, the better the outcome will be.”
  4. Don’t be afraid to ask for help from family and friends. Talk with your health care team. If a medical social worker is part of that team, they can be a good resource.

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