Comment

Moderator Comment by dancermom on January 2, 2013 at 9:45am

Helen, I found this discussion for you: http://www.avmsurvivors.org/forum/topics/avms-and-running?xg_source...

Lots of fellow sports enthusiasts here, and some others interested in Iron Man.

Comment by HELEN GRIFFITHS on January 2, 2013 at 6:23am

Dear Ben and Dancermom,

Firstly I would like to thank you for your reply and I really appreciate and respect
Your honesty.
I train daily, my consultants are aware of this, running 10 miles is just a trot out
I attend spinning classes daily.

Please please believe me that I have asked about exercise and on all appointments
Mr Eldridge and even his registrar has told me that exercise is fine just to keep having
My blood pressure monitored by my GP.

Ben, it must of floored you to stop training and I can't even comprehend how stopping
Must of gutted you. Training is my life.. MY LIFE! .. I've bought a heart rate monitor with
Blue tooth watch to keep my eye on my heart rate.
How many BPM do you think should be my max?
Should I invest in a BP monitor to wear whilst training?

Many many thanks for your time and helpful advice x
Helen. Xx

Comment by Ben Mrl on January 1, 2013 at 4:16pm

Helen,... for me to stop training, in my case studying... I was a martial artist at the time. Was the worst thing I ever had to give up. I still miss it to this day.

I believe for you to wear a BP monitor while you are training would be a good investment. As far as what your max of your BPM should be... That I don't know. Is what I would do is, go by how you feel at different rates and make notes of it. I think it's going to be one of those things you are going to have to "play" with. When you are confident of what your comfort level is. Try to stay within that range.
Remember - as long as you still have the AVM, you are living with the risk of bleed or a stroke. I say this with love. I would hate to see something happen to you.

Ben

Comment by Ben Mrl on January 1, 2013 at 9:49am

Hi Helen,
I agree with Dancermom.
I personally can't believe your dr. approved of your workout routine. Anything that raises your blood pressure and raises your heart rate puts you at risk for a bleed to occur. My drs. forbid me to any kind of intense workouts. At the time - I was working out 6 days a week, 2 to 4hrs a day. I had to stop. The risk of having a stroke and possibly being paralyzed didn't seem worth it to me.

Ben

Moderator Comment by dancermom on December 31, 2012 at 8:55am

If you have an active AVM, cardio by increasing your circulation puts more pressure on those fragile vessels and could certainly increase the likelihood of seizures or even a rupture. Many members here are advised by their doctors not to participate in exercise that is so intensive. Let your experiences be your guide.

Since you have observed the connection between your exercise routine and seizures, please consider whether training for Ironman is worth the risk to your health. Could you delay participating until the radiotherapy has had a chance to work? Increasing the dosage of an anticonvulsant can bring its own problems and will not stop a possible rupture.