Can i do boot camp? Exercise question...

Discussions of issues related to living with cavernous angiomas

Can i do boot camp? Exercise question...

Postby DarcyTBell » Fri Jun 16, 2017 2:26 pm

Hoping for some guidance on this. I was literally just diagnosed two days ago. Have 6 lesions, 5 are small and dormant, one is 1.5 cm and has had a recent bleed, and at least one other bleed. Am seeing a specialist on Monday. Initially, I had a killer headache, now gone. I have 2 young kids and a demanding full time job, and the most important time of my day is my exercise time which lets me just focus on me. I had been going 6 days a week to 1) cardio boot camp: 45 minutes of high intensity cardio with short rests in between, 2) Cardio kick boxing - also 45 minutes of boxing a bag and strength training, and 3) TRX - 60 minutes of cardio and strength training.

The dr at the ER said i should stop anything very strenuous. Although he said jogging and cycling would be fine. I am in very good physical shape, and really want to keep my routine. Most of the info I read on this board seems to say if you are up for the exercise do it, but since the dr told me not to, I am totally confused. Can anyone point me to an official take on the exercise question? Would the recency of the bleed impact the recommendation to take it easy? Thanks so much. I just know this will help me feel more normal today, but dont want to do something that will impact my health.
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Re: Can i do boot camp? Exercise question...

Postby Elizabeth » Fri Jun 16, 2017 3:23 pm

Welcome,
Sorry you've been dx, but glad u found us. They recently published these scientific recommendations. The "exercise" and related activities are near the bottom. There has always been a lot of different opinions on exercise. I personally was given no exercise restrictions and used to uneventfully do all of the intense exercise you described before I was dx. But after my angioma started to bleed(I think because of my first pregnancy), I felt sick every time I tried to do intense exercise. I have tried several times and for some reason, I can no longer tolerate it. :(

Here are the scientific recommendations:
https://doi.org/10.1093/neuros/nyx091

Just listen to your body, you will find ur comfort zone.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: Can i do boot camp? Exercise question...

Postby Michelle2000 » Mon Jun 19, 2017 2:45 am

Hello, Darcy, and welcome.

It took us quite awhile and several doctors (because we got diametrically opposed opinions) to track down an answer to a similar question about weightlifting for my son. The main concern as we understand it is activity causing a spike in blood pressure. He isn't allowed to do exercises that put the head below the heart for very long (such as some yoga positions), and when he lifts he is to be sure to be using good breathing technique (no breath holding). He has done well with this. He is not allowed to do any contact sports, either.

Of course, lesion location, symptoms, and bleed history are individual factors your doctor would consider.

Best wishes,

Michelle
18 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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Re: Can i do boot camp? Exercise question...

Postby karengr » Thu Jan 24, 2019 12:25 am

I am new to the CM family. They last 3 seizures I have had from it have been during or just after exercise. Has anyone else have trouble with exercise triggering seizures? any solid recommendations from doctors?
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Re: Can i do boot camp? Exercise question...

Postby Elizabeth » Sat Jan 26, 2019 12:16 am

Welcome,


Exercise is a fairly debated, uncertain gray area. My doctors gave me no restrictions, but I found that my body told me otherwise. I used to be a bootcamp kickboxing type of person but now I only walk because high intensity makes me feel dizzy and sick and high impact messes with my vision. Ask your doctors but listen to ur body.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Joined: Mon Sep 27, 2010 6:49 pm
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Re: Can i do boot camp? Exercise question...

Postby bjradin » Thu Feb 14, 2019 4:59 am

Longterm aerobic exercise for some of us can also be be an important addition to the quality of life and health. I returned to my usual aerobics about 10 weeks after my only brainstem bleed a bit over 6 years ago. I was limited by balance issues at first but progressed rapidly and finished a 100 mile bike race under 5 hours at month 6. I was 63 at the time and believe the the bleed was induced by trauma while on aspirin. I have always "listened" to my body and have never had any ill effect from vigorous cycling, skiing, or running. As cavernomas are more like dilated capillaries, I feel that high venous pressure might have more of a tendancy to cause bleeding such as in breath holding in weighlifting and is seen by enlarged neck veins. Arterial blood pressure does go up with aerobic exercise, but at the same time the venous pressure only up very slightly.
Bottom line, listen to what your physicians advise, but in some of us, it might be ok to do aerobics at any level as long as your healthy otherwise. Or maybe I may be just lucky.
Footnote: My cavernoma in the medulla has shrank slightly when last scanned 10 months ago. I have a strong family history for heart disease and on maximal dose of lipitor.
Bob
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Re: Can i do boot camp? Exercise question...

Postby Roger » Thu Mar 07, 2019 5:39 pm

bjradin wrote:Longterm aerobic exercise for some of us can also be be an important addition to the quality of life and health. I returned to my usual aerobics about 10 weeks after my only brainstem bleed a bit over 6 years ago. I was limited by balance issues at first but progressed rapidly and finished a 100 mile bike race under 5 hours at month 6. I was 63 at the time and believe the the bleed was induced by trauma while on aspirin. I have always "listened" to my body and have never had any ill effect from vigorous cycling, skiing, or running. As cavernomas are more like dilated capillaries, I feel that high venous pressure might have more of a tendancy to cause bleeding such as in breath holding in weighlifting and is seen by enlarged neck veins. Arterial blood pressure does go up with aerobic exercise, but at the same time the venous pressure only up very slightly.
Bottom line, listen to what your physicians advise, but in some of us, it might be ok to do aerobics at any level as long as your healthy otherwise. Or maybe I may be just lucky.
Footnote: My cavernoma in the medulla has shrank slightly when last scanned 10 months ago. I have a strong family history for heart disease and on maximal dose of lipitor.
Bob


Sorry, maybe a little off topic..
This post is what makes me optimistic about the clinical trials that are going on. You mention the shrinkage, even if slightly, of your cav and being on Lipitor. Since this is a statin maybe that is doing some good. The trials are using a satin as well..
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