Can I exercise without triggering my AVM

Hi all,
I’m new, I have a grade 5 brain AVM.
so upon my diagnosis when I was 8, I basically stopped all sports and intense physical exertion. I’m pretty healthy nonetheless, however, I am relatively unfit and get tired easily. When I have attempted to work out e.g. crunches, planks, burpies… I always get these ‘2-minute episodes’ where my left side goes super hot and numb, I have an intense headache and strong urge to throw up - these only last two minutes. So I have tried to stop doing intense exercise where I’m jumping or where my head feels strained. But still… even after a few minutes on an exercise bike or a walk in the neighbourhood as an alternative, I still get these episodes, usually multiple after each other.

I don’t know if this is just because I’m unfit or if simply getting my heart rate up triggers these episodes. Is there any exercise that you find is safe and suitable for AVM patients?

Welcome to our group. I would say that most of your questions should be directed to a doctor. I can tell you what my neurosurgeon allowed me to do. I was always very active, played a lot of sports. My AVM was discovered when I had a bleed at 48. Once I was out of hospital, I was allowed to walk, and nothing more strenuous. Over time I was allowed more and more until I was given the green light to do what I wanted. We are all different, and I had a slow progression for sure. I would be sitting down with a doctor and explaining what is happening. I have never experienced the symptoms you describe, aside from the throwing up part due to intense exercise. Take Care, John.

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Thank you for your reply John. Yes, for sure… I have brought these concerns up to both my neurologist and neurosurgeon but there isn’t really much they can say. They usually just tell me to take it easy, to stay hydrated and to generally avoid physical activity. But ultimately we kind of have to be our own doctor and determine what is best for ourselves because no one can truly know how we are feeling. I think I have to do everything at a slower pace and in moderation, but I would like to find the cause of these strange episodes I have. They occur rather frequently and often arise from things like missing medication or stress. I’m not too sure about it all, but I’ve noticed that AVM’s are quite ambiguous and enigmatic things, subjective to each person. I’ll have to figure out some exercise regime appropriate for my condition… maybe yoga or swimming…

Dani,

I’d say, if you’ve got a grade 5 untreated AVM then being sensible about exercise is the right thing to do! Grade 5 is as big as they get and my assumption is that the episodes you’re getting are blood pressure-related.

If you can find a level of exercise that doesn’t lead on to the episodes you’re having, that would seem safest to me. It may be that you really do need to stay very moderate in the exercise that you do.

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Hi Dick,
thanks for your reply. I have told my doctor about these ‘2-minute episodes’ and they have also proposed a causal link to my blood pressure. These only started happening after my first and only seizure in 2015, since then I’ve been on Keppra and verapamil, and usually, when I miss those medications I get one of those episodes. They are kind of like a mini hemiplegia episode. But for sure, I think as I grow older it’s important for me to work out some exercise that’s best for me to stay healthy whilst also obviously not causing harm to my avm.

How do you get on with simple things like walking or cycling? I’m sure walking is a very moderate activity but if you’re careful, I kinda think you could do some cycling without overdoing it as well.

With some untreated AVMs, some patients seem to have regular (annual or biannual) scans to just see how things are. Do you have checkups like that as well?

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Just chiming in cause I wondered the same thing! What I’ve been told is to do low intensity workouts. Walking (on treadmill or to a location) is good cardiovascular exercise that doesn’t get the blood pumping too much. Situps, pushups, crunches are ok. Just avoid things like lifting weights because of the extra pressure that puts on your system. Of course check with your doctor first, but it’s a delicate tight-rope we walk. I’ve had 4 AVM with 1 rupture in 2000, another rupture that summer. Then another rupture 10 years later. Finally, I had one rupture in 2020 that neither the docs nor me were are of ruptured. So, no bad feelings against doctors because they do their best, but you ultimately are your best advocate. Hope all goes well for you.

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I have changed a fair bit from weights to a lot more cycling, running and swimming. I still left weights but usually lighter weight, higher reps. Actually started to do Triathlons a few years back, did get a little bit addicted to it…COVID has interfered some, was scheduled to go to Spain last year and do a race and some touring around. Sticking to Canada this year, if any go ahead.

Hydration is huge, I use a product called Nuun which is electrolytes. Water was not enough during longer training sessions, or in our prairies heat. The electrolytes reduced cramping, and certainly kept me much better functioning. Anything over 90 minutes I also start taking in calories, sometimes via liquid combined with electrolytes, or sport bars.

The thing that scares me for you is the difference from one side to the other. If your docs have basically said to do what you can. I would dial back on the intensity and time, slowly building up on the cardio side, slowly on the resistance training, staying hydrated, ensuring to not create too large a caloric intake deficit and keep track of intake. Your body needs the fuel to run properly. If trying to loose weight it is about 3600 calories per pound, give or take. Slow and steady is healthy and most likely to achieve long term success. I try to up either intensity or time, not both at the same time. Mind you at my age (53) I tend to get injured a little easier than 20 or 30years ago! I’ve recently learned what an “overuse” injury is!

Kinda went off track little there! I am fairly passionate about my exercise.

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I’m basically fine with walking, and with cycling I just have to be mindful that I don’t go too fast. Although when I do get my heart rate up or blood pressure up, I tend to have those episodes. I do have regular MRIs but I don’t think anything has changed with the AVM, it’s been largely the same since it was discovered.

I’m sorry to hear about your ruptures. Yes, I’ve been told the same thing when it comes to using a treadmill and things like that. My doctors have been great in helping me live my most normal life possible. It’s just a matter of me figuring out something that can help me get a good amount of exercise in without affecting my AVM.

Hi John,

Wow, your adventurous spirit is very inspiring. You’re right, hydration is important. I think that might be a reason behind these episodes as I am not always particularly well hydrated. I also need to make sure that I’m not at a large calorie deficit. This one side of my body being numb type-thing is sort of like a dialed down hemiplegia episode which is what I usually experience when I have a regular AVM episode. Thank you for your advice, maybe I’ll try swimming.

Sounds very good!

If there is any danger of you going into a seizure, swimming should be avoided. If you think hydration and blood sugar levels are driving some of this, then I’m definitely with John on more closely managing those.

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Hi Dani,

I have a grade 4 right occipital AVM which ruptured while I was running 2 years ago. I don’t blame the running so much as the fact I was very dehydrated and was pushing too hard. Running/exercise has many health benefits and I had been doing it for many years with no issues including marathons. I won’t be doing marathons again anyway but today I ran 8 miles and feel good. My neuro says I can do anything that feels ok, and that there is no strong evidence to avoid certain activities. He did say scuba diving is to be avoided due to pressure changes, and swimming alone is 100% not allowed in case of seizure. Obviously it’s important to take medical advice which may differ for each person/AVM. One poster mentioned push ups VS weights. Push ups are high load as you’re lifting a lot of weight and are horizontal which may increase BP in your head. I’m not saying don’t do them, but if you’re concerned about high intensity work, push ups are high intensity. Yoga is excellent resistance and strength training and mostly lower intensity. I also walked for several months after my bleed, several miles a day with no running, and that was great for keeping weight off and feeling healthy.
Good luck mate!
Jonny

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Hey @dani.has.an.avm,

My neurologist was very adamant that I avoid getting my heart rate over 85 BPMs until the portion of my brain was completely embolized. Following a hospital stay for a rupture, he didn’t have to tell me twice :laughing: I would imagine your neurologist would take a similar stance on the issue. On most cardio machines I was able to exercise while remaining within the limits given to me.

Hope this helps!
Jack

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I walk 2 miles per day

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Hi there. So sorry to hear about your problems. It looks as if plenty of others have already responded. And I can only speak from my own experience. But I would just tell you to be careful and slow down a little. To cut a long story short …in 2016 I had an episode while exercising. I was pushing myself quite hard at the time, plus not really getting enough sleep and dieting. I had some dizziness and afterwards I felt a bit sick, but thought no more of it. Next day though I realised my vision was a bit weird and I couldn’t move normally on the left side. Docs thought I’d had a stroke but eventually said it was a ‘mimic’ as scans showed no signs of an actual stroke. They thought it had been brought on by strain on my body.

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Hi, I think this is something you really need to discuss with your doctors as they are more aware of your AVM situation, however I would think brisk walking should be fine if hardcore training is out of the question… God bless!

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Hey, yeah I definitely think this is a case by case thing… the high majority of people here seem to say they have been told they shouldn’t do high intensity exercise, butttt I am a semi-professional footballer and have been told I can carry on as normal (which often gets pushed to very high intensity)… and my prognosis isn’t the best. I’d just go with whatever your doctors are saying :slight_smile:

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Hi Dani,

I can relate to you on this subject, before my Grade 5 AVM discovery and rupture I was very active in Kickboxing/Brazilian Jiu-Jitsu. One day I suffered a concussion and incidentally found the AVM, doctors advised no heavy lifting but contact sports wouldn’t cause a rupture. 2 years later, the AVM ruptured and I did a 2 stage gamma knife radiosurgery. The AVM has since been 99% eliminated. I can tell you I have gotten those weird/hot sensations in my head when I did try to lift anything heavy post rupture.

Listen to both your doctor and your body. Running and basic exercise is fine. Body weight exercises(pushups, situps) are fine as long as you don’t over-exert yourself. The main thing is that you don’t STRAIN yourself because this puts immense pressure on your AVM (which we all know is already weak). Be wary of any medications/drugs that you take. Alcohol and stimulants can cause negative effects to the the AVM. And like everyone said, stay hydrated I think this was a huge reason my AVM ruptured.

Don’t let the the grade 5 term scare you. I was in the same boat, part of my recovery process was just working out and eating healthy (actually endend up losing weight). Eat healthy, stay hydrated and research everything (including doctors). If you have questions feel free to ask.

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Hi,
sorry for my belated response… I got logged out of my account.
I’m sorry to hear about your rupture. My neurologist has said the same about those sort of activities like scuba diving. Yoga though sounds like a good option… duly noted. I will definitely look into that. Thank you and good luck to you also :slight_smile: