AVM Survivors Network

I've never had this, well not to this extreme

Hi all,

Have you ever had a WTF morning? Of course, you have, we all have. I want to tell you about mine and ask for some input on either who to talk to about it or how to get through it if it happens again. Or whether the proper response is a few choice 4 letter words and move on.

First, relatively speaking, I’m fine.

This morning, I’m working on some family paperwork (financial, etc. - truly boring and hard to do anyway, especially with a headache). Headache was pretty normal 2 to 4 range, constantly bouncing around in that range. The only thing I noticed even remotely different was my balance. I had I think three times this morning where I was standing (at the kitchen sink etc) and suddenly it felt like the floor in front of me was going upward and I had to take a step back to keep my balance. A couple of steps and adjustments and I was fine. Happened two or three times this morning - while doing laundry, making breakfast, etc. - so it doesn’t seem to be related to bending over.

My 19-year-old "nope full-time college isn’t for me came downstairs and asked me some questions about his music that he’s writing. I responded to him and every syllable of the words I spoke felt like a jackhammer (albeit a brain sized one) pounding on the inside of my skull. My pain levels immediately went from a 3 to an 8 and then if I stopped talking for 15 to 20 minutes, it starts calming down almost immediately but doesn’t come all the way down. It happened about an hour ago and it’s down to a 5, so more than before but it’s now down into the manageable range.

I’ve had this before (a lot more before I started propranolol) but never to this extreme of a jump and also not coming down as quickly as before and having more and longer “other” effects - cold, fatigued, vision is worse than before, achy all over in addition to my headache.

Big deal or a bump in the road?

Anyone had anything similar ever?

Like I told my “Randy” and my wife, “I’m sick and tired of being sick and tired.”


Hey TJ,
My AVM is in my arm/hand region, instead of my brain, so it’s a little bit different. However, yes, I have those moments where I’m just like WTF and wonder if my life will always be like this. I try really hard to find the positive in every situation, and sometimes it’s more difficult than others, no doubt about that. I’ve found that for me volunteering with the homeless (or anyone that might have it more difficult than me) really helps get my head right. I try to see the blessing, rather than the curse, in my situation, instead of “OMG my arm will never be healed.”

I have children as well, and when they were younger we would horseplay and I’d usually end up hurting my arm and in tears from the pain, although I’d hide the pain from my kids…never wanted to feel like a victim of my circumstances, you know?

I appreciate you sharing your experience, please feel free to reach out.

Could be a big deal TJ. Off to the hospital you go. I’m thinking you’ll be getting a scan.
Some symptoms could be viral but not all.
All symptoms could be neurological and potentially serious.
Get checked. You won’t be wasting anyone’s time.

1 Like

Quick update - been purposely slowing things down both physically and emotionally - and seeing a somewhat gradual improvement back towards 2 weeks ago. I guess an 18 ur old and a 19 year old with their own trauma baggage on top of my stuff and finding that my wife might need shoulder surgery was a limit that I shouldn’t have crossed so quickly. But that’s a topic for another day.

1 Like

As long as you are feeling better that is all that counts. Had me a little worried there TJ :slight_smile:

1 Like

Yeah, me too. It felt like a bit more than a normal “worse than normal” day - which is why I brought it to the group.

1 Like

You know your limits by now… and I know from experience as life is happening around us we have that tendency to say “I can do this” and give our limits a little nudge; but I tend to find out in the long run that if I push past my limits my brain tends to give me a good beating, not just a nudge. stay strong, I am glad you are feeling a little better!

1 Like