Hi I had my AVM removed September 11, 2017 (10 months ago) something I have noticed is I am always tired. And when I say tired I mean so tired to the point it makes me depressed… I am able to push through the day and get the things I need to do done but I am literally having to force myself and I feel like I am literally in a brain fog and almost feel like I’m in a dream. I have been feeling this feeling for a while but I feel like it’s even worse as time goes by. I’ve lost a lot of my motivation. I don’t know if this is because I am still healing but I feel like this feeling should have somewhat gotten better since it’s been 10 months however, I feel like it has gotten worse. I’m not on anti seizure medication so I can’t say it’s my body reacting to it. Also, I’m not on any other medication. If you have any tips or have felt/feel the same way please reach out. Also, if you know someone who feels this way please have them reach out to me. Thank you! -Corrina
I had a lot of fatigue for months after my bleed/embolization. I was told that that was completely normal as the brain was healing and then the large amounts of effort my body and brain was having to put into previously automatic activities, even things like focusing on a movie or brushing my teeth. My AVM was in the cerebellum so that caused a lot of coordination difficulties, including subtle ones with my eyes.
That said, as bad as it was, it wasn’t actually in my top three worst fatigue episodes. Just the longest. But my others were during cancer treatment (thirty-some years ago), severe anemia to the point of needing IV iron, and just last month, recovering from pneumonia. My point is that there are a lot of things that can cause fatigue. I had anemia off and on for years before the blood work caught it at the right time. Thyroid issues, silent bladder infections, sleep apnea - you get the picture. If you haven’t talked to a doctor it might be worth considering if there is something else going on.
As far as dealing with it, yeah. The brain fog after the stroke seemed to last forever. I couldn’t concentrate on anything, especially reading, and I think that made me somewhat depressed. A couple of things that really helped: one was when I started going to classes at the Y. I called them the old lady classes, because I was usually (not always!) the youngest there. I started with a chair exercise class which was great because my balance was terrible. Then I started doing the arthritis/gentle water exercise class.
The other thing that helped, weirdly enough, was listening to podcasts instead of reading. I found my favorites, and listened to them while I was lying down “napping”. I had to back up a lot and re-listen, sometimes over and over, because I’d drift off or lose my place. Over time I felt that they were really helping me mentally. I definitely couldn’t listen and do anything else around the house or walking. Even when I started driving I couldn’t have the radio on or anyone talking to me - just too stressful.
So, Corrina, I hope you find some ways of dealing with this. It will get better. I did feel more normal over time, even though it was way slower than I wanted it to be.
I had a bleed May 2016 and Gamma knife November 2016 and I completely understand the tired. Most evenings I am completely done now, but that is much better than after the bleed and my fatigue slowly improved for about a year and a half. I have plateaued and haven’t really noticed much change these last few months. The tiredness seems common with anything brain related. Take Care, John/
Thank you so much for your reply! I do exercise and it gives me something to do and I always listen to podcasts during my workouts. I believe it’s better to educate myself then to entertain myself with music. Yes I do love music but nothing is better then learning. I guess it’s just something I’ll hopefully over come in time because I do feel like I’m literally in a dream haha if that makes any sense!!? Also, I’m sorry that you had to experience so many things with your health but I bet you’re very wise and have learned so much from those experiences, in both bad ways and good! Thank you again so much for reaching out to me ️
Thank you for your reply, have you used any techniques to try and calm the brain such as guided meditations on YouTube, yoga, etc? I know guided meditations have helped me
I’ve started to do some mindful meditation, the big thing for me is exercise. It energizes me but I do most of it early in the morning, usually either swimming, running or gym workouts that combine weights and cardio. I try to bike ride many days during the week as well, this I often do after supper and it gives me a boost for a while but by about 8:00 pm I’m about done, and usually in bed about 9:00. The days I don’t exercise, I find I’m far more tired much earlier.
My AVM bleed, and removal were in 2002, and yes
I had tons of fatigue. For me the first year was the worst,
and then slow, slow improvements. I would nap at least
once a day, and go to bed early. Wife and I went to a
movie once with our daughter, and it lasted until close to
midnight. What torture it was to stay awake and function
under the awful fatigue!
But today is different, sixteen years later! Normally,
I still go to bed early, but I can stay up if I must.
A year ago I stayed up to 3:30 AM,
and it was OK. Not like torture anyway!
You will get better also with time, and I hope tiredness
improves more quickly for you than it did for me.
Hey Corrina, your story sounds somewhat similar to mine. I had a non-ruptured right frontal lobe AVM that was resected in Dec 2017. I have struggled SO much with lethargy, brain fog and fatigue. I am a nurse and a new mom to a now 10 month old and so it’d hard ot figure out what causes so much fatigue. Now at 6 months post-op, I do feel like my fatigue is decreasing. I am on Zoloft for depression and in counseling to work through the trauma of what we have gone through. Slowly slowly I am seeing improvement but I still get down and frustrated over my distractability and fatigue. Getting up in the morning is my least favorite thing int he whole world. If you feel like it is getting worse, I would encourage you to talk to your neurosurgeon. As fatigue is extremely common in TBI, concussion, surgeries, it also I believe should improved even just slightly over time. Hope this helps! I’m here with you. Baby steps.
I Just get really frustrated when people are) don’t understand my tiredness or ignore it, persay. I get pretty tired at night after a long day, like you would expect but I don’t remember ever getting this tired before. So it’s really frustrating when people who couldn’t understand say like, oh just tough it out, you’re fine.
Sorry to hear you are having a hard time with fatigue. I had a bleed Nov 14 and an AVM was found in my cerebellum. I had an embolization in July 15 which resulted in a Stroke and then SRS in March 17.
I did ALOT of work on pacing with an occupational therapist to manage my fatigue after my Stroke.
I had to come to terms with the fact that some things I couldnt do as much as I did before e.g hoovering and dusting. I made a diary and a schedule to break down tasks/jobs. Now I know what makes me tired and can change things accordingly.
Yes my life has changed completely but I have come to terms with that.
I moved to Abu Dhabi from UK last August and the Drs here recommended I take Amantadine for fatigue. It is normally used for Parkinsons but I take a really small dose which has helped.
Fatigue is a weird thing. I took sleeping tablets for a while because I was having trouble sleeping.
Corine, thank you for reaching out!
Fatigue and pure exhaustion have been with me for 25 years, since my emergency craniotomy for a ruptured, cerebellar AVM. Do not dispair, however! I remember how uterly tired and listless I was post-op and for months. Others just do not get how disruptive fatigue can be! I felt like a useless blob! EVERYTHING was an effort! But, like you, I was determined to improve. I wrote down all of my symtoms and then wrote down all the things I could do to improve them. Some ideas were of benefit to multiple symptoms. Then, I wrote out my “plan of action”, and began using it. Try it. Start with a few, easy-to-attain goals, giving yourself adequate time in which to achieve each. When the goal is achieved, make a “check mark” next to it, so you can see what you have accomplished. (This feedback was more important than you may think.). A few years later I was dealing with fibromyalgia, so I am still using the adaptations I uncovered in those earlier days. Others may not understand what is VERY REAL to you, but someday each of them will! (Also, have you taken a family member or friend with you to a neurologist appointment? Sometimes it helps when they hear from the professional how common and debilitating profound fatigue can be.). Another “also”…The brain fog maybe due to the lack of deep sleep and/or depression. Be sure have that explored. In the mean time, get the rest your brain and body need. It is not a waste of time, even though is sure seems like it, huh? I will follow your journey…