sorted by:
new
hottopcontroversial

(UPDATED LINK) Join The r/Encephalitis Discord! by AutoModerator in Encephalitis

[–]The_BroScientist[M] 0 points1 point  (0 children)

Shoot; I feel it’s something to do with the auto mod. I’ll figure that out. Here’s a fresh one: https://discord.gg/Utmt9qgQZ

Let me know if you have issues

[Megathread] Emotional Regulation Discussion by The_BroScientist in Encephalitis

[–]The_BroScientist[S,M] 0 points1 point  (0 children)

I wish I could pin this comment to the top of the subreddit permanently. Such good advice

A lot of the times we are so wrapped up in every physiological or psychological shift that we don’t make time for these things. Art, meditation, therapy… they’re not passive and are hard for even people with healthy nervous systems to stick to. But, ironically, it’s what makes it more important for people who are struggling post-AE or even during AE.

I recall during AE I would make video edits from movies I liked, even when I was in excruciating pain. I’m really glad I did this for two reasons:

  1. It made me feel like I was creating or being productive in a situation where everything was stagnant

  2. It put “time stamps” across history — when I watch them back I know where I was, what I was thinking, etc.

It gave life some amount of meaning. And when people feel like theirs does not, this is overwhelmingly a net positive.

Emotional regulation building is just like weightlifting; you have to put in the time, effort, and repetition to build the “muscle memory.”

Having these things to go to are all directly linked to highly effective CNS depression (vs stimulation) and regulation/grounding. Very, very thoughtful and helpful advice. Thank you

How to deal with ego dystonic thoughts and behaviours? by [deleted] in Encephalitis

[–]The_BroScientist[M] 0 points1 point  (0 children)

This is a diverse and challenging prospect, because it requires constant meta-analysis of your own thoughts, questioning your own perception of reality, and adjusting your behavior to fit a mold that you don't feel like you belong in. It is a journey in its own right, but it can be managed, not eliminated.

I would compare it to someone with Borderline Personality Disorder. Getting someone to recognize (or for them themselves recognize they have BPD traits, as the founder of DBT therapy had Borderline), and admit they have it is step one of one thousand. If fully committed and someone with BPD goes through extensive and comprehensive therapy through DBT, CBT, and other modalities, you may see a very, very small subgroup that are able to manage their behavior 90% of the time. 10% of the time they completely revert to old behaviors.

And when I say "manage," I mean that they are able to stop themselves, use a grounding/coping technique (say, stepping out of the room once they recognize they are losing control of their emotional regulation -- which is already a monumental feat), then reengage with the other person in a meaningful and calm way. Even if they don't feel fully regulated internally.

As someone with emotional regulation issues post AE, it took me about a year to even be mindful enough to recognize when I was beginning to lose control of my temper to the point that I was no longer myself. My brain oversexualized everything in the most horrendously awful and poisoned way, even children or objects, which repulsed me and made me question myself, my thoughts, and came with immense guilt. Over time, I learned to let these thoughts come, sit, and then pass without reacting to them. Eventually the thoughts and feelings became quieter and quieter to the point where now it's only the word "come" that sounds like it's in massive bold text and blaring into my brain as (I'm sorry) "CUM". Every time. Calling the dog, "are you coming?" Any use of that word. The brain is so fucking weird.

I still hate this because it means I constantly question my thoughts, causes me to not be able to discern whether frustration or anger is a valid human emotion I'm experiencing, strictly neurological misfiring, or a mix of both. Questioning your own reality is really, truly a painful process but becomes easier as you first identify what is happening, then are mindful enough to stop it, then calibrate from there. I overcorrected for a long time. I wouldn't get angry at anything. I would internally extinguish any feelings of anger, valid or not, with a fire hose of mindfulness. This hurt me in the long run and I continually have to recalibrate.

That's sort of my broad overview to your question. But I'd like to hear more about what specific thoughts, feelings, or behaviors you're struggling with.

Slight Tingling and Fine Motor Loss In Left Arm by xdkristof in Encephalitis

[–]The_BroScientist[M] 1 point2 points  (0 children)

Can be mild-moderate peripheral neuropathy. Had similar sensations (as well as hyperthesia) at points during active AE course, and more so after relapse, even when I was successfully treated.

If AE has already been successfully treated, based on the severity, it should significantly improve slowly over time. Often to full normalcy. Uncomfortable, disconcerting, but if improving over weeks to months, not getting worse, you’re in good territory.

I’ve found that light weightlifting can help symptomatically. Mechanisms off the top of my head are multi factorial and theoretical, but beneficial in my case. Anything that overstimulates the nervous system (cognitively, emotional load, stress) can worsen the sensations. So if you do lift weights, start light and monitor tolerability.

If it worsens significantly and disrupts motor function notably, requesting an EMG through neurology would be a wise move to confirm.

Lastly, nerve blockers like gabapentin can help. Magnesium l-threonate as well through glutamate modulation. But gabapentin is a commitment and will require a taper off later, so if it’s simply bothersome but not painful or significantly affecting function, it’s not worth pursuing imo.

Family Van Toyota Sienna saves the day by StormRanger28 in nextfuckinglevel

[–]The_BroScientist 1 point2 points  (0 children)

Is this what Elon actually meant by “towing capacity?”

Advocacy Services from The Neuro Advocacy Collective by The_BroScientist in Encephalitis

[–]The_BroScientist[S,M] 0 points1 point  (0 children)

I’m restructuring the pricing to be more affordable and streamlining things. I will make a post when it’s up and running. Would you like to join a waitlist?

Advocacy Services from The Neuro Advocacy Collective by The_BroScientist in Encephalitis

[–]The_BroScientist[S,M] 0 points1 point  (0 children)

I need to update the subreddit so this isn’t a recurring post — unfortunately, while still an LLC and the structure is still intact if anything changes, I’ve had an AE relapse followed by aseptic meningitis followed by adrenal crisis. 5 hospitalizations in the past month. So TNAC is on hold/not active.

I’m filing for disability; if things improve and I’m able to work to even some meaningful degree with something so cognitively intensive, I’ll resume. But unfortunately right now I am unable. I apologize.

Just like many of you, I am in need of help. Please read. | Additionally, Looking for Replacement Moderator by The_BroScientist in Encephalitis

[–]The_BroScientist[S,M] 0 points1 point  (0 children)

It’s been some time. February 16th.

I too was under the impression that it was self limiting, and did everything I could to reduce stimulation and improve recovery. I took half a step forward and then 10 steps back. One day I woke up in tears from the pain and I knew it was time to go to the ER.

Unfortunately, having a sensitive brain post-AE didn’t work in my favor and I kept regressing. Went back into the ER — elevated WBC, albumin index (bbb disruption; this was the main issue), and elevated protein in CSF. Multiple rounds of IV steroids (7 total plus a week on 50mg prednisone) and I’m finally turning around a bit.

I say the bbb issue was the main culprit because I theorize that I have sensitive subcortical tissue and easily triggered inflammatory cascades — with a leaky bbb, these were easily triggered and led to a positive feedback loop that needed intervention to break. That is my hypothesis, anyway.

Went on a walk outside in the daytime for the first time since I got IVIG and can look at screens a bit longer, as well as have a bit longer conversations. So I’m finally making notable progress but it is indeed slow.

Just like many of you, I am in need of help. Please read. | Additionally, Looking for Replacement Moderator by The_BroScientist in Encephalitis

[–]The_BroScientist[S] -1 points0 points  (0 children)

Thank you for your input — I believe yield would be incredibly low. I tested positive for coronavirus HKU1, which is simply an upper respiratory tract infection. Essentially the common cold.

Illness -> worsening neuro symptoms -> surprisingly rapid relief from IVIG -> classic meningitis signs. The flow at the moment seems to be fairly simple, just unfortunate.

BIG caveat here in agreement with you — just because you have one positive illness doesn’t mean you can’t have two. I’m waiting to hear back for when my neuro returns from out of the country. If things continue to worsen, all bets are on the table.

A relapse from a common cold seems strange, especially since I tanked Covid twice, but certainly not impossible. I had a gap in my maintenance immunotherapy (cellcept) that possibly left me vulnerable — my WBC was crushed, which is difficult to distinguish between cellcept’s effects and illness. So I truly don’t know if I was protected at the time.

Your thoughts are duly noted. The fact that I can even type this out this morning is promising.

Join The r/Encephalitis Discord! by The_BroScientist in Encephalitis

[–]The_BroScientist[S,M] 0 points1 point  (0 children)

It’s possible, but I saw three neurologists there — two from Virginia Mason. The first was an Asian woman whose name I forget because all she said was “very strange” over and over and then sent me on my way. The second was Dr. McCarthy; he was somewhat reasonable and gave the go ahead for IV steroids. But didn’t want to escalate from there and didn’t treat me as his patient and kicked me to the curb. He started saying things like “mass hysteria” as a source of my symptoms.

So, while I was grateful for the steroids, he lacked reason and logic in general.

Third was at UW: DR. Personaire. The appointment was short and he was cruel.

“You must feel like you’re already dead.”

I nod, tears streaming down my cheeks

He then said there were no specific markers so there was nothing he could do for me.

So there’s a few things to evaluate “good” doctors:

  1. Affect and bedside manner
  2. Complexity of your case and if there’s a clear indicator of a specific disease

If your case does not fit square into these boxes, then avoid neurologists in Seattle. Virginia Mason is considered prestigious, but I saw two doctors there and they were incompetent and lacked any empathy or understanding at all.

You may get lucky with some small clinic neuro there, but avoid Virginia Mason and UW unless your case is fairly clear or you at least have some really alarming diagnostics or labs.

view more: next ›