Why in the world do I get so exhausted sometimes and feel like I absolutely have to go to sleep. If I were at home today I would sleep ALL day. But I am at work. I hate feeling like this so bad!
Hi Melissa, I totally sympathise with you, my daughter does exactly the same thing and she is 4 years since her bleed and 2 1/2 years since her gamma knife radiation treatment. When she is not working she just goes with it and sleeps, not sure why, she also suffers with quite bad headaches too.
Take a read of the sleep nap group under 'groups'.
Fatigue is very normal, it's your brains way of recuperating and re-energising. Do you work full-time? Can your hours be reduced so that you can work around your fatigue? /p>
Not in the area that I work.We have a very small staff. Everyone is needed daily. I have been in the bed all weekend. Seems to be lifting, but still not ready to run a marathon or anything. Most of the time I go all week working and then crash on the weekend. It just caught me in the middle of the week this time. Hopefully this will be a better week.
I get this all the time Melissa...I think as AVMers we have gone through so much and its just really tiring...God bless!
I get this too, and have slept all afternoon.
It's just one of those things. Frustrating I know!
I totally can understand you. But it will get better.
Before surgery it was more like exhaustion or fatigue. After surgery it’s just sleepy. Weird.
I have the same issue. It can be a little frustrating sometimes. Prior to my embolization's, I had some fatigue however, now, its pretty intense. Its good that you find the time to rest, even if on the weekends, I find that if I ignore the fatigue, my brain starts to react, I see lights, things become foggy and I am extremely irritable. I think our brains take quite a beating, and from what I've read, rest allows your brain to heal, so maybe the fatigue is a way for your brain to let you know that it needs more time.
My only advice, try very hard to rest when your brain tells you too. Its hard to "catch up" on sleep, but whenever you have time to rest, you should. I haven't been as active with the group because I have had to make a lot of time for rest and initially I felt really guilty about it.
Best of wishes to you!
Happy resting! :-)
I am feeling much better now. I think part of the days I was truly tired and needed to sleep. The other days I think I was depressed. My father has been, well paranoid lately. Think he may be buying suboxone strips. According to my husband ( who has had several of his family members who were drug abusers ) he says that from his observations he believes he is buying extra strips from somewhere or something else to get him by until his next visit to his doctor that is prescribing them. Something that would probably be out of his system prior to his visits. He has always thought that if he had a prescription for something it was ok to take more than he should. He was addicted to vicoden. The strongest ones. He told me one day that he had taken as many as 30 a day. He got introuble with the law and is luck he is not in federal prison. We have to do something to stop all this tention in the house. My father deeded the house over to me so it is mine. He is on disability and is on a set income. I pay ALL the bills in the house and everything the concerns the house because it is in my name and I don't want my daddy paying anything, so he can save money. But unfortunately, this is not happening. I keep track of his checking account so I can see all the money he gets from the ATM machine. Make sure all his bills, like his cell phone, ect get payed. I do all his probation paperwork at the end of every month. They want to see what is coming and going out of your checking account, ect. His checking account has steadily gotten lower over the past months. He has had to pay lawyer fees and fines over the last few months, but that is his fault that he has them. He is the one that got in trouble, not me, or my husband, or my children. Can't take it too much longer. He keeps saying he is gonna find somewhere else to stay. There is no way that he could handle his bills, probation paperwork, checking account. He knows that and uses those statements to try and make me feel guity. Well I am tired of him trying to make me feel guilty, because it will not work anymore. I will not let him continue to "get" to me because it is obviosly affecting me. And I do not need that.
Hi Melissa.........here is my point of view:
It appears from your situation along with the AVM fatigue and challenges....your circumstances and life has certain things which is causing you more mental stress and it ends up in MOOD SWINGS. Please note that you going through mental stress may not imply you caused it......someone else may be the cause of it but how you deal with calming the storm so that it does not result in self harm is the context i am highlighting. When it comes to finances and money matters every persons case has its own personal flavor and is unique based on need and circumstances. Therefore I dont want to get into specifics but would like to hint you that it is better to talk out your emotions to the person who you think is causing you harm(mental stress or otherwise). The talking out may be by writing a surprise email to the person expressing all that u wanted but with tone of it being more of finding a solution than venting it out. Please do not expect things will turn out fine at the first attempt because sometimes when we put forth our thoughts others will at least start thinking on those lines and eventually it will have a chance to shape up in a positive direction.
With regards to ensuring we dont hurt ourselves and keep calm, please try this method it will help u out - "wherever you are standing sitting, sleeping, at the bus stop, at work , shopping mall, gym etc when u find u are a bit irritated and thoughts flowing haywire, try this breathing technique. "take a deep breath in at a slow pace and fill that inhaled air in your belly and after this exhale this air and release the inhaled air in your belly" - do this exercise constantly for 3 mins and see the magic work regarding releasing your stress levels. Parallely start using VIPASANA MEDITATION(please google the meaning of it) and start using it anywhere anytime wherever you are standing sitting, sleeping, at the bus stop, at work , shopping mall, gym etc .
Please do try out these, it may help u discover YOUR OWN answers.
Sounds like you have an awful lot on your plate. I had an embolization in March and craniotomy Juky 7th. Then I developed a staph infection and they had to open the incision again and clean it all out. I am now home again with IV antibiotics until 9/2.
I, too, get tired and sleepy. I think some of it comes from the procedures and then also the anesthesia. I have just been letting myself nap when I need to and my recliner is my new “place.” I have also noticed that if I do too much one day, then the next day I’m wiped out and have to rest a lot. I heard somewhere that anesthesia has about the same effect on the body as running a marathon. I believe it.
Take care no try not to get overtired so you avoid any kind of relapses. Good luck with everything.
I have no advice but comradery, I feel exactly the same way too. I have faith this will pass and our energy will return.
I am new here, so I don’t know what stage of the process you are in. I have a Dura AVM and just completed surgeries 3weeks ago. I was tired for the full year prior to the surgery. Now I feel like I’ve been hit by a truck.
I empathize ,it’s disappointing to be this tired. I try to look at it as sleep is important to help my body heal.
Hi. I'm exactly the same. I work full time but over four longer days. I work two, have a rest day and then work the next two days. Most of the time this gets me though OK but sometimes it still catches up with me. I tend to do very little on the day off and for at least one day at the weekend. I certainly know about it if I try to do very much on these off days.
Sometimes I have fazes where I need to spend virtually an entire day asleep to "catch up". Fighting it isn't worth it. I know I can't think straight, drop things, hurt myself etc etc at these times so I just have to go with it and it's back to bed for a bit.
The video on flooding I found very helpful, especially to explain how things like being in supermarkets can have such a profound effect, friends tend to understand more when they've watched it.
On a positive note, I only sleep one day at a time now to reboot. Two years ago, I could sleep for 9 days at a time and still feel exhausted.
I’m in the same boat. It will be one year on 9/8 since I had a craniotomy. I used to work out and run every day. I don’t like being told I can’t do something, but I’ve learned to listen to my body. I know it’s frustrating, but remember your brain has been through a lot. I think keeping a positive attitude will help keep you going. Give yourself time to heal and be patient. Best of luck!!