Do you understand your fatigue?

Dear all,

I am a 27 yo patient who suffered a bleed in october 2021 (occipital lobe) and whose avm has been removed one month ago.

Without any surprise, a major problem I’m facing is the « neurological fatigue », and as many of you know, this kind of awful fatigue that stresses your brain and makes you feel sick.

I know these traumas are recent in my case (and things will get better with time and rest) but i wanted to know if some of you had noticed a relation between your neurological fatigue and some activities.

Let me explain : I have the feeling that I really have rough days (kind of fatigue that makes me botte sick and depressed) after activities that specially requires visual efforts (quite normal regarding the location of my avm). For instance, i just had 3 awful days but idk if it is related to my general activities (walking, speaking with my friends…) or specifically related to : 1) taking a train (looking a landscape at a high speed) 2) playing table tennis (following the ball with my eyes) 3) being in vast spaces or rooms with a lot of light…

Have you ever notice such a corrélation ?? ( i mean of course there is one, but what i mean is : can a little of these activities with visual stimulation drive me THIS sick ?

Thank you in advance!!


Im just going to tell u of my experience after one month and starting vestibular therapy. I felt like i started it too early. They worked my eyes with my hands alot! Id go out in the car and be sick. Id be so sick i could barely get off the couch for three days some weeks. It was very awful. Just the ride two and from Was enough. Then the therapy. So i think yes what u are going thru is very normal. I know some of the different ones on this site will agree for sure. Its very early in your recovery too, so yes definately it will be better. I had a craineotomy December 9, 2022. So about 4 mths now. Just in the last 2 weeks ive had so many good changes. I was able to drive last week and i honestly felt like i had never had anything happen to me. That was so wonderful i wanted to just keep driving. I came home and slept for an hour. It does get better!

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I have had one of three cerebral AVMs removed in 2013. I also had a benign parasagittal tumor partially removed in 1998 in the occipital-parietal area of my brain followed by gamma knife 3 months post-surgery. It took me 2 full years to recover from the gamma knife with all the symptoms you have. I recovered from the subsequent AVM surgery in 3 months. My gamma knife Drs at USC Norris Cancer Institute pooo-pooed all my symptoms - told me I was lucky I didn’t have cancer, but I was horribly fatigued, had headaches I never suffered prior and had difficulty in spatial visualization. My psychologist ordered a neuropsychological exam which tests for cognitive deficits. There were only slight deficits, but enough to cause some problems in areas. Like I said, they resolved after 2 years of being on disability. Hang in there and maybe go to a psychologist and get tested.

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@Benji713 I had a massive stroke due to blood clots which were all over my brain but the stroke impacted my left side .
I was paralyzed and went into coma.
Once I woke up and got home I couldn’t even watch regular tv. The only thing I could watch was the old movie channel that played black and white movies.

I worked in trading and had to look at multiple screens, plus work in nosy environment.

I sometimes would be so tired my husband would wake me up to feed me so I could take me meds and I would fall asleep with toast still in my hands.

Other days my head would hurt so much he would have to tell the gardeners to stop using their blowers or ask our very nosy neighbors to stop arguing in front of the house which is next to back of our house.

Eventually I started to watch color tv again. But even 11 years post stroke and my first Angio/embolism I can’t watch super fast moving shows.

I do feel like I get nauseous easier since.
My neuros all said for me to listen to my body and if I felt tired to rest etc.

I did try against drs orders to go back to work but I just couldn’t do it .

Zofran is an anti nausea drug my drs have prescribed that melts under the tongue that helps as long you take it before you vomit.

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I suppose I missed this thread before, but even almost two years after my bleed - from time to time I get this fairly overwhelming fatigue almost out of nowhere.

When I first came out - it was similar to everyone else, I’d just almost fall out & fall asleep after even some activity

This year tho, I don’t know what gives - the heat seems to bring it on fairly bad, which kinda is a bummer since that’s what I work in most days. I was doing a lot better with being out in the heat last summer - oh well, I’ll just keep closer eye on myself

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