hey there hexbear nd gang! it's that time of year for the first time ever!

here we are once again approaching the end of the year according to the roman imperial calendar that we all have to use for some reason. it's the winter holiday season in the global north, a time of great symbolic significance to many people.

and so, i want to solicit your thoughts about this community, what it means to you, how you'd like to see it evolve, changes in moderation policy, suggestions for thumbnail and banner images, or anything else related to the comm or neurodiversity in general.

or just come hang out!

i also want to invite applications for new moderators for this comm. what would you like to do as a moderator for c/neurodiversity?

personally i've largely been a placeholder, but i do love this community and i want to see it grow as a shared and safe space for our neurodivergent comrades to talk about ourselves and with each other. i also want to do better and want your input about what that means.

c/nd has a well behaved user base so we don't need extra mod help for enforcement or anything like that. what i'm mainly looking for is fresh perspectives on community engagement and growth.

there is absolutely no requirement to disclose any personal information about yourself, just to make that clear. but if you're interested in moderating this community, please contact @CARCOSA@hexbear.net, myself, and/or the other nd mods with an application.

if deadlines help motivate you, you have 3 days from the time you read this.

if deadlines harm your motivation, don't worry about it. if an application comes in a month or two from now of course we'll still consider it. this isn't a job, i'm just asking for volunteers to help moderate a small internet message board.

Application

What is your Hexbear username?

Do you have any preferred pronouns?

What are your thoughts on capitalism?

What are your thoughts on imperialism?

What are your thoughts on trans rights?

What are your thoughts on racial justice?

What are your thoughts on neurodiversity?

What do think about current and previous protests around the world?

What are your thoughts on Veganism and Animal Liberation?

Do you have any experience with other leftist online communities? What did those experiences teach you?

What is your approach to moderation, and how do you work with teams?

How do you deal with online drama and people who try to start things for the sake of it?

Do you have any ideas for c/neurodiveristy community engagement?

What is your general time availability? (amounts, common browsing times, etc)

Element information

Element is a messaging app that lets you talk to people over the Matrix protocol.

To get started, check out this link, where you can choose to either download Element for your platform or, if on a computer, open it in a browser ("Launch Element Web").

The instructions that follow are for the desktop application and the web application, but the process is similar on all apps:

  • Press "Create Account"
  • We host our own Matrix server, so if you want you can change matrix.org to chapo.chat. This is completely optional; users who sign up with a matrix.org username can still talk to people with chapo.chat username. (Note: It is chapo.chat, not hexbear.net. Also, registrations aren't always open on chapo.chat; if they're not, just create an account on matrix.org)
  • Fill in a username and password
  • Hit register, and you're done!
  • Sopje
    ·
    1 year ago

    How are you medicated ND’s dealing with medication having less effect over time? I really don’t wat to go to a higher dose cause it feels like a slippery slope to me.

    • ReadFanon [any, any]M
      ·
      1 year ago

      Tolerance is a tricky thing.

      One part is that short-lived mild euphoria that comes with starting/increasing stimulants which wears off after somewhere between a day and a week. That's sort of like a pseudo-tolerance thing.

      One part is reaching a new normal and realising that your improvements have plateaued, that the meds work to alleviate ADHD symptoms to some extent but they do not eliminate them. It should be noted that if this describes your experience and you experience a rapid decline in your ability to manage your ADHD symptoms towards the end of the day or, if you menstruate, around the time of your period then you need to speak to your doctor about bumping up your meds.

      In the literature there's a really broad divergence across who develops a genuine tolerance to meds - some shows it to be extremely low to being non-existent whereas elsewhere it is shown to be somewhat high. If a tolerance is going to develop it seems as though it should develop in the short term (i.e. within a 6 month period.)

      If you have gained weight it's going to negatively affect stimulant efficacy.

      One of the meds which can increase the effect of stimulant meds especially in ADHD is guanfacine and it's a really good augmentative med for stimulants (when it's tolerated) which I won't go into here but that might be an option to consider. Another is atomoxetine which works in a very different way from guanfacine but is generally less tolerated, although for the people who it works for it's a bit of a wonder drug going by reports. There are other meds which are off the beaten path for ADHD which are worth considering here too.

      It could also be specific to the particular med you're taking and you might find that switching to another doesn't have the problem of tolerance. Note that if you're in the US that Adderall and Vyvanse are chemically very similar and if you're on one of them then I would anticipate that you wouldn't get any benefit in this regard from switching between those two. (If you can even get your hands on Vyvanse these days.)

      One way that tolerance can be managed is by taking a break for a day to a few days, although this isn't always within reach of people due to lifestyle factors or their unmedicated baseline. Given the stimulant shortage which is now affecting the whole world (thanks DEA!), tolerance breaks on days where you are sick or you are sleeping in and taking a day off are a preventative measure because having a cache of extra meds tucked away somewhere can make a huge difference if you're faced with a shortage.

      Without knowing more about your specific situation it's hard to determine what's at play here but if you want more info let me know and I can share what I know, although as always be cautious about how much personal info you put online. Tbh I feel like this one is going to be best managed by a prescribing doctor since there's are a lot of moving parts but I can give you broad advice and some things to consider.

      • Sopje
        ·
        1 year ago

        Thanks a lot for the elaborate response! In a few months I’ll hopefully get to talk to a psychiatrist about it (waiting lists are very long and untrustworthy). When I started taking the meds it really helped with my chronic fatigue, but after 1 or 2 years I feel like I’m back to where I started. For other symptoms the meds work fine I think. I was under the impression that tolerance build was normal, so I assumed that that was the cause for my returning symptoms. But there are many other possible reasons as well.

        Luckily there’s currently no shortage of the medication I take where I live.

        • ReadFanon [any, any]M
          ·
          1 year ago

          Ah, interesting.

          Chronic fatigue is such a slippery diagnosis. This is just my armchair expert opinion but I think chronic fatigue is sorta like a wastebasket diagnosis - when you're dealing with a set of symptoms that are difficult to pinpoint then you often get put into these diagnoses. That's not to say that something like chronic fatigue or borderline personality disorder doesn't exist or have real-world impacts on people but it can be really easy for doctors to just shrug their shoulders and give someone a "Too hard, nothing I can do - sorry!" diagnosis.

          So for chronic fatigue and ADHD (any other diagnoses or suspected diagnoses btw?) there's a few things that I'd want to eliminate:

          First off there's dietary stuff. It's not uncommon for people on stimulants to have a markedly reduced appetite. If you notice that you're skipping meals regularly or only eating small meals then, in no particular order I'd be looking at: Vitamin B levels (especially if you're vegetarian or vegan), iron deficiency (especially if you're AFAB), vitamin D, and chronically low protein intake.

          While the symptoms of low protein intake are really hazy and difficult to figure out, protein provides the essential building blocks for neurotransmitters and if you're low in it for an extended period and you're an ADHDer then at some point your brain's fuel tank is gonna start running low and that could be the cause of a relapse in chronic fatigue symptoms.

          The easy fixes/diagnostic probes are to supplement your diet here.

          Arguably, most people are low in Vitamin D in the developed world and low to moderate supplementation is of minimal concern.

          Vitamin B levels are of particular importance if you're a vegetarian or vegan, especially B12. Low to moderate supplementation is of minimal concern here as well.

          Supplementing iron in the case of anaemia takes a few weeks before you'd expect to see significant improvements, so if you choose to do this then I'd give it a solid month of fairly consistent supplementation before I'd expect to see results.

          Low protein intake would be easy to spot by journalling a couple of day's worth of your diet and doing napkin math. Or you could just throw some protein powder into a smoothie for breakfast every day for a week or two and see if you notice any changes.

          The next thing I'd look at is if there are any problems with your sleep because sleep deprivation is really hard on ADHDers and it's very likely to cause an aggravation in symptoms. If your chronic fatigue symptoms are, in part or wholly, due to ADHD symptoms (if you're combined type or particularly if you're inattentive type) then this is definitely worth considering.

          Have you changed your lifestyle or started working late shifts at work?

          Are you taking meds too late in the day and is this disrupting your sleep?

          Do you have any breathing problems such as asthma or suspected sleep apnoea?

          Note that you might have chronic low-grade asthma symptoms that are going untreated which may be causing symptoms that are mimicking chronic fatigue. A long-acting beta antagonist used regularly over a couple of days would eliminate this as a possibility, as would corticosteroids but they take a lot longer to kick in although they're far more suitable for maintenance.

          Also note that sleep apnoea can be silent so while snoring and audible breathing irregularities are a good indication of sleep apnoea, the absence of them isn't proof that you don't have it. Being overweight is a major risk factor for this so if you've had significant changes in your weight then that might make this worth considering.

          The next thing I'd be looking at is an increase in depressive symptoms. If we're working with a dopaminergic or noradrenergic hypothesis for depression then a stimulant would have alleviated the depressive symptoms and, if this was a causative factor for your chronic fatigue, then you would have seen a reduction in the chronic fatigue symptoms which seems to track based on what you've reported.

          This one is above my pay grade but serotonin has an inhibitory effect on dopamine in certain parts of the brain. If you've gone onto an antidepressant and noticed an increase in your chronic fatigue symptoms then that could be a cause.

          Conversely, if you're experiencing a drop in serotonin then this may also be a cause for aggravation in depressive symptoms which could have a flow-on effect with chronic fatigue symptoms.

          Last candidate to consider is norepinephrine. Are you taking any blood pressure medications or an ADHD med like guanfacine or clonidine? These especially can impact norepinephrine and if you've ever taken too much of something like clonidine then you've had a crash course in what chronic fatigue can feel like.

          The final thing that may be of relevance here is catatonia. This is not something which is prevalent in ADHDers however its prevalence is quite high amongst autistic people and with certain mental illnesses, so if you have comorbidities here or suspected comorbidities then that would make this next bit worth considering. Otherwise, probably not.

          Catatonia is poorly understood by psychiatrists and it's even worse in the general population. I won't belabour the point but certain types of catatonia can closely resemble chronic fatigue symptoms.

          Stimulant meds do treat catatonia, mostly, however it's a mixed bag and they can aggravate catatonia and its underlying causes as well.

          Catatonia is chronically underserved in the literature and I'm unaware of any long-term studies that have looked at treating catatonia with stimulant monotherapy so, while stimulants have been shown improve acute episodes of catatonia in preliminary studies, I would suspect that in the long term they would either exacerbate them or lose efficacy for treating those symptoms. But that's more of a hunch based on inference than anything where I point to studies to prove my point directly.

          I've been threatening to make a masterpost on catatonia for a while now and I haven't gotten around to it...

          Long story short, if you suspect it could be catatonia then a diagnostic probe of lorazepam is the gold standard (you'd probably need an open minded psychiatrist to prescribe this). Zolpidem appears to work about as well as lorazepam and it's easier to get your hands on for a diagnostic probe (in some countries it might be easier to get zopiclone which is essentially the same for these purposes.) Longer term treatment and management of catatonia is complex but if you are at the point of considering a diagnostic probe then I can provide you with more information about this - just ping me or DM me.

          So, TL;DR:

          • Get a blood test, if possible. Check your levels of iron and vitamins B & D in particular, and other likely candidates for chronic fatigue such as hormone function.

          • Add extra protein into your diet for a while

          • Eliminate breathing problems as a cause (asthma, OSA etc.)

          • Eliminate sleep problems as a cause (OSA, lifestyle factors)

          • Eliminate low blood pressure as a cause (BP meds, hypotension - get your BP tested)

          • Speak to a psychiatrist about any recent changes to your medication regime that may be suspect, especially re: antidepressants, BP meds, and ADHD meds such as clonidine and guanfacine

          • Speak to a psychiatrist about striking the right balance of serotonin, dopamine, and norepinephrine (they should be doing this anyway but yeah...), adjust meds accordingly

          • Possibly consider catatonia, especially if you are autistic (or suspect that you are) or if you have comorbid mental illness, especially psychosis, schizophrenia and related disorders, bipolar and related disorders.

          Of course I'm no doctor, I'm just some nerd on the internet, so treat everything I've said with the importance that an anonymous, unqualified stranger on the internet deserves. I haven't gone into a lot of other factors that may be contributing to your chronic fatigue such as post-viral syndrome (especially long COVID) or things like Lyme disease or chronic rickettsiosis so don't take what I've said as being an exhaustive list either. But this is mostly just the basic stuff which a diligent psychiatrist would want to rule out so if you're able to get a head start on it then it's going to make the best use of your time with them.

          Also feel free to take any questions I've posed above as being something for you to consider or as a conversation to bring to your doctor; don't go sharing information when you don't feel comfortable in doing so or if it's going to compromise your safety or wellbeing.

          I hope that there's something in here which is useful to you but more than that I hope that your health improves.

          • Sopje
            ·
            1 year ago

            Since I’ve had the chronic fatigue for long time, I’ve done a lot of research myself on the subject as wel. Blood wise I am mostly fine (low on vit D but who isn’t, I take the max daily dose advised to keep up). I’ve experimented a lot with food, searching for any allergy/intolerance that might be a cause and I also didn’t really find anything. I am very mindful of what I eat because of my symptoms (if I’m not mindful they get worse), so I also don’t think that’s a reason. The most likely cause in my opinion is my ptsd which has not been treated yet.

            When I started taking dexamphetamine 2 or 3 years ago I suddenly had much more energy and it seemed like my symptoms were gone. As you know these effects are now gone, and I initially thought it was due to tolerance. I think possibly the excitement of a new chapter in my life (having an adhd diagnosis) and the side effects of dexamphetamine gave me more energy for a while. At the moment I’m putting my hope on treatment for my ptsd for a more long term solution.

            Catatonia is certainly an interesting phenomenon, although I don’t think it applies to me. I think a longer post on it can be very interesting for this community. I’m sure many other people on here haven’t heard of it before (like me). And it would be interesting to read how others relate to it.

            Thanks for your suggestions, I’ll look a bit further into some of the things you mentioned to see if they might lead somewhere.