Good information here - thanks Sandra for asking and thanks for all the good advice. I personally like the ones where the docs have said there’s nothing we can or cannot do that would cause a bleed. I will still use caution, but it eases my mind since I often worry about stuff.
To be safe, I asked my neurologist if it was safe to continue Zumba. She said exercise is great but keep HR at max of 120. I also noticed about halfway through a Zumba session, I had to concentrate really hard to keep up. Neurologist confirmed AVM causes lack of blood flow/oxygen to that part of my brain and exercise requires more blood to the heart thereby causing even less blood/oxygen to the brain thus the "confusion".
Thank you all for your comments. My consultant has advised no running just gentle walking! I suppose I will have to follow his advice as he has looked after me for so many years.
Sandra
I'd say just listen to your body but do what makes you happy. My doctor gave me some do's and don'ts and I've already found out that a few of them were wrong.
I can say from personal experience that I can sometimes feel a little pressure in my head during a workout, but I always adjust my intensity so that I'm never uncomfortable. No doctor will be able to feel what I feel as it's happening, so my own judgement is best in those cases. If it's a really good workout (I often play high-intensity indoor soccer) I can feel a very noticeable peace or sense of ease for the next several days. Plus I get to do what I love and live for!
Another point is this - there are many things that cause spikes in head pressure (some have already been mentioned) like coughing, bending over, laughter/crying/anger, sex, spikes during sleep, the list goes on... basically you're never going to be able to avoid *all* of these, so why not help yourself out by enjoying a good workout sometimes.
All in all, there are many benefits to working out and the risks are minimal if you use good judgement.
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My doctors only allow me to walk now, they tell me that is as good if not better than running although I ran my entire life and miss it. However, part of my problem is that in addition to the AVM (Face / Head) I am taking Coumadin due to a blood clotting condition so cannot afford to fall and hit my head. Unfortunately like many have commented when you exercise the blood pressure rises which is not good for the AVM plus, depending on the location of your AVM and what vessels it is networking or connected too, it good block off blood flow to certain areas. I know when I try to push myself too hard, to walk faster or increase the elevation (if I am on a treadmill) I become really unstable, start to have pain in my face and head, get shaky, and my balance/vertigo is shot. Finally, some of us have had embolizations with surgical glue (in my case it was Onxy) and I have been informed that if you have had glue inserted into vessels like I've had that you cannot exert pressure, so I have been told no weight lifting or any exercise that would cause me to bear down hard or grimace. That is kind of scary advice when you think about it as, like someone mentioned, you do those things when you cough, sneeze, etc. Anyway, as you advisor suggests I would recommend walking and they have some cool things you can use now to enhance a wlaking workout like walking poles, hand weights, etc.
Sandra,
Hope I can help, but each one of our AVMs might be different from each individual.
On a scale from 1-5, and 5 was then largest types of AVM, I HAD a 5. I have been a jogger, almost all of my life, and I am now 52 years old. I got my AVM almost completely fixed, (@95%) in 1990, but all the jogging that I have done, I NEVER had a problem with my AVM while jogging. Before my brain surgeries to correct my AVM, for years and years, I jogged for 45 minutes, 4 times a week. After my 2 strokes during 7 brain surgeries in 1990, I actually now jog 90 minutes, 4 times a week!
Here is a KEY that might help you like jogging in the beginning. Do not start jogging too fast or too long! EASE into it!! Also, be DEDICATED. Do not stop for more than a day or two to the next jog. Otherwise, it would feel like you have to keep starting over again. Does that make sense?
Good luck, and hopefully you can jog for the rest of your life!!!
Lisa A. Stuckel/Kane
Sandra, I completely agree with the advice to check with your Dr. My AVM was in my spine, I had no idea it existed til I joined a high impact cardio-kickboxing class. One night after class, (I wasnt able to finish the workout for the first time because I was feeling dizzy and just not right) I woke up with a pain in my knee, the next morning my foot was numb and I was having horrific back pain, I went to a Dr who thought I may have had a herniated disk and ordered bedrest. Long story short, within a week I was paralyzed from the waist down, and a new Dr discovered the AVM, which wasnt bleeding but was growing and crushing my spinal cord and cutting off the blood supply. There was no question in my, or my Dr’s mind that the exertion from the exercise I was doing is what caused the AVM to start growing. I was very blessed to find amazing medical care and can walk again.
I can’t stress enough how important it is to check with your Dr before any exercise, and if you have any unusual symptoms when working out to have yourself checked as soon as possible. I hope all works out well for you!
A key to start exercising and/or jogging is not do TOO much TOO soon! If you do, you might not enjoy it. So EASE into whatever you start doing. Maybe start power walking for 15 for the first month. Then maybe after that, build up to 30 minutes power walk. Then maybe start jogging?
I forgot to mention that I had grand mal seizures before my brain surgeries, but never when I was jogging. In my early 20's, I got about 1 or 2 seizure a year. As I got older and older, though, in my 20's, I started to get more and more frequent grand mal seizures. When I was 29, right before my brain surgeries/strokes, I was then getting about 1 grand mal seizures a MONTH. My AVM was so bad, that nothing I did was going to make it worse. It got worse on its own. ***When I got seizures, I got them whenever, where ever: Sleeping, eating, at a movie theater, shopping and working in my career.****
Exercising? With all the exercise/jogging that I have done for over 3 decades, it has been pretty safe for me. I will hopefully never stop. MODERATION and DEDICATION are the KEYS.
Now,I am also very dedicated to machine exercising, and I am more healthier NOW than when I was in my 20's. I am 52 years old now.
I hope this helped you more.
Lisa
Sorry, but one more thing: From you profile pic here, you do NOT look like a 'couch potato' at all, in my eyes! :-)