we were wondering what happens if you have a bleed, sounds daft but how would we know if one was going on
we have never been told anything and are jumping at every wee thing that feels different in my wife’s head
Andrew,
I hope this AVM info from the Mayo Clinic’s web site will be useful to you.
When bleeding into the brain occurs, signs and symptoms can be similar to a stroke and may include:
- Sudden, severe headache
- Weakness or numbness
- Vision loss
- Difficulty speaking
- Inability to understand others
- Severe unsteadiness
http://www.mayoclinic.com/health/brain-avm/DS01126/DSECTION=symptoms
My husband has an AVM, and I know how getting too anxious can make everything seem like a symptom. I think I tend to be overly careful, but it gives me a little peace of mind to do a “neuro check” (having him squeeze my fingers, press with his feet, smile, etc.) when some little thing is bothering us but it’s too minor to be worth calling a doctor. If everything seems strong and equal on both sides, we just keep an eye on whatever was worrying us and call the doctor if it persists or gets worse.
I wonder, if your doctor doesn’t have time to talk with you and explain things, maybe the nurse will talk with you on the phone? Or if your insurance will allow it, maybe you could consider visiting a second doctor who might be more forthcoming.
I wish you and your wife the best.
Jorie
Andrew,
I am sure each experience is different but I do think that an overall experience is the worst headache of your life and vomitting.
Personally, I have 4 anuerisms rupture at once so I my experience may be extreme and I did not lose consciousness (How I wished I would have BUT they say that may have been what saved me, because they can’t explain how I survived 4 like I did and the massive amount of blood I had on my brain.
I felt like someone hit me in the head with a sledge hammer. I lost sight for a brief time but my AVM was very large and in my temporal lobe. I started to vomit almost immediately and it was the most projectile vomit I have ever seen (compared to Linda Blair in the movie “The Exorcist” (no kidding). I then collapsed on the bathroom floor after I made it there and had a vey sharp pain go down the back of my neck (what the Dr’s called the “Death Grip”) and felt helpless for a while and could not call for help but at a whisper. The pain was very intense.
If your wife has any feeling of this being the worst headache ever, it would probably be a good thing to get it checked out, just to be on the safe side.
I willalso say that if she feels a very sharp stabbing pain that she should probably get checked as well because that it what I felt when the first anuerism ruptured on early Saturday morning, I just thought that I had a cold and a hangover when in reality, I had ruptured and was already bleeding when the other 3 ruptured early Sunday afternoon. So I am proof that you can still be walking around but bleeding to death. I felt horrible but just thought my cold was getting worse.
I know this is hard but you guys go with your gut, if she feels that bad and you look at her and she does not look good, probably a good idea to go and be safe than to not go and it really be something.
After I got home from the hospital, every time I had a headache and threw up, I was scared to death that I had ruptured again and even after going through it once, it is not always easy to tell because you have the previous scar tissue and are more sensitive to things and the pain afterwards. but I have come to the point where I do not think that aduring every headache with vomitting .
I hope this helps you a little
Could be any number of things. For me, it started with nausea and a very sudden headache. For others, it has been sudden loss or blurring of vision, numbness or tingling in various parts of the body, difficutly speaking, seizure activity, complete loss of consciousness, and so on. Generally speaking, just about anything that is not “normal” could be a result of a bleed. In looking at some of the information on your other posts, it looks like your wife’s AVM is somewhere on the left side of her brain. Mine wwas in my left temporal lobe and was a little smaller than the size of a golf ball. One of the things that caused the most frequent and most odd symptoms were various types of partial seizures that caused several uncofortable, and sometimes scary sensations. The seizures themselves were not triggered specifically by the AVM physically bleeding at the time, but due to swelling around nerves and/or damage to the brain tissue that resulted in seizures.
If you have not already done so, you may want to take a look online and do some research on different types of seizures and the symptoms related to them. While there is no guarantee, this may match up pretty closely to some of the things your wife is experiencing.
Andrew,
The day before we found out about my husband’s AVM/bleed he “mis-spoke” a couple of times during that day, saying the wrong word for the situation, we had had a big canoe trip the day before and we contributed the wrong word situation to being tired. The next morning early getting ready for work, he asked if I had ever had a headache on the side of my head (left in particular). I wanted to go to the doc then but he wanted to take advil and go to work which he did. He feels his “burst” on the way to work that morning, he said at one point he felt like he was “floating on a cloud” that scared me to death, called me a couple hours later from work, saying his co-workers were saying he was using the wrong words again. We went to the ER and they first said aneurysm, and immediately helicoptered him to the University of Virginia about an hour away immediately putting him in Neuro ICU. The next day after the agram they confirmed AVM that had ruptured. He was very fortunate it was on the left temporal area close to the outside of his brain, they let it “cool” from the bleed and did a craniotomy the following week. He did loose the top quarter outside vision in both eyes, right eye bothers him more regarding the loss, I’m assuming because the left is on the “nose” side and really do not use that, if you know what I mean. He has had 5 grand mal seizures since, mostly do to weaning off his meds and changing. We have had a terrible time coming up with a med that does not wipe him out, making him feel like a mental patient is how he puts it. He was on Dilantin from the hospital, then went to Tegratol ER, then Depakote ER, he is now in the process of weaning off of Depakote ER and weaning on Keppra. It’s only been a week, so we pray it works for him.
We hope and pray everything works out well for you both!!! This website has been a blessing for me!
Marie
Well it seems everyone’s stories are quite different. For me, mine was all of a sudden. I don’t really remember any odd feelings prior to it. I’m sure I had a headache the day, but nothing out of the ordinary (as I was getting them nearly everyday), and I think I remember feeling sick in the stomach, but sometimes I wonder if I just made that up - that’s how vague it is to me. When the hemorrhage actually occurred, all I remember, and again very vaguely, was everything just all of a sudden started spinning around 100mph and I ran downstairs to tell someone, and I then think I vomited in the toilet (and obviously passed out) and that’s all.
Like you are, I would just keep being extremely precautious over any signs that could be a bleed. I hope the other posters helped you a lot more since I couldn’t really foretell mine.
what’s really weird is I had all those symptoms of a bleed when I had my two episodes last year that lead me to go to the Neurologist. Supposedly my avm that they found had never bled. It’s a strange coincidence I guess that I had the numbness, tingling, blurred vision, confusion, nasty headache, vomiting, and slurred speech and this was not a result of a bleed but certainly a symptom that sent me to the Docs to figure out what the heck was going on. The result of mri, an AVM found on my left parietal lobe but no bleed.
Rachel
The doctor told me that the avm can steal blood from the surrounding brain and that can cause symptoms.
I bled for sure 12-12-08, it led to a stroke. Headache went away in two days, then I felt sick to my stomach, started vomiting and I knew I had to get to the hospital because I was feeling like I was going to pass out. I believe and the doctors believe that I bled before, but it didn’t lead to a stroke so it wasn’t diagnosed. A headache that movement makes worst is not good, like bending down. They can do a CT scan to detect a bleed, but an ex-ray is not enough. My bleed stopped on its own.
Peace,
Ameenah
My daugther compained of a headache on sunday august 17,2008 on wednesday august 20,2008 her headache came back she was at a concert at blossom muisic center was rushed to the hospital found out she had and AVM that bleed out. She had to undergo surgery to stop the bleed. She is now schedualed for Gamma knife on July 20. When I asked her how her headache flet the first time she said it felt like some one was lightly pounding on her head on wednesday she said it flet like her head was going to explode. She now wont take anything when she has a slight headache just to be on the safe side she said because she knows her Avm is still active. I hope this helps you a little.
Andrew,
Seems like you have a wealth of info to look through already from others - but my story is on my page - very similar to the others who have replied to you. It was the worst headache of my life and I had no previous symptoms. Woke up in the morning and BOOM it hit me.
Good luck…
Feel free to contact me with any other questions.
Carolyn
Keppra is WONDERFUL!! I had the same problem. Good luck to you!
Marie Hudson said:
Andrew,
The day before we found out about my husband’s AVM/bleed he “mis-spoke” a couple of times during that day, saying the wrong word for the situation, we had had a big canoe trip the day before and we contributed the wrong word situation to being tired. The next morning early getting ready for work, he asked if I had ever had a headache on the side of my head (left in particular). I wanted to go to the doc then but he wanted to take advil and go to work which he did. He feels his “burst” on the way to work that morning, he said at one point he felt like he was “floating on a cloud” that scared me to death, called me a couple hours later from work, saying his co-workers were saying he was using the wrong words again. We went to the ER and they first said aneurysm, and immediately helicoptered him to the University of Virginia about an hour away immediately putting him in Neuro ICU. The next day after the agram they confirmed AVM that had ruptured. He was very fortunate it was on the left temporal area close to the outside of his brain, they let it “cool” from the bleed and did a craniotomy the following week. He did loose the top quarter outside vision in both eyes, right eye bothers him more regarding the loss, I’m assuming because the left is on the “nose” side and really do not use that, if you know what I mean. He has had 5 grand mal seizures since, mostly do to weaning off his meds and changing. We have had a terrible time coming up with a med that does not wipe him out, making him feel like a mental patient is how he puts it. He was on Dilantin from the hospital, then went to Tegratol ER, then Depakote ER, he is now in the process of weaning off of Depakote ER and weaning on Keppra. It’s only been a week, so we pray it works for him.
We hope and pray everything works out well for you both!!! This website has been a blessing for me!
Marie
My 3 year old son had his AVM rupture this past december in his head. He complained of a pain in his head and within minutes was unconscious. It happened in minutes for him. I guess according to his neurosurgeon., my sons was so big that when it burst and started to bleed, there was so much blood that he just went under. From what I understand if your AVM starts to bleed it’s like the worst pain in your head imaginable. Thats what his doctor told us. Good Luck to the both of you.
When we asked my daughters doctors how we would know if she was having a hemorrhage they said “oh, you’ll KNOW.” But we didn’t know exactly what that meant. When Lizzie had her hemorrhage, she called me in a panic saying that her head felt like it was being stabbed by a thousand knives. I was teaching a lesson at a nearby school, so I told her to take some tylenol and that I would rush home…about a 15 minute drive. I called our doctor and his nurse said his instructions were to take her to the emergency room. By then her best friend had called me (luckily she was there with Lizzie when it happened) and said that Lizzie was throwing up. I told her to help Lizzie to the couch and to put a cool cloth on her forehead. Then asked her to get a pillow and blanket for Lizzie when we put her in the back seat of the car to take her to the ER. A few minutes later her friend called again to say that lizzie wasn’t making any sense and she was really scared. By that time I was about 5 minutes away so I told her just to stay with Liz and to call me if anything else happened. When I got in the door I ran to her, and by that time she was unconscious, and I could not arouse her, and her arms were flailing about. I immediately called 911. So for her, it was an immediate excruciating pain with a rapid deterioration into unconsciousness. Just stay ever vigilant, but not afraid to go on with normal life. (Cut out any NSAIDs as they thin the blood and could make a bleed worse, and stay away from roller coasters and other adrenaline raising activities that could cause the blood pressure to go up.
I have a 4 year old that had a stroke before the diagnosis and about a year after emblization she bleed. For both bleedings she complain of headache had nauseas and vomited. I guess your wife should be aware of any of these symptoms and run to the er.
In my case, I was terribly, terribly sick a few days prior to the rupture (not sure if that’s connected or not, but, I think it may have been), and then the day that the AVM burst, I had an excruciating headache. I kept wandering around, and screaming about the pain. Then I let out a loud scream and passed out, after which I was rushed to the hospital, and things were tended to.
Good luck to you and your wife, and if you need to talk, I’m here for you.
my first time one of my avm bleed(i dont know which one) but i was asleep and had a hard time waking up..but when i did my whole right side was numb..i couldnt move it at all...i some how got up and over to the dresser and hung my head down and shook it quite a few times and my feeling started to come back...the second time i was washing dishes and heard the most biggest bang(sounded like a shoot gun) and i started to feal week so i went to sit down and ended up falling of the chair,,i felt my heart beat so so slow..that i started to pat my chest and pray...it started beating faster after a few min..and i was weak and shakey.. so i took a hot shower and went to sleep iwas fine the next day...i never had a headache or anything..but i have had migrains all my life that when i was going thru my young teens i would get them so bad i couldnt see..now when i get them i throw up...but i didnt get any nerogical damage that i know of...maybe axietys and forgetfulness or cant concentrate to long..but both mine have bleed..and they are still growing and active...one is on my pons which is only 9mm now and one deep within the left side near the white matter/or grey..anyways its 14mm now...maybe mine wasnt big when the bleed and i have small bleeds that do not hurt me..i dont know i am soon to see a neroloogist about them...but i never had a headache with them thats weird...
Hi Andrew,
JH gave you the best possible answer. There is a mnemonic device to remember the stroke symptoms, it is called FAST.
F- stands for Facial weakness (check if the person can smile without their eyes or mouth dropping)
A- stands for Arm weakness ( check if the person can hold both arms successfully)
S- stands for Speech difficulty
T- stands for Time (time to call for emergency help)
Saw that in an episode of House MD and thought it was really great to remember.
Hope it helps!
Its so frustrating and scary...with my brother, we quickly learned to follow up with any signs of lethargy, nausea, pressure in his head and of course weakness. One thing we also found with him, in his last 2 bleeds, is that he smelled something burning, like the smell of burning rubber he described it. I feel you, b/c even in the hospital I was constantly on top of the nurses and doctors for any little sign that I noticed....I say better safe than sorry...I happen to be overly cautious at this point.