Where did TJ go?

Support
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To my favorite AVM Group:

Hi all,

No, I have not fallen off the edge of the earth.

No, I haven’t checked back into the hospital.

Then where has TJ been? A couple of things that have been going on:

  • fatigue - I have been dealing with a constantly growing amount of fatigue and sleepiness. I could make you laugh at some of the unique places I have fallen asleep in the last 4 to 6 weeks. I won’t get into the details but let’s just say that it’s quite something I haven’t fallen off my desk chair when I’ve fallen asleep while attempting to type…
  • Most of the time, those sudden sleep episodes don’t last very long - a minute or two - but sometimes they can be longer. If no one else is at home other than me and my dog, they can be an hour or more.
  • At the same time that I am falling asleep multiple times during the day, I’m having a hard time staying asleep at night.

Go figure, huh?

And then to make it more of a challenge, as the sleep issues have been getting worse, the depression that I’ve been struggling with for quite some time (years, not weeks or months) has also been getting worse.

Are we having fun yet? Uh, no, not really.

This morning, I’m listening to a podcast by Brene’ Brown and her guest was talking about her own life and how she had a bad accident when she was in college and she got thrown from the car she was in and her head basically bounced down the road a ways. She said that because it was a series of bounces rather than one major smash, it is a lot harder to disagnose and a lot harder to treat than one major bruise would be.

That got me thinking, after my embolizations and surgery in 2018, I went through and found that 8 out of 13 cranial nerves were at least indirectly related to the symptoms/pain/nerve damage that showed up. Basically, that appears to show that one of the reasons that the pain and also the nerve damage are rather wide spread is because the trauma that was done to my brain was rather wide spread and therefore a lot harder to figure out.

I’ve got my doctors on this idea, trying to figure out if it makes any sense and if it does, what do we do about it.

Do any of you all have any insight into it?

Thanks,

TJ

P.S. If any of you have any thoughts on what to do, let us know, we’d love to hear more of the collective brain power of the group. Thanks!

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And he returns.
Well, it’s good to see you’re back my friend. I was wondering how things were going, but in knowing you’re in the early stages of another recovery, the last thing you need is someone giving you a (virtual) shake every 1/2 hour to check your vitals. It would make you feel like you’re still in recovery :smile: .

OHH HELL YEA. Let’s just say I’ve had sometime to sit down and REALLY think about all of this, but I don’t know about the word ‘insights’. More like garbled thoughts of a messed up brain in my case.
So, here goes:-
When we have multiple surgeries it’s not that symptoms add up ie Operation 1 + Operation 2 + Operation 3… Some symptoms multiply up. Differing nerves have been severed and can take time to re establish some sort of connection, some of those nerves have been disturbed multiple times and may never re-connect. Now if you have all of these points that have been disturbed all over the skull and brain and they’re all misfiring at the same time it’s like passing multiple electrical currents directly through the brain itself, no wonder we feel a pain, which simply shouldn’t exist in the world. INTENSE.
I thought I knew pain before all of this but OMG…I have been re-educated because I ain’t never had pain like this before. Not ever. Just WOW!!!

I’ve said this before, so I’m sure you’ve seen it but, here it is again.

When you hurt your arm it affects your arm.
But when it’s your brain it can affect EVERYTHING

Trying to work out cause and effect? I wish you the best of luck with that. With multiple injuries and multiple firing sites, firing all at the same time, trying to pinpoint cause/effect can be a minefield. I’ve had the neuro’s tell me ‘Well, that just can’t be happening…’ when I’ve mentioned some symptoms, “I didn’t go anywhere near that area…” and yet some of these after effects still affect me today. I’ve given up on ever getting a direct answer, so I’d REALLY like to hear how you go on that front.

As for your sleeping during the day, I use to fight against it. I wanted to get back into some sort of cycle, but the more I fought, the more my symptoms increased. It was then explained to me that the body uses sleep to recuperate, sleep is not a bad thing, in fact, it’s what your body needs. Those increasing symptoms was my body trying to tell me ‘ENOUGH ALREADY’. My advice, don’t fight it, if your body needs sleep, let it sleep. But, like you, it messed my night sleep cycle something terrible. I spoke to PCP about this and he gave me some sleeping tablets. I don’t use them everyday, but when I need them, they are there. Some nights I can lay there for hours and my minds constantly going tick, tick, tick… and it drives me nuts. Nope, take a tablet, 1/2hr later ZONK and I’m out.

That’s enough from me (the wife’s telling me to come to bed) so I’d better go.
It’s great to see you back TJ, take the time you need, but don’t be a stranger either. :smile:

Merl from the Modsupport Team

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Even when it appears that I’m not here, I really am. Rare is the week where I don’t stop by at least 4 or 5 times in the week and see what is going on. Why?

  • because if I can help someone else feel better, that, even if it’s only a very small thing, is a good thing and helps me push back against the darkness.
  • because it’s good to keep in touch with friends. PERIOD.

So, even when you don’t see me, I’m probably here some anyway and feel free to reach out and say, “Hey Teejjjjj!” (My son, the 20-year-old Haitian American (as opposed to the 19-year-old Haitian American daughter) decided he could call me that if I let him on here. Uh yeah, I’m not going to let him on here.) Not yet, anyway.

So, TJ, teejjjjj, “hey you” I’ll probably answer to any of them…

TJ

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Me, too.

I used to be very much a scientist, probably towards the introvert end of the scale, definitely more shy. But over time my job changed from that of a technician to one that was more people-focussed and finally to one that was almost exclusively about people and relationships and I learnt that I really rather enjoyed that relationship thing. So today I’m far more interested in helping people than earning a buck.

I’m very happy with that and I encourage pretty much everyone else to follow a similar pattern.

Good to hear from you. You do worry us a little when you go quiet, so it’s good to chat from time to time.

Best wishes,

Richard

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While I’m not advocating Merl’s every 1/2 hour approach, you can bug me any time you want…

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Welcome back. We missed you! Hope you’re feeling better :slightly_smiling_face:

Thanks for your post. Personally i think there might well be some mileage in this. Just seems to make sense to me that the more you mess with things and/or the more damage then the more difficult/lengthy the recovery time. The problem with BI is that ‘recovery’ is different for each of us. Its truly quite an individual thing.

Lulu
-x-

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With my last 2 surgeries they’d come around and check vitals every 1/2hr, shine a torch in my eyes and take that knitting needle thing and rake it up the sole of my foot to check my reflexes. I was sooo tempted to show them just how well those reflexes work :smile: Ohh and if you were sleeping… well, you ain’t sleeping after that :roll_eyes:

So that’s where the “…every 1/2 hour approach…” came from.

Merl from the Modsupport Team

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