Adult ADHD meds- Need thoughts, opinions, experiences ahead of appointment tomorrow please

[freckles20]

I have recently been diagnosed with ADHD (primary inattentive with hyperactive traits).

After waiting for 18 months on the NHS for an appointment, I paid to go privately (and saw the same consultant privately that I'd have seen on the NHS ).

Tomorrow I have another meeting with the same psychiatrist to discuss medication.

His report suggested Atomoxetine (Strattera an SNRI) or Guanfacine as an initial suggestion. He also mentioned Vyvanse or Elvanse as a possibility.

I'm aware that the first two are non stimulants, and the second two are stimulants.

I am supposed to have done some research but I'm a bit overwhelmed by it all.

I already take sertraline which is and SSRI. If possible I would like to keep taking it and I'm unclear if that's ok with the first two options.

I appreciate that everyone is different, and that I need to listen to his advice. But I'm mindful that every appt. is very expensive and for each prescription I have to pay a prescribing charge and also pay for the medicine myself.

Once (or if), we settle on a medication and a dose the consultant can pass me back to the NHS and my GP will prescribe. But the longer it takes and the more options we try the more skint I'll become!

I would love some thoughts from other people with adhd- especially wrt any medications that did or didn't work for you, or anything else that maybe I should know.

ATM the symptoms that make life must difficult for me are horrendous procrastination, lack of motivation, brain fog, disorganisation, forgetfulness, short term memory loss. My brain has a thousand tabs open and I am chaos personified!

I have had no issues with substance abuse, I don't drink alcohol and am in generally good health. I had bloods, an ECG, BP and heart health check and all was fine. I am in my mid 40s.

I initially didn't like the thought of stimulants but having heard how much difference they make to some people I feel more keen to try than. I did previously. But then I worry that I'm expecting too much.....

Any thoughts would be very gratefully received.

[Kite22]

Sorry, I do not have the answer, but would like to follow the thread to see what thoughts those more knowledgeable do have.

[yaldy]

I take Elvanse and it really changed my life for the better. Didn't try anything else unfortunately so I have nothing to compare it to. The only negatives for me have been trying to maintain an already low-bmi and it making my insomnia worse, but I feel like it's a worthwhile trade-off.

I have heard that you can't take certain adhd meds with depression medication so not sure if you could do both, however I've also heard SO many stories from women who are given anti-depressants when what they actually needed all along was adhd meds.

I certainly have no symptoms of depression or anxiety when I'm on my tablets.

If you don't get responses here, check reddit. Either the main adhd forum or adhdwomen. They've both been a god send to me.

Also... word of warning about moving back to NHS care. It's been over a year for me and I'm still paying privately for meds because by GP won't agree to shared care. So don't feel like you have to settle for the first thing you try because you want to get under shared care ASAP, it's a long process (that's the most adhd UNfriendly thing in the world) and you'd be better trying different meds to see which works for you.

[scarpa]

I take Concerta XL, an extended release stimulant.

I was worried about starting stimulants as I'm overweight (thanks, binge eating that was probably dopamine seeking due to ADHD and I didn't know til I was 28...!). I thought I was already putting my heart at risk.

My consultant has been super careful to check my blood pressure and heart rate regularly, I've had no issues or side effects to concern me, and meds have dramatically changed my life. When I was first diagnosed a few years back, I didn't want to try medication. Throw in a covid related breakdown and a complete removal of all my routine and coping mechanisms and I decided I had to try... and wow.

It has been transformative and the only downside for me has been that days when I forget to take them show me how hard everything has been for so long and how it didn't need to be (and on those days the symptoms feel 'worse' than they used to, although I'm fairly sure it's just the contrast).

It's much more subtle than I was expecting. I thought 45 minutes after I'd taken them a lightbulb would ping on over my head and I'd be focused and motivated and energised - it's not necessarily like that. But a few days into taking them, I realised I'd gone through my to do list without the agonising guilt ridden procrastination, or having gone to bake something or got stuck in a mumsnet scroll hole. Then I found redirecting back to task after distractions was easier. I still need to trick/jolt myself into starting things and I still lose my fucking car keys 15 times a week and I still struggle with symptoms in certain scenarios, but I don't feel like I'm doing life on hard mode all the time anymore. And I'm no longer on the SSRI I was on for a decade - turns out I'm not depressed when I'm not constantly furious and frustrated at my inability to function

I've never tried nonstimulants so I can't advise on that, but I hope you find something that works for you!

[scarpa]

Agreed about the reddit forums, and also the 'UK Women with ADHD' and UK ADHD Right to Choose (or similar name) on Facebook if you're on there. Plenty of good advice!

[freckles20]

@yaldy thank you SO MUCH for your reply. It's fantastic to hear a 'real life' point of view.

I'm glad that you've found something that works for you. My BMI is too high so I'm not too worried about that. I'm not great when sleep deprived but maybe if life wasn't so hard I'd cope better! In what way does it exacerbate your insomnia?

It feels odd that his report suggested non-stimulants before stimulants as most people seem to start the other way round. I'll try to find out why.

Thanks for the tip about Reddit. I'll take a look.

Also thanks for mentioning the shared care issues that you've had. I'm sorry that things haven't been straightforward. My GP seemed open to shared care but she did warm me that she would have to work in conjunction with the pharmacy guidelines.

I've also absolutely no idea how much this type of medication costs privately (on-top of the £300 fee each time I speak with psychiatrist even for a short time about meds) .

I know costs shouldn't really influence my decision but there may be a cut off beyond which I'll run out of savings!

[freckles20]

@scarpa thank you for your reply. Posts like yours make me dare to hope that things could be different.

Only loosing my keys 15 times a day would be fantastic!

I started the antidepressant after my son's metal health deteriorated and he became suicidal. If helped me to cope with the anxiety I felt- and I'm still coping so I worry about stopping it because it helps me parent him in a mostly competent and compassionate way- and I can function without him knowing I'm terrified!

Ironically I got assessed for adhd after CAMHS highlighted that my son may have the inattentive type. He's still waiting for an assessment which is a huge source of guilt.

Anyway, I'm rambling now.

Thanks again

[WhenZoomWasJustAnIceLolly]

All guidelines say that stimulant medication should be first line treatment. Unless there’s a reason you can’t take it.

I take sertraline with concerta. I’ve been able to reduce the sertraline too. It’s really helped me but I struggled hugely with the initial titration and side effects.

I’m lucky and gp accepted shared care after a month.

[freckles20]

@WhenZoomWasJustAnIceLolly hmm I didn't know that. I'm even more curious as to why non-stimulants were the suggested 'Plan A' in his report now.

Do you think that I'd find that info in the Nice Guidelines? It would be good to be able to mention it to him when we meet tomorrow.

Sorry to hear that the side effects were tricky. Would you mind telling me what you struggled with?

Sertraline initially made me feel horrendous. I'm not sure I'd have coped without DH helping me and my GP convincing me to give it 4 weeks. So I feel although everyone is different forewarned is forearmed.

Also maybe I'd be better not to experiment with meds and doses prior to Christmas. I'm desperate to reduce my symptoms, but kind of need to be able to function and deal with the in-laws!

[WhenZoomWasJustAnIceLolly]

Yes, it’s in the NICE guidelines.

I struggled with a ‘crash’ as the meds wore off. At that point my racing thoughts and agitation came back with a vengeance. Splitting the dose helped. I also struggled with palpitations, dizziness, insomnia and reduced exercise tolerance.

These things have all got better though. There was a point about four weeks in when it ‘clicked’.

[Rainbows89]

Just wanted to say good luck!

I have a similar appointment on Tuesday morning and feel pretty nervous about it.

[freckles20]

@WhenZoomWasJustAnIceLolly thank you for letting me know.

I thought I'd read last night (3am last minute research) that Concertina is supposed to be a slow release medication. Did you split it by cutting up the tablet?

Thanks for the heads up about side effects. I know everyone is different but it helps to know what could happen....

[70sDuvet]

Could anyone give me a very rough idea about how much private assessment and prescriptions are? By dm if preferred.
A family member is really struggling with what we think is adult adhd and waiting lists are obviously long if not impossible, if it was anyway affordable to help them going forward with this I would like to be able to do so but don't want to offer if it just won't be sustainable (I know it isnt an option for them)

[WhenZoomWasJustAnIceLolly]

Concerta is slow release and you can’t cut it up. I split it by taking one tablet later in the day. I take 36mg in the morning and 18mg early afternoon.

[ToughTittyWhompus]

They usually only try non stimulants if people don’t get on with the stimulants.

As you’re on an SSRI it’s advised to avoid the Elvanse group of meds and go with the Xaggitin group instead - the former two together can cause Serotonin Syndrome.

[WhenZoomWasJustAnIceLolly]

70sDuvet all in all I spent about £1000. My assessment was only about £400 but the costs of letters, prescriptions etc during titration of meds stacked up. I put it on a credit card and don’t regret it.

Private prescription was £140 for the cost of the prescription and then £112 for the medication itself (month’s supply). Ouch.

[ToughTittyWhompus]

If anyone is paying privately, use Boots, Asda or Tesco for medications - they are 1/3 of the price that indie pharmacies charge.

GPs generally can’t agree to shared care as they are not able to prescribe those medications.

My NHS Psych took over my ADHD meds once I’d tittered and was stable (rather than me having to use my local ADHD service).

I take Methylphenidate Instant Release 20mg x3 a day.

The highest dose of long release wore off after just 4 hours on me.

I had a bad reaction to Elvanse after 3 days (see above re SS).

[WhenZoomWasJustAnIceLolly]

As you’re on an SSRI it’s advised to avoid the Elvanse group of meds and go with the Xaggitin group instead - the former two together can cause Serotonin Syndrome.

That is true but the Psychiatrist I saw said he has never actually seen it happen and that it was a small risk, just to be aware of symptoms. And I was on 200mg sertraline when I started concerta. I’m only on 50mg now.

[WhenZoomWasJustAnIceLolly]

GPs generally can’t agree to shared care as they are not able to prescribe those medications.

Not true, they can prescribe under a shared care agreement. They can prescribe, but has to be under the supervision of a psychiatrist.
My surgery agreed straight away and that’s in Wales where it’s more complicated.

Annual review with private psychiatrist and he’s available if any problems.

[WhenZoomWasJustAnIceLolly]

Yes the prices above were for supermarket pharmacies. Independent ones charge more. However, concerta is particularly expensive I think.

[ToughTittyWhompus]

It happened to me I’m on Venlafaxine - 150mg so not a large dose and combined with 40mg of Elvanse - oooft. Thoroughly unpleasant. My Psych said if it was going to happen to anyone, it would be me He knows how shit my luck is!

[ToughTittyWhompus]

@WhenZoomWasJustAnIceLolly

GPs generally can’t agree to shared care as they are not able to prescribe those medications.

Not true, they can prescribe under a shared care agreement. They can prescribe, but has to be under the supervision of a psychiatrist.
My surgery agreed straight away and that’s in Wales where it’s more complicated.

Annual review with private psychiatrist and he’s available if any problems.

Ah okay. There’s also behind the scenes to consider - my GP agreed to share care with my Psych for my CPTSD meds (Pregabalin and Diazepam) and her colleagues were in uproar over it I see my Psych and GP every month each (more if needed), but the surgery does not like it.

[freckles20]

Back with an update.....

He prescribed me 20mg of Elvanse. To move up to 30mg if I tolerate the 20mg well.

He explained the risk of Seratonin syndrome but said it was minuscule.

He asked me to not drink any caffeine whilst it's in my system. I'm wondering if that means I have to forego my morning cup of tea? It may sound minor but I don't usually function without tea!

I am feeling really nervous, and hopeful.

[WhenZoomWasJustAnIceLolly]

ToughTittyWhompus appalling luck!!

OP , good luck, I hope they suit you and help. I do question whether elvanse might have been better for me so I am interested to hear how you get on!

[WhenZoomWasJustAnIceLolly]

I was a hardened caffeine addict before meds, OP. I think I was self medicating. I now can’t tolerate caffeine and have decaf tea.

Caffeine gives me horrendous palpitations and shakes, like you’d get if you drank a few double espressos. I couldn’t function without tea before but I can now I’m medicated and a decaf tea is fine. Some people tolerate it ok.

[TallulahsCurse]

I wouldn't ever recommend medication, especially not as an adult.