So I’ve been reading a lot of these discussions and they have mentioned fatigue a lot. Is this just after a procedure is done. I have dealt with extreme fatigue. I was always told it was just because I was a teenager but I feel that I am more tired than most teenagers. Is this a symptom of the AVM itself? I get so confused because fatigue seems to be a symptom of everything haha. Also, for those who have had a procedure many years ago, do you still have fatigue? I realize a procedure can cause fatigue but when does this go away? I realize this may be different for different people. I just want to hear personal stories. Thanks!
Hi Alyssa!
For me, my fatigue started slowly after I got diagnosed with the AVM. I had the worse headache of my life on Nov. 9th and after being rushed to a bigger hospital after a CT Scan, discovered “seepage” of blood from the AVM. In the weeks following I believed my fatigue was due to the extreme headaches I was still suffering, however once those headaches subsided I started to notice random bouts of exhaustion would come on without warning. I had the cyberknife procedure a couple days ago and I’m slowly starting to notice fatigue creeping back although I’m not sure whether or not to blame that on the procedure yet. I think fatigue could potentially be a symptom, at least it has for me. Interesting topic to explore…hopefully more people on here will share their stories and help you out!
I wish you all the best! Keep us updated on how you are doing!
Keith
Thanks Keith!
Fatigue is just so confusing! As I said it seems to be a symptom of everything haha. I will definitely keep everyone informed. Hopefully I will find out soon.
Alyssa
Keith S said:
Hi Alyssa!
For me, my fatigue started slowly after I got diagnosed with the AVM. I had the worse headache of my life on Nov. 9th and after being rushed to a bigger hospital after a CT Scan, discovered “seepage” of blood from the AVM. In the weeks following I believed my fatigue was due to the extreme headaches I was still suffering, however once those headaches subsided I started to notice random bouts of exhaustion would come on without warning. I had the cyberknife procedure a couple days ago and I’m slowly starting to notice fatigue creeping back although I’m not sure whether or not to blame that on the procedure yet. I think fatigue could potentially be a symptom, at least it has for me. Interesting topic to explore…hopefully more people on here will share their stories and help you out!
I wish you all the best! Keep us updated on how you are doing!
Keith
I had embo on Mar 17 and surgery on Mar 19. I get so easily tired now, it is now Friday afternoon and I feel a lot more tired than I usually do after a +90 hour working week. And I have probably worked 15 hrs this week and slept 14 hrs per night - so yes, I deal with extreme fatigue. I did not before surgery so I am sure that it is the procedure. The doctor told me it is quite normal and can last for months…
My avm was found when I was in my teens (are you in your teens?) and was operated on then. Now, x decades on (!) I still have fatigue. I wish I knew then what I knew now. Your brain needs more rest, it works differently, and, with me, noise is very tiring. There are some good books out there and fatigue is a recognised part of having had surgery.
Is there anything in particular that you’ve noticed that tires you more?
All the best
flower
I am in my teens. I just feel like I am just tired all the time. I cannot remember when I had energy. No matter how much or how little sleep I get. I have not even had any procedures yet. Now that you mention it though, I wonder if noise tires me. I never really thought of that before. Maybe I will try to pay more attention to when I get extremely tired. Thanks for the suggestion.
Alyssa
flower said:
My avm was found when I was in my teens (are you in your teens?) and was operated on then. Now, x decades on (!) I still have fatigue. I wish I knew then what I knew now. Your brain needs more rest, it works differently, and, with me, noise is very tiring. There are some good books out there and fatigue is a recognised part of having had surgery.
Is there anything in particular that you’ve noticed that tires you more?
All the best
flower
I am 46, played college baseball, work outside and always have been in good shape. Since my seizure last May and my surgery in July I am fatigued all the time. I have been working back outside since October but even if I sleep 9 or 10 hours a day (I am suppose to get 11 to 12) I will be exhausted. If I don’t get enough good sleep during the week I will end up sleeping for 15 hours straight on Saturday. My doctors tell me that it will take awhile to get my stamina back but it sucks. You just have to be patient and it will eventually get better. Hang in there, every time it frustrates me I just remember thats its a lot better than laying in ICU for 9 days.
Take care
Alyssa Walker said:
I am in my teens. I just feel like I am just tired all the time. I cannot remember when I had energy. No matter how much or how little sleep I get. I have not even had any procedures yet. Now that you mention it though, I wonder if noise tires me. I never really thought of that before. Maybe I will try to pay more attention to when I get extremely tired. Thanks for the suggestion. Glad if I’ve been of any help! Maybe keep a diary of when you are tired, or tireder, or totally worn out tired, and what you’ve been doing before?
Feel free to drop me a hello.
flower
Alyssaflower said:
My avm was found when I was in my teens (are you in your teens?) and was operated on then. Now, x decades on (!) I still have fatigue. I wish I knew then what I knew now. Your brain needs more rest, it works differently, and, with me, noise is very tiring. There are some good books out there and fatigue is a recognised part of having had surgery.
Is there anything in particular that you’ve noticed that tires you more?
All the best
flower
Hi Alyssa, I’ve noticed that I sleep a lot harder than I used to. I use to be a light sleeper.
Since I had GK, I’ve noticed my sleep pattern changed. I was very tired about a week after GK, I mean exhausted. The exhaustion lasted about two weeks, I still sleep hard.
I am 51 now, my avm bleed and led to a stroke when I was 49. I had GK July 09.
I did a lot in my young years, but I never had a lot of energy.
My lack of energy might have been because of the avm, I’m not sure.
Nothing I have ever known can compare to the exhaustion I had after GK.
Peace,
Ameenah
I just turned 14 when I had my surgery. I think it was the medicine that made me more tired than anything. I don’t know if the fatigue that went away or if I just got used to it. But at least for me it got a lot better once I was taken off of seizure medicine. (I took Dilantin, don’t know if that helps you). By the time I was 16, I was playing football and baseball again. When I went to college, my first year I played football and the next three years I worked full time while going to school so for me at least it definitely got better.
If you are taking medicine that makes you drowsy, ask your doctor if you can take it at one time in the day instead of multiple times. When I was taking Dilantin, I was supposed to take it at 4x’s throughout the day. I could never stay awake in school. When I told the doctor about it he said it was fine if i took it at night with dinner.
My surgery was a full 4 months ago and I still experience serious fatigue. Guess we just gotta hang in there!! BLAH
It’s been just about 3 years since mine ruptured and was removed, and I still have fatigue, at least I think I do lol. I’m always tired, and can never do too much in one day.
Hello! My name is Traci and my son Joey has a spinal avm he is 13 complains of being tired all the time in two weeks we are going for test to see why he is so tired but now I feel it just may be related to avm. He gets tired alot during school and naps, luckly for us the school knows his problems and just lets him sleep. He has slept up to 20 hours in one day and mostly can sleep 12 to 14 hrs and still complain. He has had surgery in Dec 2009 and 3 angiograms since they found it in early dec 2009. I too hoped that it would get better but it has gotton worse, will post results of test after we come back. Traci
Hi Alyssa,
My AVM hemorrhaged 5 years ago. I had radiation to treat my AVM. Actually it was stereotactic radiosurgery that I received 01/2006. Firstly, the radiation can cause great fatigue (and other unexpected side effects!). But I have now learned from a stroke neurologist that the fatigue can, yes, be caused by the AVM itself. He told me that after an insult to your brain, where neuronal connections have been injured, your brain has to work extra hard to do even some of the normal activities because your cognitive efficiency (how fast you can respond,etc) is slower now. The brain is the hardest working organ in our bodies and now it takes longer to work, multitask, etc. and you can get very tired easily. I had to resign my full-time position because I could not do it as easily and I ran my body down. The Dr. will now only allow me to work part-time; and he is right. I teach psychology at a community college. Oh yes, and I also have to get alot of sleep to rejuvenate so I can take on each day. Good luck to you, my dear. You’ll soon see the value in keeping yourself rested and non-stressed.
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Alyssa: Yes I had three embos last year and my stamina is not what it used to be. After procedures we retain the anesthesia in our system. Just “give it” to it…I mean when you need rest, and don’t worry or be concerned about what others days. As a teen you need more rest to begin with; I have four of them! AS I said, when you need rest rest, I don’t know what procedures or treatments you have had but I came to the conclusion in my case, while still in the middle of treatmnet its okay to be this way. Have a good day…xoxo Mare
Alyssa, I am constantly exhausted and falling asleep. Part of it is due to to my medication, though; two of them are morphine-based pain killers.
Connie T said:
Alyssa, I am constantly exhausted and falling asleep. Part of it is due to to my medication, though; two of them are morphine-based pain killers.
Hi guys,
I was wondering how you cope with your fatigue, what you say to your friends / family and if they are able to accommodate your fatigue?
flower
I’ve been tested for anemia and it has come up negative.
Jenny said:
It is a common symptom of anemia as well or just an iron deficiancy which is very common in teenage girls. Fatigue for me as greatly improved in the last 2 years. FYI!
Hi Alyssa. I had my surgery almost 20 years ago (in 1990), and I deal with fatigue. I tire very easily, and have a point that I hit in the day where I find it hard to function–thinking slows, it’s difficult to make sense of things, being in a loud room can wear me out and can be difficult to cope with… I found it very difficult to make it through a school day (way back when in high school). I was absolutely exhausted by the time it was through. I’ve been told that it was all as a result of the surgery that I had done all those years ago, and the consequential damage that was done to my brain. Fatigue definitely seems to go along with things… and idk if it is something that goes away. As I said, I’ve been dealing with it for 20 years now, so… but that might be something to ask a doctor about… maybe there is something that can be done to help out with it…