Medikinet XL increase of dose - headache, tummy ache and nausea - miserable all day

[Return2thebasic]

DS started Medikinet XL from 5mg exactly 2 weeks ago. He had a bit headache and a diarrhea the first day, but Calpol seemed to have helped to ease away the headache from afternoon onwards. He was mostly fine for the rest of the day and barely any headache the second day. Since then, it seemed to have show some positive sign.

So we had a follow-up meeting with the doctor on Wednesday and agreed to try 10mg this weekend.

So today, he had 2x5mg Medikinet XL this morning. Very soon, headache again and seemed much worse than last time. And it took about 2 hours for Calpol (or naturally) to ease off the headache. But started from around 3:30pm, he started having tummy ache and feeling sick. He has been having a bucket next to his bed in the past 2 hours and just looks really miserable.

I feel awful, obviously for having to put him through this. He himself is also quite discouraged by the experience and said twice he doesn't want to have the double dose anymore.

I know it's the first day, and the side effects are probably at their highest. But he was so miserable the most part of the day. I feel almost mean if I put him through again tomorrow and the day after?...

His blood pressure seemed t have risen up quite high this morning to 130 and just came down to a normal level ish after 3pm.

Do anyone's DC have similar experience?

@Dodgeitornot , I wouldn't dare to bring it up unless the psychiatrist imply a choice. He's one of the top psychiatrist in the field. DH would also want to see through this one med till proven not working, I'd imagine. He has an engineer mindset, I'm afraid.

I just hope he's not going to be so tearful everyday until the next Zoom (the end of the month)!

@JustTurned90 , it appears the suppressed appetite is unavoidable. So many kids have the same issue. Mine is only on 10mg, but his appetite this week has noticeably deceased this week.

How long did your DC take to be switched to Equasym and Elvanse? What's the dosage currently when it's working, if you don't mind to share?

Ok hope you see him soon!

we were lucky as our psychiatrist was changing dose every week (even via email, he was super flexible) so we found the optimum in just few weeks

im sure you ll get sorted soon! Hang in there xxx

Give him 2 dinners. One at 5pm the next at 7.30ish

I don't know how old your dc is for bedtimes but ds gets 2 dinners.

Ds takes takes mediknet as his booster tablet but I've stopped giving him it due to side effects like your ds gets. Ds takes a different xl med in the morning.

I take Xaggitin xl and find that ok but I'm rattling when it's wearing off and I've been on it for years.

Thanks! He's not hungry by 5. Even at 7, it has to be a bit of push. But since he sleep after 9, I'm thinking to give him some more just before bed if it really comes down to that. Thanks for the reminder of a top-up meal.

I'm yet to try any myself, but hopefully in the next month or so. Really nervous! I'm already a frustration low tolerance person, not sure if the wearing off effect in the late afternoon would throw me to a meltdown too 😂 Two DCs have already seen me too many times bad tempered and crying eyes out in different occasions... Hope it wouldn't be worse!

@LoveMyADHD Thank you! Really need luck here! The downside of finding someone of the top rank is that each Zoom call costs over £200! I'd rather having emails honestly 😹 as the bank account really hurts!!!

@Return2thebasic Gosh it sounds like you've been roped in by one of these professor type super shot psychiatrists. We've unfortunately been through many a psychiatrist in my family and see through a lot of it. ADHD isn't a difficult or complicated thing to treat with meds. You should feel comfortable bringing up another option to your Dr, especially if you're paying £200 for the privilege of a zoom call. You know your child better. I know they love to do the whole 'we feel Zoom works best for this'. It's BS.
DD sees a consultant psychiatrist in London who's also worked in NHS ADHD clinics and we pay £125 for a zoom review but she's given us updated prescriptions, a 30 min phone call and emails completely free of charge as we've been having a hard time with titration. I feel you're being ripped off. What's does being the best in the field even entail?

@Dodgeitornot We know it's probably over the top charge. But we didn't know any other way to find a reliable psychiatrist who's not motivated by labeling DS just because we're desperate (DS is on the mild/modest side. But I was really suffering with frustration, whilst DH even doubted if he really has ADHD until the diagnosis).

The ones I found online are all really expensive. It is a rip-off and but we are roped in as you say...😓

@Return2thebasic I understand. However, please do not be scared to voice your concerns and ask for opinions on alternatives. You will have to word it carefully as a lot of these psychiatrists are ego tripping assholes but don't feel you can't advocate for your child. If he's still really suffering on these meds by your next appointment I wouldn't even ask for a dose increase but for a change of meds. If he's like this on a tiny dose, it won't necessarily help upping them.

@Dodgeitornot , thank you for being understanding! It was a very wobbly decision to begin with, as DH wasn't keen and school didn't care, just me alone believed something needs to be done. Found someone who has the top qualification comes the cost.

You did make a good point. I just fear he'd given a top-up dose like some other kids who suffered med wearoff so that to get through the full day. But his sleep and appetite have already been affected. Not the best type to try top up. I will bear that in mind for the next Zoom. Really appreciate it!

@Return2thebasic They all have the same qualifications in order to practise pediatric psychiatry. Just different experience and marketing. Mostly marketing tbh as most of the private psychiatrists are consultant level.
Not saying you should change Drs but don't let that cloud your judgement. The most expensive doesn't equal the best.
If his reaction was worse when you upped the dosage from 5 to 10, than I think you need to look at a different med. It sounds like he's tried Medikinet for a while.
My DD had to switch to Equasym during this shortage and we were hoping it would change things but nope.

OP Im afraid you are really going to need to be able to exercise a lot more patience with the titration process.
My sons took 8 months (of torture). You can’t afford to be analysing every tiny change or incident or you will go crazy!!
Breakfast = very calorie dense utter junk until can’t eat more
Lunch = work out what they can tolerate as 200cals for lunch is better than none.

After a little time the appetite may improve just a little.
2 x teas yes absolutely. Whatever you can persuade him to have after school plus a large serving later.

OP, what does your DS want to do?

@HairyKitty may I ask how frequent was the titration to get to his right dosage? 8 months sounds really long...

@PearlsOnBoys , he'd either completely follow what we tell him to do OR he'd be too discouraged by the side effects and just prefers to stop altogether.

At age 10, he's far away from being an independent thinker. Probably too many noises in his head making it hard to think. So he tends to rely on me to organise his life and lots of reminders for basic things. But he's also easily scared in spite of the wild outgoing facade. So I don't think it's a decision for him to make under current circumstances.

He's really started struggling on a few things. I do believe he would love some extra help to make him feel normal.

I can’t remember but I think on average a couple of weeks before each change. He was originally titrated up to 60mg, but this increased to 80mg over past 2 years.
He was tried on 5 or 6 things before this one. Some side effects were horrible.

@HairyKitty , that sounds awful and soul draining to watch if the side effects were horrible.

We are on Day 8 of 10mg. He's really low energy this morning. We had guests coming over for lunch at 1pm. By that time, he was withdrawn. I initially thought it's to do with he's upset with something DH said to him. But he looked just really depressed for no obvious reasons. I asked him several times, if he's feeling ill or he's upset. He insisted no.

He was really quiet at the table and didn't finish his lunch. I told him to go upstairs to play his Lego. But finally by 3pm, he was sobbing and told me he felt "lonely" because his brother was playing with marble track and we two had guests to chat to. THAT'S JUST NOT NORMAL! He was really tearful and nothing seemed to be able to cheer him up.

In the end, I just turned on that Grizzy and Lemmings show (which he loves to watch) once the guests were gone and grabbed him downstairs to watch together. His mood finally improved a bit after 1hour. (Still watching now. So I'm not even sure if he's completely okay.)

Then I looked online, in numerous research articles, methylphenidate is mentioned to be associated with depression.

So the entire week, there's only yesterday he didn't have any meltdown - just because he had a 24 long playdate including a sleepover, plenty of Minecraft with his friend next to him and an activity together outside. Basically, everyday something had triggered one to several very tearful and sobbing moments. I was thinking to wait until next week back to routine to see if this is a real pattern because maybe calling an earlier Zoom meeting with the psychiatrist. But today, the way he has been just started really making me worry.

I feel since we started the med, it's like a big rock was just clutched onto my heart, it weighs down so heavily paralysing me to think of anything else.

It's much harder than I thought, honestly...

It is hard OP, you will need to be observant but open minded, and tread a line between caretaking and being overly fearful.

Be reassured that feeling miserable isn’t the same as depression, and really be aware that there may be a couple of hours in the afternoon where he’s a bit off, miserable, or over emotional compared to normal.
What might help keep you going (providing you clinician believes it to be safe) is that you won’t know if the medication would have improved his life if you don’t stick it out.

Can you email dr instead of having to pay for zoom apt?

I sent questionnaires in to psychiatrist every week as I titrated up, and that was as an adult. I had a doctor who wasn’t a fan of increasing doses for any meds for the sake of it though, he was very much a “stop when you feel the dose is helpful” type.

@HairyKitty , thank you for the reassurance.

Logically, I shall know I'm probably over-reacting. But it's really hard to see him being so helpless and tearful (he's never been like this before. It's a different kind of tearfulness than the usual. He used to be more angry and frustrated, but not like this being so miserable.)

I honestly didn't expect he had much reaction until maybe over 20mg. I was absolutely relaxed when he was on 5mg, more focused on his headache and blood pressure. But his behaviour change back then (placebo or not) was not to be unnoticed. So this round titration effect really took me by surprise. And it's Day 8! I thought it should have been a bit more settled.

Monday is inset day, so he's not going back to the daily routine until next Tuesday. Until then, I guess I can't be sure. Just really hard to see him like this every day.

What might help keep you going (providing you clinician believes it to be safe) is that you won’t know if the medication would have improved his life if you don’t stick it out.

Thank you for reminding me of this though. I did ask myself today, and I know it is in his own interest to at least give this a try. If after all, he's one of those nothing can work, at least we tried and no regret...

Thanks for the suggestion. I guess they each operate in different ways. We are roped in (by choice) for now.

I did start considering if we shall find another psychiatrist just to do the titration at a more reasonable rate. But I'm not sure if any would accept patient purely for titration without going through their diagnosis.

And, we still haven't received the report from our psychiatrist - lagged paperwork, as we were told. I'm not happy with that at all. It's been three months since the diagnosis. I just hope he will give us one in the end!

@Return2thebasic catching up on this thread ..my DS has just started 5mg Medikinet. He's 10..your thread has been so informative & has really resonated & I'm wondering how things ended up & how they are now?

@noideaoffuturenow Hi, glad that you found any information useful. It's a bit surreal for me to revisit the old post - not that old, as just been over a year!

We accidentally discovered that Medikinet doesn't go with him for some strange reason. When we got to 10mg long release where the above post ended, his psychiatrist had to switch to a different brand (Metyrol) due to Medikinet shortage. He initially warned us to keep close eyes as some children had undesirable reaction (didn't specify). But it turned out this brand suits him and apart from low appetite for 8 hours, barely much side effects. e stabilised at 30mg with Metyrol for over a year now.

At weekends and holidays, we ended up giving him short release (Ritalin) still - no medi break, as we found it took him over a week to settle back down if there's a lengthy break, not mentioning the unmanageable wildness during medi break. Very disruptive. Plus, he is still growing, even though much slower than before medication. I just try to give him very big breakfasts (which he hates...) and big dinners as late as possible. He's not losing weight...

It's really hard to speculate what suits whom until they try it. I always wondered why the brands matter and what the difference is in there. But biologically, we all have different chemical balance. I guess that's where the trial and error have to come in the process. If we were not accidentally stumbling in that brand shift, I'd probably have given up, as he was absolutely not himself and very scary...

5mg is still quite low though. Our DC didn't have much reaction to that dosage. But it can settle if you persist or may not... It's true the body probably always adapts, but nobody knows how long it might take and how well it might improve for each individual...

When did your DS start his titration?

Also want to add, he's been having magnesium supplements alongside. He started with 4x50mg/day and has reduced to 3x50mg instead. I'm not sure if it helps or not, but theoretically magnesium is delepleted by stimulants. However, I haven't dared to give him anything other than magnesium for fear of unwanted accumulation in body.