Hello all,So I was taken off the Methylphenidate after 3 weeks because it was making so ill. Had a break of 5 days and then have been put on really low dose (20mg) of Lisdexamfetamine or Elvanse as it seems to be called here in the UK. I've only been on it 2 days and I'm having really poor sleep.
For many reasons that I shall not bore you with I didn't realise the Methylphenidate was making my sleep worse too until now, or rather 5 am this morning as I was not sleeping. I have an extensive history of insomnia bur it does vary greatly.
My question really is does this side effect wear off in time?
I watched some videos by Edward Hallowell and am part the way through books such as ADHD 2.0. As people on here advised me to do (thank you) and it's very clear that the potential gains for medication for ADHD should not be understated. So while normally I'd avoid any medication that effected my already compromised sleep, and therefore my vulnerable mental health I'm prepared to go through poorer sleep if there is a chance it will get better in the future.
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Cat00
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Hi Cat00 My doctor started me on amphetamine-dextroamphetamine (adderall) a very low dose the only time I got side effects was when I combined it with alcohol and that caused me to feal sick, nauseous and I got really bad insomnia and spent the whole night in the shower. I now have given up alcohol and im also taking a higher dose of adderall And my sleeping is much better (I suffer from sleep apnea so I do were a mask when I sleep ) I went 35 years until I was diagnosed with sleap apnea so if you are a snorer I suggest a sleep study. I now know if im going to be drinking I make sure not to take my adderall before I do.
I don't drink, I have chronic migraines, and I don't have sleep apnea, so can't change anything there.Do you know if you should be feeling the benefits of the meds strait away? Because I didn't feel more focused on the methylphenidate or this, just tired and wired on both...
Hi Cat00 I was on a low dose for one month with no noticeable difference but this last week when doubled noticed that I was no longer sad and like you are seeing with my response way more engaged its true I may not fully understand the difference between high (wired) and engaged, caffeine of wich I live on. I can drink it all day and still goto sleep and thank you for responding I think one of the most common side effects of being ADHD is you feal isolated or like nobody understands what you are going through. I sorry I can't be more help. I love trying though.
I don't feel more engaged, I just feel tired. It feels a bit like I've just come off a long plane flight! I do love coffee but I don't drink it after midday because my sleep is already bad enough, but I totally would otherwise.
I know quite a few people with ADHD but all of them bar 1 were diagnosed in childhood and most of them are not on medication so despite everything I'm still on my own with it really and I absolutely agree its very isolating. Also I only know 1 female ADHDer but again she is undiagnosed officially and therefore has't tried any meds. Also she is much more functional than me in general and has no other ailments so I don't think she could ever understand where I am coming from.
Thank you for trying to help and your experiences are still really useful for me, it seems incredibly variable ADHD meds so much more than the other meds I know!
I was diagnosed late in life and have been prescribed Methylphenidate (Concerta 36mg). Yes it did and sometimes still does affect my sleep, but I am learning to 'get around' that. As someone else said, dont do alcohol, its dangerous and has a significant impact on sleep. Caffeine- its probelmatic and I love my coffee, so, like you , learning not to drink the stuff after 3pm.
You have to keep hydrated. These meds really have an impact on hydration. Drink water morning and through the day - but not after 7pm. (that so you dont need to go to the loo at silly oclock). Also - drinking a sports isotonic drink really helps - SIS sugar free tabs with electrolytes.
In terms of feeling tired, it really helps me if I mix a (low sugar) protein smoothie and drink it as soon as Ive taken my meds in the morning - and I never take them after 09.30am -otherwise, Im wired at 3-4am.
Finally, Vitamin C - it helps dissipate the effect of amphetamines. Now, I cant say that thats made a huge difference to me- but Im carrying on taking Vitamin C.
I hope this helps - exersise is great too - except, for me as a runner with an old heart, these meds sent my heart rate through the roof -so, this is another aspect Im still learning to manage.
It’s also possible that this particular medication isn’t the right one for you. There are many other options to try, both in terms of dosage or the medication itself. Talk to your doctor - the more feedback you give to them the easier it is for them to figure out a drug and dosage that will work for you. Also - try to take it in the morning (if you’re not already) so it’s burned off well before bedtime.
Too many missing information to answer.... the only time Lisdex would cause sleep issues is if you take it too late in the day or your metabolism is extremely slow.
I take my 20mg 6-7am ish.... and then dose two at 11.30am. Thats it... you are not supposed to take it after 3-4 pm ish. That would definitely cause sleep issues for most.
But, medicin is not a fix all solution. It is half of the treatment. You are responsible for doing most yourself.
- exercise
- healthy eating. If you snack at night, you are causing the sleep issues yourself.
- enough fluid... 2 litres per day, spread out over the day, and no later than 1 hour before bed time.
- stop swiping at night... or atleast wear anti-blue glasses while doing so.
- do mindfulness or meditation targeting anti-stress or anti-anxiety
Once those things are in place or most of them then you can ask about the sideeffects of medicine.
I give this advice as an adhder myself and as working in healthcare.
I take it at 6.30 in the morning and I have immaculate sleep hygiene since being a neurotic insomniac all my life, I go to the gym everyday in the morning and do a mixture of cardio and weights and often swim after too so I don't think it is due to any of those things. I do have a slow metabolism however and I am becoming increasingly sensitive to medication as I get older. I'm on a cocktail of meds due to having many chronic pain related conditions which has been the case for the last 30 years. Although I have to say I'm the fittest I've ever been from a sport point of view, I can leg press over double my body weight.
All I seem to get are negative side effects, I don't seem to have any positive effects although its early days, but the impression I had was that the positives could be experiences very quickly? I don't know what to do, the stress is killing me.
My friend told me a to low dose can make you feel more unstable but because I reacted so badly to methylphenidate the nurse wants to go really slowly, I'm on 20mg for month. That's the plan anyway. Not sure I'll make it that far!
I was on methylphenidate for a months and it started to make me feel really unwell too. Exhaustion, profound fatigue in the afternoon when it wore off. I would feel really depressed and sometimes had to nap - and cry and couldn't get out of bed a few times (which really isn't me). So, I stopped and felt so amazingly better. It was a pity because it was such a big help in terms of concentration. It also affected my sleep. i couldn't sleep more than 5 of 6 hours.
Now, i've started with Vyvanse. I am happy so far. The crash is later and mild. I have had some insomnia. I hope it will get better. i have also been reading - and listening to podcasts - and I really believe medication will help. I take breaks of 3 or 4 days at a time from the Vyvanse, on days when I don't have to work as much. Usually, I sleep really well on the breaks. Sleep seems to be the trade off. I don't do caffeine at all anymore - a coffee yogurt in the morning I'm hoping things will get better in time. It has only been 2 weeks.
I was just diagnosed a year ago at age 59 and I have a lot of anxiety (a comorbidity? - or caused by the ADHD?) My ADHD symptoms became massively worse with menopause and peri-menopause. I have really struggled mentally and with insomnia for the last 10 years. I believe the lack of estrogen has a profound effect on the brain. I think people are beginning to understand this.
Don't feel alone. There are so many of us. I don't know women in my life who have diagnosed ADHD but I find so many women with ADHD and similar experiences online. In real life, I just have one friend who has ADHD, male. He is my age and has Autism and ADHD and suffers a lot - maybe more than me.
I follow lots of ADHD podcasts online and on instagram and I find it super helpful.
'ADHD Chatter' and 'The Hidden 20%' - have instagram accounts and podcasts. The interviewers are men but they always interview women. Also, 'TalkADHD' just had an episode on 'ADHD and Menopause' which was amazing!
I am interested to see how it goes with you on Elvanse. Good luck and take care.
Thank you for such a kind message. I don't seem to notice any more ability to focus or anything but I'm so tired from lack of sleep I'm more scatter brained usual 🙄.I have a long history of mental vulnerability almost always provoked by long periods without sleep. I have a lot of well established chronic pain diseases which obviously wear me out.
I'm living in a particularly stressful environment at the moment but that won't get better for a least 6 months. My daughter is trying meds for the first time too, she's 9, she just went up a dose and she's a bit all over the place. I'm wondering if I should stop my meds journey so that I'm better able to help her through hers. It seems to be making her OCD worse.
It's so hard to be patient with no sleep and no discernable benefit, but all the stuff I hear is that the meds can be life changing.
Drink some orange juice, the vitamin c flushes dextroamphetamine out of your system. Lisdexamphetamince changes to dextroamphetamine in your blood so it may not be as effective as straight dex but it’s worth a try. Stick with it and try to notice if you start doing tasks without thinking too much about them. That’s a sign it’s working and it can be mild. The side effects usually subside and if you feel jittery it’s your nervous system getting used to a stimulant.
My word that's wonderful advice!I remember people in my youth taking recreational drugs, freaking out and being given orange juice so that makes sense ( I went to art school people did more drugs than work).
I'll definitely look out for how I do tasks, thank you. It's good to have some idea of how I might feel, at the moment it feels like I'm flying blind.
That's great advice about the orange juice. I did not know either! I agree with Pineneedles. On the Vyvanse, I get more done without really noticing it .
I did start to feel the effects of the Vyvanse in a couple of days, but it was very mild. With the Methylphenidate, the ability to focus was very intense. With the Vyvanse, it is subtle. i did majorly tidy the house 2 days ago, And I managed to work all day yesterday. But I couldn't take the medication today as I barely slept last night.
As a side note, because of my high blood pressure and anxiety, I was put on guanfacine for about 9 months before I started trying stimulants. Guanfacine was amazing in terms of sleep and reducing anxiety. I eventually came off it because I was too laid back to get motivated to work. But it made me calm enough to start trying the stimulants. Maybe guanfacine might help with what you are going through. I would go back to it if I ever feel my anxiety is getting too out of control.
In the past, I was given Cymbalta for anxiety (GAD) 10 years before I was diagnosed. That helped big time as well and I was able to sleep. I don't think doctors like to prescribe it anymore, but perhaps there is something similar you could try.
I am so sorry about your chronic pain and the stress of your living situation. I hope you can apply for housing for you and your daughter so that you can get a place of your own. I use earplugs, black out curtains and a white noise machine to sleep. I don' know if they might help.
Yes my friends son is on Guanficine and methylphenidate bc he's on the highest dose of methylphenidate they can give him at his age.The nurse said if Lisdexamfetamine doesn't work she'll start with the non-stimulants next.
Do you know if the non-stimulants make you put on weight, because I couldn't cope with that? It would be lovely to be less anxious, I was put on various antidepressants years and years ago but they didn't do much.
I'm pretty good at working when necessary my big problem in that respect is my terrible memory. I have a terrible memory, I'm highly anxious, insomniac and RSD are my biggest issues ADHD wise. I suppose bc I was diagnosed so late I'd already imbedded many coping mechanisms, hence the huge amount of exercise I do, and the constant desire to be in nature etc.
Amazingly, I lost about 8 lbs on Guanfacine. Sadly, i have put the lbs back on since coming off the medication but I am hoping to lose it again on the Vyvanse. I do a lot of anxious eating.
I think from what I've read, antidepressants don't work for ADHD (and can make you feel worse), but anti-anxiety meds can help. But best to do some reading on that!!
I have a pretty bad memory but maybe not as bad as you. Lots of anxiety and RSD too (but I find since menopause, my RSD has improved a bit!! I don't care quite as much as before - I think!! or at least I've learned to try to live with it.) I have a lot of emotional disregulation (flying off the handle!!)
I was diagnosed so late too. I find peace in nature as well. And a therapist advised me to try to do things I really love when the anxiety is too out of control and that advice really helps. Taking time for myself, doing things for me - away from others. Taking time off from the people pleasing.
Sorry, long winded again!!
I hope to do more exercise soon. I think I will love it and it will really help
I've been really hungry since being on Lisdexamfetamine so who knows, is it usually associated with weight loss?To be honest my medical status is so complicated I probably don't react normally anyway...
'And a therapist advised me to try to do things I really love when the anxiety is too out of control ' - so good to hear this repeated. Same here: around performance anxiety and it makes such a difference.
The trouble I have with the "do something you love advice" when you're anxious is the logistics of that. There are obviously tonnes of things that make me anxious, most of the time I'm anxious it is because I'm having to go through something I can't avoid or escape from. If I was able to do something I love at that moment I wouldn't be anxious in the first place?I do obviously think that all people, especially people with vulnerable mental health, should be finding things they love and doing them, I just don't see how it helps in this context.
Sadly I have Bladder Pain Syndrome so I can't consume vitamin C or ascorbic acid as I wouldn't be able to sleep but I do find it reassuring that the option was there if I find myself freaking out about the side effects!
KK999 - Cool! That is interesting that it helps you with your performance anxiety. It makes sense to me.
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Cat00, I understand that in the moment, you cannot do something to make yourself happy. In moments of really intense anxiety, when I can't calm my fears and my blood pressure goes through the roof, then I have to resort to drugs (Lorazepam) or deep breathing in a dark room or the 54321 method. Or all three and more.
(The 54321 method is a grounding exercise designed to manage acute stress and reduce anxiety. Find 5 things you can see, 4 things you can touch, 3 things you can hear, 2 things you can smell, and 1 thing you can taste.)
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I think my therapist meant not having guilt about doing good things for yourself and finding ways to schedule them in.
For me, it really helped. I guess I have what they call Generalized Anxiety (GAD). Because I had a lot of guilt about my ADHD failures, I kept trying to make up for things I felt guilty about. I was so worried about my father's, my sister's, my boyfriend's anger - that I didn't allow myself to be happy.
Then, I found someone to take me sailing, I started playing squash again, I started drawing again, walking in nature. I try for something small for myself every day and something big every week.
It sounds very cliche - but my life became happier. I love doing those things and so I am happy in those moments. Then, I also met new people, made new friends. I am still anxious but I have happy times.
I think the idea is, that if I start doing things to make myself happy, life is more worth living. I am taking care of myself even if no one else is. So, I can cope better when things are out of control.
writing too much again! I guess I have things I want to talk about!!
I probably have GAD too, had major episodes of panic attacks/disorder for the last 15 years. Permanently terrified of returning to a state of day in day out panic that lasted over a year. Nothing scares me more than going back there. After that I finally stopped trying to be normal, have a job, career etc I got down to 35kg in weight took a long time to recover.
But you probably know how it goes as soon as you get a bit better you start taking a lot more on and by the time you know it you're getting stressed again. I've always loved kung fu so I went back to that but I get really really stressed about the gradings. There is this one grade that takes a year to pass, by the end of it I developed prediabetes from the stress, next year I have 12, it will take probably 2 years. I don't know what I'm going to do about that...and then there's the scuba diving, every time I get better I start diving again and then the panic attacks start and I have to leave it for a while.
Its hard when you love the things are also the things that also make you ill!!
I swapped from Xaggatin to Elvanse at the start of March. I had no real issue with sleep on Xaggatin but I definitely have had on Elvanse.
week 1 on 20mg my sleep was pretty poor and I had a lot of other side effects. But I did have some benefits at work and around food so with the agreement of my psychiatrist I upped the dose to 40g for a week to see if the benefits would outweigh the side effects.
I felt pretty good on the dose and the side effects improved. My psychiatrist agreed to try 60g as we felt there were still benefits I wasn’t getting.
My sleep is patchy - I struggle to get to sleep and am sleeping really lightly. Which means I get woken easily and struggle to get back off to sleep.
I had dreadful terrible tiredness too for 1 week. I was all set to stop meds entirely. I read that keeping up water intake can help so I gave it once last try. Drinking about 4l water over the day. It may have been a coincidence but I did feel a lot better. Sleep is a bit better but not brilliant.
I take mine at around 7:15 after breakfast. I also read it’s best to eaten a protein rich breakfast - no idea why or if there’s any evidence to substantiate that. But I eat high protein anyway as I lift weights. I exercise daily. And I use sound scapes of water/rain to help my brain feel occupied while falling asleep so it doesn’t keep bothering me with lyrics to obscure 1980s hits or reminding me of cringe moments from my past😆
So very long response to say it is a known side effect but does seem to improve. Like most of the side effects.
Ooh I was on Xaggitin before Lisdexamfetamine, that stuff made me so ill.....4 litres is a huge amount of liquid! I'll be off to the loo every 5 minutes, lots of people have commented on increasing your hydration, I wonder why it helps?
I'm also sort of keto I weight lift most days, swim, do cardio and kung fu in the evenings. I have a lot of chronic pain, exercise helps.
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I'm hoping things will get better in time. It has only been 2 weeks.
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