About to start titration for ADHD. Experiences with Elvanse?

[Adhddddd]

I am about to start titration on a low dose of Elvanse. Feeling a little terrified after hearing the psychiatrist tell me all the side effects! Wondering if it’ll be worth it!

Has this drug changed anyone’s life?! That’s pretty much what I’m looking for. I might be asking too much!!!

It’s the disturbed sleep symptom that has me the most worried! I REALLY need sleep to function!

Giving this a hopeful bump!

Started these meds today so giving it one last bump just in case anyone sees this who is on them!

It did absolutely nothing for me, at low or high dose.

Marvellous stuff! But do bear in mind that not all meds are suitable for everyone - you might need to try a few different ones at different doses to find the right regime for you.

I have fairly recently changed to 10mg of Amfexa (quick release) first thing with 50mg of Elvanse (slower release) about lunchtime.

I've not really had any side effects, but if you are struggling with sleep then your psych could prescribe melatonin as well.

To be honest, I would have put up with almost any side effects to get relief from my ADHD symptoms!

Good luck

Thank you!

I’m now one day in, and a bit nervy and jittery on it - but I’m not working this week because of half term so no idea if that’ll help my work or not!

Not sure if I’m supposed to be feel jittery? Feel a bit caffeinated, tbh.

Hope you don't mind me responding as I've just found your thread.

I'm currently on titration for elvanse too and I'm wondering how you are getting on?

I started at the 30mg which the first day I honestly could have cried .. why is my brain quiet? Is this how it's supposed to be?! It wore off quite quickly and they upped it to 50mg which I'm currently taking.

I've asked for it to be upped again as I feel it's starting to wear off after 4 weeks and I'm still struggling with emotional regulation and being severely overwhelmed when confronted with any type of stress.

The good thing so far for me is I'm actually being able to function daily (when no stress is involved) I feel motivated, I have energy and I feel optimistic about the day which I don't think I've ever felt in my life.

I had/ have a few side effects but as a pp said I'm just happy the ADHD symptoms are better as it was ruining my life.

My side effects which have since stopped were: severe dry mouth, major smelly body odour!!

Side effects I still have are: a couple of migraines after not having any for a year, wonky periods (veryyyy long and also came back after not having them a while on a certain contraception), slight tic movement of neck and face which seems to be worse if I'm tired / stressed.

Each time I up the dose I take a few days to settle into it with feeling a bit jittery and I notice my heart rate but it soon calms down after a few days.

I couldn't get to sleep very easy the first few days adjusting to the medication but that's stopped now.

I stopped after a week, I’m afraid, as it made my anxiety absolutely intolerable.

I could see that I could focus more - I didn’t need to be constantly distracted like I usually do and my brain wasn’t as noisy. I tried to make myself work and I could focus for longer when I pointed myself at it.

But the anxiety was so bad that I felt like I’d have a panic attack! It was awful. But I do have a generalised anxiety disorder anyway - it ramped it up like crazy and I was only on a low dose. Basically the things that would have made me nervy (being late, going to a new place) were suddenly x10.

My psychiatrist is going to try me on non stimulant medication, but after my elvanse experience I’m not ready to try anything yet.

I also had dry mouth and was also tired on it and slept well!

I am now coming to the end of week 5 on elvanse and thought I'd briefly give my experience so far.

Week 1, 30mg - the first day I was high as a kite, I felt amazing, ultra focused. It was like a magic switch. My pupils dilated like dinner plates!

The rest of the week calmed a lot, I wasn't sure whether I could feel any effects or if I was imagining them.

Week 2, 50mg - First day felt exactly like I had on 30mg. The next day, I came on my period and felt zero effects of the medication throughout.

Week 3, 60mg - I felt really wired, almost frantic in the mornings after taking. Really motivated, but almost like my brain was overtaking how fast my body could physically go. At 2 p.m., I crashed anxiety like never before, panic attacks, suicidal thoughts. It was awful.

After that, I decided for myself to split my 60mg dose, so I now take one x 30mg in the morning and another at lunchtime. This seems to keep me much more level, and I don't really notice a comedown. My prescriber was ok with this.

I'm now almost 2 weeks into taking a split dose, and it seems ok, so it might be where I end up staying.

It isn't magic, there's still lots of parts of my adhd that I need to learn to cope with better. However, it has been really positive for emotional regulation and the feelings of burnout. I'm not snapping at my family or crumbling under the pressure of family life like I was 5 weeks ago.

Symptom wise, I have had a dry mouth, but it's helped me to up my liquid levels a lot, which is a good thing. Some days, it's still at the point where I can't quench my thirst, but others, I barely notice it at all.

I have lost just over 1 stone in weight in 5 weeks - through a mixture of appetite suppression and because I now don't have to snack in order to get my dopamine.

It isn't a mirical cure by any stretch, but for me, on balance, it seems to be positive.

I have been on Elvanse for around 2 years and it has been a life changing experience, but with some challenges.
On the days I take it I have a clearer head than ever before, but it does increase my anxiety symptoms. Over the long term, the most undesirable side effects I've had are bad memory and decreased ability to engage in small talk and passing conversation.

It's a strange effect, but on the days I take it I'm super focused on getting through my task list. Before I would be hyper-focused on things I was interested in, but the side effect is that I'm focused on getting things done, even if I'm not particularly interested in it. On the days I don't take it, I'm quite tired but have better interactions with people.

At my last annual review, the doctor changed her advice and said to only take it when necessary. After changing the dosage and taking it 4/7 days a week, I have noticed more variations in mood.

How are you finding the difference now you have stopped taking it?

Possible adhd here. Following with interest as the thought of meds scare me with my already excruciating anxiety.

Posting as been looking for elvanse advise.

I'm starting in the morning and bit scared by the comments 😬

I'm bumping this to see how you're getting on and how others are getting on.
I'm wondering if I'll get offered medication and am not sure I want to try it reading this thread. It's taken me a long time to get my period-menopause anxiety under control and I couldn't cope with increased anxiety.
So a hopeful bump.

I've had day 1and it's been good! Do you meant you've gone onto hrt. I think my symptoms have got worse with peri but bizarrely mounjaro seem to have helped the hrt symptoms.

I didn't think it had really affected me much of today (no weird reaction, I still feel me). But I have been awake all day today (I often "crash" in a Saturday and scroll). I'm on my phone now but actually been able to Do Things today. Could be placebo I guess but I feel good. Could also be the sun. But I've done some things!! I've been more alert I think!

I have a positive story if it's helpful to anyone.

I started Elvanse 30mg via the NHS back in October. Caffeine makes me feel awful so I was really worried it would be like caffeine on steroids and turn me into a jittery, head-spinning mess. I almost stopped after a couple of days as it coincided with me suddenly feeling very low, but I think that was hormonal rather than anything to do with the drug.

I didn't get any high feeling that some people talk about. My mind felt quieter but other than that I didn't feel much different. I remember feeling very hot on and off and sweating more than usual, which is normal. I also got some intense headaches around 5pm for the first few days.

No increase in anxiety at all. Maybe some slight difficulty in getting to sleep early on but that went away. I had a decreased appetite for about a month. You might need to force yourself to eat to begin with.

I stayed on 30mg for a month then moved up to 40mg. That's when I really started to notice the changes. Suddenly I had motivation to do things. I felt compelled to clean and organise. I started to tackle things I'd been putting off for months or years. I created spreadsheets of tasks instead of scribbling things down on random bits of paper that got lost under a hundred other bits of paper.

After another 4 weeks I moved up to 50mg. Just after Christmas I went through a very stressful period with multiple things hitting me at once, including a leak that flooded my flat. At any other time in my life I would have broken down and spent days in bed crying, but this time I powered on and dealt with all the things I needed to do.

One of my biggest achievements has been painting a room. I filled, sanded and washed the walls before starting. It took three coats of paint and was tiring but I just got on with it. Before Elvanse I never would have even attempted it because from past experience I know that I would have been overwhelmed after an hour. I'd have cried, given up, hated myself, left the paint tins, brushes and dust sheets sitting there for weeks and lived with a half painted wall that served as a permanent reminder of my inadequacy. I remember talking to a friend on the phone a few years ago, she said 'anyway, I must go as I want to get this painting finished' and I couldn't imagine what it would feel like to have the motivation to want to do something like that. And yet there I was wanting to get my own painting finished! I even diligently washed the brushes and trays at the end of each day despite how tired I was.

I've started doing DIY things I've put off for 8 years because I couldn't face watching videos on how to do them. I've cleaned out my cupboards. I've thrown away junk and taken things to the tip. I've sold stuff on ebay. I've bought a range of storage boxes from IKEA to store things in, instead of just literally flinging them in a cupboard and getting angry whenever I open it and something falls on me. I cleaned the filthy edges of my dishwasher. I finally took apart the U-bend of the sink that gets blocked a week after plunging it and cleaned it out properly. I get washing up done instead of it building up until I have no usable kitchen space. The other day I bought a fluffy duster and I can't believe how brilliant it is. Before Elvanse I never dusted, I just let it build up even though I knew it was setting off my allergies.

I've been more productive in the past five months than at any other time in my life. And I actually want to do these things. It's been truly life-changing.

A few random points to add:

I notice the effects drop off significantly in the week leading up to my period, which is apparently very common. Some women increase their dose during this time or have 'top ups' with instant release dexamfetamine, but personally I didn't get on with IR as it made me feel quite wired. I might try topping up again now my body is used to it and see if it helps.

Elvanse won't magically make you get up and do stuff, you still have to consciously decide to get going. I start to feel mine working around 1.5 hours after taking it, and I try to make sure I'm doing what I need to get done by that point otherwise I can end up focused on the wrong task.

Take it with something high in protein which theoretically helps to release the medicine more steadily. I take mine with kefir or skyr yogurt.

Drink lots of water as the drug can dehydrate you. It will also help with the dry mouth.

Don't forget your ID when you go to collect your medication. I once set off on an hour-long walk to the pharmacy and 30 minutes in realised I'd forgotten my driving licence.

I've just started on mine today (diagnosed adhd at 45). 30mg initially.

It is the weirdest feeling - I'm not one of the lucky ones whose focus kicks in straight away (I've still ended up spending most of the day in bed), but my brain is quiet for the first time ever - so bizarre - it almost feels heavy - in fact my whole body feels heavy.

I do also feel quite high and spaced out.

Took the tablet at 8:15 this morning with a breakfast of Greek yoghurt, granola and fruit - dry mouth is kicking in now and a bit of a headache- but I haven't really drunk any water or had any caffeine so not a surprise!

Thankyou @kitteninabasket that all sounds amazing!!! And I had no idea about period week so again really useful.
@BloominNora How are you doing? I was told to take it at 6am!!! I've been waking up far too early though so not getting enough sleep.

Loved how it helped quieten head noise but ultimately had to give it up due to the poor sleep

@BloominNora how are you doing. I wasn't sure if mine as working but then realised I was Getting Things Done and at one point I had lunch with a friend and it went quiet and I realised I didn't have 4000 things running around in my head.

I quite like the clarity it's like stepping out of fog.

However it's 2am and I've woken up and I can't sleep.
@GoodEnoughParents is this what happened to you? I'm now worried that I rather like the drugs (!) but I not sleeping properly. How long were you on them for? I was hoping I'd adjust.

I am getting a crash about 4/5where I just have no energy at all and have felt a bit low like my batteries have tuned off. Went to bed really early last night but now wide awake from 1.30...its not enough sleep 😬

Are you drinking anything caffeinated or using any stimulating supplements?

You’re only a week in so I wouldn’t worry yet, your body is still getting used to it. I think there can also be a ‘nocebo’ effect where you worry about it affecting your sleep so it does.

ETA: I got the ‘crash’ a bit at first. That went away when the dose increased. I don’t notice the change at all now, other than in the lead up to my period when it stops working properly for me. Having said that, prior to the Elvanse the lead up to my period would be spent barely able to keep my eyes open so it’s certainly an improvement on what it was!

Thanks that's all so helpful. Prior to this I'd cut back to only caffeine before lunch but now thinking maybe I'll just have it before 9am.

I didn't think caffeine had been a problem previously but maybe it is combined.

I sort of thought after my crash it would be out my system so surprised it's still affecting me at 2am but I guess my body is adjusting!

V sleepy now zzz
But loving the difference it's making to me in the day. I've remembered I emed to check blood. Pressure. I so hope it doesn't go too high 😬

Just in case it helps anyone else this is my experience with elvanse. I started at 30mg and much like another poster I cried on the first day because it was just overwhelmingly life changing for me.

I could suddenly get shit done, no incessant internal monologue, procrastination and being distracted by everything! For the first time in my life (aged 41 at time) I was able to flow from task to task completing them one at at time.

Things that occurred for me to potentially look out for were - dry mouth, appetite suppression and having trouble getting off to sleep.

Things that helped were making sure I took my meds early before 9am but ideally around 7am - making sure I ate something protein based before taking the meds - greek yogurt, boiled egg, a protein smoothie. Definitely make sure you try and drink a lot of water during the day.

I would recommend that you try and have a healthy meal prepped for the end of the day that can just be heated quickly or eaten cold. My downfall was having no appetite but once the meds wore off I was suddenly ravenous and would binge eat rubbish to get quick empty calories and dopamine hit.

I have only ever been on elvanse so I can't speak to other stim meds but for me the 30mg dose plateaued quite quickly within a few weeks when I started to have a regular 3-4pm bout of fatigue. I'm now on 50mg which seems to be doing the trick.

Hope this helps someone and feel free to PM me if anyone wants to ask questions.

I didn't think caffeine had been a problem previously but maybe it is combined.

@FatsiaJaponicaInTheGarden they're both stimulants so combining them increases the risk of things like insomnia, palpitations and high blood pressure. One coffee before 9 sounds like a good compromise. Once you've finished titration you could try another cup and see how you feel.

OK I think - I did a week on 30mg and went up to 50mg yesterday.

The 30mg cleared my head in terms of the noise but didn't really help me to focus. We'll see if the increased dose helps.

I was just talking to someone today about the noise - they said they would find it weird as they like their own company (as do I) and would feel lonely without the noise. I hadn't thought about that, but it made me realise that the lack of noise actually makes me feel more at ease with myself, so I'm going to lean into that and try and get back into reading.

I think it would be working better if I hadn't got into such bad habits around avoiding things I don't want to do, so really need to book some ADHD coaching in to go along side the meds to try and break those (like being on here when I should be working on a document!).

I have however, noticed a massive reduction in my anxiety - I was in a teams call the other day which the chief exec was on - put my hand up to say something and then completely blanked. I said "sorry, I've completely forgot what I was going to say" and when I remembered a few seconds later, put it in the chat.

Pre-diagnosis, I would have waffled massively and then spent days worrying that I looked really stupid and probably avoided the people who were in the meeting. But now, because I recognised it as part of my distraction I was much more able to put it in a box and move on!

I've also got better at telling people if things are delayed or whatever, rather than burying my head in the sand!

Not sure how much of that is the meds or just the diagnosis, but I have noticed a lot less general underlying anxiety - really hoping that when I'm settled on the Elvanse I can come off the Sertraline!

Side affects wise getting a few headaches and sleep is a bit hit and miss but nothing horrendous. While it had got better lately, I'm used to poor sleep from my pre-diagnosis anxiety - but the difference now is I'm not awake and suffering with RSD, guilt and a million ever revolving thoughts - the awakeness is more physical than mental if that makes sense. I HATE the dry mouth though!

Luckily I'd already cut down significantly on my caffeine over the last year - I was only having two cups of coffee in a morning and then drinking herbal tea the rest of the day, so it was no bother to switch to decaf - I am very occassionally having a can of diet coke, but not every day.

Also to add, the week I started on the meds was the week I was due on my period (I think - I have a coil, so don't really get periods, but other symptoms were there), so will be interesting to see how I am the rest of the month.

I'm also a lot more relaxed and understanding about certain habits - for example when I go to bed, I have to scroll on my phone until I am dozing off or if I wake up in the night to try and get back to sleep.

DH doesn't get this - he thinks the scrolling is why I couldn't sleep, but now I understand ADHD better I know that my brain needs the stimulation to relax so I'm at peace with it. I would like to try and shift to reading rather than phone - but need better focus for that.