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ADHD Medication - advice please

12 replies

Clarice99 · 31/01/2022 16:40

After a 2 year wait (NHS) I was diagnosed with ADHD last year. Since then, I have had to wait for appointments for blood tests, health checks and an ECG with a view to taking medication.

I already have a diagnosis for autism which immediately 'felt right', but when it was suggested I have ADHD, I was pretty freaked out by it. However, after going through the whole process of the assessment, I'm finally at the acceptance stage.

I am now on day 5 of taking medication - Methylphenidate/Concerta XL and I feel pretty shite.

Day 1 was very productive. I felt very focused and achieved some long overdue tasks in a very orderly manner. But since then, I have been in a foul, angry mood, snapping, being argumentative with my husband and just feeling very tense and anxious generally. I have a permanent headache and I haven't slept properly since I started the meds which makes me feel even worse!

And this is on a low dose - 18mg Shock

I have an appointment with the ADHD team in 9 days to review the meds.

Is what I'm experiencing 'normal' when starting medication for ADHD and if so, any idea how long I will feel this crap?

OP posts:

Clarice99 · 31/01/2022 20:15


OP posts:

BarrowInFurnessRailwayStation · 31/01/2022 20:20

It can take time for the medication to get into your system and begin to work.

Saying that, autistic people can find some medications difficult to tolerate or need a lower dose because of sensitivity. Our bodies can be somewhat different to other people's.


SuffolkBargeWoman · 31/01/2022 20:22

Be prepared to try a number of different medications before finding one that suits you. Also be prepared for not being able to tolerate them at all.
A lot of us are in the position of not being medicated because the side effects just aren't worth it.
Sorry 😔


BertieBotts · 31/01/2022 21:29

Just keep a diary and discuss it all with your doctor(s) when you have your appointment. Medication affects everyone differently so other people's experience isn't likely to be very helpful to you.


Notlostjustexploring · 31/01/2022 22:09

I started on Elvanse a few months ago now. First week I had a headache which I attributed to the not insignificant caffeine withdrawal...

The crash when the medication wears off took a while to get used to, and I'm still not a fan, but for me the benefits outweigh the negatives many times over.


amusedbush · 31/01/2022 23:41

Honestly, I'd heard that Concerta XL was a rough ride so when I was diagnosed last year, I asked my psychiatrist to skip that and put me straight onto Elvanse.

The comment about autistic people being sensitive to higher doses makes sense now though! I started on 30mg in December and felt great. 50mg was a breeze too, then I was put on the top dose, 70mg, two weeks ago. Last week I phoned the doctor and she told me to go and see her immediately - I had a heart rate of 115bpm while sitting still, blurry vision and muscle fatigue so bad my arms were shaking. She immediately stopped that dosage, put me back down to 50mg and I feel great again.

There was one day in between where I had no meds (the pharmacies around here don't stock 50mg so had to order it in) and I spent the entire day falling asleep wherever I sat Blush

Thankfully I haven't had any terrible side effects on this dose. I can even tolerate a little bit of caffeine, which is nice! I don't get a crash, I'm sleeping better than I did before and the appetite suppression means I've stopped binge eating for the first time in my life and I've lost 12lbs Blush


Clarice99 · 01/02/2022 16:43


Thank you for taking the time to reply. I will be keeping a note of the symptoms/side effects. The comment about autistic people often being sensitive to meds really does apply to me. I struggle to tolerate a lot of medication, so it's no surprise to me that Concerta XL is proving challenging.

I have to try though Smile

@Notlostjustexploring - that's all I'm hoping for too, that the benefits outweigh the negatives. But right now, that's not happening.

It just feels like negatives on top of negatives.

@amusedbush - the side effects on the higher dose sound awful and that increase in your heart rate sounds horrific!

I've been monitoring my BP and heart rate. Both are naturally low, but today my resting heart rate was 72 which is higher than my usual 55-60; however, I've had a horrendous day with work pressures thanks to a useless manager, so the increase could be due to that.

Great news about the weight loss. A beneficial side effect for a change!! Although I guess not beneficial for everyone.

I think I'm going to ask to come off Concerta XL and try Elvanse.

Thank you all.

OP posts:

BarrowInFurnessRailwayStation · 02/02/2022 08:47

I couldn't even tolerate 5mg of methylphenidate, three times a day.


BarrowInFurnessRailwayStation · 02/02/2022 08:49

Saying that, I can't even tolerate a cup of caffeinated coffee either.


knackeredcat · 02/02/2022 08:54

I'm on a baseline dose of 30mg Equasym XL where I top up in the mornings with up to 3 x 5mg of quick release methlyphenidate as a boost. It's taken me a while to get to this stage but this dosage feels right - I'm more productive and organised, and I fret less about communication. I'm still on titration as there were/are some BP issues initially but I'm striving to manage that better with diet, exercise, etc. And I won't lie, the extra weight loss has been very welcome Grin

I have to be careful I don't take any of the quick release meds too late in the afternoon or I'm up all night Shock


freckles20 · 05/02/2022 10:11

Hi OP, I am early on in my titration journey too. I have been taking Elvanse- starting with 20mg per day and now on 30mg per day.

Initially I was crippled by headaches. They have now mostly passed. I think some were due to the meds but I also think that other things contributed- caffeine withdrawal, sugar withdrawal (I didn't cut out sugar, but stopped binge eating), eating less in general, dehydration. I found things improved in time and I made a real effort to drink plenty and eat regularly every when not hungry.

The main issue I have now is that the Elvanse wears off rather quickly- about 5 hours after kicking in. I'm trying 5mg of methylphenidate as a quick release when I wake up, followed by the Elvanse but I'm actually not sure that it is working at all!!


billysboy · 06/02/2022 07:23

Also on concerta xl 90 mg now after gentle increase during titration
No obvious side effects and I still have a couple of coffees I n the morning
I still have some sensory issues mainly background noise but sleep well now and feel a lot more focused

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