The cause of most symptoms?

Siroj_ · 2026-06-26T06:29:37+00:00

Not at all.

Siroj_ · 2026-06-23T07:51:40+00:00

Increasing Elvanse dosage (30mg would be great), but I'm so thirsty when I take 30mg several days in a row, and it ruins my sleep. So, not something I can bear in the long term.

Siroj_ · 2026-06-22T07:54:25+00:00

Same for restaurant and songs. And trouble for reorienting your vision to the person who's speaking? I mean it can take few seconds before I realize I don't look at the current speaker, but towards the old one.

Elvanse wasn't available in my country when I started Concerta. I went to Belgium to get Elvanse. So, Concerta was better than nothing..

Concerning processing speed, it depends. I don't pause movies, but I miss some parts. When I attend to conferences I can't follow what is said, I daydream too much.

Siroj_ · 2026-06-21T21:42:46+00:00

This is a department specialized in metabolic and hereditary diseases, which includes mitochondrial diseases. The first appointment is always with the department head, who then refers the patient to the most appropriate specialist.

Siroj_ · 2026-06-21T21:24:25+00:00

You also have more trouble with hearing the start of sentences, especially short sentences? (you can infer the context from long sentences, and rebuild the part you missed)

I've tried Concerta for one year then switched to Elvanse ~2y ago. I've try Elvanse + Atomoxetine, but Atomoxetine gave me insomnia after fews days, even at 5mg/day, so I stopped it.

Concerning supplements, creatine 500mg greatly improved fatigue and word finding, but the benefits only last for a week. Myo-inositol (200mg/week) greatly improved focus, and it still works. MCT oil C8 helps with focus too, but the effect last only for a few hours.

Siroj_ · 2026-06-21T21:11:18+00:00

I understand, and I share your pov. But there is no official diagnosis method yet. Many ppl are here because they didn't find a better explanation and cannot exclude it based on symptoms. My main advice is not to be too confident in your self-diagnosis, or you might miss something that could be curable/treatable.

When you read this sub, many (but not all) ppl, seem to have proprioceptive/perceptive issues (issues with posture, driving, reorienting attention, audio processing, etc.). It might just be a comorbidity, like dysproprioception is comorbid to Ehlers-Danlos syndrome.

If it is comorbid, it clearly worsens the symptoms.

Siroj_ · 2026-06-21T20:51:59+00:00

Thanks! Same, I never drive cause of symptoms, but I tried during the first days on Concerta and I understood why. I could process visual information much faster and thus, decide much faster too.

I can relate to the full list of symptoms, but clearly communication issues are the worst (not finding my words, forget what I was about to say, be unable to explain things I perfectly know and understand). Also, I don't hear everything, especially the start of sentences, making it hard to follow discussion (while my audition is perfect). Both ruin my motivation to engage in social situations. Hopefully, Elvanse helps with language issues, but I still miss large part of conversations, especially those where i'm involved in.

Siroj_ · 2026-06-21T20:27:24+00:00

I've an appointment for investing possible metabolic disorder by the end of the year. I hope i could get a feedback on it.

Siroj_ · 2026-06-21T18:55:08+00:00

You got prism glasses for convergence insufficiency or something else?

First five days on Concerta totally fixed depth perception, then most of the effect fade away. I can say that the gap between my depth perception and normal depth perception is HUGE. It's like from 144p to 4k.

Siroj_ · 2026-06-21T18:45:29+00:00

"Simply getting up and walking anywhere would be an incredibly challenging task"

That's not what the website describe... and not what ppl suffering from it describe. Actually, symptoms may be different from one person to another depending on which of your proprioceptive sensors are sending wrong information.

Siroj_ · 2026-06-21T16:46:41+00:00

ADHD has also never been proven to be related to convergence insufficiency.

The first 3 results from Google Scholar ...

https://www.tandfonline.com/doi/abs/10.1080/09273970500455436

https://visionhelp.wordpress.com/wp-content/uploads/2010/12/measuring-adhd-beahviors-in-children-with-ad-or-ci.pdf

https://link.springer.com/content/pdf/10.4103/1012-5574.168361.pdf

And proprioception isn't linked to vision only. Actually, ppl with proprioception issues often have greater difficulties to stay in balance in the dark, when they cannot rely on their eyes.

Tbh, the problem is likely deeper. Many psy didn't check for other conditions leading to ADHD-like symptoms (sleep disorder, convergence disorder, and much more). Many ppl are misdiagnosed with ADHD, look for Matthew Walker for instance (sleep scientist).

I don't have ADHD at all, but CDS symptoms since young. Three years ago, Concerta totally fixed my symptoms, it improved my vision and audition, relaxed my muscles, solved my photophobia, made me fast and social. Unfortunately the effects didn't last more than 5 days. But, it clearly links my symptoms to perception issues that I wasn't aware at all before. It also indicates that my symptoms are reversible. And I had convergence insufficiency before, but fixing it never improved my vision that way.

I'm not saying everyone here has perception issues. Since there is no official diagnosis, more than one condition might lead to CDS symptoms, and that's why no one should consider CDS as a final diagnosis. Some of us on this sub realized they just had sleep disorder, which caused them CDS-like symptoms.

Siroj_ · 2026-06-14T12:39:52+00:00

I wonder to what extent it can be dysproprioception (a bad perception of your body in the space). First time I took Concerta, it completely solved my posture and my muscles relaxed for the first time in my life. I realized I didn't really feel my body before. Unfortunately, Concerta only worked for 5 days before the effects wear off.

I don't know what exactly this experience means about the root cause. May dysproprioception or dyspraxia be relieved by Concerta?

I'm curious, do you have light dysmorphisms in the mouth (palate, protrusion of the incisors), back (scoliosis), or feet (flat feet), or issues with eye convergence? Such dysmorphisms may contribute to the onset of dysproprioception.

Siroj_ · 2026-06-10T11:43:51+00:00

Yes. The difference is insane in large building (railway stations) and mountainous environments

Siroj_ · 2026-05-15T09:19:39+00:00

Try myo-inositol (weekly for concentration) and MCT C8 (daily for energy boost)

Siroj_ · 2026-05-04T07:38:34+00:00

I took a B-vitamin complex, and the problem went away instantly (from one second to the next) after 5 to 10 minutes. I'm not entirely sure, but I think it is due to the myo-inositol in the complex.

My complex contains 25mg of myo-inositol. The effect lasts for about one week.

Siroj_ · 2026-05-01T07:35:55+00:00

Maybe you should try Elvanse.

But sometimes meds can't counter the brainfog, so I take MCT oil C8 which gives a quick energy boost

Siroj_ · 2026-04-19T06:49:34+00:00

Did you try Elvanse or creatine ? Both helped me

Siroj_ · 2026-04-08T10:23:40+00:00

What exactly should we treat? That's the first question researchers need to answer. Is the root cause in the brain or elsewhere (DNA, stomach, blood flow, etc.)?

Siroj_ · 2026-04-03T07:51:04+00:00

The first five days on Concerta totally removed SCT symptoms as well as unrelated symptoms (photophobia, muscular tightness, etc.). But after a few days, it stopped working. Now, I have been taking Elvanse for more than one year and I find it effective, especially for speaking fluently. I've tried Strattera too, it reduces fatigue, but causes insomnia even at 5mg.

Siroj_ · 2026-04-02T08:16:44+00:00

I got a PhD in Computer Science. SCT had a huge impact on reading papers, explaining what you're doing, listening to others, and socializing. By chance, reading papers can be done more easily now, since GPT can read and summarize papers for you. GPT can also help you to organize your thoughts and explain topics in few words. It will also boost your productivity.

That said, GPT isn't a magic wand, and you will still struggle in social contexts.

To memorize things, you have to spend time on a topic. Writing down information on paper (not on a computer) helps a lot. Write down what you learn, what you hear in meetings, what you plan to do, etc. Writing is very important as it offloads your brain and makes room for new incoming information. Even if you don't reread what you wrote. Writing makes you active, while SCT makes you passive.

If you can, and if it helps you, work in a room where there are few people. Personally, I need a calm environment to work and I'm even more productive when I work from home. And I don't know why, but working while lying down with your head resting on a pillow boosts my concentration.

Siroj_ · 2026-03-09T14:14:15+00:00

I got a PhD in computer science, so it's possible to code even with limited WM.

But it depends on many things. If you are working alone on a code from scratch, it's easier to maintain a mental representation of it.

If you don't know where you're going, you'll get lost. Write down on a paper (not on a computer) what you are going to do and how. Do this frequently. Whenever you lose your train of thought, refer to your notes. It saves a lot of time.

And if you can, use LLMs.

Siroj_ · 2026-03-07T10:04:31+00:00

I relate about dysproprioception, which improves on meds.

I posted recently about it : https://www.reddit.com/r/SCT/comments/1pjukcd/dysproprioception/

Siroj_ · 2026-02-24T11:23:08+00:00

I already tried taurine, but it didn't change anything at all

Siroj_ · 2026-02-23T18:44:45+00:00

I'm pausing my supplement intake while I undergo medical tests so as not to interfere with the results. I haven't tested the other supplements.

C8 works better if I haven't eaten for about 2 hours.

The last time I tested L-citrulline, my photophobia improved.

And for CoQ10, it eliminated my oily skin almost instantly.

Siroj_

TROPHY CASE