Question about methylphenidate.

[Cat00]

Hello, I'm knew here but not to healthunlocked. I've been on the Chronic Migraines and Fibromyalgia Forum for probably 20 years now.To cut a long story short, through seeking help for my daughter it was discovered that both I and her have ADHD. I'm 46 and she's 9. We have both just had our first week on meds, she is on Medikinet 10mg I think it's called and I am on Xaggitin 18mg. My daughter is absolutely fine and if anything is complaining about not feeling any different whereas I am having loads of side effects.

I am feeling very sick throughout the day and can't really eat, I've lost quite a lot of weight already. My jaw is in a lot of pain, I've always ground my teeth at night and frequently have jaw pain in the morning because of this however its all day now too. I'm having big mood swings, feeling very loving towards humanity one moment and then quickly afterwards feeling very depressed, I have no saliva and im cold all the time. The only time I feel well is when I exercise, so I'm probably doing too much of that.

My question is, next week I'm supposed to double the dose, I'm not sure if I should? We're paying privately for it and the longer I take to titrate the more expensive it is and all my life I've been in constant pain and had to deal with unpleasant side effects so I could just force myself through.

Does anyone have an experience like mine but still managed to turn the corner and make the meds work for them? Or do you think I'll be like the for 6 weeks?

Anyone's personal experiences would really helpful to me!

Cheers,

Cat

[TexasTripletMom]

We were the same age when we gave birth!

I am on a generic methylphenidate, & had been for over 5 yrs, then a break with a retiring Dr, new sr, etc... and am back on.

I know that with some other drugs, the same dosing but different manufacturers, I had different side effects.

Another drug (non-ADHD) had no effect on any of my acquaintances, but sent me rocking in the corner of the room, hot flashes, etc.

All I can say is try a different brand, or a different drug. I am on 36mg, twice a day. sometimes I forget the second one. & now that I'm back on the stimulant, my blood pressure is back down go figure.

You might look to see if there's any place that can do the dna/medication matching stuff.

Hang in there!

[Cat00 in reply to TexasTripletMom]

Oh thank you so much for the reply!I feel like this drug has made me turn into what I thought ADHD was before they diagnosed me with it.

I can't string a cohesive thought together, I'm worse at everything and my mood just going down. The only time I feel well is in the gym and then I'm unable to eat so by 3 o'clock I'm unable to stop shivering and can't function. But I really wanted this drug to help me, being diagnosed at the age of 46 seems like a chance to make a better go of my life but it's not going very well so far, I'm gutted really.

I'll have a chat with the prescribing nurse and see what she thinks I should do.

Did you have triplets? Blimey

[Dell12345]

It sounds like you've just not found the right drug for you yet. Many people have to try a few different ones to get one that works well for them. I'd have a chat with your doctor about switching to something else. There are many formulations of the main ADHD drugs, as well as a few different drugs. It's very common to not find the right one straight away.

[Cat00 in reply to Dell12345]

Thank you that's very reassuring. I'm riddled with illness so I'm on a lot of other meds, not experienced anything quite like this though. I was on anti depressants 25 years ago had to try few, it was unpleasant at times, feel too old for this emotional roller coaster now though!

[Laviedamocha]

ooh spookily similar to myself. I’m 46 with a 9 year old son. Got diagnosed because he has it. He’s also on Medikinet xl 10mg and I was on 18mg Xaggitin xl. Everything was fine and they kept upping the meds until at 72mg I went v cold and had an irregular heart beat and LO reading for my heartbeat v scary - took psych Uk 3 days to respond to my concerns!! It doesn’t sound like xaggatin / methylphenidate is for you. There are lots of other options but be warned, they are not available. I am still going through titration after 6 months. I’m on 18mg Concerta Xl currently. It’s barely touching the sides but we are waiting to for 2 other drugs to become available.

Make sure you are taking your bpm readings, it could be your heart rate is low. You can get a gum shield for teeth grinding but at the end of the day you’re not feeling better on the meds you seem to be feeling worse. Your psychiatrist or person titrating you should know how you are feeling and not be upping your medication- it sounds like lazy care because there are so few medications available at the moment.

I lost a lot of weight initially but I’m now back up to being overweight! 🤔🙁 That aspect should settle down. Make sure you have a good breakfast before you take the meds and drink lots of water if you decide to stick with it. Good luck. It will be worth it if you can get it right.

[Cat00 in reply to Laviedamocha]

Wow we are really similar aren't we?Because its a private diagnosis the NHS won't take over the payments until the titration period is over, so the longer I take to get to the right dose the more expensive it is 🙄. They also said that the NHS won't do it if I'm on Concerta bc it's too expensive so they didn't want to put me on it if I ultimately wouldn't be able to continue it later sadly.

I do feel awful, mood swings, cold and sick plus my concentration is worse than normal although the jaw is calming down a bit and the nausea too really. It's the depression I'm struggling with the most. It honestly feels like the longest week I've ever had!

I've emailed the nurse so hopefully she'll have some advice but like you said if we can only get hold of Xaggitin then I don't suppose I've got many options really?

[Laviedamocha in reply to Cat00]

Psych UK put me on Concerta because they couldn’t get the supplies of Xaggatin! ….they now can’t get the Concerta either and patients have been informed that they won’t be able to fulfil prescription requirements and it’s ok to have a break in your medication! My titration has been ‘put on pause’! I only found this out when I queried why I didn’t have a form to fill in on the system like I normally do each week! This is a private health care provider. I managed to get it through the NHS somehow before they started turning everyone away. You are not paying for a better service or reliable supply of medication unfortunately - it’s just a quicker service! There is a shortage of most adhd medication everywhere (luckily medikinet seems to be ok at the moment). You might want to ask your health care provider about other medication options that are actually currently available.

[Quincie]

Can only advise that if you're feeling this bad on a lower dose & you're meant to increase the dose then surely the symptoms are going to get worse? The symptoms you describe sound awful! It's not normal to go through all that just to help you maintain focus. Pls see your Dr about changing to another medication.

[Cat00 in reply to Quincie]

I'm getting lots of differing feedback about the side effects, some are saying keep going and they will subside and others are saying change brand. Because there is such a shortage I don't know if changing brand will be possible. I've emailed the nurse about doubling the dose next week so I'll see what she says. I might just wait a week longer and see how it goes!

[Quincie in reply to Cat00]

Wishing you well then!

[Billybostin]

Hi Cat,

I’m in the UK too. I got my diagnosis last autumn and started on Xaggatin 18. I had a lot of side effects in the first few weeks. Nausea and dry mouth were horrible. Amongst others. My side effects took a wee while to subside and I titrated up eventually to 54.

I wasn’t sure how much benefit I was getting so my psychiatrist agreed to trial me on Elvanse. I’ve only just managed to get the prescription and am experiencing side effects once again.

I’m not sure Elvanse is right for me either - apparently it’s worse for sleeplessness and mood instability than Xaggatin and I’m getting these side effects plus it’s having no effect whatsoever on my impulsivity around food - which Xaggatin did - my sugar/trashy white carbs switch is well and truly back on.

It seems it is a bit trial and error - but I have been repeatedly assured side effects do tend to ease off as you get accustomed to the drug. My worse side effects were definitely in the early weeks and I didn’t see a worsening as my dose increased.

HTH

BB

[Cat00 in reply to Billybostin]

Yes mood instability is the one that's effecting me the most. I can cope with the nausea if my mood is more stable. I've always been a terrible insomniac so I wouldn't keep going if my sleep got worse bc it's so bad already I wouldn't be able to function at all.It's interesting that Xaggitin helps with food impulsively. I developed prediabeties last year despite being a healthy weight so I've gone virtually keto. I've been trying to loose the same half a stone for 10 years so I'm loving the current weightloss situation but bc I've upped my exercise so much I've probably taken it abit too far. Which is probably making me feel so cold and shaky.

Just a question, I was always a big coffee drinker buy I think it might be making me more mentally unstable on this drug. Do you drink coffee much?

[Billybostin in reply to Cat00]

I love coffee. Black. Strong. All morning. Switch to decaf after lunch. But also drink irn bru so still have caffeine.

I remember reading that caffeine doesn’t affect ADHDers like neurotypicals. But 🤷‍♀️

I’m awaiting ASD assessment so I may not be that typical.

Impulsivity around food has always been an issue for me and I’ve struggled with my weight because of it. Sprinkle in years of various diets and restriction along with my perfectionism I’m left with disordered eating which I’m very slowly progressing with. No idea if Xaggatin is particularly good at impulse control for food. Know some adhd meds are used off licence for binge eating. And ADHDers are prone to eating disorders and binge eating.

[Mamamichl]

sounds like you need to do a gene sight test. If you have side effects, definitely tell your doctor. I wouldn’t recommend going on a higher dose but definitely talk to doc before making changes to any mental health med.

[Billybostin in reply to Mamamichl]

The CYP tests are the only available privately and cost approaching £1000 in the UK

I looked into this as I also have problems taking SSRIs.

I’m sticking with age old trial and error method.

[Mamamichl in reply to Billybostin]

That stinks. I’m so sorry.i was worried about getting mine paid here in the US. Not much of an issue with that, but the 2 companies won’t agree on generic or name brand meds.

[Cat00 in reply to Mamamichl]

Yes sadly I would have thought we wouldn't get it on the NHS particularly since I couldn't get the diagnosis on the NHS either. Cambridge has 4 times the national average of ADHD so it was a 5 year wait for children and a 7 year wait for adults. Never paid for private medical care before but didn't want my daughter to be undiagnosed for entire childhood.

[Mamamichl in reply to Cat00]

That’s astounding! There are places with long waitlists, but we are talking about a year for neurological testing. I would 5ink not many places are willing to take the chance with privately paying 🤷🏻‍♀️

[Cat00 in reply to Mamamichl]

The general consensus seems to be because we have Cambridge University in our city we've managed to breed more neurodiverse people than the average cities in the UK but obviously that could just be nonsense 😁.

[Mamamichl in reply to Cat00]

Are you sure it’s that more neurodiverse people are bred or could it be that the society there isn’t as accepting of neurodiverse… or even that the staff could be overdiagnosing. There are so many possibilities.

[Cat00 in reply to Mamamichl]

I've no idea, Although I would say if anything ADHD is more accepted here because its so common. I've lived in many different countries in my youth but way before I knew anything about ADHD so I can't really compare?

[Billybostin in reply to Cat00]

CYP testing isn’t available on the NHS at all for psychiatric drugs. There’s limited testing available for some specific drugs - and though this is a developing area it isn’t likely to be rolled out to cover more drugs due to a variety of reasons.

Testing is covered by NICE guidelines and will be based on cost vs benefit. It’s cheap and easy to try different meds from a service perspective whereas developing the required laboratory infrastructure to enable testing to happen is costly and complex. Just because there are tests available doesn’t mean they are clinically necessary or add value either.

I’m sure over time this area of personalised drug therapy will become normalised from what I gather from pharmacy colleagues but for now there’s reasons for it not to be readily available.

[Cat00 in reply to Billybostin]

Wow you write in such a cogent way. I've only been on this forum for 24 hours but so far it's been incredibly helpful!

[NorKoln]

Can confirm that I had anger issues when i first began taking Ritalin. I took it as needed for a decade before I went on it full time. I have not noticed anger issues since.

I do clench my teeth alot...

[Billybostin]

I had another thought Cat - your age and hormones could also be playing a part in how you are feeling. Perimenopause can hit ADHDers really badly. I’ve had a dreadful peri.

[Cat00 in reply to Billybostin]

Yes its a bit hard to say about the perimenapause, I have 2 friends exactly the same age and both are in perimenopause. They have symptoms and irregular periods. However my family reach puberty late, I was 15, my mum 16 and my aunt 18! So we tend to have menopause late too. I was on the pill continuously for 4 years to try and help my IBS but I came off it last year and my periods have gone back to being regular as clockwork.