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Post by grim on May 11, 2014 19:28:10 GMT
I've decided to go it a go without medication Having my racing thoughtstream calmed down is one thing,but being not...quite...able...to fully think about anything is more (to me) frustrating than focusing on everything at once It's the same with both mph and dex,this vague feeling of not fully being "on the ball" There's also the increased lack of patience,and a few other niggles. All of which has brought about this decision to go sans meds,at least for the time being. So far,after two days,i feel really bloody ill ...but other than that i'm doing ok,and if I'm frankly honest the increasing amount of neural randomness is not altogether unpleasant. but we'll see...
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Post by danherts on May 11, 2014 21:43:07 GMT
I get where you're coming from. The meds seem a balancing act between gaining and losing traits/ways of thinking, some of which are positive and desirable, some negative and undesirable and some that are probably ultimately unhelpful, but missed none the less.
I plan to come off the meds for a while once I finally find the right dosage as it seems so long since being at baseline I need to remember what it's like to be me again for a bit.
Good luck with it and keep us posted on how it goes. I'd be interested to hear if any of the positives from the meds are retained after maybe having done things differently for a while.
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Post by grim on May 13, 2014 18:57:35 GMT
So far so good. I'm more tired than usual,and less motivated (only "less",i still have enough to get through the day's doings) My tribe have commented that i seem more chilled and tolerant,which is a good thing.
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Post by grim on May 17, 2014 10:16:46 GMT
One week in and I've had the best week i've had for ages.
It's hard work,keeping my head "in the room" takes a good bit of effort...
The main difference i think is that i spent years not on meds,but also not knowing that i had adhd...this time I'm not taking meds...but i DO KNOW that i have adhd,and just knowing how adhd affects me day to day eliminates a lot of frustration and anxiety.
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Post by contrarymary on May 17, 2014 11:25:15 GMT
that's good news grim I wonder if you are better off because you have been on meds, and thus have a Much clearer understanding of how adhd affects you than someone who has never tried meds?
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Post by grim on May 17, 2014 19:58:41 GMT
I believe you may have a point there contrarymary
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Post by contrarymary on May 17, 2014 20:30:16 GMT
i thus wonder whether you might have some useful insights you'd be willing to pass along i think at any time there are quite a lot of us who "discover" adhd, do research and are convinced that that's the reason we've struggled for years. then we either wonder if it's worth getting a diagnosis and procrastinate, or get a private diagnosis but can't afford ongoing treatment. or perhaps do both of those and then sit for a year or two on an NHS waiting list. in all of these cases we'll have a certain amount of insight but we're never medicated, we are just us but with more information, and perhaps trying some of the non-drug techniques... but our brain chemistry remains the same. SO, if there was anything you feel like sharing with the group ....?
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Post by itsabitlike on May 18, 2014 1:20:31 GMT
i've also been off the drugs (elvanse) for a week too. the first three days were very hard and i had to overcompensate with coffee. reason? i feel like i've got the point where the positive mental effects are so small, they may as well be null but the physiological effects (cold hands, elevated body temperature, loss of libido, general weight loss) are significant. i've been going to bed at 10pm every night with my hands clasped to the sky, hoping this will do the trick. so far, i think i am winging it unfortunately, i've lost my mobile for the first time since i started meds but there were bound to be a few hiccups! as for whether acquired wisdom can be successfully used as leverage for no meds... i don't know. there are ppl who say just 'knowing' they have adhd is enough. i knew for years before my diagnosis and it didn't help me, although neither did i try to help myself. chicken? egg? who knows
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Post by Deleted on May 18, 2014 10:18:54 GMT
I've taken med holidays of various lengths - the insight from being medicated for a considerable period made a real difference.
Even though I couldn't help slipping back into some pre meds behaviours there were other behaviours that had been modified (neural pathways concreted in?) and a general awareness of transgressions that I made.
Week one off meds was always difficult - a lot of rebound made it uncomfortable.
I've always returned to meds because I felt I was starting to lose the benefit of insight - the balance had slipped to 'not as useful as being medicated'.
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Post by grim on May 18, 2014 19:43:19 GMT
I think it took two and a bit years on mph or dex to realise that it wasn't for me. Maybe there was a touch of "the emperor's new clothes"...i.e. i read the wonderful effects it had on others and assumed it was having the same effect on me. It wasn't. My ability to focus improved,but only to the extent that i could perform "mundane" tasks for long periods of fime.e.g housework,decorating (i absolutely detest painting,but managed to repaint the interior of our house in about 3 days).Anything requiring a bit of creative vision was beyond me,in hindsight i feel i'd morphed into some kind of uncomplicated drone worker...and the meds calmed my mind to such an extent that i could only really think about what was occuring right then and there. Having adhd means i have trouble locating myself in linear time,but on meds i felt like i was detached from normal time...i just "was".
When i was diagnosed i went onto meds that day,so this is the first (other than a two day break) time that i have been unmedicated and "adhd aware",and it's different. I know why things are as they are,now that I've done the research.I can accept myself as i am,i have to,i couldn't carry on in the stifled medicated state.I felt caged,i need to let my mind run free...but i'm confident that i can take charge when i need to.
Maybe being untreated for 45 years is just too long a time to try to change the "operating system",i think it'll run ok with just a few updates.
N.B It is possible the being bipolar has played a part in all this. I'm fairly rapid cycling which makes my reactions to meds,etc inconsistent at best.
Don't know if i've passed on any insight or just waffled randomly,if i've missed anything please ask.
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Post by Deleted on May 19, 2014 9:52:42 GMT
I think it took two and a bit years on mph or dex to realise that it wasn't for me. Maybe there was a touch of "the emperor's new clothes"...i.e. i read the wonderful effects it had on others and assumed it was having the same effect on me. It wasn't. My ability to focus improved,but only to the extent that i could perform "mundane" tasks for long periods of fime.e.g housework,decorating (i absolutely detest painting,but managed to repaint the interior of our house in about 3 days).Anything requiring a bit of creative vision was beyond me,in hindsight i feel i'd morphed into some kind of uncomplicated drone worker...and the meds calmed my mind to such an extent that i could only really think about what was occuring right then and there. Having adhd means i have trouble locating myself in linear time,but on meds i felt like i was detached from normal time...i just "was". When i was diagnosed i went onto meds that day,so this is the first (other than a two day break) time that i have been unmedicated and "adhd aware",and it's different. I know why things are as they are,now that I've done the research.I can accept myself as i am,i have to,i couldn't carry on in the stifled medicated state.I felt caged,i need to let my mind run free...but i'm confident that i can take charge when i need to. Maybe being untreated for 45 years is just too long a time to try to change the "operating system",i think it'll run ok with just a few updates. N.B It is possible the being bipolar has played a part in all this. I'm fairly rapid cycling which makes my reactions to meds,etc inconsistent at best. Don't know if i've passed on any insight or just waffled randomly,if i've missed anything please ask. My experiences have been similar with different emphases. On meds my ability to do mundane tasks is so much greater that it's a useful attribute and the reduction of 'foot in mouth' moments makes life easier. This reduction in 'waywardness' is obviously reducing my sparkiness - but I don't need it so much even though it is fun. I was diagnosed at 44 and have been medicated for 8 years (on and off - 90+% on) mainly because I'm a liability off them (wayward with troubled thoughts). Maybe you could resume meds at a later date but on a lower dosage if you feel constrained by the current regime. Please keep us updated.
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Post by grim on May 24, 2014 19:14:48 GMT
Just checking in... I think the couple of years on meds has helped ingrain some habits. I'm managing to empty bins before the "refuse volcano" erupts on the kitchen floor,pick up after the dogs before the "dogpoo volcano"...you know the rest I've also enrolled on not one but two short college courses,following a "study things that i'm really interested in" rationale. My thought train is stuck in overdrive,but I'm tempering that by making a note/taking a photo/creating some sort of momento for any thought that i think I'll need again. All in all i still feel quite positive,so far so good.
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Post by grim on May 31, 2014 19:43:20 GMT
Oh well,back to the drawing board I've started back with dex today,after the initial honeymoon period of being unmedicated wore off i gradually felt like i was wading in treacle...the freedom of thought became a logjam of epic proportions! So there! ...but i won't let it get me down. That is all
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Post by purplepower on May 31, 2014 19:56:21 GMT
You gave it a shot. No harm in trying to see what life can be like on the other side. And you went back on meds before life went totally pear shaped. Consider that a success!
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Post by contrarymary on May 31, 2014 21:46:07 GMT
shame it didn't do what you wanted but hey grim we can only try. i'd be interested to hear a wee bit about what it felt like being off after having been on meds longterm, and what it feels like as you go back on - as in, what feels different? if you can be arsed that is. hope you feel the good bits again soon
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Post by grim on May 31, 2014 23:33:51 GMT
shame it didn't do what you wanted but hey grim we can only try. i'd be interested to hear a wee bit about what it felt like being off after having been on meds longterm, and what it feels like as you go back on - as in, what feels different? if you can be arsed that is. hope you feel the good bits again soon Ok,let's see... I felt tired,really tired,all of the time.2 and a bit years on stimulants is a big hill to roll back down i guess,i've literally been able to fall asleep at will...something I've never been able to do,and not something i'm comfortable with. The free flowing thoughts were good to begin with,but over a couple of weeks escalated to the point were i jammed up.Following conversation became harder and harder. I started missing things that needed doing. Little things like the bin in the kitchen,that form i need to fill in,you know the stuff. Mrs Grim said i was avoiding things and putting things off...she also said that i'd gone into a high phase of bipolar which probably accounted for my decision to come off the dex (just once I'd like to be the first to notice a shift in mood,just once ) She would have said something about it had i not started on meds again. Back on meds... The most obvious difference to me is that i notice the little details again,the small things that need attention,the things that normally get swept under my metaphorical rug. ...and i have stayed awake all day,go me!
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Post by grim on Aug 22, 2014 18:56:54 GMT
Stopped again! Haven't had any adhd meds for a week. The constant undercurrent of low level anxiety and the abject deppression that accompanied every come down became unbearable...and progressively longer lasting. I am still taking my bipolar meds,there's no question of stopping them...ever. ...and i'm getting a little help from protein shakes,berroca,and coffee.
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Post by grim on Aug 31, 2014 19:38:56 GMT
This is becoming ridiculous,i am clinging to the edge of sanity,or so it feels. Since the above post on 22/8 i have gone from initial opitimism to confused disappointment. My symtoms(,according to Mrs Grim) are worse then they ever have been,including before i was diagnosed. So that's like,forever. Problem is,since diagnosis,i have become "self aware" of my adhd so i am painfully conscious of the fact that i am really not doing at all well. Out of desparation at midday today i took a small dose of concerta (36mg). It helped a little...but... My mood dived twice during the afternoon,round about the time i would estimate that the first two releases were wearing off (and before the next dose kicked in)...and round about 7pm,when it was all wearing off,i was engulfed in a wave of depression that was almost painful in it's intensity. I feel ok again now,but i don't know where to go from here. I can't really function well without meds,concerta just makes me want to die with the rollercoaster of mood swings (ir mph is the same,i can't cope with peaks and troughs...and i never get the dosing times right. Concerta/mph works great at some points during the day,but there seems to be a very small window for this.
Which makes me curious about how the drug is delivered. Instead of three separate releases,what about a long release mph that has an initial release and then a consistent release with no ups or down?
Anyone point me in the right direction?
I can't tolerate dex,it just makes me pissed off. Mph is good,sometimes,but the downside is bad...and being bipolar i'm concerned that if i hit a low cycle and have these concerta related lows at the same time i might have a serious problem.
Any input would be useful,and sorry if I've rambled a little but i'm feeling a bit ragged and fragile right now.
Thanks
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Post by petra on Sept 1, 2014 1:40:51 GMT
I've just spent some time trying to find some helpful information and it appears a total minefield.
The only thing I can think is, is it worth investing some money in a top adhd/ bipolar specialist who is up to date and intuitive? I'm thinking that, although you're settled with bipolar meds, maybe a different combination may work together better? I think this needs professional expertise, and I know it's a dangerous path to keep chopping and changing.
Really hope things get better and more stable for you x
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Post by petra on Sept 1, 2014 3:48:28 GMT
One site I read that if the dose release is constant, it's not as affective and tolerance develops - I don't know how true that is, or if there is a med which delivers like this.
Sorry if this has already been tried or suggested, but could you stay on Concerta, but take a small amount of IR to curb the downs?
I'm also aware, as I said before, that it might not be good for you to keep chopping and changing meds. I don't know if this applies to mph - maybe not? But years ago, when I had a new psych, he (rightly or wrongly?) said not to keep messing with my doses of anti deps and mood stabilisers. My previous psych had given me a lot of leeway, and looking back, I crossed the line from occasionally altering the dose to frequently doing so - basically forever looking for 'a fix'. I can see the sense in what the latter was saying - the need for stability rather than being moved by the feeling of need for constant change which was actually more disruptive than beneficial. ...Having said that, my current psych has given me some of that leeway back, which I've found empowering.
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Post by blaze on Sept 1, 2014 7:46:05 GMT
If you are feeling unstable have you contacted support? Cpn, psych, gp etc?
Is strattera an option w your bipolar meds? What you say about time and concherta is familar. I found stimulants made my brain focus well, but that felt entirely unnatural and realy uncomfirtable to me. Strattera on the otherhand doesnt change how i actualy feel v much, alittle better mood, alittle less tired, alittle calmer, but it does seem to change how i function quite significantly. The end result means i still feel v much like my usual scattered self but suddenly find that my organisation improoves dramaticly, it no longer becomes impossible to do all the tasks id planned to do once the kids are in bed etc, i hope that explains it well enough. If its an option try asking psych. I also find stimulants impossible because of heart palpatations, but before these kicked in remember an un uncomfortable unsettled type of low level anxiety that felt alot like my previous problems w ptsd hypervigilance, i feel the opposite on strattera, its a nice contented more me type feeling.
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Post by petra on Sept 3, 2014 23:45:00 GMT
How are you doing now? Have you had any more thoughts about what to do? Stratterra like blaze said sounds like it makes a lot of sense to me?
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Post by grim on Sept 4, 2014 7:58:21 GMT
Hi, Heads a little clearer now after a few med free days.
Spoke to my gp yesterday about strattera,but he has to refer me back to the local mental health team to sort it.
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Post by scatterbrain on Sept 4, 2014 9:32:50 GMT
Good luck. Hope it doesn't take too long.
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Post by mighty on Sept 4, 2014 20:48:54 GMT
Not read all the thread but best of luck I've been almost entirely without meds for a while now and loving it. I find that I know myself well enough to now cultivate my out there traits into something wonderful. Also learning and practicing the nitty gritty of focusing for a bit longer on things, holding back my impulses a bit, etc, has really helped
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Post by grim on Sept 11, 2014 20:01:26 GMT
Update, Have just got appointment through to see psychiatrist on the 18th of this month for a review of my meds. I hope i can get something useful in place...i start college next week and we move house in about 4 weeks...both of which require me to be neurogroovy.(yes i made up a new word,you're welcome ) Oh yeah,college...that's going to be an adventure!
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Post by poutz on Sept 11, 2014 23:06:11 GMT
I've tried a few times to come off the meds entirely and I find I have to resume because I basically stop giving a shit about my job.
My job doesn't challenge me but the meds also don't help enough to break through procrastination to better myself.
I am beginning to wonder if I will ever make something of myself.
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Post by petra on Sept 12, 2014 10:41:03 GMT
Update, Have just got appointment through to see psychiatrist on the 18th of this month for a review of my meds. I hope i can get something useful in place...i start college next week and we move house in about 4 weeks...both of which require me to be neurogroovy.(yes i made up a new word,you're welcome ) Oh yeah,college...that's going to be an adventure! I like your new word Wow - sounds like you've got a LOT on - good luck with it all! But mostly, I really hope your psych can get you to a better place with your meds x
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Post by grim on Sept 18, 2014 22:20:02 GMT
Had appointment with psych this morning. Starting on strattera tomorrow. Yay me!
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Post by blaze on Sept 19, 2014 12:03:42 GMT
Gd luck, hope it works for you
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