Not being treated for ADD anymore, because I have ADD

[Mr. Gerbz]

Strange title, don't you think? I mean, why wouldn't I be treated for ADD, because I have ADD?
Allow me to start from the beginning. 24 years ago, a man and a woman... Just kidding, not that far back.

Almost exactly a year ago, I signed up with a well-known (in The Netherlands) institution specialized in ADD, PsyQ, to examinate if I really had ADD, and get medication for it. Within a month, I was called back, and had the standard over-the-phone intake. I was told I would only have to wait for about 3 months.
This became more than 6 months due to all kinds of organizational errors from their side, for example they couldn't find me listed anywhere at first, and eventually I finally had an appointment only to be called off an hour before, because somehow only that person realized I wanted to be examined for ADD instead of Asperger's syndrome, of which I had clearly said I had been diagnosed with at my 16th but didn't need any kind of examination for anymore, and that I signed up with them to examine ADD.

Another month or two later, I finally had my real intake. And 2-3 weeks later, I was finally told that I am now officially diagnosed with ADD, repeating depression (my apologies, not aware of the English term, for the Dutchies: herhalende depressie), and still Asperger's syndrome.
I felt a huge relief, at last knowing for sure where some of my problems come from, as I often feel like a puppet who can see his strings... But seeing the strings doesn't mean you're in control of them.

So we set up a huge amount of appointments right away, and I could start with meds (Concerta) a week later, together with a group of people who started meds at the same time as me, and with which I had weekly meetings for about 4 weeks to share our experiences.
I started with 36mg per day, and the first day was absolutely amazing. I had so much motivation that I did every menial task I couldn't force myself to do before (cleaning my house, financial administration, etc). The rebound later that evening was pretty harsh however, but if that was the price I had to pay for a life more comparable to that of a neuro-typical person (on the subject of motivation that is), I would gladly pay it.

...I had slept very well that night, impressed with the results (even though I was well aware of the euphoria effect) and with a little help from 5mg melatonine, which I was also prescribed.
Sadly, after taking the meds again, to put it in the words of Edward Morra in the movie Limitless: "I sent a little probe down into my brain... No surge of brilliance came up to greet me. In short, I was back.".
I did feel the physical effects (akin to an adrenaline rush, very cold hands and feet, and a few other things), but no motivation whatsoever.
So my dose got increased to 56mg the next week, no result. 72mg the week thereafter, and still on that.

I know it has some effect, but find myself unable to analyze exactly what. For example I'm noticing that my hyperfocus switches on a lot more, of which I am not certain if it is positive or negative as I haven't been able to test it on 'useful' things (like studying) yet.
I find myself 'researching' the most random subjects into great detail, from Japanese to quantum mechanics, and write huge pieces of texts (just look at this one).

Anyway, about 2 weeks after first starting the meds, a friend of me took his own life. As you can imagine this resulted in a lot of stress for me, mainly because at moments like this I automatically switch off everything that is not useful (emotions, social behaviour, hunger, thirst, etc) to me. My main priority was taking care of my friends who also knew him very well, and because my entire being was now focussed at just that, I could do it at full speed and maximum efficiency.
If it was really needed is not the point, and I know that it isn't very healthy either, but people I really care about take priority over everything for me.

That, together with having to organize a new study and having to adapt to a new girlfriend, meant stress on an explosive level. And stress like that equals a lot of migraine attacks for me (think 3-4 times a week).
And when I'm in the middle of a migraine attack I am incapable of anything, and usually very confused.

And as my migraine obviously doesn't know my schedule, it also happened several times when I had appointments with PsyQ.
Even though that department is specifically aimed at ADDers and ADHDers, they have a strict no-show policy. Don't show up twice without having called 24 hours before the appointment, and you're in big trouble.
My personal coach informed me that I was up for discussion, but also mentioned there was a good chance I would be allowed to continue due to my special case.

Sadly, a week later she called me again with bad news. I was not allowed to continue. She also explained why; The top-brass (the people who aren't in contact with any clients) deal with about 20 cases of no-shows each day, and only in half an hour time. She told me she really tried to defend me (and I trust her), but their argument was "If he has so much migraines now, what keeps him from having those if we allow him to continue?".

I had one more appointment to finalize a few things like the continuation of medication. I desperately wanted to try dextro-amphetamine, as the Concerta (methylfenidate) didn't work as well as it should on me. Not to mention that it's a lot cheaper than Concerta, which costs me €85,- each month.
The woman I had the last appointment with however, told me that if Concerta didn't work, Dexamph wouldn't either. I explained to her why it would, and that I have done a huge amount of research into ADD and the medication, and even mentioned this website to her ("Yeah... But... You know, that's internet, lots of people who aren't professionals, etc").

So now I'm stuck with at least 3 months of Concerta (which I admittedly do prefer over nothing). They did send a letter to my doctor so he could write new recipes, but also warned me he probably couldn't change it to Dexamph.
I was advised to sign up for PsyQ again (have to wait 3 months before I'm allowed to do so) if I want to try another med. Sigh.


Just wanted to share this story, curious what the thoughts of this community are.
I'd also like to mention that it might seem as if migraine's the reason the treatment stopped but I think it really is ADD, as I believe that's the reason I don't recognize certain emotions (fear, nervousness, etc) and signals from my body (stress, hunger, thirst, etc) very well and thus don't act accordingly, instead resulting in migraine.


Thank you for any time spent reading this 1:1 scale recreation of the Great Wall of China in letters, and any replies!

[ADHDTigger]

(((hugs))) hon.

Changing medication while grieving is generally a bad plan. Grief does a number on your executive functioning, often in similar ways that ADHD does. I know that when my husband died, I complained to my doc that Ritalin wasn't working for me. He suggested that I try not taking it for a day or two. What I discovered was that it was working just fine, it just wasn't doing anything for the grief.

The reason that some people can take an immediate release medication more successfully than a time release is often due to the extra stuff that makes a med into a time release. A standard methylphenidate might be perfect for you even if Concerta isn't. The person who told you that dexamp wouldn't work for you is not well informed about ADHD medications, period. I personally don't do nearly as well on Adderall but am good on Ritalin.

At least you can apply again in 90 days. I had to quit seeing my pdoc over a similar issue- missed too many appointments when my husband was diagnosed with cancer and his appointments conflicted with mine. Fortunately, I was able to get my GP to take over medication management after a few months.

Hang in there, hon.

I also forget to eat. A reminder helps...

(((hugs)))

[AddaptAbilities]

Originally Posted by Mr. Gerbz

Strange title, don't you think? I mean, why wouldn't I be treated for ADD, because I have ADD?

Just wanted to share this story, curious what the thoughts of this community are.
I'd also like to mention that it might seem as if migraine's the reason the treatment stopped but I think it really is ADD, as I believe that's the reason I don't recognize certain emotions (fear, nervousness, etc) and signals from my body (stress, hunger, thirst, etc) very well and thus don't act accordingly, instead resulting in migraine.


Thank you for any time spent reading this 1:1 scale recreation of the Great Wall of China in letters, and any replies!

I'm so sorry to hear about your friend. I lost a good friend to leukemia nearly five years ago, and it was devastating. I can only imagine the pain that accompanies a suicide. *hugs*

I also share your incredible frustration with the psych department. You'd think that of all people they'd have some understanding of grief and bereavement! The most functional neurotypical couldn't be expected to function normally after suffering such a loss. How can that be expected of anyone, let alone someone with ADHD and a history of depression?

I haven't read widely about migraines, but I do know that there are triggers, and that patients can be taught to recognize these. Patients with ADD, of course, have extra difficulty learning to be aware of triggers and symptoms (it requires *paying attention* after all), but I can easily imagine the right medication making this easier for you.

Again, my sympathies for your loss. Hang in there.

[Mr. Gerbz]

Thanks for the support guys, I really appreciate it

To be honest, I do understand PsyQ in a way. I mean, they're a business and they need to earn money too, so why waste time on someone who isn't sure to show up, instead of removing them and giving that spot to someone who is more likely to show up?
It'd be dishonest of me if I said I'd do it differently in their position.

That doesn't change the fact that I still find it a strange policy, especially for the department that's specialized in ADD and ADHD.
Not to mention, they advised me to reapply again... Why? I mean, my migraines really won't stop all of a sudden, so instead of giving that advice they could've just let me continue right?

[ADHDTigger]

Originally Posted by Mr. Gerbz

Not to mention, they advised me to reapply again... Why? I mean, my migraines really won't stop all of a sudden, so instead of giving that advice they could've just let me continue right?

Not really.

They have the policy and have to enforce it even when the variance is reasonable- as in your case. They recognize that the variance is reasonable but can't suddenly change up the policy.

On the plus side, when you reapply the process should be easier.

Are there any alternatives? I'm not familiar with how the Netherlands view/manage ADHD.

[Etcetera]

Meh, the assistant of my psychiatrist calls all the people that are scheduled for the next day, just so they wouldn't forget. When you're providing mental healthcare, you should act correspondingly and stop thinking like a business. Just my 2c.

Either how, I'm sorry to hear about your loss. It is true that this may have also had an effect on how your medication works. Would going to a regular psychiatrist work? I asked around, started at the CGGZ (this is Belgium, Centrum Geestelijke GezondheidsZorg, I reckon you have something similar?) and they told me to get into contact with a psychologist/psychiatrist team, of which I'm happy. They're specialized in diagnosing and treating ADHD and issues a lot of us ADHD'er can have (substance abuse/addiction, low self esteem, anxiety) and I feel as if their approach would be more "personal" than PsyQ; which is logical even.

Also, exclusing someone after a situation like this is, no matter the rules they put in place, a bit of a... weird situation. I agree, they have to have rules and the whatnot, but they are treating people with ADHD. For the same reason, the day prior to my appointment, I get a phone call. Because they treat people with mental issues.

Maybe I'm just being a bit of an idealist here, but the least you could expect of a therapy, is that it doesn't punish you for the behavior that comes natural to your condition.