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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:
HairyKitty · 11/02/2023 17:28

You will need to try for a few more days as there’s no way to be sure the headaches/stomach problems aren’t coincidence?
Yes rise in bp and hr are normal, your clinician will monitor this.

Original poster
Return2thebasic · 11/02/2023 20:56

@HairyKitty , we will try another or two. But it's hard to see him being so miserable if the med is the cause and not sure how long it would persist. Bigger problem is that he himself has grown wary of the effect of the med. 🙁

OP posts:
HairyKitty · 12/02/2023 08:12

I’m short term I would be giving cal pop and a good glass of water before the meds. Plus I expect you know food is needed before.

Also, if he’s taking it in the morning and the stomach symptoms are at 3pm then this isn’t the meds but rather the coming off the meds (or something else completely).
This can be an unpleasant time of day but usually passes in an hour or so.

Interested in this thread?

Then you might like threads about this subject:

General health
Original poster
Return2thebasic · 12/02/2023 10:16

@HairyKitty thanks. He does usually have the med after his breakfast with a glass of water.

Thanks for pointing out the possible source of tummy ache. I didn't think of the come off med effect.

We will keep monitoring today... Thank you 🙏!

OP posts:
HairyKitty · 12/02/2023 11:19

Come off meds effect can vary but can definitely include tired miserable hyper nauseous so most likely can include your symptoms too.
If it’s not too late in the day and if it’s still especially horrible after a month or so, they may consider adding a small dose of immediate release methylphenidate to smooth the bump.

Original poster
Return2thebasic · 12/02/2023 14:53

@HairyKitty , thank you. It could help make sense. His headache reoccurred today but a lot milder. We are yet hearing anything about a repeat of tummy ache and nausea. Will keep an eye. But the readings of BP and HR are pretty much normal today. A positive sign...

Even though, it's ironic to sense the doubled dosage seems to work less well than 5mg. It's early to say for sure, but he's not as calm and composed as when he had 5mg last two weeks.

A bit too jolly and less concentrated, as if he didn't have any med. Weird...

OP posts:
OodieSmoodie · 12/02/2023 15:24

@Return2thebasic - Less is more sometimes. I take the 4 hr lasting tablets and have settled on 5mg most of the time (depending on what I am doing) as that is where I function best. Do you have to keep titrating up?

I tried a long release one (Elvanse I think) and vomited so much when it wore off that I never tried it again.

long release methylphenidate also doesn’t work for me as I couldn’t get past an afternoon headache on it, so stopped after a few days.

OodieSmoodie · 12/02/2023 15:27

If your DS doesn’t want to double the dose, that seems enough reason not to.

One of my DC’s starts soon and will have to take the lead, and if she wants to reduce or stop completely that is what we will be doing, I make my own decisions about when side effects are worth persisting with vs potential benefits, and I think children should have the same choices.

Original poster
Return2thebasic · 12/02/2023 16:04

@OodieSmoodie , thanks for the sharing. Yes, there should be a balance as to not let side effects outweigh the benefits.

But it's unclear to me that how much a person's body can "normalise" the effects of the med, both positive ones and negative ones. I suspect each person is different.

DS is also on the mild side of ADHD, but he's really tall for his age 10yo at 12yo height, but slim. So I don't quite know the scale of dosage should be based on what, if there's one...🙄

He's much better today. BP and HR didn't move up much in contrast to yesterday. Same as he first tried 5mg, was miserable for the first day.

But what puzzles me is the effect. He's just too happy and jolly (like how he usually is) instead of being calmer like when he had 5mg.

We will see how it unfolds in the next week or so. Unfortunately, the shortage of Medkinet led to us have to switch to a different brand after 6 days. Not ideal...

As to if we have to titrating up or not, we will see what our doctor suggests. But if we stop at 5mg as an optimal dosage for Medkinet, I would want to explore the other different route. Is that dexamfetamine? If it's offered.

But overall, I agree with you, if the vomiting was so violent for you, probably it's unwise to carry on. But the side effects are said to subside usually after a few days. Depends how poor it makes you. It's extra hard with kids, as the feeling of guilt if you push them to persist.

Better to start at a weekend day or holiday time. So that you can keep a close eye on her. Good luck!

OP posts:
LoveMyADHD · 12/02/2023 16:09

Does he have a high protein breakfast? DS has eggs sausages and still protein powder on top

sadly Medikinet doesn’t create dopamine for you, it will just keep the dopamine in the brain for longer

it could be that his head hurts because of lack of dopamine so there is nothing for the drug to work with

just a thought x

Original poster
Return2thebasic · 12/02/2023 16:29

@LoveMyADHD , thanks. I remember you recommend that book I yet need to get.

He didn't have any egg yesterday at breakfast (daddy didn't think it's a big deal). But I made sure he had scrambled eggs. If that made any difference?

I'm still not sure about Medkinet. I do like it calmed him down A LOT: we barely had any melt down in the past two weeks (unusual) and a couple of times when he was upset or distressed, he was actually able to recognise the cause and verbalise it before let it go. And he also got through difficult stuff like homework, writings with very little complaints and whining (categorically unlike him ). Instead, he just got on with each in a military operation way, iyswim.

But he's still way too fast and didn't seem to reduce the level of carelessness much.

So maybe you are spot-on. We will see...

OP posts:
Original poster
Return2thebasic · 12/02/2023 17:44

High bP returned with headache reappeared at 4:30pm. 136mmhg, this is after a dose of calpol given after 1pm which did reduce the headache for a couple of hours.

Poor kid...

OP posts:
OodieSmoodie · 12/02/2023 20:18

@LoveMyADHD - what’s going on with the protein breakfast? Interested in this (don’t eat breakfast much!)

@Return2thebasic - Aw, that sounds tough, I hope he gets better soon. It must be really hard for you as you are doing something to help him and make his life easier but then having to witness him struggling with side effects.

LoveMyADHD · 12/02/2023 20:36

@OodieSmoodie generally dopamine is created by protein not carbs …you might notice more focus days when you have high protein low carbs diet

so for drugs to work on dopamine (to prevent reuptake) body must produce dopamine first .
Its likely you get all sorts of side effects otherwise

just a thought when things don’t work ; rather than giving up on a drug or increase dosage, it’s worth looking at diet

Original poster
Return2thebasic · 12/02/2023 21:02

@LoveMyADHD just got the book you mentioned (Kindle version). Going to read tonight to find if anything could help. Thank you.

OP posts:
Original poster
Return2thebasic · 12/02/2023 21:03

@OodieSmoodie , yes, it's harder than if I myself have the side effects. It's much easier to make decision for yourself than for someone you are responsible for. Never know what's "the right thing"!

OP posts:
LoveMyADHD · 12/02/2023 21:04

@Return2thebasic Well done!!!!!

happy reading xxxx

Original poster
Return2thebasic · 14/02/2023 17:21

Ha! Day 4, headache seems to have gone and so did the tummy ache. But huge uncharacteristical meltdown at 5pm today, plus yesterday he had a burst of anger towards DS2 because of something completely disproportional. I'm wondering if it's because of coming off from the med.

It's a bit ironic, as I haven't seen any positive effects this round after increased the dose to 10mg, but with all these negative effects tagged along. Just really bewildered, not sure what's going on.

@LoveMyADHD I'm going to try the magnesium tomorrow to see if it can make any difference.

OP posts:
LoveMyADHD · 14/02/2023 17:49

Hey @Return2thebasic for brain it’s the Threonate magnesium you need and sadly because it’s not medication it might take 2-4 weeks to bring levels up

well done for trying (you read the book then 😉)

Original poster
Return2thebasic · 14/02/2023 18:03

@LoveMyADHD , slowly, but yes, still reading. It did mention it's going to take a while to see the effect...

He just had another meltdown 😑for something completely unnecessary. Sigh... Not sure if I want to face a crying 10yo everyday for another two weeks...

OP posts:
Original poster
Return2thebasic · 14/02/2023 18:22

Lack of social skills (e.g. back and forth conversation) is one of the hallmarks of ADHD.

Took DS out with his friend for a playdate today. It's embarrassing (on his behalf) to witness him not able to engage with his friend in a meaningful conversation back and forth to the maturity that his age should demonstrate. Most of the time, he's talking just about what's occupying his mind. This same friend used to comment about DS to me saying "he's always like this..." (i.e. not able to listen and not able to engage.

Feeling really sad for him and know it's nearly impossible to keep friends like the way he is...

OP posts:
Original poster
Return2thebasic · 14/02/2023 18:23

And we thought we saw some positive signs last week when he was taking 5mg Medkinet XL. But it's all gone this week when he's taking 1mg. Just not making sense...

OP posts:
bobbytorq · 14/02/2023 20:52

Return2thebasic · 12/02/2023 16:04

@OodieSmoodie , thanks for the sharing. Yes, there should be a balance as to not let side effects outweigh the benefits.

But it's unclear to me that how much a person's body can "normalise" the effects of the med, both positive ones and negative ones. I suspect each person is different.

DS is also on the mild side of ADHD, but he's really tall for his age 10yo at 12yo height, but slim. So I don't quite know the scale of dosage should be based on what, if there's one...🙄

He's much better today. BP and HR didn't move up much in contrast to yesterday. Same as he first tried 5mg, was miserable for the first day.

But what puzzles me is the effect. He's just too happy and jolly (like how he usually is) instead of being calmer like when he had 5mg.

We will see how it unfolds in the next week or so. Unfortunately, the shortage of Medkinet led to us have to switch to a different brand after 6 days. Not ideal...

As to if we have to titrating up or not, we will see what our doctor suggests. But if we stop at 5mg as an optimal dosage for Medkinet, I would want to explore the other different route. Is that dexamfetamine? If it's offered.

But overall, I agree with you, if the vomiting was so violent for you, probably it's unwise to carry on. But the side effects are said to subside usually after a few days. Depends how poor it makes you. It's extra hard with kids, as the feeling of guilt if you push them to persist.

Better to start at a weekend day or holiday time. So that you can keep a close eye on her. Good luck!

Medikinet can be prescribed up to 2.1mg/kg to a max dose of 90mg/day in children. 10mg is quite a low dose and your clinician may wish to titrate up to a higher dose. The side effects do ease over time but the stomach ache and nausea may well persist and as @HairyKitty has already said, a dose of immediate release may ease that. There are other extended release preparations to explore too if the side effects of Medikinet prove problematic. Although they are all still methyphenidate, the proportions and speed of release vary.

Original poster
Return2thebasic · 14/02/2023 21:24

@bobbytorq , thanks for the comments. We are expecting the next appointment at the end of Feb will be increasing the dosage. But DH is wondering if staying on this current dosage for a little longer would help ease the side effects for next increase. Supposedly, the body might have more time to get used to this level before moving to the next higher level?

I suspect our psychiatrist would leave us to decide, as no two people are the same and no one can really predict...

May I ask, if you happen to know any plausible explanation, what makes a person react positively at a lower dosage than a higher dosage , in terms of medication effectiveness? We saw noticeable difference in his maturity and mood stability when he had 5mg, and NOTHING when it's increased to 10mg. It feels like all has gone back to square one...the forgetfulness, the meltdowns and the distractibility... It just threw me into the feeling of hopelessness again...

OP posts:
bobbytorq · 14/02/2023 21:51

Return2thebasic · 14/02/2023 21:24

@bobbytorq , thanks for the comments. We are expecting the next appointment at the end of Feb will be increasing the dosage. But DH is wondering if staying on this current dosage for a little longer would help ease the side effects for next increase. Supposedly, the body might have more time to get used to this level before moving to the next higher level?

I suspect our psychiatrist would leave us to decide, as no two people are the same and no one can really predict...

May I ask, if you happen to know any plausible explanation, what makes a person react positively at a lower dosage than a higher dosage , in terms of medication effectiveness? We saw noticeable difference in his maturity and mood stability when he had 5mg, and NOTHING when it's increased to 10mg. It feels like all has gone back to square one...the forgetfulness, the meltdowns and the distractibility... It just threw me into the feeling of hopelessness again...

I suspect the initial improvement was down to placebo effect as 5mg is likely to be sub-therapeutic. That will have been overridden by your sons anxiety around the side effects. The current guidelines are to titrate against symptoms/side effects over a 4-6 week period. Hopefully your son can tolerate it until the dose is optimised. I'd not be expecting any results now until the dose is significantly higher.