ADHD & Me (My Medication)

[AsleepInYorkshire]

I'm 61.

I was diagnosed with ADHD in July earlier this year.

ADHD is neurodevelopmental problem. It starts in childhood.

Undiagnosed and therefore, untreated ADHD will impact, as I can attest to, on every aspect of the sufferers life. It's relentlessly cruel when untreated.

I was diagnosed with RLS in July 2022. The RLS had severely disrupted my sleep architecture, from about the age of 15. There's a diagram in the presentation below which whilst it isn't my sleep architecture it is, nonetheless, an excellent representation.


I have been prescribed Elvanse for my ADHD. It’s clinical grade slow-release amphetamine. The medication is titrated with monthly reviews from 30mg until the most suitable dose is achieved, with 70mg being the maximum prescribable dose. I have had two 10mg increases and now take 50mg per day. I take the medication at the same time every morning, which is 7am.

Here’s how it works.

In this particular [YouTube] video a slightly younger man than me, talks about his first experience with the medication I take. It perfectly describes the benefits I am getting. To clarify I am taking the blue & white tablet shown in the video.

I have another review early next week and I anticipate the medication will be increased by another 10mg to 60mg.

However, there's an extremely cruel twist with the medication. I'm not sure why but all doses from 30 to 70mg have limited availability and it's highly likely I will not be able to acquire the medication timely. The issue is forecast to last until late December, although I don't expect the delay to be 6 weeks. Perhaps I should not have said that

I first posted about my diagnosis of clinical depression on TMF’s Comfort Cafe in February 2000. I wasn’t too well then. The treatment didn’t address the underlying root causes of my mental health problems and I have spent 46 years living with the undiagnosed symptoms. It has been more than tough.

There are going to have to be some adjustments as I plan for my future. In the very short term I as I wait for the titration period to come to its conclusion, in late November, I am trying to process what I and those closest to me have been through.

Thanks for listening

Take care

AiY(D)

[Sunnypad]

Hi there

I just saw this - I'm sooooo tired but will reply properly tomorrow.

A demain!

[Sunnypad]

Hi *AiY*

I really feel for everything you've gone through over the years. Like me, you will be familiar with how doctors go through long periods of over diagnosing and under diagnosing things. The damage done is quite massive. Obviously I don't expect doctors to know everything. But it's sad.

I was unhappy with you being given Pregablin for restless legs but I can't recall if I said it or just hinted at it here. I'm not a doctor of course. Are you off that now?

I hope you get the medication you need and that it works for you.

I can't remember what my last post said but I've had a nervous breakdown and debating having no medication whatsoever. I'm on a new batch and can't seem to stop crying, but....I also have terrible RLS with it! I'd be inclined to try Pregablin myself but i think it causes weight gain?

ETA - how was the sleep apnea diagnosed by the way?
I have heard about the shortage of Elvanse and wonder what the alternatives are, have you tried anything else?

[AsleepInYorkshire]

Hi *AiY*
I really feel for everything you've gone through over the years. Like me, you will be familiar with how doctors go through long periods of over diagnosing and under diagnosing things. The damage done is quite massive. Obviously I don't expect doctors to know everything. But it's sad.

Perhaps I've chosen a poor analogy when I use solicitors. Each year our government pass or update laws. Which means solicitors, barristers and judges all have to remain relevant and keep up with the changes. But like all of us they work long hours, and their day is made longer by gridlock and commuting times. I can't imagine they arrive home at the end of their day and spend yet more of their precious time, "remaining relevant", by catching up on changes made to various acts of parliament and judgements passed in the last week.

I cannot begin to imagine what a GP has to do after their “dayshift” to attempt to remain relevant. The changes in medicine have been absolutely staggering over the last four decades. Keeping pace with it all and turning up to work on the coal face will have been challenging.

As a nation, as a cooperative, I opine we don’t spend enough time training any of our professions after they have left education. When permanent education ends we seem to forget how to keep the coal face workers updated with change. Our workforce becomes less relevant, less useful. It stagnates.

I am firmly of the opinion that we have developed systemic failure in most walks of our workplace. Worse, I’ve come to the conclusion that there is a pervasive and even worse problem. Information overload and a complete and utter failure to embrace information technology. Forms. More forms. Software that’s not seamless across various “silos” within our workplace. We’ve tried, and I have no idea why, to create factory lines where we demand intelligent people sit down, fill in forms all day. People “turn-off” through a lack of stimulation. We see their capabilities fall off. We are human beings. We aren’t robots.

We’ve chosen many partners. Our materialism drives our needs for ever better performance. But our first partner, materialism is never satisfied. We keep this partner in all the ways it needs to be satiated. We’ve created other partners to convince ourselves that we can maintain materialism. Meet overdraft, mortgage, credit, and debt. We’ve enslaved ourselves.

And all this is best observed in our beloved NHS. Our GP’s can’t remain relevant unless they spend a serious amount of their own time doing so. Some will do so. Our GP’s are now allowed to see us for 10 minutes. Which for those of us with complicated issues isn’t long enough. Often we don’t see the same GP. For those with long standing issues seeing the same GP is highly beneficial. Our politicians have drawn up a spreadsheet of how many “customers” a GP can see per day. And that’s it. That [proverbial] spreadsheet becomes the master of those who make the ultimate decisions.

And yes. I’ve waited, what amounts to a lifetime to obtain the support I am getting now. What a waste. And ultimately the cost to the NHS will have been horrendous. We have dedicated people working in our NHS. They are committed and rely on the NHS for their income.

I was unhappy with you being given Pregabalin for restless legs, but I can't recall if I said it or just hinted at it here. I'm not a doctor of course. Are you off that now?

Thank you for your concern. Pregabalin is a controlled medication. My dose was titrated over 6 weeks, starting at 50mg, and increasing by 50mg every two weeks. The side effects were horrendous. Some of the worst I’ve ever experienced. I stayed with it and after about 3 months I started to feel the benefit of a good night’s sleep.

I hope you get the medication you need and that it works for you.

In addition to pregabalin and my diagnosis of ADHD four months ago I am now on 60mg’s of Lisdexamfetamine. This too is a controlled medication. The active ingredient is amphetamine. Some will know it better as “speed”. All your hopes have been fulfilled Sunny. I am in wonderland. Many will think I am being overly dramatic when I say, I simply cannot recall a time in my life when I have felt so good. So normal. I do not have enough knowledge of the English language to be able to describe what is happening in my world. I am genuinely finding that frustrating. I have a need, an urge, to tell everyone how good I feel. I will admit that on the odd occasion I’ve had to hold back tears. They are tears of happiness. Tears that let me know it’s over. All over now.

I can't remember what my last post said but I've had a nervous breakdown and debating having no medication whatsoever. I'm on a new batch and can't seem to stop crying, but....I also have terrible RLS with it! I'd be inclined to try Pregabalin myself but i think it causes weight gain?

I’m not a GP or clinician. My advice is to speak with your GP about your options. I don’t think they can prescribe pregabalin? But don’t quote me.

ETA - how was the sleep apnea diagnosed by the way?

I had a polysomnography. If you are referred to a sleep hospital/clinic they will do a home sleep study first. Based on this they will follow up with a polysomnography which is an overnight stay. My diagnosis of sleep apnea was incorrect. I have mild OSA which doesn’t need any treatment. But I was prescribed Mirtazapine in 2014 and this induced severe sleep apnea which was picked up in 2016. Severe sleep apnoea is treated with CPAP. When I started on the CPAP I came off the Mirtazapine. So the medically induced apnea disappeared. There was no need for CPAP at that point. CPAP treatment when used on someone who does not have severe obstructive sleep apnea causes, wait for it, sleep apnea. It causes central sleep apneas. I eventually realised in 2020 that the CPAP wasn’t good for me, and I moved to another sleep clinic. They picked the ball up and ran with it. Eventually they got the message that I didn’t have severe sleep apnea, but still did a polysomnography after my home sleep study had shown there was another problem. I wore an actiwatch for 2 weeks as part of the home study. It was this that told them I had a problem which warranted a polysomnography. I also had some latency sleep tests the day after my polysomnography. They also revealed sleep issues.

Ultimately I was diagnosed with RLS and in particular period limb movement.

I have heard about the shortage of Elvanse and wonder what the alternatives are, have you tried anything else?

I’ve shopped around and have not gone without yet. Boots seem to be the best for keeping decent stocks of medication or at least their direct supplier does.

Serotonin versus Dopamine

I will visit this subject in greater depth at some point in the future. However, I wanted to add this to my post. I’ve spoken above about “systemic failure”. I think there is a significant amount of evidence to suggest that the NHS has embraced a need to treat depression with drugs that deal with the neurotransmitter serotonin.

All of my problems are related to the neurotransmitter dopamine. When the NHS eventually diagnosed me with clinical depression at the ripe old age of 38 their default setting was to prescribe medication that treats serotonin-based problems. Such medications antagonise periodic limb movement. The NHS was only able to see my clinical depression. It only treated my symptoms. It didn’t look for a root cause. It then prescribed drugs that ultimately made my existing conditions worse. ADHD starts in chidlhood. The NHS didn't diagnose me with anything until I was 38. I had been complaining of my symptoms since the age of 17. When a diagnosis did arrive it was incorrect and the treatment that followed wasn't aligned to the underlying problem. A staggering lapse. Very personal too.

I am not sure if this is still the case, but it certainly was in 2000. When someone with clinical depression has been treated with two [serotonin-base] anti-depressants and there is no improvement in their symptoms the NHS will diagnose treatment resistant depression and wait for it, prescribe a different, serotonin-based antidepressant. Total devotion to treatment of serotonin-based problems built into the fabric of the NHS. I was passed around psychiatrists, ear nose and throat specialists, neurologists and counsellors as the NHS floundered and ultimately failed.

It failed me. I am unable to shake the opinion that I am the tip of the iceberg. The sadness and guilt I feel about this thought, this possible reality, are difficult to deal with. There has been a pardigm shift and a better understanding of the issues connected with dopamine. ADHD is a neurodevelopmental problem, It is not psychological. It’s physical. My amphetamine is transformative.

I want to shake the NHS by its neck and let it know about this iceberg. I need to be the last person who experiences this wait. It’s been a relentlessly cruel journey. Torture that has at times been impossible to deal with and no support that was either available of beneficial.

Thank you Sunny for your kind words. Look after yourself. Perhaps you will allow me to ask, before I finish my post, for your indulgence. Humour me please and speak with your GP. If you don’t feel s/he is supporting you please try another. And just keep going. I know the difficulties you face. I have more than one wardrobe rammed full of that t-shirt. The deplorable reality is that the NHS is still not geared up to deal with mental health problems. Somehow I’ve managed to find a way through, albeit my ADHD diagnosis has come through a private practice. It’s cost me about £3K all in. The diagnosis was achieved following the NHS guidelines. When my titration reviews are complete my private clinic will issue a shared care plan to my GP, and they will issue my prescription through the NHS.

Keep going Sunny.

Take care

AiY(D)

[servodude]

I had a polysomnography

Not obviously poly enough!! A leg EMG should have shown RLS pretty conclusively

What you've described really annoys me.
I do think that a lot of sleep diagnostics these days is done with the intent of trying to sell CPAP machines - I get that there is a big need for them but it is a bit like asking your barber if you need a haircut
The market is huge and puts a lot of pressure on places to prescribe stuff - it's great when it works but if it's not needed it doesn't help to feel like you're trying to sleep with your head hanging out the car window. And once you've got a machine all subsequent problems get pointed towards "compliance"

But even then what you went through should have shown up quickly when titrating the treatment level - as you point out being over inflated causes central apnoea!

So it's a big grrrrrr from me but at least you're past that now

[Sunnypad]

*AiY* It makes me so happy to hear that you are happy. I'm honestly inspired by your positive approach to all this, and it is rare for me to stay stuff like that!

In terms of GP training, my experience is that they are constantly on training but I don't know if it's training that's actually worthwhile. Dad was a consultant so he had a specialism. The cartoons you see with GPs googling things are now just factual pictures.

On dopamine - I'd agree that this hadn't been looked at. On a smaller scale, I almost feel that a dopamine hit has been undervalued, or seen as a bad thing.

Thanks also for your concern. I am under the care of my GP. Interestingly, they were not familiar with the medication I asked to switch to. I know enough to do my homework in advance but I was surprised they didn't seem to know of it.

My main issue now is my life needs to change. But going forward, I will soon need to register with a GP in my new area. I stayed with the old one as my other property isn't sold and I thought I might go back there, but I think I'm going to clear it finally this weekend. (Long story). Appointments are all on the phone anyway.

I am reluctant to register with a new NHS GP. I'm assuming the process still involves blood tests, conversations about my weight, probably all sorts of new stuff since I last did it.

I am actually wondering what happens if I don't do it. I suppose it will take a while for my current GP to find out I've moved out of area.

Anyway, I'll worry about that if the property sells. But I am reluctant to take any more meds now. I'm on the lowest possible dose of the new one - another thing GPs don't seem to like - and touch wood, the restless leg problem has vanished with the reduced dose.

I don't want to hijack your thread so I'll stop waffling. But I'm glad for you that you got the treatment but still somewhat grrr, like *servodude*, that's there's been so many issues getting you here.

[stewamax]

RLS, like ADHD and clinical depression may be caused by a deficiency of dopamine or of dopamine transporter. Co-careldopa (Sinemet) is usually prescribed for this at a starting dosage of 2 or 3 x 62.5mg per diem. There is a special brain scan – a DaTscan – for assessing dopamine neuron damage.

Pregabalin (and its relative gabapentin) is a palliative for some types of nerve pain. For reasons not well understood, can also promote sleep (it is not a soporific per se) and may help RLS through this side-effect although is unlikely to have any direct effect.

Mirtazapine increases the amounts of serotonin and noradrenaline in the brain, but using it concurrently with an SSRI such as Citalopram (which reduces the rate at which excess serotonin is reabsorbed) can be OTT. Beware, particularly if you drive.

I am not a doctor. These comments are food for thought, and you should seek professional guidance.

[bungeejumper]

I'm not a doctor either, and I have a distinct aversion to quack remedies. But my wife finds that magnesium citrate helps with her restless legs, to the point where it's no longer an issue at all. It was first recommended by her GP, some ten years ago, and although it's been a bit fringy and poorly documented in the past, some recent blind-trial research seems to be adding scientific weight to the idea.

Magnesium supplements, especially if taken in conjunction with vitamin B6, appear to result in better sleep and in correcting deficiencies of both. Have a sceptical read, anyway: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9804944/

BJ

[stewamax]

I'm not sure why but all doses from 30 to 70mg have limited availability and it's highly likely I will not be able to acquire the medication timely. The issue is forecast to last until late December, although I don't expect the delay to be 6 weeks.

US patent protection of Lisdexamfetamine (sold as Vyvanse in the US and Elvanse in the UK) expired in February, which may be connected with the shortages. But whether we import US Lisdexamfetamine I have no idea.