Advice please! Newly Diagnosed UK woman with ADHD – Elvanse 20mg

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    • #125612
      Raph
      Participant

      Hello everyone

      I’m newly diagnosed two weeks ago, and still at the early titration stage of Elvanse 20mg, and seeing the Benenden Psych again tomorrow morning for an adjustment.

      The biggest things I’ve noticed so far:

      * I’m very, what I can only describe as alert. I don’t need to nod off in the pm like I would normally.
      * Decreased appetite
      * Restless Legs have reduced a bit.
      * Appetite reduced
      * Mentally very, kind of astute, sharp, quick-witted etc (though I tend towards these these descriptors anyway, but have noticed a definite ramping up)
      * A bit skin-picky – fingers, scalp etc
      * Not really noticed a big increase in motivation/productivity/tackling procrastination, which I really was hoping for :o(
      * Psych called me midweek for an update, and asked me to double my dose for two single days before tomorrow’s appt. The day I took 40mg, I was mentally very sharp all day, but did not get out of bed until 6.30pm, and ate at 8pm. I almost felt like I just wasn’t able to move, or didn’t need to/want to get out of bed. It was… odd. I didn’t sleep or anything, just sat there reading and posting stuff on SM.
      * She’s asked me to make the second day I have the double dose the day that I’m seeing her, so that’ll be tomorrow morning. I’m guessing so as she can check my heart rate etc.
      * She also asked me to have two days off the tablets, which I did last week. I found myself particularly short-tempered on the first day with no meds, and I think I slept both days in the afternoon…
      * I’ve no idea what the crash is that everyone’s talking about. I’m awake until at least 1am each night – it was nearly 4 am on the double-dose day, Dear God! And still I woke up early again the next day, but still didn’t feel like I wanted to get on with anything.

      Main thing missing for me is still the lack of motivation/procrastination, which I really thought would have shifted. I pictured myself bustling about and cleaning a lot. I’m not yet! Hmmm…

      I have no idea if any of this is ‘normal’, so thought I’d post to see if anyone has any similar experiences, or advice, before I head back to the Psych tomorrow.

      Thanks all,

      Raph

    • #125651
      Penny Williams
      Keymaster

      You should only increase the medication if and when needed. While your side effects sound like it’s possibly too high a dose or the wrong medication for you, symptoms of ADHD can get worse on too low of a dose too. You need to discuss everything you shared here with your prescribing doctor.

      Here’s a primer to help you understand ADHD meds as well:

      A Patient’s Primer on the Stimulant Medications Used to Treat ADHD

      Penny
      ADDitude Community Moderator, Parenting ADHD Trainer & Author, Mom to teen w/ ADHD, LDs, and autism

      • #125928
        Raph
        Participant

        Thanks Penny

        Yes, have already read the primer – very helpful.

        My psych has raised the dose to 40mg of Elvanse. She did consider adding in Bupropion (Wellbutrin/Zyban) to help with motivation, but was concerned at my ‘excitability’ and consequently higher pulse rate when in a lively state, so I think that has been parked for the time being, until I prove I can control my pulse rate through biofeedback, and remain calm at rest ongoingly.

        Quite skin picky still… Managed to bring my sleep time forward by an hour though last night, to 12.30am

        So as of yesterday, am on the higher dose, and we’ll see where that leads over the next few weeks…

        Thanks for your advice,

        Raph.

    • #132324
      Raph
      Participant

      Hi there

      **Update, and request for others who’ve experienced the same**

      Have been on Elvanse for three months now – slowly titrating up from 20mg to maximum dose of 70mg.

      It stays in my system comfortably for at least 10 hours, and the main indication I have that it’s wearing off is my RLS starts up! No major crash like some have described with other meds.

      My chief concern is that while I feel alert, I’m feeling little other benefit, irrespective of the dose size.

      I was hoping for a big motivational surge in wanting to do the army of things I’ve been neglecting/putting off/avoiding for a long time, but no shift at all, really.

      I just don’t want to do them, but really need them done.

      I’ve also noticed that each time the dose is titrated upwards, I have a day of what I can only describe as physical inertia (not tiredness) but coupled with intense hyperfocus/overfocus. An example: The day I moved to 70mg I spent the whole day in bed, barely moving, until 6.30pm. I was reading twitter on my phone, scanning articles and links – lot of interesting things. I didn’t eat, I didn’t drink, I didn’t pee. For hours.

      I was almost held in a kind of focus-trance-limbo. Aware I really should get up, but not being able to do so.

      This also happened right near the beginning of taking Elvanse, on a lower dose.

      I’ve shared this with my nurse-prescriber, who in conjunction with the psychiatrist has asked me to trial Concerta XL (slow release). I know the delivery method and uptake process are different, but ultimately as they both help my brain release norepinephrine and dopamine, won’t the result be the same? Or is it less mathematical than that?

      I am desperate to find something that will alter the way I feel about getting important things done in my life, as while I feel more alert, I feel I’m still drowning in unmet responsibilities, which is only adding to my overall feelings of inadequacy and ever-rising anxiety levels… 😔

      Three months on, I had expected a significant shift, so feel rather disappointed.

      I’d be interested to hear from anyone else who has experienced this, and found a solution that works for them.

      Thanks.

    • #168914
      Chickster
      Participant

      Interesting post. Im on Elvanse too & while part of me feels it changed my life (it makes me so much more tolerant & calm) Im like you, totally un motivated. And I used to be very motivated at work. Ive never been so bad at housework & while Ive put that down to depression actually I dont think it is. Ive had no motivation to exercise since forever either, & cant go to bed early – its not good. Im on blood pressure meds too, so may be able to get away with welbutrin (I used to take it so have a stash).
      Re Concerta, it does work slightly differently. I really liked Ritalin though of course it wears off super fast. Concerta XL could be a good alternative – though as an NHS user could be hard to get.

      Good luck & do give the Concerta a try. You arent imagining your side effects & its worth getting it right.

      • #170371
        Kellyd0407
        Participant

        Hi – I’m an American expat currently living in the UK for the time being (until I can get back to New York) next fall.

        Since I’ve moved I’ve had a nightmare of a time getting any of my medications. In the US I was taking Buproprion, Zoloft and Adderall. I have only been able to get the Zoloft and even that has been difficult. I have a Visa and have an NHS insurance number, but have had no luck finding any NHS doctor who acknowledges ADHD as a legitimate condition. I’m also shocked that I can’t even get Wellbutrin! I’ve been told it’s only prescribed for quitting smoking. That said, I’m open to trying a private option but have found most of them to require ridiculous initial tests that are thousands of pounds which I can’t afford right now. Do you have any suggestions for practices that are ADHD/anxiety friendly? I’m feeling very overwhelmed by the judgy rude reaction I’ve gotten every time I attempt to see a doctor. Thanks so much!

      • #172022
        Musosoul5
        Participant

        Hi, I’m a pretty late-diagnosed adult (fifties) – misdiagnosed since forever, mostly with anxiety issues, since my twenties. Have been prescribed Elvanse 30mg to start with and I really and honestly don’t think it’s doing anything. Was super-excited to be diagnosed and have been so looking forward to feeling different – less hyper, less manic, calmer, etc. etc.- but… a bit low now. Maybe the dose is wrong? – I have an appointment (by phone, of course) to discuss it in a couple of weeks. But if 30 mg is doing NOTHING surely even the top dose – which I think I read is 70 mg – won’t change my life. All advice gratefully accepted!!!

      • #172043
        Penny Williams
        Keymaster

        There is a process of trial and error and titration to find the right medication and dosage for each individual. Your doctor should start with the lowest dose and increase only if and when needed. There’s a big difference between 30 mg and 70 mg, so don’t discount this medication yet.

        There are two types of stimulants: amphetamine (Adderall, Vyvanse, Evekeo…) and methylphenidate (Ritalin, Concerta, Quillivant…). Almost everyone does well on one type or the other, but not both.

        For your current med, it could be the right type but you need a higher dosage. Or, it could be that you need the other type of stimulant.

        A Patient’s Primer on the Stimulant Medications Used to Treat ADHD

        ADHD Medications Rarely Work Perfectly on the First Try

        Penny
        ADDitude Community Moderator, Parenting ADHD Coach & Author, Mom to teen w/ ADHD, LDs, and autism

    • #172737
      Bethewers
      Participant

      Iv been on Elvanse a year in July, I started on 30mg and the day I took it I felt a differance, I could sit down at my desk for longer, I wasnt so ‘bouncy’ and energetic and I noticed I wasnt getting in trouble for being away from my desk. I am currently on 50mg and still have all the same benefits. I still do get days where I cant find the motivation to start something that needs doing. (Iv been trying to motivate myself to decorate my bedroom all weekend) I dont get hungry half as much as i used to but what i found works for me is having my biggest meal for breakfast before my meds kick in and then having smaller meals throughout the day. I also take my meds as soon as I wake up on a morning so then I can sleep at night, iv took it later in the day a few times and struggled to go to sleep so I found it’s better to take it as soon as you wake up. I think your problem might not be the meds but the fact that the meds cant solve our ADHD all together, theres still other things we could try to help us when it comes to motivation we just need to find what works for us, we just have to remember the meds cant solve everything and for some things we will have to find things that work for us 😁

    • #180101
      Neilc
      Participant

      I’ll tell you the truth about Elvanse ( I registered especially to reply to your post ! , Lucky you ). Don’t worry , it’s not a negative .I’ll give you a specific example of my situation , I’ve taken 4 weeks off work to do some DIY on my house. I have been on 50 mg for 4 years , I finished work on a Friday and thought I’d have the first weekend doing nothing ,then thought I’d have the first week doing nothing …. You get where this was going , until I took my medication .if you don’t take your medication you will stay in bed thinking about all the things you should be doing whilst going on eBay and watching YouTube videos about cats , or UFOs or anything .
      I was diagnosed when I was 40 , the weird thing is I was often distracted before then , and a bit tired but I now find that if I don’t take my medication im exhausted and to be honest a bit depressed, although the medication sorts this out ( which is a bit sad if you think about it ). What I find with the medication ( a higher dosage than yourself ) is that when it kicks in I want to start doing everything all at once and (re DIY) forget that I don’t require all the relevant skills to do everything ( no superpowers ) . Also don’t forget that this medication is taking you up to the level of a person without ADHD, not beyond.

      I wish you all the best , as I say I’ve been on it for over 4 years , I don’t know where I will be in 20 years because I’m sure it says on the paperwork it should only be taken for 6 months . I mentioned this to my Dr , she said that’s for her to worry about .

      One final thing , just a bit of warning in advance , when you describe your symptoms to friends , family members ( short temper , tiredness) , they will say ” I think I’ve got that ”

      It’s Annoying

      Good luck , Elvanse works .

      Neil 45 3/4 years

      (Just out of bed )

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