AVM Survivors Network

Friday Filings

Yeah but it’s a hangover for a reason, as opposed…

1 Like

LOL or you’ve got two!

Believe it or not, I have had two headaches at once. Left side, pretty much the whole left half was a persistent annoying dull pain - the kind that slow you down, make life less joyfilled, but they don’t hurt bad enough to make you want to hole up with comfort food and binge watching Netflix.

The right side echoed the left but then Added a nice throbbing up and down all across the right side. The doctors thought it was strange and that it was probably the nerve damage on the left side blocked the throbbing that is happening on the left.

And my apologies if some of that is hard to understand. Thank you

Hey TJ:

I can answer “yes” to almost all your statements. It feels good to know that I’m not the only one! I want to join your Long Island Ice Tea group. You guys are the greatest and I love your sense of humor blended with a dash of truth! Best of luck to all of us.

Sharon D…

Glad that’s over with for you! I went to Fishersville, VA for mine. It was test after test after test. All the while after failing yet another test, I was exhausted. But it helped in the filing for social security. According to my docs and DARS liason, it was determined that I cannot continue in a 8-5 desk job. That’s was the bad news. But it did free me up to spend more time with family and friends. Also it was providential in my opinion, because some months later I lost vision in right eye completely and partial in the left!

I say all that to say, there are those who know at least some of what you’re going through! And because of that, wish you all the best! Thoughts are with you sir!

1 Like

Awww, Sharon, you are going to make me blush…,

I do like the idea of a Long Island Ice Tea club. A virtual salute to the guys on “cheers” (old American sitcom took place in a bar. Hmmmm… wheels are turning but slipping a bit this time of night.

The lady giving the tests said they design them to fail. In other words the farther you go, the harder it gets - i’m Glad she told me because otherwise I would have felt like a failure.

1 Like

A post was merged into an existing topic: What do survivors of AVM’S do for work?

Reading all these, put a smile on my face :blush:

It’s been 9 months since my craniotomy, still dizzy, confused, disoriented, headache, but so very much grateful for everything.

Still wondering, can I still work?

Have nice monday to everyone :smiling_face_with_three_hearts:


Merl… you are so correct if my wife wasn’t reminding me what I needed to be doing everyday I’d probably forget what year it is… literally! :slight_smile:

It’s 2017, right?

1 Like

I find this funny but after my AVM ruptured and I woke up in ICU they ask you the standard questions of your name and what year it is; at that time it was 2015 I said it was 1961. I got a lot of worried stares looking at me other than my wife who was smiling and she goes hey you got my birth year right so we’re still good… she said I’ll buy you a calendar but as long as you remember my birthday I’ll keep you around! :slight_smile:

“I find this funny…” ??? I’m a bit the same ( at times) like ‘Doh, I forgot AGAIN…’
That was until last week. I’m usually fairly good with important dates b’days, anniversaries etc. Last week I forgot our anniversary. First time in 24yrs that I forgot it. It’s the anniversary of when we first got together so not a REAL important one but the wife reminded me 2 days later. Ouch, that was a bit hard to take. I keep telling her when she forgets it’s an old age thing (She’s HEAPS older than me :wink:), so she had to rub that one in a bit, which under normal conditions would have been fine. But when you know your memory is bad being reminded of it sucks.

Merl from the Moderator Support Team

That reminds me of the last time I had a seizure back in 2012. The cause was was my medication was changed to generic instead of brand name. The EMT asked me some questions. Most of them I got. First one was are you okay. I said yes. Second one was do you no where you are. I was at the movies so said movies. Then the funny ones started. He asked what’s today’s date. I laughed and said I no it’s Saturday and it’s February but no I don’t no the exact date. Then when was brought to the hospital one last crazy question the doctor asked was for me to say the alphabet backwards. Funny part is I no it backwards because my neurologist said they might ask this question if you have a seizure. So passed it and the reaction of the doctor was funny because he said that I was the first to pass that test.

1 Like

For me I absolutely have to find the humor in these situations as I refuse to have a pity party for myself; I have strong support from my wife and daughter and though they get irritated with my short-term memory at times it is what it is and I just have to laugh about it and try harder next time generally through Post-it notes and a calendar on my tablet.
None of us chose this for ourselves we just have to roll with the punches and put one step forward each day and make the best of a bad situation…for me it’s through humor and sarcasm… :slight_smile:


I got a chuckle out of this, particularly he date question. I got the month, day but had the wrong year. Go figure it was on Friday the 13th of May 2016…I missed it by a year apparently and said 2015, so close! I’m now a little superstitious!

Thanks for the “Cheers” reference. I watch an episode before bed each night. It helps lightened my mood a bit and hopefully put me in a better state for sleep. SLEEP. Now that would be an achievement! (I have fibromyalgia on top of being 26 years post cerebellar AVM rupture!). As for the Long Island Ice Tea. Mmmmm! Had one a long time ago. Don’t drink alcohol with meds and balance issues!

Yeah, me too on the alcohol - I’ve had three drinks since my world crashed in January of 2018.

When my brothers and I went out for dinner the day after my Dad’s funeral.
My nephew’s wedding
Our 34th wedding anniversary.

Even though it was only one drink, I didn’t drive home and the hangover headache was double the next day. But we were celebrating my Dad, my nephew and my wife. If those aren’t reasons to push the edge of that envelope, I don’t know what is.

You are forgiven! (As if it matters, coming from me!) I even feel the alcohol effect when sipping a so-called non-alcoholic beer (still has a wee amount). And, I will do anything to avoid migraines!

Wow that covers just about everything. Being married to an Irishman I really appreciated the prayer, but my Irishman would have something other than ice tea to toast. I toast with you with the ice tea. I just had a doctors appointment this week with my primary care doctor and we talked about a second opinion from maybe the Cleveland Clinic for me.
Someone would will say there is nothing they can do for me. Stay strong my friend.