It's been over a week and i'm still freaking out

on the 19th of december i checked into the neurology icu after having found that i was bleeding from my avm. it happened almost like the first total numbness on one side. it's been 3 years since my last bleed so i don't remember in much detail what it was like so for some reason this one scares me more. i have panic disorder as well which really doesn't help. the thing that is really getting me is they keep saying things like "you're dizzy, that's not good go to the ER and get looked at" all the er says is "you're ct hasn't changed since the 19th" i mean that made me feel better at the time but that was 2 days ago. and it feels more like. hmmmm rocking on a ship it's not like a spinning dizzy, it doesn't bother my eyes just my balance, say when i bend over or lay down. i'd love to blame my pain pills or my motoperol aka: lopressor but it stuck around when i stopped them for 24 hours. it just comes and goes for no reason. it scares me cause i don't know if it's a warning sign or something i'm just going to have to live with forever or just until my bleed is cleaned up.

Hiya Michael. I know it’s so, so scary but try really hard to think about your symptoms and consider if it could be another condition other than a bleed. Have you considered the thought that it might be an ear infection for example. Things other than an AVM can affect you too. Never ever worry that the er is fed up,with you and be persistent if you have explored all other options with your primary doc. Having a panic disorder must be hell to live with but we are all with you and we all understand your pain and worry. I, too, used to panic that it was my AVM all the time but have calmed down a bit now, but it still scares me a lot so I understand your fear. The one ray of sunshine is that the scan shows your AVM has not changed since the last time which is wonderful news for you. Take heart from that and keep posting your progress, we are all watching what happens and how we can best help. Love and hugs of reassurance Pauline xxxxxx

Hi hinny, im so sorry to hear you are suffering. I had The ‘dizzy’ sensation you are describing after my bleed, it lasted for several weeks. Getting less intense over time. T did eventuallt go away by itself. I dont want you to ignore it, but i would maybe keep a journal describing how it feels day to day and id there is a sudden or major change get it checked out. Try to relax, get plenty of rest and give your brain a chance to recocer. Good luck my friends x

Michael, my daughter is two months post rupture (her first) with similar symptoms as you have. The only lingering symptom she gets occasionally is dizziness. She still uses a chair in the shower, just in case, since hot water can bring on dizziness. She also has some anxiety, which we as seeking counseling for. Anxiety/panic/stress is all really hard on the body and can’t be good for AVM patients. Have you thought of seeking some counseling? There are counselors a who deal with issues brought on by illness and even specifically, neurological issues. I’m guessing the hospital has a social worker on staff who can help guide you. Good luck and hang in there.

Hey Michael... I know the feeling you describe about "rocking on a ship"... Thats one of the symptoms my AVM gives me. But my AVM have not bleed yet though. One day I was so dizzy that I called the hospital and they wanted me to go for a CT-Scan. I did..., and they told me the same as you "nothing has changed since last time"!!! Well thats not how I feelt at the time.. But then again.., my knowledge about my AVM takes up alot of the thoughts doing the day now.. Guess what I am trying to say is that you should not underestimate the psychological aspect it gives thinking about/focus on the symptoms all day long. I had to go and talk to my doc. about getting sedatives. That has helped by reducing some of the dizziness. I know my case is not the same as yours, but it has also been a help to me trying to changed focus every time the head starts "spinning" around.... Hope the best for you...

I was a little dizzy when I had the rupture, but I'm four years post rupture now and I do still get occasional bouts of vertigo. I've gone through all the testing and it's NOT inner ear vertigo. The best my neurologist can figure is that it's due to some internal scarring from them having to dig out the huge AVM. So when I get overstressed or overtired, I suddenly get the vertigo back again. the sensation of being on the ship, if I move my head too fast, or even my gaze too fast - feeling that disorientation and then dizziness with it. I'm on Lamictal for anxiety (as well as a preventative measure against seizures so I don't start having them...) but I DO know how awful it is to have the vertigo. Ugh...

Hang in there and definitely talk to your neurologist about the possibility.

Blesings,

Tina

I was told repeatedly by our local ER from hell that all my imaging looked fine, that there were no changes at all and that I was perfectly well. Well it turns out I had brain necrosis. After initially doing better on steroids, I soon began to take a turn for the worse. Again at the ER they continued to examine me, scan me, report finding no change since the last time they scanned me, again sending me away with more patient education materials on headaches and now also handouts on handling stress and managing anxiety. Turns out I'd had a bleed that no one caught at my local hospital from hell. Later when no longer able to ambulate without the use of a walker I fell down the stairs (as in my confusion I tried to walk down them in my walker) the doctors looked at my imaging, pronounced me well and again said they didn't see any changes at all since the last time I was in and had imaging studies done. Well it turns out I had shift and compartmentalization.

Later when I went to the ER, my son took me to a different hospital and the doctor said everything was fine, and I was okay to go home, that my imaging studies looked good. His nurse handed me another patient education handout on how to avoid triggering migraine headaches. Turns out seconds later I would wind up being life flighted to the city four hours away to be stabilized for two days before having to undergo open brain surgery. The only reason I wound up at the hospital was because my son, concerned for my safety was questioning the doctor about him releasing me rather than admitting me because I didn’t seem well to him at all. As it turned out as I turned to leave I collapsed and only then was the attending willing to rethink his original position re-consider and say well on second thought maybe not so fast…

The only reason the necrosis, bleed, and shift were discovered was because each time when my neurosurgeon, after getting rosy rainbows, sunshine, unicorns and butterfly reports from the ER finally got my imaging and reviewed it in just a few short seconds he was easily able to see what over the course of months staring at all of those exact same studies dozens of other people every time missed. I'm very fortunate that my oldest son chose to argue with the attending physician that last trip to the ER because had he been more deferring I would have wound up going down for the count on the expressway in the middle of nowhere. Even more fortunate he was there and I wasn't alone, being released to maybe hop a bus and catch a ride with a bunch of strangers or something.

Thinking yourself in the clear and then having a bleed is difficult. And I’m sorry to hear you had to go through it.

i wanted to say thanks to everyone, it's been a long road and i've had to do this all by myself because i knew no one who even remotely had the same thing as i do. it's a wonderful thing just having people who know what this is like and be able to talk to them. i still have the dizziness it's much less now and been replaced by nausea. the dizziness only really seems to hit if i shut my eyes or right after i wake up.oh well i'm calling my neurosurgeon who has become my primary care provider at least according to the paperwork. actual treatment options are non existent at this point he say's its in a really inconvenient place where damage from removal is almost 100%. again everyone it's nice to know i'm not as alone as i was feeling.

So pleased to hear that you have found some comfort here. I have only recently joined mysel having not know i had an avm before (it bled without warning on november 10th) so i know exactly what you mean when you say you felt alone.

I wish you all the best and come back as often as you need. There are some wonderful people on here and their collective knowledge is astounding.

Good luck my friend x

One issue that should be looked at as well is your blood pressure. My son was experiencing these same symptoms, dizzyness on rising from sleep, sudden change in position ie. from sitting to standing, associated nausea, balance issues including falling over. It passes within about 10 mins. Low blood pressure was the cause. Some days your reading may be fine but other days it may be tending low. If he takes it a bit more slowly then the symptoms are reduced.