I’m Justin, I’m 27, and just had my first bleed in my front right temporal lobe on 06/06/2017 and was in hospital for a week. Worst experience of my life. Anywho. My neuro doc has instructed me I will have to go down the radiation therapy path as there is a high risk of paralysis if I had surgery.
Whilst I realize it has only just happened, I have a few questions regarding lifestyle changes that I havent been able to get a solid answer about or read anything convincing that will sway me in any sort of direction.
I’ve gone through some pretty crappy depression before and found that exercise was the best cure (was in the gym 6 days a week prior to this happening). It helped me get back to work and have hope in many aspects of life. Well, I feel my world has turned upside down again and I know my depression has come back. Whether it’s because of the lifestyle changes and restrictions that have been put on me or what not, its back.
I have cancelled my gym membership as I was told minimal exercise. This in itself, is killing me. Figuratively speaking that is. I know that doctors are over cautious because of how easy it is to sue in this day and age, however I feel that I need to exercise to keep my mind clear. To be able to operate on any sort of productive level, I need that endorphin release.
Basically, I feel I can do many of the things I’ve been told not to. Im curious as to what types of exercise people have been doing once diagnosed? What style of training? I was always in the gym lifting weights prior however this is what set off my AVM last month.
Any ideas/stories from anyone?
Edit - I am also on Keppra (even though I haven’t had any seizures) I also have a lot of other crappy symptoms such as tiredness, memory issues, etc however I believe e ercise will honestly help fix all of it so any advice will be appreciated.
Hi Justin and welcome , I know how you feel my friend. I too had the same issues as you after my first and thankfully only bleed. I can say that a bleed is a major thing that takes a long long time to fully recover from if you recover fully at all, Some don’t. So your told that after a bleed and even when you have an AVM that is active (not removed or obliterated via Radiation or Embolization) then you should not lift heavy weights or strain too much in general. You should take the doctors advice for sure, no matter how you feel or how much you want to, The doctors may be leaning on the side of caution, but think of it this way would you like to have another bleed ?, The tiredness that you feel is normal for a person who has had a bleed and you do need to change your life a little for now, Its a short term change till your better and you will be better , Going to bed earlier and sleeping a little more will help, minimise or cut out alcohol, Think of it this way some short term changes have a long term goal (life) little changes now will ensure you are fit and healthy for a long life . Hope this helps a little and I know its not what your looking for but have faith that you will be cured. Thanks and take care
My name is Danielle and as my story on the homepage explains, I also experienced my first bleed on June 7, 2017 (one day after yours!). I am post crainiotomy, so I know it’s not quite the same, but I wanted to offer one thought I think might be helpful. Prior to all of this, I was very much like you - at the gym 6-7 days a week to manage my anxiety, bouts of depression, and in my case, low self esteem. I had just started seeing a therapist who told me that I was using and building my physical strength as a means to overcompensate for what I lacked in emotional strength. I’m not suggesting you are not emotionally strong, only mention this to offer the perspective that perhaps for the time being, you can think of “working out” in a new way. Building emotional strength is every bit as difficult if not harder than pumping iron, or in my case, running mile after mile on the treadmill.
There is power in prayer and thanksgiving. I will be praying you find the peace and strength you need to move through this journey. - Danielle
Justin,
Hello, the doctors keep recommending Yoga for me since I can no longer make it to the gym, not worth the drive. Plus the meditation with your yoga can help with those frustrating times. I have never suffered a bleed but since 2011 when I had my AVM clipped I suffer from daily migraines my pain level is a 9 currently. Please, listen to your doctors & don’t lift, it could do more harm than good. All the best to you.
Welcome Justin. These things are often life altering, which I accepted versus a variety of other possibilities. I used to work out regularly, often heavier weights etc. Post bleed I was only allowed to walk for the first 7 weeks or so. I was up to walking in excess of 10 miles a day, always kept my ID in my pocket with my wife’s cell phone number and health card, just in case. After that the Dr. allowed some easy jogging and light weights, with a significant warning about over doing it. I was able to over the course of months get back to a regular routine.
It definitely helps me, and I had similar symptoms to you, the fatigue, memory, aphasia. They subsided with time. These things are all different, and my Dr. recommendation will probably be different than most. You’ll see many folks talk about patience, or patience and prayer, for me it was a real slow process. I’m aware of some people that given their specific circumstances, their Dr. would never have agreed to the jogging and weights part.
I have a frond who had a brain aneurysm bleed, and has a second one being monitored. Her exercise is yoga, and all I have read it is fantastic for both fitness and the mind. She is in incredible condition with doing yoga and eating clean. I guess a really long way to say, listen to your doctor, be patient and there is options for fitness, both physical and mental health wise. Take Care, John.
Thanks for the advice Martin, Danielle, Cathy and JD. The most frustrating part is that I somewhat feel I can do these things. Whether its my competitive nature, or my inability to accept being told I can’t do something, I always have to prove that I can do it or go against advice. That in itself is probably something I need to work on.
Ive thought about doing bikram yoga along with some resistance band work rather than heavy weights for the time being, so I’ll see how that goes I guess.
Hi Justin. Welcome to the site. When my AVM was discovered I didn’t receive any advice about exercise. But that was about 25 years ago. I have since learnt through various websites/literature that some forms of exercise can be more likely to cause problems. These tend to be cardio high intensity stuff. Despite this knowledge I was using an exercise bike and workout DVD last year when I had a ‘stroke mimic’. The docs don’t this is this was caused by the stresses of everyday life, the exercise or my AVM. Most likely it was a combination of all 3. After that I was advised to stick to walking and swimming in terms of exercise. Best of luck to you.
Good morning sir,
You and I are very similar. While I was bed ridden in the hopitial, I was convinced my life was over. I constantly inquired about end of life options, not because I was suicidal, but because I knew that the activities I loved, were over.
Please follow your doctor’s orders. I know it stinks, but it’s for the best. Get help for your depression. Meds and talking help. They both helped me. Mourn your body and predicament openly with your doctor’s, they’re there to help.
, I know how you feel my friend. I too had the same issues as you after my first and thankfully only bleed. I can say that a bleed is a major thing that takes a long long time to fully recover from if you recover fully at all, Some don’t. So your told that after a bleed and even when you have an AVM that is active (not removed or obliterated via Radiation or Embolization) then you should not lift heavy weights or strain too much in general. You should take the doctors advice for sure, no matter how you feel or how much you want to, The doctors may be leaning on the side of caution, but think of it this way would you like to have another bleed ?, The tiredness that you feel is normal for a person who has had a bleed and you do need to change your life a little for now, Its a short term change till your better and you will be better