Sunnypad wrote: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.
Sunnypad wrote: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.
Sunnypad wrote: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.
Sunnypad wrote: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.
Sunnypad wrote: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.
Sunnypad wrote: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 DopamineI 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)