Can anybody relate to only walking very short distances then needing 2 days to recuperate?
Love to hear your experiences..
I have periods were I feel great like today, then I will just like crash. I probably over do it when I feel good. Other times I just don't know. Can't get enough sleep. Not just sleepy, but physically need to sleep, exhausted feeling. I had an episode like that last week. Took two days to get over it, what ever it was.
Sometimes I wake up, go to bathroom, stumble to the kitchen for coffee and feel like I've worked all day! Like Melissa some days I feel great and part way through (or at the end, if I'm lucky) I crash. I try to pace myself. On days I work, I take several short breaks. When I'm off, I try to stop about 4 hrs in for a rest so maybe I won't require a nap.
Hi…its been 7 years since my AVM removal
And I still get tired…sometimes when I’m very tired I get to a point where I have to sleep…i stumble and mumble ,and I just have to sleep.A short nap usually all I need.I also am diabetic…type 1 so tiredness is a constant battle.Saying that I’m incredibly blessed.I work 3-4 days a week and no one would ever know i have had brain surgery.
mo
Before surgery, it was like you describe. Exhaustion. Now more like sleepiness. If things are going rough I take an hour nap. I can definitely relate!
Wow, I thought it was just me. I try to push myself. I’m so afraid to give in to exhaustion.
Teddi, about 6 months after my diagnosis my neurologist said, "You need to know your limits". At that time I told him I was learning, that when I thought I'd reach my limit and took a break that's when I would discover I'd reached my limit an hour before I thought I did. That's why I started timing myself. Also it has been suggested somewhere that when you rest to focus on only ONE thing - no multi-tasking when you rest - LOL!
Yup Andy!!! And I thought I was just being lazy!! When I can go hard I do. BUT when I get tired, in exhausted to my core. Sleep is a big new friend 
Hi Teddi and Jeremy…thanks for the reply s. 3 Years after the AVM removal…i returned to full time work.It was a demanding job sometimes entailing a lot of driving and teaching.i was getting tired and I pushed through the worst times thinking if I just get through this bit…well I had a car accident not my fault
only whiplash ;thank goodness but because I had pushed myself and was so tired I went back to the post op state.very unsteady …kept falling over exausted.no sense of humour !!. I felt like a shell.it took me 5 months to recover from this and then I returned to work part time. ,which I have continued thank goodness.Tiredness is a warning…you need rest…you r body needs rest.I still get very tired but don’t push myself.As my doctor said.’.accept your limits’…i didn’t …i believed I could carry on just as before.Accepting my new post op limits was a big battle for me and I’m sure all of us here. X
Before and after my first embolization, my exhaustion was overwhelming. And, I pushed myself and returned to a stressful job way too soon. I recently had a second embolization and have learned to
accept my limits. Not as a weakness but as a strength that I can say no when I’m not up for a task. Listen to your body. And to your doctors. They won’t steer you wrong.
Well I do tire easily. I find that if I do a lot on one day, the next day I am dizzy and tired and have to rest. I have a stationary bike which logs my miles. Physical therapist recommended it. I use that on days I can't get out and walk. By the way when did you have your avm diagonosed? The bike doesn't tire me out as much as walking
Absolutely!!!!
I feel like I am a hundred years old just doing daily chores! I feel guilty cause my family is bored on the weekends, and want to go out and do things.....I want to nap!
I began having shortness of breath and fatigue over a year ago. I require more rest but mine is not as bad as your. I've had numerous test over the last year. The conclusion is my symptoms sre due to the shunting in my AVM. It is beginning to affect my heart. I would recommended seeing a cardiologist. I have not had alcohol embolization in at least 5 yrs. Howevere, when I did I suffered with extreme fatigue. If you are recieving embolization now I would inform that doctor of your symptoms. Good Luck
My avm bleed was over two years ago and I am still exhausted daily. I am learning to pace myself. My biggest issute lately is guilt from not being able to do things with my children due to constantly being tired.
I am about 7 weeks, post craniotomy & successful brain surgery to remove a really large (singular) CCM (cerebral cavernous malformation). My first 4 weeks is a bit of a blur. I napped & rested all day long, much like a toddler!
The last 3 weeks, resting & sleeping less, but tire so very easily. I’m walking 2-3 miles per day – but like others mention, when I push it (and attempt to do as I did prior to surgery with my day to day as super mom,) I literally am physically exhausted the very next day - and return to napping more. So it’s for sure up and down - trying to learn my “new normal” is tough. I’m still on keppra, which I Believe is also a big part of my tiredness…fingers crossed to be weaned off soon!! Still no driving/not back to work - and trying to enjoy this “pause”. Also practicing a bit of meditation daily to rest the mind - end ensure my quality of sleep is the best it can be:)
Good luck, be patient with yourself and as we are all learning, this is a process!!
Andy,
Not sure about your AVM location and treatment, but I experienced adrenal exhaustion after my embolization. I did have an MRI of the heart to make sure I had not had heart damage from the pelvic AVM taking the blood supply from my heart. ALso ruled out any other AVM. The cardiologist was glad that the medical doctor acknowledged the adrenal shut down. There is blood work that can be done to check adrenal function. I continue to take a mild dose of adrenal supplement and it has made a world of difference in a lot of my symptoms, especially the exhaustion.
This takes time but makes a world of difference.
Sincerely,
happy