ADHD med side effects - can someone explain?

[adhdforme]

I'm awaiting a formal diagnosis in a few months, but 99% certain I have ADHD as does at least 1 of my children. I would like to go on medication to help treat my symptoms and hopefully start being able to complete tasks / projects and get on with my life and goals. My husband is skeptical of the whole adhd thing and also any medication he labels a "brain altering drug" and says there are a load of worrying side effects with the meds. I read on another ADHD post in the chat forum that someone had decided not to go down the medication route because of the potential side effects - especially on the heart.

Can anyone tell me what the side effects are please and if you've experienced any negative side effects or wished you'd not started taking them? I know obviously each person is different, but I could really lose myself down a rabbit hole looking into all this so thought I'd ask here first to see if anyone already has knowledge about this.

No advice I'm afraid but in a similar position and watching with interest!

My son takes medication for ADHD. It suppresses his appetite and can make it hard for him to fall asleep at night (we counteract this with melatonin) When his dosage is a little high, he can be quite lethargic and sometimes as the medication wears off, he gets a ‘bounce back’ where he can be quite emotional and hyper. The doctor also told us to watch out for tics but we haven’t observed this in him.

Appreciate this sounds like a lot of negatives but overall, medication has made a big positive impact on his life and I’m confident it was the right decision for hun.

Thanks very much for your reply. In the grand sh me of things those don't sound too bad at all. I can always do with decreased appetite to stop the mindless snacking out of boredom. I usually stay up so late that I'm shattered by the time I get into bed and fall asleep immediately. If I find a I have a problem melatonin is a good tip!

Other than the above does anyone know of any long term health implications?

I'm on ritalin and it's a bit like speed.

Get a buzz for a couple of hours then a crash.

I wish I didn't have to take it as j basically have an NHS approved drug habit now.

It's a stimulant that raises the heart rate. This can cause issues, this is why you need a ecg before starting meds and your heart monitoring afterwards.

Myself and my son have adhd , I don't take meds due to the risks associated with hearts

I don't medicate my son due to the risks around the development of white brain matter in children.

They are a controlled drug for a reason and you have to determine if the risks outweigh the benefits.

In some people their struggles in life caused by adhd will be worth the risks. Others like me it isn't.

There is lots of research out there if you look, also I'm sure I found a article about only being safe for 3 years . That might also be worth investigating. As if there is truth in it, what will you do in 3 years.?

I have 3 kids with ADHD.
For us it's been largely positive.
My dd/DS's have been able to concentrate & do much better at school on Elvanse - a slow release stimulant.
My teenagers were picked up after one suffered severe depression & anxiety due to ADHD.
ADHD can cause Individuals to hit an utter wall in life. Unmedicated kids have a much higher likelihood of suffering depression & anxiety in later life.

I think some of these posts are bizarre & just inaccurate.
Never heard about an effect on white matter or a 3 year rule. Read attitude - an online magazine with the latest research articles. ADHD can be considered a Superpower & the microfocus that comes with ADHD can be a major advantage in creative professions.

Meds take a while to work & to get to the right dose. The right dose is different for everyone. Stimulants are not the only meds available. Most doctors prescribe the long acting/ slow release forms now. Blood pressure & pulse are always checked at each doctor's appointment. Your heart is not checked in children otherwise. Of course adults may be different.

Just because you haven't heard about it doesn't mean it's not true.

There is loads of studies been done on effects on the developing brain, I would hope that you would of heavily researched these meds before allowing a child to take them.

I think you need to spend some time reading the studies done on these meds. They carry quite a lot of risks. Just like many drugs.

@Cantonet

This would be a good start

Bouziane, C., et al. (2019). White Matter by Diffusion MRI Following Methylphenidate Treatment: A Randomized Control Trial in Males with Attention-Deficit/Hyperactivity Disorder. RSNA Radiology.

Also a very new study to support behavioural therapy over medication.

scitechdaily.com/new-research-shows-adhd-medication-doesnt-help-kids-learn/amp/

I was prescribed methylphenidate, but felt as though I was going to have a heart attack on them. I'm very sensitive to stimulants and can't even tolerate filter strength coffee, so it was never going to be okay for me to be on them.

Effects included:

Tight chest
Palpitations
Increased heart rate even on beta blockers
Heavy feeling in chest
Anxiety
Fear of heart attack

@indoctro I've had a quick look.
I'm aware that the brains of ADHD patients are different & take longer to mature & are smaller. I would be very wary of giving stimulants to young children. But in my case my kids are late teens. One was very depressed & another wasn't functioning well at all after lockdown & online learning. I didn't know what was wrong.They went from gaining scholarships to the bottom of the class. Elvanse literally gave them their lives back. My third one has aced his exams & is doing his A levels now.

I do think many older students move onto non-stimulant drugs & develop better coping strategies through maturity.

ADHD individuals have very high rates of depression & anxiety & other neurodiverse issues. Many have been medicated inappropriately with antidepressants. Stimulants are not shown to have any effect on the brain of adults

@Cantonet my son is only 7 so you can understand why I wouldn't consider medication for him

I won't take it either, but I do understand it has a place for some people when other methods don't work and it's impacting their lives too greatly

I'm glad your kids are doing well , I struggled through school and my 20's.

You can buy melatonin online to help you sleep & this may help you focus a bit more until you get a diagnosis, I am autistic & take 12mg every night. I buy mine from Rolling Rocks.

I'm no expert and can only tell you about my boyfriend. He's on Xaggitin 54mg with an 18mg top up. His only side effects are excess sweating and trouble sleeping. He doesn't take the top up unless he really needs to be on his game, so for big meetings (and his first date with me!). When he's off his meds (which happens occasionally as he has run out, his pharmacy can't always get them in time) he's tired and spaced out.

Side effects for adults or kids?

For adults, minimal.

For kids, it can affect their appetite and heart rate.

Support measures never worked for me or my son. Meds work for us.

Someone up thread mentioned a great website but accidentally called it attitude (probs autocorrected) It’s ADDitude. And they’re right, it’s incredibly informative and a fab recommendation.
This gives a good synopsis of the meds available. These are their generic names. If you are diagnosed it’s likely you’ll start on methylphenidate - they’ll titrate the dosage. It really is trial and error as everyone is so different.

I take a low dose of dexamfetamine for ADHD.
Im quite sensitive to side effects so have been through a few different ones before finding one that i could tolerate.

I dont think it is up to your husband whether you want to trial medication. Its your body, not his.
Of course there are side effects to everything.
I hated methylphenidate. Gave me tension headaches. First i was on short acting dose, then the longer acting sustained release one.
Then i tried Elvanse, which was ok. Definitely helped me function better but I decided that i get on much better with the shorter acting ones so am on amfexa now. It really helps me.

My eldest son takes methylphenidate. He only takes it on the days he goes to work usually.
My other son was prescribed it but he didnt like the way he felt on it, so stopped taking it.

I take Elvanse and it has made a massive improvement on my life, however I have lost a lot of weight and I hate to admit, it was really addictive seeing it fall off and I knew I was going into possible ED territory as when I would take breaks on the weekend, I would still not eat and be completely obsessed with weight, so now I make sure I eat before and have easy accessible food to eat, so I actually do it. Also it makes me smoke so much, I think its best that you only take the lowest dose you feel to be effective. I also feel when I take it I completely loose my personality but the things I have achieved including being in my second year of university, I am less sensitive to criticism, and all the constant thoughts that would go round in my head are not their. All the good things out way the bad things, but you have to be careful, as much as I love my off days when I feel like my 'fun' personality is back, I also am looking forward to taking it again, but I would definitely give it a try, it could make some really positive changes.

If you are considering an NHS assessment get on the waiting list now because nationally ADHD services are woefully underfunded. Current waiting lists for services in the CCG my son is under is 2 years for an assessment. You could look into Right to Choose via the GP to get seen sooner by a private provider.

adhduk.co.uk/right-to-choose/

The first line treatment for ADHD in the NHS is a methylphenidate based medication. Not every person needs an ECG before starting meds.
You may want to read this
www.nice.org.uk/guidance/ng87/chapter/Recommendations#medication

My adult son takes a long acting stimulant Concerta XL 54mg for combined type ADHD.
He takes it at 7am so that it does not affect his sleep pattern.

He eats a very good breakfast with his meds because he finds his appetite wane by mid morning. This picks up mid afternoon and he eats a late lunch and then his dinner about 7pm. He always drinks plenty of water or he gets a headache.

The medication was a revelation, my son can stop, think and consider his actions before acting and think of responses before immediately verbalising. He is able to sit and read, complete music practice, to revise to study and to organise himself. He stopped leaving things to the last minute, gets up on time, stopped forgetting everything and misplacing things. Is not constantly fatigued with having to concentrate so hard on just managing simple everyday activities. He now has every hope that he will be able to live independently and go off to university. Before medication that was never an option.

I was prescribed methylphenidate long release and had very little side effects probably worst was mild IBS symptoms, on starting low dose it initially felt similar to when I've not slept, sort of tired/wired and extra chatty. This eased off and then just was more awake which was great as I can barely stay awake most days, I fell asleep more easily when I went to bed as mind wasn't busy although I'd feel ready for a nap when meds wore off. I had loss of appetite although I didn't feel nauseous so could eat, reduced binge eating too which I hadn't even realised was ADHD symptom till diagnosed. I felt calmer and improved focus but have to be bit more careful to aim it in the right direction. I didn't get on with one of the other generic brands as gave me more side effects even though technically same drug, I hear it's not an uncommon experience.

With the ADHD meds you go through a titration process supervised by psychiatrist or ADHD specialist nurse. They will ask about family history heart health along with your own. I had ECG prior to starting and you have to provide regular height/weight and blood pressure results and complete assessment forms on side effects and ADHD type issues changing. For example I started on low dose of 18mg which doubled on week 2 and tripled week 3 to 54mg dose although adults can have up to 108mg maximum so it maybe trialed higher if don't see benefit as it's very individual.

Of the ADHD stimulant drugs there's 2 types methylphenidate based (reduces dopermine reuptake) or amphetamine based (increases the dopamine released) i.e Elvanse lisdexamfetamine. These can both be short acting dose or long release to cover a few doses. So can find one stimulant type will suit an individual better than the other or even have no effect on them at all but they don't know until trial it.
There are also non-stimulants Guanfacine & Atomoxetine

www.additudemag.com/download/ultimate-guide-adhd-medications/

Side effects are pretty minimal for me on 30mg of Elvanse. Bit of dry mouth and sore jaw from clenching at times.

I need to be conscious of not taking them too late in the day or on days when I’m not doing much otherwise I don’t sleep at night.

Also had a bit of an issue with high heart rate when taking the meds and drinking alcohol on the same day so if I know I’m going out I don’t medicate that morning

Oh just went back and read the thread and forgot about the appetite thing! Elvanse is also used for people with binge eating disorders and I often don’t feel hungry but then tend to binge in the evenings. I am overweight though so my doctor isn’t worried right now

Adult ds was briefly on it as he was struggling at uni with a very challenging course (he does have an adhd diagnosis).
although the meds helped him focus, the focus was exactly 8hrs long at which point the “crash” was difficult to tolerate. Caffeine was suggested but decided to end meds instead.

For me I take 70mg Elvanse and top up on dexamphetamine

My brain still races at 1000 mph and it is rarely quiet.
The side effects re my heart are that it is can speed up your heart rate ( although I have never noticed it. I wear a fit bit) The other side effect has been me losing 3 stone in weight which has reduced my heart rate and I am no longer in the obese category

For me I now have the energy to do stuff where as before I really struggled with doing simple tasks.
It isn’t perfect for me. I have a few hours every 6-8 weeks when the pills kick in properly and my brain quietens and I am able to concentrate on one task at a time and complete each task without my brain screaming at me to do 101 other things that need my attention at the same time

i know others have a much better response and I know Dd said after her first pill that the strangest thing was suddenly having a clear silent mind

We need “brain altering drugs” because a
our brains are physically altered
Does your Dh not take an aspirin for a headache or cough medicine for a cough
If you have something wrong and there are drugs you can take to help. Would he not take them.

My gp surgery has been astonishingly poor and it's an ongoing struggle to get meds. In the meantime I'm going to be taking Modafanil which is a non stimulant which can help some people with ADHD.