now the drugs don't work / they just make you worse (or do they?)

Be warned, this is a long post and it get's a bit complicated about ADHD treatments and medications. I try to explain as best as I can and simply share my experience with the drugs.

Oh man, these past few weeks have put me through the wringer!
It's been 1.5 years since my ADHD diagnosis, a little less since I started medication.
Remember Charlie? You know, my elephant? He went away, thank fuck. But then the Strattera made me motion sick, like, all the time and I threw up into a public trashcan two days before Christmas. Goodbye Strattera, back to Ritalin - long acting this time, called Concerta. I take the tab in the morning and it releases amounts of MPH into my bloodstream throughout the day. Peachy.

Basically, since the beginning of 2012 my life has mostly been awesome thanks to Concerta. I thought I had it all figured out by now, would simply pop 18mg of Concerta every morning and go about my life.  Until it started to be less effective. I didn't notice it at first but in retrospect it started to wane when I started working and leading a more active life, having longer days, in August/September 2012. Then the anxiety started. Then I noticed. Oh boy, did I notice, about 1-2 months ago.

I can't really tell because it snuck up. At first I thought: "Oh I'm just having some rebound issues in the evening" and I'd pop a booster Ritalin and be fine. Then it turned into a sort of constant reboundish feeling, then into a tenseness that I can only describe as ongoing anxiety. MPH can exacerbate anxiety but you see, I never had anxiety. Yes, I'm a worry wart but that's not anxiety - I don't usually grit my teeth, clench my jaw and contract what feels like ALL THE MUSCLES in my body ALL THE TIME.

This is how I feel inside recently. W00t! Anxiety!

This is how it makes me look on the outside.

When my full blown ADHD symptoms came back it became obvious that something wasn't working. I saw my doctor and tried a couple of things. Still am trying, in fact.

The major problem with ADHD is that it's such a volatile thing because they still haven't figured out the exact brain science behind it. There is no physical sign in the human brain for it but it's not just a psychological thing either because it has to do with dopamine levels. And dopamine is tricky. One medication will help one person but not another. Sometimes it stops working. Sometimes the body adjust and the dosage needs to be raised. Sometimes the body adjusts so much that the medication loses effect completely.

For some people stimulants (Amphetamine, Methylphenidate) work. Others can use non-stimulant medication (i.e. Strattera). Not all drugs are licensed in all countries. Canadians and Americans have more options. For instance in Europe Vyvanse (Lisdexamfetamine) still isn't available.

Exercise and diet have some form of impact on ADHD (medication) as well but it's an ongoing debate as to how much exactly. Some claim supplements can help - omega fatty acids, glutamine, vitamins (I've been taking high amounts of Omega-3 and Omega-6 for a while now). ADHD is generally poorly researched in adults because for a long time it was believed to cease in adulthood.

With all this going on it is no small wonder a lot of ADHDers opt to ditch the meds and to continue muddling through.

Experiment 1: The Med Holiday
I didn't take my meds for four days to reboot my system, basically. It went somewhat like this:

INT. COFFEE SHOP - DAY
Andie is sitting in a comfy chair, laptop open. Her friends has just left.

ANDIE (V.O.)

I want to get some work done like I usually do. Oh hai, looksie, there are people talking. What are they talking about? It sounds interesting. I'll just listen a bit. Oh wait, I wanted to work.

Andie opens her browser, mail client, twitter.

ANDIE (CONT.)

Oh look! Someone posted a video to twitter. Funny! Oh hai YouTube, you have more videos for me? Awesome! Oh people! Talking! Listen. Do I know her? She seems familiar. I could ask her if she's that girl I think she is. But what if that's weird? Also: I have work to do. She sounds like her too. I'll just ask her. Oh crap that was awkward. But at least now I know that I know her. Why does it help me to know that I know her? I think my pulse is really high. Is my pulse really high? I should get out of here, like, stat. Get home, calm down. Maybe going cold turkey is a bit crap.

After four days off of medication Andie has calmed down. All her ADHD symptoms are back but the anxiety is gone. She's also super sluggish and depressed and feels like she's not getting anything done. A lot of WoW is played during those days. All the food is eaten. Sleep is apparently overrated.

Experiment 2: Going Back on the Old Dosage - Monday 

After successfully having rebooted my system I started back on the 18 mg of Concerta. This proves a useful method for most people so it was worth a try.

Monday and Tuesday went pretty well. Uneventful.

On Wednesday I had some rebound and took a Ritalin booster in the evening.

Thursday I was PMS-ing like hell which always means less effect of medication.

Friday my period came in the morning and major anxiety struck in the afternoon, I supplemented with a booster and calmed down somewhat. It had become obvious that 18mg wasn't going to do it. Which led to...

Experiment 3: Double the Dosage

(No, I didn't do this without my doctor's consent.)

On Saturday I took two Concerta tablets in the morning putting me on a 36 mg dose. Around mid morning all hell broke loose. If you follow me on twitter, you'll have noticed some of the shit that went down during that time. I was home alone and I had to talk to someone, no matter what came back because I was having all the fucking issues!

I was hyper alert but in a useless, tunnel kind of way. I felt like I was coddled in cotton balls and locked behind a big ass sheet of security glass. I was crying uncontrollably. My skin was crawling, my hands were sweaty, my muscles tense. It was horrific. It finally started wearing off around mid afternoon so I forced myself to go and meet my friends at the cinema in the evening like we had planned. And even though it scared me I took 5 mg of Ritalin to prevent a rebound effect coming off that massive dose of Concerta. It helped with the ADHD symptoms but my body was tense and hurting from the day's ordeal and still chock full of anxiety. I went to bed at 9 pm. Slept like a baby because I was so exhausted.

Experiment 4: New Order - Sunday

I took 5mg of Ritalin booster in the morning followed by 18mg of Concerta. Better than the fucking disaster the day before but not controlling my ADHD at all. The night brought on Insomnia like back in the day. I capitalise Insomnia because that's how it makes me feel. I'm on a first name basis with it so I think it's fitting. Unsurprisingly, I hadn't really missed my old fiend much in the past year but Insomnia doesn't care whether I want it. There it was, putting me smack in the middle of tired-but-not-being-able-to-fall-asleep territory, right next to waking-up-every-couple-of-hours-to-pee and gritting-my-teeth. When my alarm went off at 5:45 I got up in a daze and got ready for work, even hurrying to fix breakfast - only to discover that the idea of eating made me nauseous.

Experiment 5: Titrating

Even knackered as I was that Monday morning (= yesterday) I worked out that going from 18mg to 36mg, doctor-approved or not, was a seriously dumb move and that I'd need to titrate just like I did when I first started taking MPH. Enter my good old Ritalin:

6 a.m. - 3/4 of a tab in the morning putting me at about 7-8mg instead of the usual 5mg

8:39 a.m. - fearing rebound effect I took another 3/4 tab at work. As it turns out that was a bit too early (3-4 hours would've been preferable in retrospect). Within 20 minutes I felt like I assume people on Valium feel. I was so fucking slow it was comical! Sometimes people were already halfway past me when I finally managed a "Good Morning." Sometimes I couldn't manage to utter the words that I wanted to say. I stayed calm (haha!), figure it would wear off - and it did.

1:30 p.m. (I think) - I waited until I was certain the double effect had worn off until taking the next 3/4 tab and it worked fine. I went to see my doctor after work and worked out some plans with him (Yay! New Experiments! Sigh.)

6 p.m. - another 3/4 tab. slight comedown around 10 pm but compared to the past weeks it was NBD. As in actually warranting the acronym instead of spelling it out - that's how No Big Deal it was, surprisingly. And Insomnia didn't even show up at night. Aw bless, a good night's sleep! 

Experiment 6: Mix and Match

Since apparently the higher dosage was working well for me - if titrated - we decided to put me on a combination of my 18mg Concerta and my Ritalin so I could raise the dosage carefully. Doc also prescribed me a different product, called Medikinet Retard, which releases MPH during the day like Concerta does but instead of a steady stream it releases in two doses set a couple of hours apart. The idea is that I try a couple of combinations

• Concerta + Ritalin throughout the day
• Concerta twice a day
• Concerta in the morning / Medikinet Retard mid-day OR the other way around
• Medikinet Retard twice daily / possibly double dosage or supplemented with Ritalin

Complicated much? Ya think? ;)

I tried the Concerta + Ritalin thing today and while I was on the same amount of MPH as I was with just the Ritalin yesterday I'm A BALL OF ANXIETY today. It's no fun. And it's not fucking relenting. So by now I assume that somehow, for some weird fucking inexplicable reason, it's the Concerta I'm not handling well anymore. It worked fine until a couple of months ago. Now not so much. It makes no sense. Not to me, not to science. But it seems to me that I'm just going to have to accept the illogical and go with it. I've decided to stay away from Concerta for now. I haven't bought the product again although I do have a prescription.

I did get the Medikinet Retard and I've ordered the same brand's equivalent to Ritalin, because the Ritalin has wheat and the Medikinet doesn't (and in my case that's what stands between me and a morning spent on the loo, having the shits). So tomorrow I'll give the Medikinet a try and pray to the whatever higher power there is that it fucking works and that it isn't going to give me anxiety.

For tonight there's not much that I can do except wait for my body to unclench and distract myself, like I did with this blog post, and hope for a halfway decent night of sleep. If you made it this far (THANK YOU FOR READING!) I think you deserve a good night's sleep as well. Or at least some music:

* For clarification:

Ritalin releases MPH (methylphenidate) instantly

Medikinet release MPH instantly like Ritalin (but it's wheat-free)

Concerta releases MPH over time

Medikinet Retard releases MPH over time though not in a constant stream like Concerta but in two major releases 

and suddenly everything makes sense

I've had a revelatory moment. The type where the lightbulb comes on over your head. Or when a choir of supposed angels sings a loud and ethereal "naaaaaaaaa!" to the image of you throwing your arms up over your head and gazing skywards with happy tears glistening in the corners of your eyes. A moment of "Eureka!" if you will.

Because two days ago someone cautiously mentioned four little letters to me and that person was a psychiatrist. My new psychiatrist. Who took a lot of time asking me a lot of questions, being generally very nice and seemingly professional. So after about an hour of asking me shit no one ever thought to ask me before he almost whispered (presumably so as not to shock me) those four little letters: ADHD. And it was like someone had finally given me the decoder sheet for my life that shifted everything into a new, much more sense-making position.

The rest of our conversation consisted mostly of me asking things like "So, the fact that I have to concentrate really hard right now to not drift, there's a reason for that?" and him smiling benignly and nodding yes. Years ago I had amateurishly considered ADHD, and even asked my parents whether they ever had me examined in that regard, especially since I was always told how fidgety I had been as a child. But they said they hadn't and not to be stupid and somehow I ended up dropping it. It didn't strike me as very serious especially since back then I mostly exhibited hyperactivity symptoms* - I still fidgeted a lot etc. - but was becoming calmer, and attributed it to the fact that I was leaving puberty behind.

But in the last couple of years other symptoms have been showing up. I grew more impatient, more erratic, more easily distracted, depression and burn out apparently bringing out the worst in me. Finn was getting really annoyed with me because she felt I didn't listen to her, when in all honesty I just felt that it took her way to long to get to the point - she wasn't to blame, I just didn't have the patience for it. And while I was really trying to listen to her my mind went off on tangent after tangent, I was trying hard not to look at anything so I wouldn't get distracted by nearby objects and the following thoughts and ideas.

I get that this is really annoying for her, but I don't actually mean to do that. I actually can't help that my mind sometimes feels like a highway with a myriad of lanes where everything seems to happen at the same time. But now I finally understand why.

I understand
- why I'm such a non sequitur person
- why I have a hard time listening to people who are talking slowly, for lengthy periods of time or saying things that don't interest me enough
- why I struggled so much with the reading I had to do for my thesis
- why I the structure of a University of Applied Sciences worked slightly better for me than regular University
- why I was a very impatient and fidgety kid that never could sit still
- why I have sleeping problems
- why I talk waaaay to much and way too fast for most people
- why I keep misplacing things and forgetting why I just walked into the kitchen or find myself walking around the flat still clutching that packet of sugar for my coffee
- why I could never get organised or grasp the basics of time management and no matter how hard I try chaos takes over soon enough after an attempt at organisation
- why I sometimes lose time doing something I enjoy
- why I almost never finish anything because something else catches my fancy, be it short term or long term things
- why I have such a hard time finishing my writing and have shitloads of half thought out ideas lying around but so few works that are actually done and edited and revised. Hell, I never even reread my exam essays in school because once written I found my own words way too boring to go over them again. I'm lucky that I'm very good at grammar and spelling so I got most of right the first time and editing wasn't necessary for getting good grades in language classes.

But all that is probably just a tiny fraction of my behaviour which has recently become obvious to me.

For example, I always wondered why people kept insisting that coffee was such an immense stimulant, and "Woah, are you sure you want to drink that coffee now? Because it's 7 p.m.!" Coffee always seemed to calm me down. In fact I've developed a habit of drinking coffee when I sit down to write but I'd assumed that was just a habit, a bad habit, a ritual. But I sleep like a baby when I drink a cup of tea in bed while reading at night. Well, it turns out I'm not alone. To ADHD people this makes impeccable sense. It raises our dopamine levels and we have an easier time focusing on one task instead of getting distracted by something shiny. I know that now.

So far, coffee is the only "medication" I'm using, at least for the ADHD. I'm still taking my antidepressants because they seem to be working well with the tiny amounts that I'm currently taking. And in October I'll be back at the doctor's and we'll do a test. Although he said he has pretty much diagnosed me but if I'm interested we can do the quiz. And then we'll talk medication. It seems like there are a ton of options - different kinds of meds, not just Ritalin, and different methods of taking them etc. What is helping me most at the moment is that I have stopped beating myself up about certain things. I still strive to be better and function as well as possible but at least I'm not dissing myself anymore when the Scatterbrain does show up. Take today, for instance:

I woke up and, still in bed, read my emails on my Galaxy tab. My fanfic had gotten a review that among other things proposed I insert more paragraph breaks to make it more readable. Driven by really wanting to do that so that many more people would be able to properly enjoy my story I managed to brush my teeth and take my meds and chinese herbs. I set out a cup for my morning tea and put the electric kettle on and then went to turn on my computer and start editing my story. At 1 pm I wondered where the hell time had gone and I realised that I was really fucking hungry. A further 20 minutes later I finally did get up and went back into the kitchen to find a rather lukewarm kettle and an empty cup. My second attempt at tea was more successful. I carried my breakfast into the living room and turned on a movie to watch while eating. After I'd put the food away I settled down on the couch, still watching the movie, but my attention drifted to the interwebs in all its glory. Merlin knows what I was doing, I can't even remember. Somehow the movie had ended and I was reading fanfiction. I remembered the fanfic I had been reading last night and went to get my Galaxy Tab from the bedroom. But the bed looked cozy so I curled up under the blanket to finish reading the fanfic. Once done I remembered I had wanted to write this blogpost but on my way to the living room I realised I was still in my pyjamas and probably should have a shower before Finn's imminent return home (by that time it was almost 6 o'clock). Post shower I finally made back it to my computer which was still sitting innocently on the couch and now I'm writing this but I have several tabs open in my browser because I had a couple of errant ideas that streaked past me. And I tweeted, and facebooked, and probably did some other stuff but I tried very hard to concentrate on this. Sure, it got done in the end but the fact is that I wanted to write this blog post this morning and it's now 8 o'clock in the evening.

Now, can you imagine what it's like in my brain?
Only two days ago a day like this would've driven me absolutely bonkers. The feeling that I'd gotten nothing done. The lack of control over my life and myself. The big fat "why" hanging over it all. Now that I actually know why I don't beat myself up over it. I can laugh about it. And I will hopefully learn to somewhat counteract it if I have something important that actually needs to get done in a time sensitive manner. I can learn to live with ADHD, take all that imagination and creativity and focus it. And it will be glorious when I finally do :)

But for the foreseeable future: If you meet me in real life and it looks like I might drift forgive me. And talk faster ;)


* I didn't know back then that my liability to inappropriate comments and unfiltered talking was also a symptom of impulsivity and thus of ADHD.

"So, have you taken cocaine?" "Sorry...what??"

I did more today in three hours than I did the past couple of weeks. Not by choice though, and I didn't particularly enjoy my doctors' odyssey either. I had an appointment at 8 a.m. with a psychiatrist nearby. Since I'm currently on sick leave my family doctor sent me there for an official diagnosis. I'd heard a bunch about psychiatrists before but now that I've had the personal experience I definitely have to admit: other people were right; all of them.

It's inconceivable to me that someone can make a diagnosis about the psychological state of a person all thanks to a 15 minute Q&A. Which is exactly what psychiatrists do. Honestly, I felt like I was smack in the middle of that Ellen DeGeneres joke: "Are you sad? Do you get stressed?" (from her Stand Up Here and Now). It went something like this (parts of it are simply left out here):

Q: So what seems to be the problem?
A: Well, I'm in therapy for burn-out. I was a bit stressed before, but it all kinda culminated when my father died and I got married two months later. So I quit my job and now I'm... well, here.

Q: Well, what are your symptoms?
A: Uh... I guess exhaustion. Getting out of bed is a fucking feat these days.

Q: Sleeping problems?
A: Always had those. But really, it's more exhaustion less sleepyness that is my issue. And I've started to smoke again.
Q: By smoking do you mean cigarettes or marijuana?
A: Ah, cigarettes. I don't like marijuana, it makes people slow, not a fan of that.
Q: What about cocaine? Have you used cocaine?
A: Uh... No! (What the hell is wrong with you??)

Q: Do you self-mutilate?
A: Uh... No.

Q: What other symptoms?
A: I've been crying a lot, eating a bit too much.
Psych types on computer and mumbles "eating binges"
A: What? No, I don't have a fucking eating disorder???

....

Q: Now, how long do you think you need? What are the next steps?
A: Uh.... Gee, if I had a manual for this that tells me what I'll need and how long, I probably wouldn't be sitting here in your office, now would I?

Long story short, she says I don't have burn out but a so-called adjustment disorder, but I really don't care what they call it. And the asshole of a doctor at the insurance (where I went afterwards) tells me that I need to be on meds for sick leave to be justified. Yeah, right? because I want to pump myself full of antidepressants that will make me think that I'm fine and stop therapy. "Psychotherapy is not grounds for extended sick leave", she says. I tried to explain to her real slow that therapy is not my ailment but the treatment for my adjustment disorder, which actually is the ailment. I really tried not to roll my eyes or headdesk right there and then, but I sure felt like it, because, no, she really doesn't have the competence to put me on prolongued sick leave for psychotherapy (headdesk headdesk facepalm). No duh, you have no competence, I thought. So instead of the 8 weeks the psychiatrist suggested I got 4 days sick leave. Which basically means I have to go see a doctor who's higher up  in the insurance-bureaucracy (with city-wide responsibility instead of just district-wide) and hope he has a better grasp of mental health issues.... the misconceptions really are unbelievable...