It has been over 11 years since my brain AVM was discovered at the time of a bleed. It has also been many years as well since I completed my rehabilitation (OT, SLP, PT), but one thing I can’t seem to shake is the fatigue. I asked a pharmacist if he had any suggestions, so he asked the basic questions:
“Are you getting enough sleep?” YES
“Do you take multi-vitamins?” YES
“Do you get enough exercise?” YES
“Is it your iron levels?” DON’T THINK SO, because it is all about how tired my mind is!
And the thing is, I am not “tired”… I am “fatigued.” Sleep doesn’t help me because my brain is tired. Sometimes I’m too exhausted to dream, and even in my dreams, I still feel worn out. I work five days a week and take lots of breaks, but come the weekends, I just don’t feel like I am getting over my exhaustion. Does anyone have any suggestions or natural things they use to relieve fatigue?
Thanks for your replies!
I know exactly what you’re talking about, but hide it well at work. I’m a fairly high energy person that has returned to some degree since the bleed, and gamma. But I can tell you by the end of the week I want to just find a cave and hibernate! Although life doesn’t allow much of that. I’ve stopped saying I’m tired as people always say “you’re always tired” . I can’t explain the feeling to them, but I like how you say fatigued vs. tired. I exercise a lot and that helps but I don’t have the answer to the end of the week feelings, except hibernation, which doesn’t seem to fit in with life and family too well! Take Care, John
Hello, I have been dealing with the same issues many years, unfortunately I do not have any answers, I have tryed everything I can think of and seen many different types of doctors and healers, I always seem to walk away with the same answer, you have what you have, your a brain surgery survivor, it won’t get better and as you age expect it to get worse, acceptance and positivity are my best weapon’s, that and faith, wishing you a better outcome, take care and be strong,
Thanks for your replies… I see we are all in the same boat here!
I have found this private little wooded spot next to my property and I am calling it “Serenity Hill.” Lately come the end of the week, I take my dog and climb up there and just sit in a tree for a while, looking over the forest. I am hoping that just the peace and isolation up there will help refresh my mind soon!
I have the same problem even though I have not had a bleed. I work all week then crash on the weekend. I could sleep 24/7 and still not feel rested. Maybe its the tinkering with our brains or medications we have to take. There is “sleepy” and then there is “tired”. I can take the “sleepy” but not the “tired”. That’s when my body and brain say “no more!” I hate feeling like that.
I feel the same way. A customer told me today that I wasn’t focused and complained about me. Needless to say I left work in tears.
Sounds like EDEN, perfect, more healing than any doctor : )
Doctors don’t know how to handle “tiredness”, beyond those basic questions. Keep exercising! Fatigue, as you describe it, is not helped by more rest. Here are two suggestions, and please forgive if it turns out to completely off-target for your situation.
Is your sleep continually interrupted, as in sleep apnea? If you have a spouse or partner, ask if you seem to stop breathing while you are sleeping. I’ve always heard people with this condition state what a difference it made to have this treated.
Also, are you taking a cholesteral-lowering medication, such as simvastatin? Some of those medications can deplete you of that co-q10, which can leave you with low energy.
But, otherwise, yes, an AVM can make you very low in energy, and your doctors will be hard-pressed to explain why. It’s the brain, and doctors don’t understand a lot of its functioning, and how AVMs can affect that functioning. They can only tell what they know, and are reluctant to speculate when they don’t know.
I was very low-energy prior to and after my burst. My wife always remarks at how slowly I walked before the burst occurred. Keep searching for answers, and there may not be just one answer, but more than one thing, all acting together.
Being fatigued makes me irritable. If people say anything about it, I reply with the single finger salute.
I’m not on any medication, and I don’t believe I have sleep apnea…my parents say I sleep through the night. Sometimes I cope with the mental fatigue by just doing lots of things (like trips or long walks) just to bring the rest of my body to the same level of tiredness as my mind… it’s like, if my brain can’t feel as awake as my body does, I might as well just make them equally tired! Then at least I have a fun day out to account for my overall exhaustion, rather than just an overwhelming fatigue that is only in my mind. I’m at the point now where I realized I just will be fatigued no matter what, so I might as well have some fun first and let that tire me out!!
It kinda worked… I am exhausted this week, but at least it is both physical and mental because I spent last week on holidays, having to navigate a brand new city, figure out transit, speak another language, stay up late and do lots of outings, etc. etc. But at least I have something to show for my fatigue and exhaustion!