for those being treated for at least a decade or two, who've tried a number of things

[peripatetic]

so i made the title because i'm really only interested in hearing from people who've been long term trying to find a way to reduce the sheer number of times you ahve to take pills/capsules/combo daily.

i'm ******* tired already. i feel like i've been funneling meds for the last twenty years. oh...right...because i have been

back in my teens/twenties i tried a ton of things to try and get a longer-acting solution with comparable efficacy to the ritalin/dex combo that's been my mainstay.

i've only had two "bad reactions" (adderall made me feel dirty and imipramine made me psychotic...literally). mostly i've tried this or that, or extended release of all sorts of ****...and it's just **** poor on symptom control or ends up not really reducing the number of pills/caps or number of times daily.

it ******* sucks. i'm in california so i get 100 days at a time...and i'm ******* tired of picking up a grocery bag of bottles every three months. i'm also really bad with medication compliance because it's just a lot. i'm supposed to take pills every two hours...plus TID with meals. it's ******* extremely difficult to deal with on a daily basis. for decades.

that said...i've not guinea pigged myself for a looooong time...because i always ended up back with the ritalin IR/dex spansule combo (thank pharma at least one can be an extended release). but it's stlll just ******* obnoxious.

i have a really high metabolism and i'm just fearful that ...well...i hold out little hope of finding a more manageable solution given history...but then...i'm nervous about trying to find a better solution because what if i go off and then must return (again) and it's less effective? medication resistance scares the living **** out of me.

anyway...i've finally relented and just filled a desoxyn prescription today. i still have to titrate up,so won't really konw for a couple of weeks or so...but if thisdoesn't work...i'm back to funneling meds all ******* day long, and failing here and there because life happens and taking pills every two hours is a lot more cumbersome than people mightimagine...especially when it's not just for, like...i mean, i can imagine someonejuststarting out thinking no biggie. talk to me in twenty years. it's a ******* hassle and a half.

i konw there's at least one other person out there in my boat (because we've discussed it)...are there more? has anyonewho's really been actively treated for multiple decades found anything to ease the hell of taking so many doses?

i don't want to be too limiting as i fear there'll be nobody by one replying...but it'd be most helpul to me to hear from people who've been diagnosed for a long time...not necessarily as kids...but...diagnosed for multiple decades, who've had this same irritation and made multiple attempts to reduce doses, and prolly people who are combined type as my h/i symptoms are a real ***** and that's what the ritalin gets at that nothing else ever comparably has...so far.

cheers

[peripatetic]

oh...and it occurs to me that anyone who is in this boat might be curious what all i've tried. the list is deflating to make...but suffice it to say i've tried everything at this point save focal in, daytrana (i sooooo want to...but adhesives...gross overall...on my person...no ******* way), wellbutrin (after the imipramine "incident" i've got a no antidepressants ever in my chart), clonidine, and some newer stuff...like...intuitiv...i've not tried brand concerta as that's relatively new... oh! and no cylert....pemoline's been outof use for ages due to liver issues...though frankly, if it were available...i would've, i'm sure. it's THAT much of a problem.

i also never tried adderall xr due to the levo **** in the ir not sitting well with me.

[silivrentoliel]

I was diagnosed at 6, so I'm going on two and a half decades, but a lot of that time wasn't medicated... self medicating, yes, actual meds that work, no.

I started out on the old school Ritalin from the 80s, and at one point was taking 120mg broken up into two doses a day.... and I was maybe like 10 or 11?

Upon a 'rediagnosis' (due to an ultimatum of "fix you!" from DH) I began taking Concerta, which soon needed a Ritalin IR boost in the afternoons. That lasted maybe a year? (the boost only lasting about 6mos) before it began putting me to sleep... which was not good.

Just started Vyvanse, so we'll see how it goes ^_^ so far, it wakes me up! That's a plus. The rebound is less noticeable too unless I'm trying to read

[peripatetic]

spanks for posting, S

yeah...i was on the ritalin/dex combo for maybe a year or so...(i'm ******* ****e with estimating time...but i do know when i really started treatment in earnest and will do my best)

oh...diagnosed first thirty years ago (yay for that anniversary )...but didn't start treatment until adolescence due to this and that, blah blah blah.

anyway...so started on ritalin...went through more neuropsych testing...added dex...was good for a year plus. started becoming increasingly frustrated with the volume of doses per day, etc...tried switching to extended release ritalin...of a few types...then back to IR ritalin/ER dex...then tried adderall solo...back to combo...then metadate, i think...i'd have to look at psych record to be absolutely sure on which when for how long...then increased dex solo...then back...then the disastrous imipramine...HOLY ****...then ritalin alone...then back...took a few more stabs...

then back to combo being prescribed, which happened for the past twenty years, approximately. but i've been really spotting for phases in there...and it's been catastrophic when that happens. i've also gone for spells of just being like...**** taking both...i'll just refill ritalin since that's my primary...

etc, etc, etc

the bottom line is i've been one this dosage (which also, is really ******* high compared to most of what i read here) for a couple of decades and the thought of spending the next couple in same situation is compelling me to give the desoxyn a shot...which i've held out on for a few years...but...enough is enough.

anyway...that's my story. x

EDIT: oh, neglected to mention: the experimental phases were a few years in there...so...did try each thoroughly ...sufficiently to know they didn't work. i've had lots of neuropsych stuff to assess difference between baseline and this or that med/combo, as well.

[silivrentoliel]

I've never had much extensive testing done... did have a child psychiatrist as a kid who was AWESOME and still remembers me from like 14 years ago! I was shocked at that... I called her to ask her if she still had my files... she didn't but remembered who I was and could pretty much recall my diagnosis.

Going to her was SO MUCH FUN though... I got to play with tons of toys, all different kinds, and eat cookies. It rocked. I wish I had a doctor like that now... I'd love to sit and play with toys and eat cookies rather than have my head shrunk by a weirdo who 'thinks' he knows me coz I'm a woman when really he's so far off base it makes me wonder if he was actually listening or just off in la-la land...

but I digress.

I don't think you're old enough to have been diagnosed 30 years ago.... lol, you "sound" like someone my age, and that would make you like a year old back then

Of course, I also didn't know pooka was a teenager

I'm currently in the middle of massive swirly thoughts and a really sleepy body, so rather than rambling and leaving my awful typos for everyone to have to sift through... I'm going to bow out gracefully for the evening.

[ana futura]

I'm the least qualified person to answer this but-- You should try the focalin. It is dramatically more potent than ritalin. the levomethylphenidate in the ritalin really does get in the way of the dexmethylphenidate.

At the right dose (1.25 mg for me!) it's very calming to me but my brain's still sharp. I decided I like dex better, because I don't actually need or want to be as calm as the mph family makes me. Also, I found focalin made me edgy, but as our tolerances are dramatically different you may not find this to be the case.

For comparison's sake I can take 10mg of ritalin fine, 2.5 mg of focalin seems like almost too much. They are similar, yet completely different. Some of the sedating/ anxiety reducing aspects of ritalin are there, but there's also a mental clarity that's not there on ritalin.

[peripatetic]

oh holy ****, S...I'm thirty-eight.

seriously.

that whole thirty percent rule...yeah...make that forty to fifty percent in my case

sad to say, I'm not "better" in person. people who've talked to me on the phone...say, not content necessarily, but voice/tone/etc...some have said I sound "teenagey"... stay classy, me. everyone says I sound at least ten years younger though. what's worse? in person...I also look at least ten years younger. not ideal when I'm a spazz and have no "proof" of maturity.

I'm starting to get grey hairs here and there and couldn't be more delighted at prospect that one day I'll be judged "adult" prima facie. dare to dream

[ana futura]

Originally Posted by peripatetic

I'm starting to get grey hairs here and there and couldn't be more delighted at prospect that one day I'll be judged "adult" prima facie. dare to dream

Me too! I can't wait for the day I no longer get carded. AND the day that people stop insisting that I should be flattered that I still get carded. It's so demeaning to look at the little sign that says "If you're under the age of thirty present your ID" and then I tell the cashier that I don't have to present my ID as I'm well over thirty, and then they just glare at me. Change your flipping sign to say over 40 then!

[peripatetic]

ana, how long did focalin last per dose? and what's the number of pills per day here? do you have a really high metabolism? because that's what ****s me. that and the degree of symptom severity such that I have had to take every two hours just to deal with one half of my symptoms.

focalin, if the "average" is x...for most meds I've tried, you can cut that x in half for me.

the other thing is that methylphenidate preparations, though, yes, I know focalin is ...what's the word? the isomer is two sided.

anyway, those meds have always been what makes a sent in my h/I symptoms. but I still need the ancillary dex for in inattentive half. my concern with trying focalin is twofold:

1. it might only treat half my symptoms
2. if it's not got a significantly linger half-life/concentration/efficacy range than methylphenidate...that's of no use.

I'm trying not just to maybe have better sumoton control--though really I've given up on that for the mist part at this point. I'm starting ao far in the hole that my best case scenario just isn't going to be ...I'm not going to get better control most likely.

what I want is to take fewer doses throughout the day. I've resigned self to fact it's unlikely I'll ever have a one shot deal, but I'm tired. if I could do three times a day: halle****ingluyah! because heretofore, it's a minimum of six times a day...IF I am able to match up Ritalin and dex schedule, which, yeah...should prolly be a no brained or whatever, but simply isn't in my world/my actual life just doesn't always work neatly enough. ao sometimes, it's nine times. and that's (there are other things that being it about, yes) but that number of doses contributes often to my Ned non compliance. because I get, like, **** it!

it's frustrating.

I hope that makes sense.

anyway, I'll not try focalin just now as I'm giving the desoxyn a sufficient shot and literally just started today and still need to titrate, etc.

[peripatetic]

oh, and s...i need to read your wholepost and reply...which i will at some point x

[ana futura]

Focalin is much better for innattention issues than ritalin is, but it still has a lot of the mph "feel". You might find that it feels something like the dex + ritalin combo. The only thing I think you'd miss is that supposedly levomethylphenidate has some anti-depressant qualities.

I don't think you can judge by me, I'm still a total newbie. I do seem to metabolize the meds quickly, but I also have a very low tolerance. Before I stopped drinking coffee my meds kept cutting out and was getting these huge noticeable rebounds (especially on dex) I had to keep taking small doses of dex over and over to keep the rebound away. This seems to have gotten better without caffeine, so I guess the caffeine was maybe making me metabolize them too fast? This is a new development, so we'll see how long this lasts. I don't really remember how long focalin lasted, I was only ever on the IR, but I think it lasted longer than the dex IR.

The potency issue for me is that I get overfocused/ zombiefied very easily, on almost anything. While focalin seemed too potent to me, I never got the zombies on it, no matter what dose.

Also, have you considered vyvanse? You might be a good canditate for it. For me it lasted way too long- 14-16 hours+ It seems like it's really short for some people and really long for other people.

I hope the desoxyn works out for you!

[peripatetic]

hmm...vyvanse...the duration possibility is attractive, for sure...if it's effective for me at all.

if this doesn't work...i might consider trying it.

but i'm also..............i don't know if i have it in me ...if i end up back on the combo...and it works at same level of efficacy...every time i've tried to switch and gone back...i run the risk of reduced efficacy. as i said above...medication resistance scares the living **** out of me. i've seen that point of no return happen for people. dramatically. not with adhd meds per se...but i know it's a risk. all the switching can **** you in the end.

i hope the new plan works. so desperately.

all that makes it sound like, why the hell did you start this thread?

i'm hoping there're people out there who have been in this boat and tried at least a handful of things searching and, ultimately, found something to take far less frequently...that really is as effective. maybe to keep my "hopes up"... and if none exist...then maybe some who feel as ****** and frustrated and jsut spent and tired of taking so often and can commiserate...not typically a misery loves company sort...but then sometimes reading threads here that're like...i just got diagnosed yesterday (within few years,i mean) and take a twice a day deal that does wonders and i'm overall functional with that scene...it's ******* demoralizing.

yeah....some hope and maybe others who can relate either way...that'd be swell.

[Twiggy]

I've just read about how Celexa(citalopram) can raise dopamine levels when co-administered with Ritalin (methylphenidate), a lot more than Ritalin alone.

That sounds really interesting and might help. I'm even tempted to try it now.

[peripatetic]

hmmm....you got a link for that? (no biggie if not...just curious)

my only concern...with my trying that...i canNOT take antidepressants...but...much much well wishes to you if you find success there

[Twiggy]

Originally Posted by peripatetic

hmmm....you got a link for that? (no biggie if not...just curious)

my only concern...with my trying that...i canNOT take antidepressants...but...much much well wishes to you if you find success there

I'm curious, why can't you take antidepressants?

Here's the link for it.
http://www.ncbi.nlm.nih.gov/pubmed/17383162