I really like this discussion. It shows how others think about this disorder. I dislike though how they place that into the longCovid/Lyme disease/CFS whatever corner. I did not develop SCT symptoms "out of the blue" after an infection!!! And I never blamed an infection. I always knew genetic, something wrong from the beginning. But else great discussion esp the bit about "rule out organic stuff". I am also beginning to think SCT/CDS is the drawer for "undiagnosed" but struggling severely with something that impacts the brain. As I am edging closer to the cause with genetic testing and neuro-gastrointestinal testing I may leave this group soon although I had and have every single symptom of SCT/CDS and I had it from the beginning.
Mine also got worse after Covid but not because of the infection but because of loneliness, and lack of interacting which makes my SCT worse (it is almost like if I don't practice the bit of muscle re faster processing it gets worse), also because I was at the same time entering pre-menopause and other stuff. I do not have inflammation in the brain. I had a spinal tab and they check for inflammation markers of the brain when doing that. But if this is what you suspect maybe a spinal tab would help or see if medication addressing microglia would help. I also had mitochondrial disorders ruled out with a genetic test.
I could well have noradrenaline dysregulation. It matched with my saliva genetic test, but both Strattera (increasing availability) and Guanfacine (lowering) did not work for me (mostly because of blood pressure issues). Maybe the combo of both would have. With this also low dose SSRI from the very beginning helps because it protects noradrenaline receptors by lowering stress levels. But I guess in our case this would have had to happen in childhood already (low dose SSRI). At this point I am focussing on the enteric nervous system and more obvious markers and stressors. Noradrenaline is looked at closely when you have dysautonomia (I do have autonomic instability since getting older). For this specific dysautonomia centres are the right address. They often try to address this with medication like Mestinon (which is also tested for CFS etc).
No idea where you read that but autism was ruled out by extensive tests and I cannot relate to the issues my autistic friends have at all. I would also neither be happy with repetitive office work nor with noise cancelling headphones. I am quite social but embarrassed of my drifting off tendencies. I have zero issues around reading social cues (if anything I am socially too attuned to make up for my lack of attentiveness). I don't have sensory issues and don't do well with routine. I need variety and social interaction. What gave you the idea that there is autistic traits? I do think anyone here should get tested for this though as autism can hide behind SCT. In my case something completely different is suspected and I am currently getting tested for it (a rare genetic disorder). Maybe not so rare but milder cases are missed easily. PS: I guess the only thing that could be mistaken for autism is my withdrawing tendencies (caused by fatigue, and cognitive fog).
I don't have social anxiety though. I feel weak, have attention issues, etc. But no social anxiety. I am brilliant with small talk because my attention issues don't matter then and horrible in e.g. office setting or somewhere where the lack of attention matters.
I don’t understand that one comment that even puts gastroparesis in the same bucket as the other weird ones. This normally gets diagnosed with a gastric emptying study which should show very clearly whether you have it or not, so wtf are they implying? You can’t make up GES results.
I missed that bit. Gastroparesis is difficult to diagnose, but not on the same page as some diffuse CFS/Lyme disease whatever. Anything small intestine, pseudo obstruction, inflammation is also very difficult to diagnose and can impact the brain in the long run.
Quite a disheartening to read through - hubris at its finest. There was at least one commenter who had a balanced and reasonable view and called the others out a bit. I tried to comment to thank them but it got auto-modded 😅
My comment was also deleted... The opinion of someone battling this is not wanted ;). How I wish it was only: sleepy. Haha. Would have had a normal life.
I suspect many of those participating are not "brain doctors". When I read the posts, I feel like I'm reading how the average person off the street looks at these conditions.
I really like this discussion. It shows how others think about this disorder. I dislike though how they place that into the longCovid/Lyme disease/CFS whatever corner. I did not develop SCT symptoms "out of the blue" after an infection!!! And I never blamed an infection. I always knew genetic, something wrong from the beginning. But else great discussion esp the bit about "rule out organic stuff". I am also beginning to think SCT/CDS is the drawer for "undiagnosed" but struggling severely with something that impacts the brain. As I am edging closer to the cause with genetic testing and neuro-gastrointestinal testing I may leave this group soon although I had and have every single symptom of SCT/CDS and I had it from the beginning.
What is the cause for you?
It appears that my neural cells did not develop as they should have. I am following this up at the moment and it is what makes sense the most for me.
For what it's worth, I also always had CDS symptoms since I was a kid, but long covid made them at least 3x worse for me.
It went from manageable to not manageable and I had to make major life changes and give up on a lot of things.
From what I've gathered it's all likely rooted in chronic inflammation and mitochondrial dysfunction in the brain.
Mine also got worse after Covid but not because of the infection but because of loneliness, and lack of interacting which makes my SCT worse (it is almost like if I don't practice the bit of muscle re faster processing it gets worse), also because I was at the same time entering pre-menopause and other stuff. I do not have inflammation in the brain. I had a spinal tab and they check for inflammation markers of the brain when doing that. But if this is what you suspect maybe a spinal tab would help or see if medication addressing microglia would help. I also had mitochondrial disorders ruled out with a genetic test.
What about neurotransmitters? Like a low norepinephrine sensitivity?
I could well have noradrenaline dysregulation. It matched with my saliva genetic test, but both Strattera (increasing availability) and Guanfacine (lowering) did not work for me (mostly because of blood pressure issues). Maybe the combo of both would have. With this also low dose SSRI from the very beginning helps because it protects noradrenaline receptors by lowering stress levels. But I guess in our case this would have had to happen in childhood already (low dose SSRI). At this point I am focussing on the enteric nervous system and more obvious markers and stressors. Noradrenaline is looked at closely when you have dysautonomia (I do have autonomic instability since getting older). For this specific dysautonomia centres are the right address. They often try to address this with medication like Mestinon (which is also tested for CFS etc).
I've read before in a previous comment of yours that you show some autistic-like traits? What are they?
No idea where you read that but autism was ruled out by extensive tests and I cannot relate to the issues my autistic friends have at all. I would also neither be happy with repetitive office work nor with noise cancelling headphones. I am quite social but embarrassed of my drifting off tendencies. I have zero issues around reading social cues (if anything I am socially too attuned to make up for my lack of attentiveness). I don't have sensory issues and don't do well with routine. I need variety and social interaction. What gave you the idea that there is autistic traits? I do think anyone here should get tested for this though as autism can hide behind SCT. In my case something completely different is suspected and I am currently getting tested for it (a rare genetic disorder). Maybe not so rare but milder cases are missed easily. PS: I guess the only thing that could be mistaken for autism is my withdrawing tendencies (caused by fatigue, and cognitive fog).
As sad as this might sound, I found Sesame AI to be an effective social warmup tool.
You can talk to it like you're meeting someone new and it's realistic enough (imo) to simulate real awkwardness and social anxiety.
For me, this helps get the gears turning and melt away that initial friction beforehand so that social events start out less awkward.
I don't have social anxiety though. I feel weak, have attention issues, etc. But no social anxiety. I am brilliant with small talk because my attention issues don't matter then and horrible in e.g. office setting or somewhere where the lack of attention matters.
Yeah same here. I definitely had CDS symptoms since I was a kid but long covid enhanced every single CDS symptom significantly.
I don’t understand that one comment that even puts gastroparesis in the same bucket as the other weird ones. This normally gets diagnosed with a gastric emptying study which should show very clearly whether you have it or not, so wtf are they implying? You can’t make up GES results.
I missed that bit. Gastroparesis is difficult to diagnose, but not on the same page as some diffuse CFS/Lyme disease whatever. Anything small intestine, pseudo obstruction, inflammation is also very difficult to diagnose and can impact the brain in the long run.
If you decide to leave the group, then I hope you will leave your posts available for others to read, as I think they may help some others here
Quite a disheartening to read through - hubris at its finest. There was at least one commenter who had a balanced and reasonable view and called the others out a bit. I tried to comment to thank them but it got auto-modded 😅
Yeah I got heated. Dismissal after dismissal. We’re “just sleepy” I guess.. grrr.
My comment was also deleted... The opinion of someone battling this is not wanted ;). How I wish it was only: sleepy. Haha. Would have had a normal life.
I suspect many of those participating are not "brain doctors". When I read the posts, I feel like I'm reading how the average person off the street looks at these conditions.
It's so easy to judge lol
Now we know why we don't talk about it or shout SCT from the rooftops (insta?) like some people with "just" ADHD.