2nd stroke on a NOAC

Juliet
Julieton Tuesday, July 14 2020
3 Comments

Last August i had a 2nd stroke at age 65 whilst taking a NOAC (Pradaxa) causing severe vision issues which thankfully have resolved somewhat.  It had been 18 months since the 1st stroke, both caused by Afib. I am unable to reduce my risk factors due to severe medication allergies and am devastated by what has happened, i live in constant fear and terror of a further stroke to the extent that my mental health is now badly affected. 

Has anyone else experienced a stroke whilst on a NOAC? 

I don't understand why every Dr i have seen is against Warfarin and says that a NOAC is better. How can that be when it has clearly not worked with me. There is no test that can show that the Pradaxa is effectively anticoagulating me, unlike with warfarin. I feel i am taking it for nothing. 

Im now waiting to see yet another cardiologist with a view to having a continuous Afib loop device implanted as i often don't feel the Afib. I feel like a ticking time bomb. 

3 Responses

Hi Juliet,

 

Thank you for reaching out to the EnableMe community. I am sorry to hear about what you have been through. It must feel very unsettling knowing that you have taken all of your prescribed medication, however have still had 2 strokes during this period.

 

It sounds like the doctors that you have seen are following the advice from the Clinical Guidelines to Stroke Management. The Guidelines help health professionals navigate the evidence for stroke treatment and provide the best care.

 

In the Guidelines, there is a strong recommendation about using oral anticoagulants for long-term secondary prevention. The Guidelines state that NOACS should be used in preference to Warfarin for patients with non-valvular atrial fibrillation (AF) and adequate renal function. The Guidelines also mention that Warfarin should be used for valvular atrial fibrillation or in situations where you may have inadequate renal function. Here is the link to the Guidelines.

 

The Guidelines have a strong recommendation as they have been created from the results of studies including 70,000 patients with AF from around the world. Research shows less complications of stroke in those taking NOACS than those taking Warfarin.

 

When seeing your new cardiologist, make sure you raise your concerns with them and ask them to explain the reasons behind the decision to keep you on Pradaxa. This may include discussing the benefits and risks of taking Pradaxa or Warfarin as well as the evidence behind their use.

 

While your fear is completely understandable, it is having a big impact on you. It would be good to speak to your GP about a referral to someone who can provide support and help you with strategies to manage the impact on you. For information on Medicare-subsidised sessions with a psychologist or other appropriate, health professional, visit https://www.healthdirect.gov.au/mental-health-care-plan

 

If you need more information, please don’t hesitate to call us on 1800 787 653 or email us a reply to strokeline@strokefoundation.org.au

 

Warm regards,

 

Kath (StrokeLine)

Thank you so much for your supportive and informative reply. My problem is that every Dr i have seen has agreed that if i experience another "incident" then i will have to change to Warfarin. I am considered extremely high risk for further strokes as i have uncontrollable major risk factors. 

Why wait until i am further disabled or dead from another stroke? It makes no sense whatsoever to me. I am seriously struggling even with mental health support. My husband has Aspergers so although he is able to assist on a practical level he is incapable of providing emotional support. Every day i am aware that this may be the day i have another stroke, it's pure torture. 

Hi Juliet,

 

I can see how difficult this is for you - I really feel for you. Ask your cardiologist the reasoning behind using NOACS rather than warfarin, and why he is waiting for another incident to change to warfarin. This could be due to the research and your individual risk of having more complications with warfarin over NOACS. For this reason, they may be quite cautious in changing your medication, and may only look into this as a last resort. Express your concerns as you have with us – that you feel like a ticking timebomb and that you are really struggling.

 

If you are still worried after the discussion with your cardiologist, please read this blog on when it’s a good idea to get a second opinion: https://enableme.org.au/Community/Forums/View-topic?id=3d1670e3-8b12-4128-9a6f-92a468e98d16

 

In terms of emotional support, the mental health plan from the above post would be a good option for you. Talk to your GP about getting a mental health plan for psychology support. You can then chose a psychologist, and use the plan to subsidise costs.

 

Your concerns are very valid, but it may help to talk with a psychologist about how to manage them. If we know that we’re talking to health professionals and doctors, that we’re taking the best medication we can for our situation, that our stroke risk factors are getting regularly reviewed, then we and our doctors are doing the best we can. Also, doing things such as eating well, exercising, not smoking, drinking only a safe amount of alcohol will also give us a sense of more control that we are addressing stroke risk factors head on.

 

Here is a resource that may help -

 

EnableMe: Fear of a second stroke podcast.

 

If you need us please don’t hesitate to call on StrokeLine 1800 787 653.

 

Warm regards,

 

Kath (StrokeLine)

 

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