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#guanfacine — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #guanfacine, aggregated by home.social.

  1. CW: ADHD (AuDHD) meds - positive

    Had follow-up with ADHD med provider earlier today. Went very positively.

    Sticking with split dose of lisdexamfetamine (Elvanse) at 40 mg then 20 mg (~2 hours apart) daily.

    Increasing guanfacine (Intuniv) dose from 4 mg to 5 mg nightly.

    The imbalanced lisdex dose is helping more with giving us more of a morning boost, whilst letting us wind down faster in the evenings.

    The guanfacine is continuing to help with RSD and baseline anxiety. Also counteracts the increased heart rate and blood pressure of the lisdex.

    The meds aren't a miracle fix for everything AuDHD related, but they make it possible to function during continued burnout... and that's saying something.

    #ADHD #AuDHD #lisdexamfetamine #Elvanse #guanfacine #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #AuDHDBurnout

  2. CW: Meds (ADHD/AuDHD) - switching split dose from 2 equal doses to 1 larger and 1 smaller dose

    We've been on a split dose of lisdexamfetamine (Elvanse) daily for a while now. This has involved 2 x 30 mg doses, typically between 90 to 120 mins apart.

    As of today, at our request, we're trialling a split dose where we start with 40 mg, then follow that with 20 mg within the same approximate time window.

    The hope is that this will help give us a little bit more of a quicker boost to focus in the morning, whilst giving us a bit more of a drop-off in the evening.

    We're also still on guanfacine prolonged release (Intuniv) nightly alongside the lisdexamfetamine, which has honestly been fantastic for us as an AuDHD entity with intense anxiety and RSD. We're currently on 4 mg of this night, but hoping to increase it to 5 mg soon.

    Based on our own research and experience, somewhere between 4 and 6 mg should be ideal. 5 or 6 mg will likely be the sweet spot.

    Per previous posts we've done, it took a lot of persuasion and self-advocation to convince our UK ADHD healthcare provider to even let us have a split dose of lisdexamfetamine, let alone convincing them to prescribe a combo of complementary meds, since both are unlicensed (aka off-label).

    If you want to do the same, we recommend preparing links to articles or resources showing:

    • The benefits of a split dose.
    • The benefits of a combo of meds.
    • The known interactions between such meds, such as via a drugs interaction checker.

    You should be prepared to:

    • Be advised that they may need to discuss this further, rather than agreeing immediately.
    • Be told that they can only make one change to your medication at a time.
    • Advise them in detail why you are making this request, from a neurodivergent and mental health / wellbeing point of view.

    If you're asking for a combination with guanfacine, you may need to traumadump / mental-health-dump (after asking for consent) in order to persuade them to trial the meds.

    It's not easy, and you'll need to be as kind as possible at all times to get them on your side, but it is possible to get what you need if you get an empathetic and caring clinician.

    The above might sound manipulative, but this is what self-advocation can look like sometimes. It's a mixture of letting the mask slip a bit to be emotionally honest, employing rhetorical techniques, and being kind and polite at all times.

    It's not easy, even if you're good at all of those things.

    You can always request permission for an advocate on any calls or appointments with you to help.

    #ADHD #AuDHD #lisdexamfetamine #guanfacine #Elvanse #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #SplitDose #ComboMeds #MentalHealth #anxiety #RSD #RejectionSensitiveDysphoria

  3. CW: Meds (ADHD/AuDHD) - switching split dose from 2 equal doses to 1 larger and 1 smaller dose

    We've been on a split dose of lisdexamfetamine (Elvanse) daily for a while now. This has involved 2 x 30 mg doses, typically between 90 to 120 mins apart.

    As of today, at our request, we're trialling a split dose where we start with 40 mg, then follow that with 20 mg within the same approximate time window.

    The hope is that this will help give us a little bit more of a quicker boost to focus in the morning, whilst giving us a bit more of a drop-off in the evening.

    We're also still on guanfacine prolonged release (Intuniv) nightly alongside the lisdexamfetamine, which has honestly been fantastic for us as an AuDHD entity with intense anxiety and RSD. We're currently on 4 mg of this night, but hoping to increase it to 5 mg soon.

    Based on our own research and experience, somewhere between 4 and 6 mg should be ideal. 5 or 6 mg will likely be the sweet spot.

    Per previous posts we've done, it took a lot of persuasion and self-advocation to convince our UK ADHD healthcare provider to even let us have a split dose of lisdexamfetamine, let alone convincing them to prescribe a combo of complementary meds, since both are unlicensed (aka off-label).

    If you want to do the same, we recommend preparing links to articles or resources showing:

    • The benefits of a split dose.
    • The benefits of a combo of meds.
    • The known interactions between such meds, such as via a drugs interaction checker.

    You should be prepared to:

    • Be advised that they may need to discuss this further, rather than agreeing immediately.
    • Be told that they can only make one change to your medication at a time.
    • Advise them in detail why you are making this request, from a neurodivergent and mental health / wellbeing point of view.

    If you're asking for a combination with guanfacine, you may need to traumadump / mental-health-dump (after asking for consent) in order to persuade them to trial the meds.

    It's not easy, and you'll need to be as kind as possible at all times to get them on your side, but it is possible to get what you need if you get an empathetic and caring clinician.

    The above might sound manipulative, but this is what self-advocation can look like sometimes. It's a mixture of letting the mask slip a bit to be emotionally honest, employing rhetorical techniques, and being kind and polite at all times.

    It's not easy, even if you're good at all of those things.

    You can always request permission for an advocate on any calls or appointments with you to help.

    #ADHD #AuDHD #lisdexamfetamine #guanfacine #Elvanse #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #SplitDose #ComboMeds #MentalHealth #anxiety #RSD #RejectionSensitiveDysphoria

  4. CW: Meds (ADHD/AuDHD) - switching split dose from 2 equal doses to 1 larger and 1 smaller dose

    We've been on a split dose of lisdexamfetamine (Elvanse) daily for a while now. This has involved 2 x 30 mg doses, typically between 90 to 120 mins apart.

    As of today, at our request, we're trialling a split dose where we start with 40 mg, then follow that with 20 mg within the same approximate time window.

    The hope is that this will help give us a little bit more of a quicker boost to focus in the morning, whilst giving us a bit more of a drop-off in the evening.

    We're also still on guanfacine prolonged release (Intuniv) nightly alongside the lisdexamfetamine, which has honestly been fantastic for us as an AuDHD entity with intense anxiety and RSD. We're currently on 4 mg of this night, but hoping to increase it to 5 mg soon.

    Based on our own research and experience, somewhere between 4 and 6 mg should be ideal. 5 or 6 mg will likely be the sweet spot.

    Per previous posts we've done, it took a lot of persuasion and self-advocation to convince our UK ADHD healthcare provider to even let us have a split dose of lisdexamfetamine, let alone convincing them to prescribe a combo of complementary meds, since both are unlicensed (aka off-label).

    If you want to do the same, we recommend preparing links to articles or resources showing:

    • The benefits of a split dose.
    • The benefits of a combo of meds.
    • The known interactions between such meds, such as via a drugs interaction checker.

    You should be prepared to:

    • Be advised that they may need to discuss this further, rather than agreeing immediately.
    • Be told that they can only make one change to your medication at a time.
    • Advise them in detail why you are making this request, from a neurodivergent and mental health / wellbeing point of view.

    If you're asking for a combination with guanfacine, you may need to traumadump / mental-health-dump (after asking for consent) in order to persuade them to trial the meds.

    It's not easy, and you'll need to be as kind as possible at all times to get them on your side, but it is possible to get what you need if you get an empathetic and caring clinician.

    The above might sound manipulative, but this is what self-advocation can look like sometimes. It's a mixture of letting the mask slip a bit to be emotionally honest, employing rhetorical techniques, and being kind and polite at all times.

    It's not easy, even if you're good at all of those things.

    You can always request permission for an advocate on any calls or appointments with you to help.

    #ADHD #AuDHD #lisdexamfetamine #guanfacine #Elvanse #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #SplitDose #ComboMeds #MentalHealth #anxiety #RSD #RejectionSensitiveDysphoria

  5. CW: Meds (ADHD/AuDHD) - switching split dose from 2 equal doses to 1 larger and 1 smaller dose

    We've been on a split dose of lisdexamfetamine (Elvanse) daily for a while now. This has involved 2 x 30 mg doses, typically between 90 to 120 mins apart.

    As of today, at our request, we're trialling a split dose where we start with 40 mg, then follow that with 20 mg within the same approximate time window.

    The hope is that this will help give us a little bit more of a quicker boost to focus in the morning, whilst giving us a bit more of a drop-off in the evening.

    We're also still on guanfacine prolonged release (Intuniv) nightly alongside the lisdexamfetamine, which has honestly been fantastic for us as an AuDHD entity with intense anxiety and RSD. We're currently on 4 mg of this night, but hoping to increase it to 5 mg soon.

    Based on our own research and experience, somewhere between 4 and 6 mg should be ideal. 5 or 6 mg will likely be the sweet spot.

    Per previous posts we've done, it took a lot of persuasion and self-advocation to convince our UK ADHD healthcare provider to even let us have a split dose of lisdexamfetamine, let alone convincing them to prescribe a combo of complementary meds, since both are unlicensed (aka off-label).

    If you want to do the same, we recommend preparing links to articles or resources showing:

    • The benefits of a split dose.
    • The benefits of a combo of meds.
    • The known interactions between such meds, such as via a drugs interaction checker.

    You should be prepared to:

    • Be advised that they may need to discuss this further, rather than agreeing immediately.
    • Be told that they can only make one change to your medication at a time.
    • Advise them in detail why you are making this request, from a neurodivergent and mental health / wellbeing point of view.

    If you're asking for a combination with guanfacine, you may need to traumadump / mental-health-dump (after asking for consent) in order to persuade them to trial the meds.

    It's not easy, and you'll need to be as kind as possible at all times to get them on your side, but it is possible to get what you need if you get an empathetic and caring clinician.

    The above might sound manipulative, but this is what self-advocation can look like sometimes. It's a mixture of letting the mask slip a bit to be emotionally honest, employing rhetorical techniques, and being kind and polite at all times.

    It's not easy, even if you're good at all of those things.

    You can always request permission for an advocate on any calls or appointments with you to help.

    #ADHD #AuDHD #lisdexamfetamine #guanfacine #Elvanse #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #SplitDose #ComboMeds #MentalHealth #anxiety #RSD #RejectionSensitiveDysphoria

  6. CW: Meds (ADHD/AuDHD) - switching split dose from 2 equal doses to 1 larger and 1 smaller dose

    We've been on a split dose of lisdexamfetamine (Elvanse) daily for a while now. This has involved 2 x 30 mg doses, typically between 90 to 120 mins apart.

    As of today, at our request, we're trialling a split dose where we start with 40 mg, then follow that with 20 mg within the same approximate time window.

    The hope is that this will help give us a little bit more of a quicker boost to focus in the morning, whilst giving us a bit more of a drop-off in the evening.

    We're also still on guanfacine prolonged release (Intuniv) nightly alongside the lisdexamfetamine, which has honestly been fantastic for us as an AuDHD entity with intense anxiety and RSD. We're currently on 4 mg of this night, but hoping to increase it to 5 mg soon.

    Based on our own research and experience, somewhere between 4 and 6 mg should be ideal. 5 or 6 mg will likely be the sweet spot.

    Per previous posts we've done, it took a lot of persuasion and self-advocation to convince our UK ADHD healthcare provider to even let us have a split dose of lisdexamfetamine, let alone convincing them to prescribe a combo of complementary meds, since both are unlicensed (aka off-label).

    If you want to do the same, we recommend preparing links to articles or resources showing:

    • The benefits of a split dose.
    • The benefits of a combo of meds.
    • The known interactions between such meds, such as via a drugs interaction checker.

    You should be prepared to:

    • Be advised that they may need to discuss this further, rather than agreeing immediately.
    • Be told that they can only make one change to your medication at a time.
    • Advise them in detail why you are making this request, from a neurodivergent and mental health / wellbeing point of view.

    If you're asking for a combination with guanfacine, you may need to traumadump / mental-health-dump (after asking for consent) in order to persuade them to trial the meds.

    It's not easy, and you'll need to be as kind as possible at all times to get them on your side, but it is possible to get what you need if you get an empathetic and caring clinician.

    The above might sound manipulative, but this is what self-advocation can look like sometimes. It's a mixture of letting the mask slip a bit to be emotionally honest, employing rhetorical techniques, and being kind and polite at all times.

    It's not easy, even if you're good at all of those things.

    You can always request permission for an advocate on any calls or appointments with you to help.

    #ADHD #AuDHD #lisdexamfetamine #guanfacine #Elvanse #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #SplitDose #ComboMeds #MentalHealth #anxiety #RSD #RejectionSensitiveDysphoria

  7. CW: Musings over ADHD med combo; briefly mentions RSD, disgust reflex, and suspected ARFID

    NGL, it's honestly kinda funny to us that there was such resistance to the very concept of us taking a combination of meds to help us with our ADHD (tecnically AuDHD) struggles, given that the meds don't have any known negative interactions and actually cancel out some of the negatives of each other 😅

    e.g.,

    Lisdexamfetamine (Elvanse®)

    • Insomnia or disturbed sleep
    • Increased blood pressure
    • Increased pulse

    Guanfacine (Intuniv®)

    • Drowsiness
    • Decreased blood pressure
    • Decreased pulse

    We're up to 4 mg of guanfacine nightly now (as of Monday), alongside 60 mg lisdex (split across 2 x 30 mg doses, taken ~2 hours apart) daily.

    Aside from some minor titration issues whilst our body has been getting used to the introduction of guanfacine, we've found it is beginning to help with sleep and has noticeably helped lower our blood pressure and pulse.

    It's also having the pleasant effects of reducing baseline anxiety, which is a key component of our Rejection Sensitive Dysphoria (RSD), and lowering our disgust reflex, which became more prominent during the summer and which we think is a major factor in the increasing ARFID-like symptoms we experienced (and are still trying to recover from).

    Unlike with SSRIs or SNRIs, it doesn't make us feel numb or unable to feel sad. That makes sense, as it's basically selectively blocking some alpha-2A adrenergic receptors, which in turn is decreasing activity within our sympathetic nervous system.

    If we continue to do well at 4 mg, we'll probably ask to remain there, rather than trial going higher, as 4 mg seems to be the sweet spot for a lot of folks, and is the max dose of a single pill. We could in theory try up to 7 mg, but we're not in a rush there.

    #guanfacine #lisdexamfetamine #ADHD #AuDHD #anxiety #RSD #ARFID #SideEffects #neurodivergent #neurospicy

  8. My #tics related to severe #tourettes have changed since I stopped using #GabAPentin as a way to manage them.

    Before they were subtle, but almost never stopped as they were impossible to fully satisfy. They were smaller movements or twitches that were very frequently.

    I switched to using a higher dose of #Guanfacine which is an #adhd and tic specific medication, and now they come in waves and are more forceful, and harder to contain.

    But I can actually have some peace.

    #writing #neuroscience

  9. My #tics related to severe #tourettes have changed since I stopped using #GabAPentin as a way to manage them.

    Before they were subtle, but almost never stopped as they were impossible to fully satisfy. They were smaller movements or twitches that were very frequently.

    I switched to using a higher dose of #Guanfacine which is an #adhd and tic specific medication, and now they come in waves and are more forceful, and harder to contain.

    But I can actually have some peace.

    #writing #neuroscience

  10. My #tics related to severe #tourettes have changed since I stopped using #GabAPentin as a way to manage them.

    Before they were subtle, but almost never stopped as they were impossible to fully satisfy. They were smaller movements or twitches that were very frequently.

    I switched to using a higher dose of #Guanfacine which is an #adhd and tic specific medication, and now they come in waves and are more forceful, and harder to contain.

    But I can actually have some peace.

    #writing #neuroscience

  11. My #tics related to severe #tourettes have changed since I stopped using #GabAPentin as a way to manage them.

    Before they were subtle, but almost never stopped as they were impossible to fully satisfy. They were smaller movements or twitches that were very frequently.

    I switched to using a higher dose of #Guanfacine which is an #adhd and tic specific medication, and now they come in waves and are more forceful, and harder to contain.

    But I can actually have some peace.

    #writing #neuroscience

  12. My #tics related to severe #tourettes have changed since I stopped using #GabAPentin as a way to manage them.

    Before they were subtle, but almost never stopped as they were impossible to fully satisfy. They were smaller movements or twitches that were very frequently.

    I switched to using a higher dose of #Guanfacine which is an #adhd and tic specific medication, and now they come in waves and are more forceful, and harder to contain.

    But I can actually have some peace.

    #writing #neuroscience

  13. CW: ADHD meds - titration update

    Hey folks :ADHD_Butterfly:

    Our titration on guanfacine prolonged-release (Intuniv) tablets is going broadly well. We have been, and still are, experiencing side effects, but nothing typically that we didn't expect.

    We completed our first full week on the guanfacine last week, taking 2 mg nightly, and started taking 3 mg nightly on Monday this week.

    We're taking the guanfacine alongside lisdex (Elvanse), which we're presently still taking as a split dose (2 x 30 mg capsules daily; each capsule taken ~2-3 hours apart).

    The positive effects for us so far have been:

    • Lowered anxiety.
    • Lowered RSD.
    • Slightly lowered threshold for initiating a task we don't want to do.
    • Slightly better sleep hygiene (due to slight drowsiness).
    • Lowered heart rate and blood pressure.

    The certain side effects so far have been:

    • Increase in wind (flatulence).
    • Change in toilet schedule.
    • Drowsiness (especially upon waking).

    Something we're monitoring to determine whether it's an effect of the meds, perhaps directly or indirectly, is that we've experienced a few instances of intense, explosive (but very directed) rage :PleadingFace:

    These appear so far to be linked to trauma and/or neurospicy triggers we have, rather than just anything, but we're not sure yet.

    e.g.,

    • Accessibility issues with the NHS and DWP.
    • The mind-boggling complexity of mattress hunting, due to:
      • Dodgy mattress companies.
      • Fake (or paid for) review websites.
      • AI chatbots answering email queries!!!
      • Legit companies only selling products in stores, and providing e-tailers with bespoke mattress types which therefore cannot be directly compared without spending hours making a detailed spreadsheet, cracking the jargon code, and finding section diagrams.
    • Smart devices randomly playing music, despite no-one using their wake word and no-one saying anything like that.
    • Cold-callers not being able to read the "no cold callers" sign.

    It's not clear whether the outbursts are:

    • a side effect of the guanfacine.
    • an indirect effect of the guanfacine.
    • unrelated to the guanfacine.

    We objectively have a lot of stressors in our life, and part of how our mind has dealt with them has been to not focus on them.

    Counterintuitively, it's likely that being able to function more has meant we've had to start addressing more issues, which has increased stress in other ways.

    It's overall still a massive improvement, and we do feel calmer overall, plus we'd have had to deal with all the same issues anyway eventually. It's probably largely just a matter of managing overwhelm as best as we can.

    Plus we're still waiting on the NHS to offer us mental health support, which might -- in the long term at least -- help with some of the triggers... maybe 🥺

    #ADHD #AuDHD #neurospicy #neurodivergent #guanfacine #lisdexamfetamine #ExecutiveDysfunction #anxiety #RSD #NeurospicyRage #NeurodivergentRage

  14. CW: ADHD med titration log update

    Fedi date, erm, Thursday 2025-10-30.

    Taken a 2 mg pill nightly on Monday, Tuesday, and Wednesday.

    This is alongside our daily lisdex totalling 60 mg, split across 2 x 30 mg doses, about 2 hours apart.

    Executive function is a little down, we're feeling eepier, and we've had some mild gastro-intestinal grumbles, which seem to be fading. Perhaps a little more headachy, but not 100% that's due to the guanfacine.

    Baseline anxiety and RSD are both down. Less jitteriness too, but also been clumsier. (In fairness, we probably have undiagnosed dyspraxia 😅) Disgust reflex (from icky stuff) is also reduced, and task initiation has been a little bit easier.

    Headmate Hannah got the giggles first, and now they've mildly spread to the core (Evie) too.

    Will keep you all updated.

    #ADHD #AuDHD #lisdexamfetamine #guanfacine #neurospicy #neurodivergent

  15. CW: Quick medical (ADHD meds) update

    Started guanfacine last night at 2 mg. Just took second nightly tablet.

    Too early to tell if it's working fully, but currently feeling a little less anxious and jittery.

    Also feeling generally sleepy, despite a total of 60 mg lisdex daily across 2 doses, but not necessarily in a bad way.

    Feels positive overall so far, but very early days.

    #ADHD #AuDHD #guanfacine #lisdexamfetamine #neurodivergent #neurodivergence #neurospicy

  16. CW: ADHD meds - 1st night of new combo

    @SleepyCatten interested to know how it helps with the #RSD and also with sleep. I get pretty bad RSD myself. I also suffer from #DSPD. I'm on #dexamfetamine tablets and don't take them after 2pm but I'm still awake until the early hours of the morning most nights.

    I've considered going back to my Dr to get a script for #melatonin but if #guanfacine helps with sleep also then maybe that could be the go.

  17. CW: ADHD meds - 1st night of new combo

    Since our latest ADHD prescription meds finally arrived on Saturday, we're officially starting guanfacine tonight at 2 mg nightly.

    This will be alongside our 60 mg lisdexamfetamine daily dose (split across 2 x 30 mg capsules, taken about 2-3 hours apart).

    The hope is that it will help us with intense RSD, anxiety, and some of the jitteriness we get from the lisdex.

    Obviously we'd rather not get any of the awful potential side effects, but we'll just have to see what happens. If we do get them, it would be ideal if any side effects are limited mostly to titration :PleadingFace:

    Gonna take first dose now, alongside our normal night-time stuff, and start preparing for sleep.

    Fingers crossed 🤞 :ADHD_Butterfly: :AutismInfinitySymbol:

    #ADHD #AuDHD #lisdexamfetamine #guanfacine #RSD #neurodivergent #neurospicy

  18. CW: ADHD meds - positive

    New prescription arrived this morning 🥰

    We'll be starting the guanfacine Monday night, as Monday is the beginning of a week in the UK and -- for highly-neurospicy reasons -- we need to start any regular medications on a Monday (the start of the week).

    We're aware that the order of the days of the week don't make any logical sense, but we live in a country that follows the ISO 8601 weekday order, which means weeks starts with the moon and end with the sun.

    Also, yes: we're aware we're likely OCD too, but we can't really do anything about that right now 😅

    Someone should really redo the weekday, as well as the entire Gregorian calendar, to make them make actual sense.

    #ADHD #AuDHD #guanfacine #lisdexamfetamine #RejectionSensitiveDysphoria #RSD #anxiety #EmotionalDysregulation #ExecutiveDysfunction #neurodivergent #neurospicy #ProbablyOCDTooTBPH

  19. CW: New ADHD meds; still waiting

    (Previous post here.)

    Our ADHD healthcare provider sent us an update email earlier today, advising that our meds had been despatched.

    The email contains a tracking link for Royal Mail, but unfortunately the status of this currently reads as:

    We're expecting it

    The sender has advised they have despatched your item to Royal Mail.

    More information will be available once we have received your item and scanned it into our network.

    Hoping that this'll update sometime later today to show that they've received it and that it's on its way 🤞

    The ideal outcome would still be for these to arrive in time for us to take the first guanfacine pill on Monday night before bed, but this is still far from certain, based on all the apparently-unavoidable delays.

    It feels more than a little situationally ironic that our latest prescription, containing a med to try to help us with anxiety (and other things), is itself causing us more anxiety 😅

    The whole situation, along with the previous delays, really makes us appreciate how swift our GP and local pharmacy actually are in comparison though :PleadingFace:

    Edit: Email from Royal Mail came through a little while after we wrote this post, advising that they've got the package and will attempt to deliver it tomorrow 🩷

    #ADHD #AuDHD #neurodivergent #neurospicy #lisdexamfetamine #guanfacine #RSD #neurodivergence #MentalHealth #anxiety #RSD

  20. CW: Quick ADHD meds update - little bit of worry, but positive end

    Further to recent posts (main post; sub post), we'd been getting a little anxious that our ADHD meds wouldn't be despatched this week for us, but fortunately they entered the pharmacy processing stage today and have a Royal Mail tracking number!

    You wouldn't think this would've been an issue, of course, as the digital prescription was sent over to the online pharmacy late afternoon on Monday (2025-10-23).

    However, the UK has archaic, asinine laws for prescribing any controlled substances, so our ADHD health provider had to mail the pharmacy the paper prescription before they could issue the prescription 😖

    And the online chemist outright refused to even consider sending the prescription in parts, even though the guanfacine is not a controlled substance :Sighing_Face:

    Anyway, barring any unforeseen further delays, we should get the meds this week, so we can start taking the guanfacine from next Monday evening.

    We've got plenty of lisdex, so we weren't worried about running out: it's the guanfacine we're waiting to get started on alongside :PleadingFace:

    #ADHD #AuDHD #neurodivergent #neurospicy #lisdexamfetamine #guanfacine #RSD #neurodivergence #MentalHealth

  21. CW: re: ADHD stuff - new meds; anxiety - good news

    They actually agreed!!! 😁

    Our next batch of meds will contain a mixture of lisdexamfetamine (Elvanse) and guanfacine (Intuniv) 🥰

    We'll be starting guanfacine at 2 mg for the first week, increasing to 3 mg for the second week, then to 4 mg for the third and fourth weeks.

    Assuming no delays to issuing the meds this time, we'll start them next Monday 🤞

    #ADHD #AuDHD #neurodivergent #neurospicy #lisdexamfetamine #guanfacine #RSD #neurodivergence #MentalHealth

  22. CW: re: ADHD stuff - new meds; anxiety

    Very nearly reached the scheduled time for phone call with ADHD provider and we're as prepared as we can be, but fuck are we anxious 😖😔

    Such a bleeping irony that the call itself is partly to discuss meds to help with anxiety, among other things 🤦‍♀️🙃

    #ADHD #AuDHD #neurodivergent #neurospicy #lisdexamfetamine #guanfacine #RSD #neurodivergence #MentalHealth

  23. CW: ADHD stuff - new meds; anxiety

    We have a call with our ADHD clinic today to discuss progress on the split dose regimen. (See previous post here if you've not read it and wish to know more.)

    Alas, the call is scheduled for late afternoon, so -- entirely true to form -- we're going to be in an anxious type of neurospicy paralysis until then 😅😑😔 :Sighing_Face:

    We're confident that they'll agree to continue with the split dose of lisdex. The issue will be whether they'll be willing to prescribe guanfacine (extended release) alongside it to help with RSD 🥺

    If they don't give an immediate yes, we will make one last attempt to persuade them by highlighting that all other options we might be given alongside will have more interactions with lisdex and more negative side effects than guanfacine, but ultimately it's entirely out of our control now :Sighing_Face:

    #ADHD #AuDHD #neurodivergent #neurospicy #lisdexamfetamine #guanfacine #RSD #neurodivergence #MentalHealth

  24. CW: ADHD and mental health - little bit of positivity and progress

    We wrote a few days back about us starting a split dose of lisdex this Monday.

    We were meant to have started the new regimen a week or 2 earlier, but administration issues with our ADHD meds provider had delayed this.

    Due to the delay, we'd asked for our follow-up to be delayed. Alas, further administration issues caused that request to get lost somewhere internally, so we had a follow-up call this afternoon... 2 and a bit days into titration 😅

    Anyways, we planned for the call and were ready for it. We hadn't beent expecting it to go great, due to the aforementioned issues, but the call actually went rather well 😲

    During the call, we:

    • didn't lose our cool over the admin issues;
    • showed genuine empathy for the clinician who'd not got any of the messages through about the issue; and
    • were able to ask again -- with more clarity -- about our request for prescribing guanfacine alongside the lisdex.

    Due to having a little more executive function and emotional regulation today, we managed to fairly-decently communicate:

    • the mental health struggles we've been having over a long while;
    • the multiple different prescription antidepressants we've tried through our GP; and
    • that we've been referred for further assessment through the NHS to receive any further care, which could take anywhere from months to years for us to receive any support, diagnoses, or meds.

    We also managed to convey that there is evidence out there showing that a combo of guanfacine and lisdex has been shown to be helpful for certain ADHD and AuDHD folks who struggle with RSD.

    Whilst the outcome isn't certain at all, we did convince the clinician enough to look into it more herself and consult with the lead clinician about our request.

    We've got a further appointment scheduled with her for next Monday, where we'll hopefully find out whether they can consider prescribing guanfacine alongside the lisdex on an off-licence prescription basis.

    Anyways, crossing fingers again 🥺🤞

    #ADHD #AuDHD #neurodivergent #neurospicy #lisdexamfetamine #dexamfetamine #guanfacine #RSD
    #neurodivergence #MentalHealth

  25. CW: ADHD meds update - mostly positive

    As we're sure some of y'all know, we finally got our ADHD diagnosis earlier this year.

    Since we're AuDHD, we knew that stimulant meds were less likely to work for us, but we took a shot.

    For a long while now, our daily regimen was officially:

    The dexamfetamine was introduced, as we were feeling a noticeable drop-off in the late afternoon. It worked somewhat and we thought it was the best we'd get.

    Over time, it became clear to us that this regimen wasn't ideal, and we had additional struggles that the meds couldn't help with.

    So, we did more research whenever able. Eventually, we came to 2 broad realisations:

    1. Many folks find it helpful to split their lisdexamfetamine, taking them about 2-3 hours apart.
    2. Some folks take guanfacine alongside to help with Rejection Sensitive Dysphoria (RSD).

    It took us some time, but we were finally able to get an appointment to discuss our medications with.

    (FYI, if you live in England, you have the Right To Choose a provider for ADHD or autism diagnoses.)

    We sadly weren't able to convince the pharmacist to prescribe us guanfacine alongside lisdexamfetamine, despite plenty of evidence of it being effective, but we did somehow convince them to let us trial a split dose of lisdexamfetamine.

    As of this coming Monday, we'll be trialling a new daily regimen of:

    • 1 x 30 mg lisdexamfetamine - taken on waking
    • 1 x 30 mg lisdexamfetamine - taken ~2 hours later

    If that works, we intend to gently ask them again to review the research and evidence that guanfacine is safe to take alongside lisdexamfetamine and has been shown to be very effective in reducing RSD.

    If they still say no, we'll advise them that the alternative options our GP could offer us will have far more negative interactions in an attempt to sway their opinion. However, we are sadly fairly confident that they'll stand their ground and refuse, as this is the UK after all :Sighing_Face:

    Anyways, wish us luck from Monday onwards? 🥺🤞

    #ADHD #AuDHD #neurodivergent #neurospicy #lisdexamfetamine #dexamfetamine #guanfacine #RSD #neurodivergence

  26. The older I get, the more #medicine I have.

    List of my daily meds-

    600 MG #GabAPentin x3 for seizures, #tourettes tic calming, muscle spasms, nerve damage, and sleep.

    15 MG #buspirone x3 for severe #ptsd and panic/anxiety disorders.

    Albuterol for #asthma.

    #Guanfacine for #adhd and could help other issues, new.

    #hydroxizine for sleep.

    #flonase for nose

    I realize now I should have had these 20+ years ago, and always had these issues.

    #health #mentalhealth #writing #selfcare #reflection

  27. The older I get, the more #medicine I have.

    List of my daily meds-

    600 MG #GabAPentin x3 for seizures, #tourettes tic calming, muscle spasms, nerve damage, and sleep.

    15 MG #buspirone x3 for severe #ptsd and panic/anxiety disorders.

    Albuterol for #asthma.

    #Guanfacine for #adhd and could help other issues, new.

    #hydroxizine for sleep.

    #flonase for nose

    I realize now I should have had these 20+ years ago, and always had these issues.

    #health #mentalhealth #writing #selfcare #reflection

  28. Damn it only took like 4 years of arguing with doctors that I have severe #tourettes meaning there is an extremely high chance I have #adhd and OCD too.

    The adult #symptoms list is my entire personality, and it was diagnosed and NOT TREATED AT ALL as a child due to weird side effects or negligence.

    I have an ADHD medication now.

    #Guanfacine apparently.

    I haven't taken it yet but it was prescribed.

    Time for #research and #opinion from you guys, please!

    #mentalhealth

  29. Day 6 of #guanfacine. Sleep affected, so I have switched dose to morning. Still tweaking.

    But for the first time in several years, I was able to sit down and start working with a clear head and not feel like I was fighting my brain to do something. I could just... work.

    #pwME #LongCovid

  30. Anyone following the person healed from 20 years of 2002 #Covid (yes the one most of us narrowly escaped) by #Guanfacine? She’s getting better by the day. If this turns out to be permanent for her, GIVE ME SOME.

    #LongCovid #PwLC #pwME #MECFS
    @longcovid
    @mecfs
    @chronicillness

  31. Anyone following the person healed from 20 years of 2002 #Covid (yes the one most of us narrowly escaped) by #Guanfacine? She’s getting better by the day. If this turns out to be permanent for her, GIVE ME SOME.

    #LongCovid #PwLC #pwME #MECFS

  32. Tiny clinical study. But interesting reasoning and hopeful results. I personally think this will only work for certain long COVID folks, but still good to have vetted options.

    medicine.yale.edu/news-article

    #LongCovid #NAC #Guanfacine

  33. CW: Week recap of school drama and autistic parenting

    After a couple of severe #dysregulated situations at school and some property damage, an emergency #IEP meeting, doctor appointments, starting #guanfacine med… things seem to be calming down. I keep hoping the #rollercoaster will smooth out before too long. It’s #stressful, esp since I’m also #autistic. I don’t think most people I know get that. #autisticparenting #actuallyautistic @actuallyautistic