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Original poster

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

74 replies

Return2thebasic · 11/02/2023 17:17

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?

OP posts:
Original poster
Return2thebasic · 14/02/2023 22:19

@bobbytorq , sincerely appreciate your balanced comments. It's such an anxiety inducing business... (Particularly because I have ADHD too. My brain just went ahead too far...)

It's not possible to be placebo effect (even though, DH also strongly felt the change. He's usually the very cool headed.) DS was not well when he started and it dragged on a bit, plus the sleep issue due to coughing and maybe the med. Maybe that explained a bit of his calmness (just tired?). We will have to wait and see... As you pointed out, 5mg dosage is too insignificant to show much effectiveness. I'm a bit too keen.

It seems our intervals for titration is 2.5 weeks, at least so far for the lower side of dosage. Thankfully, he didn't complain about headache at all today or any side effect (been out all day though - good distraction). But had three episodes of meltdown/being tearful between 5-6pm. Just makes me looking forward to tomorrow 😶.

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Original poster
Return2thebasic · 14/02/2023 22:21

I meant"it's not impossible" to be placebo effect... 😳

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HairyKitty · 15/02/2023 19:19

If it helps with context my 40kg child is on 80mg. I’d be very surprised to see results at 5mg, though I guess it’s possible.

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General health
HairyKitty · 15/02/2023 19:22

You have to bear with the horrors of titration I’m afraid. Without trying for the suggested amount of time and continuing to increase at the suggested pace, you can’t know whether the side effects are real, due to too low dose, or due to it being an incompatible drug.
Titration can take a long time (over 6 months even), and can involve trying different doses of many different drugs (eg up to 6/7 of them).

Original poster
Return2thebasic · 15/02/2023 23:10

@HairyKitty , thank you so much for the sharing. My DS is about 35kg. If like you and others pointed out, he really should go up to at least 40-60mg to be right.

I do now agree it might be a placebo effect previously, particularly because he was unwell during those two weeks, which might have changed his way of responding to things and appeared"calm".

Just have to stay focused and wait now, as you all suggested.

It's hard. We'd like this to be sorted and find the optimal dosage quickly. But the 2.5 weeks gap of titration is like throwing him into misery within such a short span of time (the first two days were the most unbearable). I just fear it would really hammer his willingness to cooperate.

I can't imagine how we could make him try different types of med "just to explore". But it appears ought to be the wisest way...

He's been very very tearful again today. But it was truly because some activity which matters a lot to him went completely wrong in the afternoon. Still, it's hard to watch...

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Original poster
Return2thebasic · 15/02/2023 23:11

Started magnesium supplement. Fingers crossed.

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LoveMyADHD · 16/02/2023 20:03

@Return2thebasic How is it going? Which magnesium did you get?

i used to get Calm from Vitality but made a switch this week and didn’t work at all!! So going back to Vitality!

hope you’re doing ok!

Dodgeitornot · 16/02/2023 20:15

@HairyKitty Can I ask how old is your child? Our Dr said max dose for kids is 60mg.

bobbytorq · 16/02/2023 20:20

Dodgeitornot · 16/02/2023 20:15

@HairyKitty Can I ask how old is your child? Our Dr said max dose for kids is 60mg.

Max dose is 60mg when prescribed by GP/physician. It can be up to 100mg when prescribed by a specialist(child and adloescent psychiatrist)

Dodgeitornot · 16/02/2023 20:28

@bobbytorq really?? Our Dr is a consultant psychiatrist. DD has basically maxxed the dosage and it isn't working so we're changing to Elvanse.

LoveMyADHD · 16/02/2023 20:29

Dodgeitornot · 16/02/2023 20:28

@bobbytorq really?? Our Dr is a consultant psychiatrist. DD has basically maxxed the dosage and it isn't working so we're changing to Elvanse.

We had the same.. he was clear up to 60!

Dodgeitornot · 16/02/2023 20:35

@LoveMyADHD sorry do you mean your psychiatrist could only prescribe to 60mg?

LoveMyADHD · 16/02/2023 20:36

Dodgeitornot · 16/02/2023 20:35

@LoveMyADHD sorry do you mean your psychiatrist could only prescribe to 60mg?

Yes sorry. He said no way he’d prescribe more than that; if that didn’t work we’d need to move to a different drug

he’s psychiatrist too

bobbytorq · 16/02/2023 20:47

Dodgeitornot · 16/02/2023 20:28

@bobbytorq really?? Our Dr is a consultant psychiatrist. DD has basically maxxed the dosage and it isn't working so we're changing to Elvanse.

It's only licenced to 60mg but can be increased by a specialist. Some Drs won't increase beyond the licence or it may be that your Dr feels that the side effects will outweigh the therapeutic benefits at higher doses. There are other forms of methyphenidate but a switch to lisdexamphetamine is obviously the route that your Dr has chosen. Atomoxetine, which has a totally different mode of action to the stimulants, may also be worth a go if there is poor response to that too. It is a bit of trial and error to find the drug(s) and dose(s) that work best.

HairyKitty · 16/02/2023 21:38

Yes I have feeling over 60mg is at prescribers discretion, some will and some won’t, but it is “allowed”.

Original poster
Return2thebasic · 16/02/2023 22:35

@LoveMyADHD hi, I got magnesium tablets from Health 4 All Kids. Not sure about the suitability of non children products, and there aren't many for kids only. But I'm half hearted thinking if I shall let him have 3-4 per day instead of 2 as per instruction on box. Saw a research paper abstract, they used 200mg daily for kids with ADHD and saw very good results...

Can't tell any difference just one night (100mg). I think we are in for the long run... But he felt sleepy this morning after breakfast, and picked up the box asking me how long the pill stays in his body.😑

I'm yet to decide for vitamin B6. Barely any choices for kids.

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Original poster
Return2thebasic · 16/02/2023 22:36

bobbytorq · 16/02/2023 20:47

It's only licenced to 60mg but can be increased by a specialist. Some Drs won't increase beyond the licence or it may be that your Dr feels that the side effects will outweigh the therapeutic benefits at higher doses. There are other forms of methyphenidate but a switch to lisdexamphetamine is obviously the route that your Dr has chosen. Atomoxetine, which has a totally different mode of action to the stimulants, may also be worth a go if there is poor response to that too. It is a bit of trial and error to find the drug(s) and dose(s) that work best.

Show quote history

I'm very curious about lisdexamphetamine. Would be willing to try it if situation allows.

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Original poster
Return2thebasic · 16/02/2023 22:41

Tearful again today. Not quite a meltdown, but pretty miserably sobbing. A huge mess in two set of 10 questions maths test. Not only the results were awful, but the second round correction ended up with 3 out of 5 wrong again. I was literally speechless and just lost... And he said he really tried and felt desperate. Most just either careless mistakes again and again.

We revert back to the hopeless feeling before starting the med.

Still a long way to go, and I'm not even sure if this is the way out for us.

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Original poster
Return2thebasic · 16/02/2023 22:44

But his friend is over tonight for a sleepover and will be going out tomorrow morning. So hope for a better Friday to finish the week... A long week for him must be...

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LoveMyADHD · 16/02/2023 22:54

@Return2thebasic I give magnesium, Zinc, B6 , grape seed extract and vitamin d and he’s been ok actually (apart from my magnesium mistake this week which was noticeable)
best magnesium so far has been Vitality Calm nothing else has worked for us sadly

none of these are for kids they’re for adults but our psychiatrist was totally ok with this he didn’t mind at all!

i find his meds work really well when he’s in these supplements ….

did you discuss with your doctor about changing medication at all?

Original poster
Return2thebasic · 16/02/2023 23:04

@LoveMyADHD , thanks. I will have a look of Vitality Calm and other non kids versions.

About changing med, I'm afraid it's too early. 10mg IS quite low to hope it can work. We would have to walk further down the path to know for sure it's or it's not for him. Unfortunately, because the process has to be slow for various reasons, I guess we just have to manage somehow. I just don't know what made him so tearful and emotional everyday. Maybe it's because of coming off the med. But...we barely saw any positive effects, how could the negative be so pronounced...? Puzzling.

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Dodgeitornot · 16/02/2023 23:07

@Return2thebasic I would definitely bring up Lisdexamphetamine up in your next appointment. I take Elvanse as Methylphenidate didn't work for me. I nearly went crazy it made me an insomniac even on the lowest dose. I'm 5'3 and weigh 79kg so no spring chicken and I was staying up till 4am on 20mg. We tried methylphenidate with DD as it's the first thing they offer but alas 60mg in and it's made not a jot of difference and we've been battling for 3 months. She's starting Elvanse next week and I can't wait. In my experience if it's not working past the 2/3 week mark, it won't work.

JustTurned90 · 16/02/2023 23:21

I’m sorry that I don’t remember the dose but I remember my DS trying this med and it didn’t suit him at all.

He has been fine on equasym XL and now Elvase but they have both caused suppressed appetite. No other ticks were observed.

With these meds, unfortunately, it can take a bit of trial and error to find a good fit.

LoveMyADHD · 16/02/2023 23:25

@Return2thebasic have you gone private? If so they should be moving faster than that

Original poster
Return2thebasic · 16/02/2023 23:36

@LoveMyADHD yes, on private route - GP wanted school support for referral, but school wasn't keen as he's not destructive type, just a daydreamer and a relatively immature child. But we went with one of the top psychiatrist in the country, just to be sure it's a proper diagnosis.

It's been 2-2.5 week interval between titration. He meant to see us just 2 weeks in this dosage, but had to postpone a bit as we have to switch med brand in the middle due to the shortage of Medkinet XL!

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