Another TIA doctors don’t know what’s causing them anyone else like this

My Husband had an Ischaemic stroke 6 months ago and we’ve been told that when Doctors can’t find a cause for the stroke, there is a high likelihood it may be AF (Atrial Fibrillation), irregular heartbeat rhythms that flick clots to the brain causing the TIA’s and Strokes. He has had a Loop Recorder put just under the skin in his chest recently and it connects to a modem at night when he is sleeping. The modem sits in the bedroom and reads the very small Monitor in his chest which is taking a trace of his heart rhythms. That trace recording goes via the internet to the Hospital Cardiac Unit each night. Any unusual heart rhythms and he gets a call from the Hospital to come in and they will change his medications to a more suitable blood thinner. The monitor stays in for three years. 

Hi thanks for information, this is what I think it might be and have mentioned it to doctors, but all they say they can do is heart monitor thing for 48 hours and even then doctor said it probably won’t pick anything up, he did mention something else I could have done which sounds like what your husband has but they can’t do due to covid19 so probably won’t get that done any time soon if ever,  It just frightens me that I will have another TIA or stroke before they find out the cause, I’m only 44 and with family history of strokes worries me a lot, and now I just think I will have heart monitor again and if that doesn’t pick anything up, I’m back to square one waiting for another TIA or stroke to hit. It feels like a vicious circle. Thanks again for info hope your husband is doing ok.

Sorry you’re in such an untenable position. Those Holter Monitors rarely pick up AF as 48 hours is never long enough. It is such an intermittent condition and you could go for weeks or months with nothing and then one episode is all it takes. That’s what happened with us anyway. The two Holter tests my husband had were negative.

The Loop Monitor surgeries have been given the go ahead again as a Code 1. It is a simple 15 minute procedure.  We were at a Hospital yesterday having it done. Elective surgeries have been reinstated in Queensland anyway. Maybe you need to push for some action to get one now that you have this information. It will need to be recommended by a Specialist. We have waited 6 months, only because it is in the Public system and my husband had to do rehab for 5 weeks. Worth asking them.

Hi Beth, I had a major stroke in 2013, when I was 46, followed by 3 TIAs in the following years. After my stroke a TOE revealed I had a PFO but it wasn;t until the third TIA taht they decided to close it.
I still don;t know what caused my stroke/TIAs just that the PFO allowed the clots to travel to my brain. Unfortunately about a quarter of strokes have no known cause so it becomes a case of managing your risk factors and taking the meds your prescribed. Do you know if there was an underlying cause for your relatives' strokes? The thing that I have found so helpful is having an empathetic GP that I can voice my concerns to. 
I'm sorry I can't offer any real advice but wish you the best 
Toni

Hi Toni, thanks for the reply and sorry to hear what you have been through, my son has a PFO and doctors have just left it, always worry he will go down same path as me, I had mine checked and it was all good. All my dad says about his brother and dad ( my uncle and grandad) is they died of stroke, I was younger and all I remember is them being there one minute and told they died the next. I just don’t want to be the next being the next generation. Like you said I will just keep taking the medication and go from there day to day. Thanks again 

  Hello Beth,

Thank you for sharing here on EnableMe about your stroke experience. It sounds like this is a really challenging time for you at the moment, and it is hard not knowing what caused your stroke. This type of stroke is referred to as Cryptogenic stroke. With no identified cause, Cryptogenic strokes can be difficult to understand, and often leave stroke survivors looking for answers and living in fear of another stroke.

The StrokeLine team wanted to let you know that we acknowledge those who are experiencing fear of stroke, and understand the stress and difficulty this can create for many stroke survivors. It may be worthwhile to look at our fear factor blog post here and to listen to our podcast on fear of a second stroke here. Sometimes it can be helpful to learn about other people’s mutual fear and concern for something you are experiencing.

It’s great to read that you are taking care of your health in all the ways you can control. It’s good to make sure you are getting some exercise also, as this can help some people deal with stress from uncertainties. We hear many stroke survivors talk about the benefits of Yoga and how it can help with managing stress also, listen to our Yoga podcast here.

I thought that it would be good to mention that anxiety after stroke is quite a common feeling, with up to 1/3 of stroke survivors feeling anxious or depressed following a stroke. Another option that might be helpful is to consider and to deal with the fear of having another stroke is using mindfulness or meditation, as this can help with better managing anxiety and stress. If you have a smart phone you can download apps to help with mindfulness and meditation. You can find these at:

- Calm https://www.calm.com/

- Smiling mind https://www.smilingmind.com.au/

- Stop, breathe and think https://www.stopbreathethink.com/

I hope you find this helpful during this challenging time. Keep posting and sharing your thoughts on your stroke journey, and if ever you need some more immediate advice or want to voice your concerns you can always call us at StrokeLine on 1800 787 653 to talk to a health professional. 

Best wishes,

Annabelle and Leah,

 StrokeLine

Hi Thank you I didn’t know the name for what I had so at least now I know I’ve had 2 cryptogenic strokes, I have tried yoga last year but due to nerve damage in neck and back plus lots more issues with back I was in more pain doing it and yoga instructor advised me to stop, I’m at hospital pain clinic now for those issues.

Will definitely check out all the other links you put on though, I’m trying to stay as positive as possible but it is a trying time and I know not just for me but everyone at the moment, though these last 2 months have pushed me to my limit like nothing else before, as first week in March I had Rota virus for 3 weeks which I got from work then with this could hardly walk as back was playing up then had another TIA, I always say to myself there someone worse off than yourself, I think that’s what gets me through and trying to have a laugh keeps me going.

Thanks for all the info