Quick Question About ADHD

[AsleepInYorkshire]

I spoke with my GP on Friday morning, and she's agreed with my assessment that I have some symptoms associated with ADHD. When I was diagnosed last year with restless leg syndrome (RLS) the consultant doctor told me that I should not expect the RLS to be the only problem I would encounter on my journey to managing my health problems. I also have issues which at the moment I prefer to call a circadian disruptive disorder.

I completed an Adult Self-Report Scale Symptoms Checklist on Friday afternoon which is a preamble to seeing a psychiatrist who will be able to diagnose the condition positively or otherwise. A score of 4 or more indicates I should see a specialist. My score is 10. There is also other robust information which on the balance of probabilities reinforces that the first port of call for my symptoms is to rule ADHD in or out.

My RLS was causing my sleep architecture to be severely disrupted. Amongst all of the symptoms I had excessive daytime sleepiness and clinical depression which were masking the current difficulties.

The NHS waiting list is a minimum of 6 months. I’ve concluded it makes sense to pay for this privately. I know we’re a small community, but I was hoping that I could reach out and ask if anyone could offer any thoughts or first-hand experience of using a private ADHD clinic please.

I’ll admit that on Friday my head dropped a bit. I’m tired of it all and was feeling a little sorry for myself. I just have to remain positive, count my blessings and get on with it. Chin up .

AiY(D)

[Loup321]

This is very anecdotal, and from the perspective of children looking for an EHCP during Primary School years. Probably not relevant to you. And it's not first-hand either, so I may have got muddled.

One person has told me that her friend got a private diagnosis for their child. It cost money, but the disability benefit that came through far sooner than waiting for an NHS diagnosis would pay for the diagnosis in the long run.

Another person has told me that ADHD in itself isn't a disability. I forget exactly how she phrased it, but she believes that since her son can't cope with things in the same way as other people, he does have a disability, but it's HOW hard he finds it to cope that is the thing that is measured, and he has been assessed as not being disabled. It's a fine balance, and as with many disabilities, there are good days and bad days, and things could change for him over time.

Someone else I know looked into getting a private diagnosis for her son, but found it was about £3000 (which she couldn't afford). She also found out that the education authority probably wouldn't accept the diagnosis from the private clinic anyway, and the EHCP still had to be done by the education authority.

I think you need to ask why you need the diagnosis, and whether the private clinic's diagnosis would be sufficient for that purpose. If it's for your piece of mind in the quest to better understand yourself, then I think you should just go for it. If it's to get a benefit, or an allowance at work, then will the authorising authority accept anything other than an NHS diagnosis?

Sorry, I don't know any more than that. The only one who actually used a private clinic is someone I have never met. But the two children I know who have been diagnosed are really lovely boys, but with masses and masses of energy (so fine in small doses, but need to be told to calm down frequently, and I'm always worn out at the end of day with them).

[Sunnypad]

AiY
Hello!

Not sure if this is helpful but just in case

You may recall I've had issues with depression, anxiety and insomnia over a few decades. I did also consider seeing someone privately re ADHD. It might be that I was influenced as it's very much in the news, but my seeming inability to concentrate on anything was causing me a lot of practical problems. I have just moved house and it was not at all the organised task it was the last two times I did it.

I decided against seeing anyine, primarily because I understand the clinical guidelines say you would need to have has shown signs since childhood. I definitely didn't. It might be that info is being challenged now though.

Also, the meds for it are possibly not suited to me. I gather there's issues as well if you have any blood pressure problems, just in case you have that.

Of course, if you wish to look into it, by all means do, but chatting to my doctor, and a few of the family medical contacts, I came to the conclusion that's not likely to be something I have.

I almost wanted it to be because I wanted a solution. I hope you find more useful outcomes though.

I wonder if you are like me though - doing a lot of multi tasking at work? Honestly, years of that have done nothing for my brain!

Has the Pregablin continued to work well?

[pje16]

I’ll admit that on Friday my head dropped a bit. I’m tired of it all and was feeling a little sorry for myself. I just have to remain positive, count my blessings and get on with it. Chin up .
AiY(D)

Much the same as me last month when I was told I had MND
but things for me could be a lot worse
I have good friends and a close knit family.

I know it can be hard my friend, but there will be better days ahead
all the best
Paul

[didds]

If it's to get a benefit, or an allowance at work, then will the authorising authority accept anything other than an NHS diagnosis?

and might it possibly be backdated from the date of claim if it takes longer to come though? (Ive no idea, and it could be the benefit is needed asap of course).

[88V8]

I spoke with my GP on Friday morning, and she's agreed with my assessment that I have some symptoms associated with ADHD. When I was diagnosed last year with restless leg syndrome (RLS) the consultant doctor told me that I should not expect the RLS to be the only problem I would encounter on my journey to managing my health problems.

RLS can be a right pain. I had that last year for a while, came on for no apparent reason and then thank goodness it stopped. Certainly not conducive to sleep and as you say, if one is not sleeping well that has many knock-on effects.

Looking at ADHD on a random search I see that I have some of the symptoms most of the time, and some of them some of the time and some not at all.

For me, I don't think any of them are aspects that can be helped externally, the solution would have to come from within. and at my age I think it's just how I am and I have to live with it.

It's something we experience in our individual way, and I expect that for each of us the solution if any, would be different.
Just being aware that one has certain characteristics that may be an impediment, is a good start.
Self awareness, perhaps not an attribute of Mr Raab.

Hope you find a betterment, whatever it may be.

V8

[AsleepInYorkshire]

Has the Pregabalin continued to work well?

Hi Sunnypad,

Yes thank you. The Pregabalin (Lyrica) has worked very well. When he rang me to confirm his diagnosis and his proposed route regarding medication he also advised if it worked that I should prepare for other issues to appear afterwards. In the euphoria of finding myself awake I forgot about this warning. Since mid-February my current symptoms have worsened. I assume that as the sleep deprivation symptoms have lifted the remaining symptoms have become more prevalent. They have always been present but lost under the weight of symptoms connected to the RLS.

RLS is believed to be associated with dopamine.
There's evidence to suggest restless legs syndrome is related to a problem with part of the brain called the basal ganglia. The basal ganglia uses a chemical (neurotransmitter) called dopamine to help control muscle activity and movement. Dopamine acts as a messenger between the brain and nervous system to help the brain regulate and co-ordinate movement. If nerve cells become damaged, the amount of dopamine in the brain is reduced, which causes muscle spasms and involuntary movements. Dopamine levels naturally fall towards the end of the day, which may explain why the symptoms of restless legs syndrome are often worse in the evening and during the night.

My current [main] symptoms are

1. Difficulty concentrating, especially for long periods of time (also making silly mistakes)
2. Difficulty remaining focused on one subject. Stuff just comes into my mind as I am doing one thing. It can be overwhelming at times. As my mind doesn’t remain focused on what I want it to do.
3. Memory problems, which makes it difficult at times when conversing
4. Anxiety - initially I assumed the anxiety was a symptom of sleep deprivation (but now can't be)
5. Lack of motivation (not just with work but with everything)
6. Hyperfocus. I can’t explain why as I simply don’t understand why it happens, but I can hyperfocus on certain subjects. The problem is it’s often not the subject I’d like my mind to focus on, or if it is, it can be rather obsessive.
7. Procrastination
8. I Never feel relaxed. Constant background feelings of anxiety. These can increase quite quickly, often for no real reason and my flight, fight or freeze response is triggered. I’ve developed a coping strategy to deal with this when it happens, but it is exhausting and can take a few hours to “come back down” and sometimes I need to sleep it off. I never feel serene or calm.

I’ve found the symptoms abate when

1. I take caffeine (I have no caffeine in my diet)
2. I take Modafinil
3. I take Ginseng (20:1 28,000mg)
4. I get plenty of strong sunlight. We’re talking a couple of days in excess of 50,000 lux. Which does mean in our winter I haven’t got any chance of getting anywhere near this.

All of these are known to increase dopamine levels. The Adult Assessment Self-Report Scale Symptom Checklist doesn’t diagnose ADHD. It’s a starter for ten. The assessment that follows by either a psychologist or psychiatrist is subjective but in some depth. It also involves a member of my family from childhood being asked to provide information about my behaviour as a child. That can’t happen as there is no one available for this part of the assessment. However, there is also evidence to support low dopamine issues continue in later life if “ones” childhood involved abuse. Regrettably I tick that box too.

My current understanding isn’t that I have a lack of dopamine, but it’s not used well enough in the synaptic gap. So the messages being carried by my nerves degrade. I suppose one way to imagine it, is like a light bulb that is flickering. It’s neither on nor off but flickers between the two and doesn’t really do the job it’s intended to do.

In the event of a positive diagnosis of ADHD some of the medications are controlled drugs. I believe one is amphetamine based. I’ve read a little about it and understand the chemistry reasonably well. There are other medications available. The current medication I am taking is also a controlled drug. However, it doesn’t, to the best of my knowledge, deal directly or otherwise with dopamine deficiency. I stand to be corrected.

I’m absolutely confident that whatever lable is applied to my symptoms they are genetically inherited.

Thank you for your kind reply Sunnypad

AiY(D)

[Sunnypad]

AiY
I'm glad the Pregablin helped you. Are you back at work and finding it okay?

A lot of what you describe is stuff I have, I didn't have it all my life though. I might try ginseng but so far I have found my body beats any natural supplements within a couple of days. I also tried l-tyrosine but found it made me really itchy, which I presume is some sort of histamine reaction.

I sympathise, I often feel like everyone else's brain works in a way mine doesn't. My parents are/were very organised people. I'm slightly relieved my mum doesn't want to see the new flat yet (it's a building site so can't be dropped off right at the door) because I think it will take a long time to get it in order. I'm actually pondering paying for help but it's very pricey and there's no money after buying what's basically a second property, lol.

The sunshine thing is a huge factor I know. Sounds like your doctor is very helpful so that's great.

[stewamax]

As I noted in a related post, Pregabalin is essentially a nerve-pain blocker but has the useful but ill-understood side-effect that it promotes sleep. It is not a soporific per se and should not cause day-time sleepiness.
For RLS, I suggest you see your GP about trying a low dose of Sinemet (one or two 62.5mg per diem). It is OK to take with Pregabalin.
Sinemet is prescription-only, but unlike Pregabalin it is not a controlled medication.

Pregabalin and Sinemet are often prescribed together to palliate some of the symptoms of Parkinsons and of ‘Lewy Body Dementia with Parkinsons Plus’

(I am not a doctor.)

[stewamax]

Your consultant or specialist neurological registrar may not have mentioned it, but there is a fairly definitive test for dopamine deficiency and for where in the brain it is deficient: this is a DaTScan* that measures the amount of dopamine transporter** present.
Amphetamines for your possible ADHD work by directly altering the concentration of dopamine transporter.


* a DaTScan can be done in two ways: SPECT (a special CAT scan) and PET, and sometimes both are used
** a protein that moves dopamine from synapse to neuron and controls its reuptake

(I am not a doctor and this is not clinical advice)

[AsleepInYorkshire]

I've had an assessment with a psychiatrist this morning.

I have ADHD.

I’m processing this.

AiY(D)