Roll Call-Where are you from?

Be sure to have an EMU stay. Ask for one to be sure by a neurologist you arent having seizures. Be sure you use the words blackout, pass out suddenly, no recognition of passing out only evidence you were sleep by what you described.

I had a psychiatrist who thought my symptoms of sudden joy or strong emotion of any kind at first was mood changes until further investigation and decided it was seizures. An EMU stay later they saw me “passing out” and while on EEG could see during each episode my brain was staright sleep in REM sleep. They sent me to a sleep neurologist who did a more intensive 2 day sleep study one over night to rule out sleep apnea followed by an MSLT sleep latency test to see why I fall asleep so much yet dont stay sleep at all.

I now take Modafinil twice during day to help keep me up. It is a stimulant. It helps but I still get fatigue and episodes but not as often episodes if passing out. I stay tired though all the time no matter how much sleep I get.

I also have cataplexy and sleep paralysis so when I have a vivid dream I am aware but unable to physically move. Those happen mostly in the morning round time I am waking up. I am stuck in the dream good or bad till my brain snaps out of it. Hope that helps.

My AVM was cut out and clipped. They had to go in a second time because of a “drainage” issue. The 2nd time I was awake. Dr. Caram talked to me the entire time. Very strange. t did not hurt. After the surgery I was able to raise my right arm over my head. God Bless America. I am so fortunate that I recovered as well as I did. After Covid is gone I look forward to seeing my new neurologist in person. For now, video calls will have to suffice.
I have to say-in 1973 at the ripe old age of 16, when I went home from the hospital I had an emotional meltdown. It hit me, what had happened. The whole time I had been trying to cheer up sisters and working hard on my therapies. I guess I needed the realization. I am doing ok foist took them for a weonly took those for a week.r someone my age with a head full of scar tissue. Take care people. Try not to get Covid. It sucks. If you have it speedy recovery. Treat the symptoms. Steroid pills helped me a lot. Took those for a week.

Was thinking about you guys in the US today because the figure I saw on the news was circa 200,000 people testing positive for coronavirus every day :scream:

Please stay safe!

1 Like


DO take care of yourself! I’m so sorry your family has been impacted by COVID. I know some who have been, here in the greater S.F. Bay Area.

The stay-at-home orders are exhausting and have demonstrated how important it is to keep moving. My balance, co-ordination, and overall strength have suffered. Quite a quandary, right?


As my brother said (and he’s a preacher - so no stranger to words) - it’s a quandary full of rocks and hard places…

Whereabout in the Bay Area are you? My brother used to be in Sacramento - so we’d come to SF every time we visited…

I am in Sonoma Co., north of S.F.

1 Like

Were you near the fires?

La Crosse Wisconsin.
My wife has P.A.V.M.'s

In 2017, the town WAS threatened and I chose to evacuate to the Red Cross site. In 2019, the fires certainly could have made their way down the valley, but did not. Thank goodness! (We pray for rain!)

1 Like

4 or 5 years ago, our friends were living in San Diego (I don’t remember which community around them, but the fire was on the other side of a small mountain from them, the smoke was billowing over the mountain and it was so close they could hear it.

Scared them something fierce but they were safe. Had their car all packed so that an evac could happen in about 2 minutes.They had more trouble with terrorists in MIlan Italy than with fires in San Diego.

Im from Montenegro

Australia here

Surgeries were put off here due to covid at the time my embolisation was scheduled (but they “apparently” we’re not putting off the priority ones which mine was on the priority list)… Then realise they are putting some off

I had been feeling worse and worse daily like death with new symptoms (you know how you can tell in yourself how you feel)… so I was sitting back just accepting it when a Dr friend of mine said NO go and see them. Your life is no less than anyone else’s.

So I took that advice and went in to see the Neuro team and they ran a few simple tests and then said “have you fasted today? We need to operate asap”

So my feelings were right and I’m grateful that my Dr friend told me to go in as I’m pretty sure I wouldn’t be here if I hadn’t

I can’t speak highly enough of the team here. They really have been great

1 Like

A post was split to a new topic: Hello from Texas

Hi Vicki, I hope you’re doing okay. I had a similar experience; avm bleed, 2 craniotomies at 14 (I’m 61), seizures, meds, arteriograms in all sorts of places… The landscape has become less invasive. I think my surgeries were about 7 hrs each. I had my surgery done at Yale in New Haven,CT. I have a bit of memory loss and have had plenty of emotional struggles.
P.S. I hope you’re not getting slammed too bad from the snowstorm.

1 Like