Update for you, it may help others!

Intro - I have always thought my AF is a symptom of something else rather than a header diagnosis. I have had AF since 2005 and had about 4 or 5 mini strokes which have caused permanent damage ie loss of hearing, deteriating eye sight and weakness in my muscles making excercise intolerant, vertigo. I have been seeing a Nuerologist over the past 6 years who confirms complicated migraines without headaches, my disagreement with him is why am I deteriating and why is the damage becoming permanent. A Heamotoligist on board now and arranged me to see Cardiologist and ENT specialist. Saw cardiologist last Friday and he does not think the Mini strike episodes are to do with the AF, advise me to stick with meds as my CHAD score is 3 as I have been diagnosed with them, he strongly believes all of these symptoms are Nuerologically driven. Although, if Neurologist does not come back with more answers then he is going to ablate to be on the safe side. Seeing ENT later today to see what his opinion is.

It's a hard slog with the NHS at the moment to get answers/decisions and see the appropriate specialists, all I can share with others , is don't give up!

5 Replies

  • I agree . We all need to take charge of our condition and drive treatment forward rather than accepting one doctor's verdict. Remember that doctors practise so they are not yet perfect.


  • Yes, can't agree more, Bob


  • Omg, I can't believe it, I turned up a week early for my ENT appt after travelling for nearly 3hrs on 3 bus's to get there.

    I should have gone to spec savers!

    Bus pass out and try again next Tuesday

    Have a good day all x

  • Hi Poppyseed, keep looking for your own solution with the help of doctors if essential.

    Re NHS, I start with private and then switch to NHS.

    Good to hear your approach and best wishes for the future.

  • Hi,

    Whilst I was still able to work, I did arrange for a private appt with Neurologist which got me back into the NHS system. I have now had to downsize and dramatically down grade our living style as I was the main wage earner. Going private is now not an option for me, hence i am still knocking on the door of the NHS for answers.

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