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Post by gillywilly on Jun 24, 2016 12:31:30 GMT
Why don't the doctors realise that unstable moods are part of ADHD? The only benefit that I found with mph was that it stabilised my moods a bit. I've moved area and the psychiatrist that I've been sent to is refusing to treat my ADHD. . . wanting to stabilise my moods first Crap, isn't it? I'm still on my ADHD meds but my GP (probably sensibly) isn't considering a review and switching until he's stabilised my mood, too (now on Sertraline, an antidepressant). And then looking at oestrogen levels (and treating if née)... and only then (if neither of these make a difference) will be look at my ADHD meds again. From what I've read, given the comorbidity of ADHD with numerous other conditions, medical professionals are advised to treat whichever condition they see as having the greatest impact. Once that one is under control, they can address the next. Which seems sensible - but given how depression and anxiety can so easily be caused by ADHD and its impact, as well as being a separate comorbid condition alongside it, I don't see how they can split mood either way.
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Post by gillywilly on Jun 23, 2016 23:27:10 GMT
No problem, Foxtrot. Sounds like you've been having a rough time Similar parallels with my situation, too. I've just been put on Sertraline, too - though only 50mg (std dose). I did tell my GP I wished to review my meds but he said he wanted to stabilise my moods first (hence the antidepressants). And then checking my hormone levels (my request, tho). So could be a long time before I'm even given the chance to try Strattera. Re autism, FWIW I read only today that those with ASD have only a 50% success rate after trying first two meds (compared with ca 80-90% of ADHDers w/o ASD). Wishing you the very best of luck, and a much speedier referral than the two years you're expecting.
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Post by gillywilly on Jun 23, 2016 14:49:06 GMT
Shep2016, I clicked on the petition link you provided, but got a 404 Error. Is the petition still up for signing? If it is, and if you're looking to share it more widely, have you posted your link on Facebook ADHD sites? You'd probably get a wider audience there...
Well done for doing this if it's still going; I'll try and remember (hah!) to check back and try the link again later.
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Post by gillywilly on Jun 23, 2016 14:18:09 GMT
Hi gc7 Agree entirely on all counts! It frustrates me enormously that emotional dysregulation (or what William Dodson, psychiatrist/MD calls Regulation Sensitive Dysphoria) is not included within DSM. According to Dodson, ED/RSD was noted in the 1950s, but as it was difficult to produce measurable data, it couldn't attract grant funding and research not carried out as a result. (So I was very surprised and excited to see this piece - thanks roland!). Dodson held a webinar on ADHD and emotions last week: 'Emotions and ADHD: What Clinicians Need to Know for Accurate Diagnosis' www.additudemag.com/RCLP/sub/11953.htmlHe rambles on a bit, and mostly just reads off his pdf slides*, so you might want to just look at those, rather than hear him talk for an hour. *He does answer questions posed by ADHDers (so no slides for this), but as he misunderstood one of the few Qs he had time to answer, and spent several minutes not addressing the question, I wouldn't honestly bother When I first read about RSD, I had that brilliant Eureka! moment of finally making sense of the past 50-odd years of my life. And was then gutted by my prescribing nurses's response, which was that ED tended to be a factor in those with hyperactivity/impulsivity sub-type* - and he said I was more inattentiveness sub-type. (* the psych who Dx'd me didn't differentiate, so despite presc nurse being an ADHD specialist, he's a clinician, not a psychiatrist qualified to evaluate! And I thought sub-type classification was no longer done now, so doubly confused.) Bottom line is that emotional dysregulation is a living nightmare for many of us (Dodson says 1 in 3 adults diagnosed cite is at their most impairing feature, though no refs to back this up <fume>) and it needs to be included in diagnostic material.
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Post by gillywilly on Jun 23, 2016 13:53:49 GMT
Hi Alec77, hope today is a better day for you. You have my sympathies - I'm off work atm with anxiety and stress (and now on antidepressants). I haven't yet claimed any disability benefits, but need to research as I don't see how the hell I can go back to work. I know at least three others in my local ADHD who receive PIP, and I've been told that you qualify, having ADHD. I'm sure it won't be anywhere near that simple, mind! The advice I've had from others is to get help completing the form from someone who does this as part of their work (community mental health team, poss? or ask the clinic/psych who diagnosed you where to go for help?). And always respond with worst-case scenarios. Good luck! It can be really shitty at times (and that's saying something), but we get where you're coming from and are rooting for you!
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Post by gillywilly on May 31, 2016 12:02:37 GMT
It is interesting that you got offered group therapy, I don't remember being told about that. But I was on my own and there is every possibility that I was staring out of the window and not really paying attention! LOL I have since been up and have had much better experiences up there. Although I was a little frustrated when they put me on Strattera and told me if that didn't work there was nothing left to try! Odd. Am wondering if that's cos of poss side effects with other med conditions you might have? Tho methylphenidate and amphetamine sulfate (hate that spelling!) seem more benign than Strattera... I am hoping that once I have had my assessment with the clinical psychologist from the mental health team there will be a bit more support for me, to help me get back some of my life. Have you had your assessment now? How's the Strattera now? Or have you managed to get a change of meds? And what about the support group sessions? Fingers crossed things are looking up a little more for you...
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Post by gillywilly on May 31, 2016 11:44:43 GMT
I'm not on Concerta now. It wasn't really working for me and unfortunately, it triggered anxiety disorder. I muddled through for a few months hoping it was just side effects that would pass but a mixture of anxiety, depression, insomnia got the better of me. I started Strattera 2 weeks ago and so far that's going well. I'm still trying to get the anxiety and depression back in its box, but I feel better than I did. Still too early to gauge any impact on ADHD symptoms as yet. I've gone back to methylphendidate* (108mg) but only because Dexedrine (60mg) was doing my head in (my g/f said I'd gone from being homicidal to suicidal on dex... ). Reckon I get ca 15-20% max benefit on stimulants - reduces my impulsivity only, doesn't help me focus at all. Initially thought anxiety and depression (including suicidal ideation) both worse on amphetamine, but tbh, all three are prevalent on the methphen too. Joy. (*Originally Concerta from prescribing nurse while sorting out titration, but recently changed to Xendiate since being handed over to GP surgery to prescribe. It's very much a 'will they won't they' have them in stock... bit of a nightmare, really. Too early to see if any better/worse/different to Concerta.)Are you still on the Strattera? If so, how are you finding it almost a year in? (My prescr nurse is very against me using it, because of what he's seen/heard from his many other patients. Still keen to try it - but wanted to go back to Concerta first until my moods stabilised. Hah - think that might be a long time coming!)
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Post by gillywilly on Jan 31, 2016 23:31:30 GMT
Hi chaoticwitch, and sorry to hear about your less-than-positive experience at the Exeter Adult ADHD (DANA) clinic. REFERRAL/WAIT FOR ASSESSMENTMy experience has been completely different. I phoned the clinic in Aug 2015 (after GP referral in Feb) to see where I was on the waiting list. The friendly receptionist told me likely appt not til Jan 2016. She asked my about my symptoms, was sympathetic, and suggested useful info (esp Russell Barkley books/YouTube) in the interim. She put me on their last-minute-cancellations waiting list - and I got a call late Sept to ask if I could make a cancelled appt two days later (woo hoo!). ASSESSMENTSaw psychiatrist Dr AB who was very kind and calm, and happy for my partner to join me for the assessment. He stated at the outset that he was able to diagnose (pos or neg) 80% of those he saw by the end of the session, but might require more sessions with those where a Dx was not clear-cut. Two-hour assessment: he was very good at keeping me on topic (no mean feat!), was sympathetic with my difficulties, and diagnosed me with ADHD at the end of the session. He explained simply what would happen next, called for the prescribing nurse (MJ - equally lovely) to meet me, gave me an ADHD Post-diagnostic Information Pack, made particular mention of their closed Facebook groups and the group sessions they offered (more below), and recommended I read Russell Barkley's 'Taking Charge of Adult ADHD' (a copy of which he had on his shelf). He then prescribed meds, and followed up by sending a comprehensive letter to my GP, outlining all my various ADHD difficulties/ symptoms, and the support/guidance offered. FOLLOW UPI saw prescribing nurse MJ and psychologist RM a fortnight later. Bit disappointed by the 'psychological' support, as it seemed limited to an explanation about the group sessions they offered, rather than any individual difficulties I might have. But have seen MJ every couple of weeks since, while working up through the titrations. He is great at explaining all things medical, and at asking appropriate questions to determine what effects, if any, higher dose meds are having. He's also good at telling me when I've interrupted him (oops) - and supportive in upping the dosage, when improvements have been minimal. Once he'd prescribed the max dosage of Concerta (108mg) he discussed alternative drug options, with pros and cons, for me to think about (with paper copy to take away), should this dosage still not give optimal benefits. Am now trying out Dexedrine... Also v happy for me to contact him by email at any time. GROUP SESSIONSI declined the support group sessions offered (6 x Fri afternoons in the run-up to Xmas) - so was disappointed to learn the next available sessions ("in the New Year") won't take place until March at the earliest. Also, there are 4 different types of group mentioned in their Post-diagnosis Info Pack, but only the generic one has been offered to me so far. CLOSED FACEBOOK GROUPS1. DANAForde FB page: only a few of us ADHDers post on there. DANA clinicians are pretty quick to get back to any of the Qs we ask, and also post useful links and info about ADHD seminars or new research. They've recently asked what interest there might be in setting up a support group locally. 2. DANAF&F (friends/family) FB page: my partner accesses this site; it sounds like there are far more postings/discussions posted on there. OTHER GOOD POINTSa) confirmatory letter of assessment had ADHD-friendly descriptions of how to find the clinic by car/Park&Ride/train, with detailed written instructions (e.g. bus number; which stops to get on/get off at) and two maps. b) MJ (prescribing nurse) is v good at making sure I leave nothing behind at each appointment; also that I've stuck the details of my next appt in my phone c) other staff there are v friendly (so you don't feel like a moron) d) the clock on the wall runs 5 mins slow, I'm sure its deliberately done so that when we're running late for an appointment we don't feel quite so bad about it! In my experience, a great service. All credit to them.
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Post by gillywilly on Jan 31, 2016 22:16:46 GMT
Hi again
Did this group get up and running in the end? I'm still keen to attend - I was finally diagnosed through DANA end of Sept last year, but haven't yet been on one of their courses yet (next one not until March). Have read your report of that on another thread. Hopefully they've learned from running that first group you were in!
DANA are now looking to set up a different support group somewhere in Devon (they posted a questionnaire survey on their DANAForde Facebook group recently), but it would still be good to access an independently-run support group, too.
Thanks! (gillywillyrob@aol.com)
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Post by gillywilly on Jan 31, 2016 21:37:47 GMT
Gosh, sounds like I've been really lucky compared with you guys. Saw GP in late Feb 2015, taking along a completed Adult ADHD Self-Report Scale symptom checklist (as advertised on this site's guidelines). Also took along examples of my symptoms during childhood/adulthood (which I managed to drop all over the surgery floor ). Asked to be referred to see an ADHD specialist (again, as per guidelines on here). GP asked me a few further questions, then filled out a referral there and then. Got confirmatory letter from the nearest Adult ADHD clinic* a week or so later that I was now on their waiting list but to be prepared for a long wait (*in Exeter, part of Devon Partnership NHS Trust). Last August (8+ months later), I phoned the number on the letter (having first lost it, and having to ask the surgery for a copy ). Was given Jan 2016 as expected date (so 10-11 months after original referral). Was then told about their last-minute cancellations list - which I asked to be put on. Late September got a call from the clinic (they'd had a last-minute cancellation); saw a psychiatrist specialising in Adult ADHD two days later, and was diagnosed and prescribed meds at the end of the 2-hour session. (It helped having my partner of a year there with me.) Was given a post-diagnostic information pack (hugely useful) and saw their prescribing nurse and psychologist a week later. The service includes access to closed Facebook pages that they monitor, answer questions and post info on (one is for us ADHDers, one for our friends/family members). They also offer a partner or family member a session with their psychologist, and offer a 6-week course for us to attend, to help with organisation/planning, and understanding how ADHD has affected us throughout our lives. I get to see the prescribing nurse (who's brilliant) every couple of weeks to see how my current meds are working. Amazing service! This is all provided free of charge on the NHS. I feel very fortunate. The very best of luck to those of you still seeking diagnosis.
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Post by gillywilly on Sept 25, 2015 10:44:31 GMT
Rosko, that sounds like a really crap experience for you. I totally empathise with what you've been for. Unless a GP is also a specialist in ADHD, they cannot assess you. Of course they need good reason to refer you, so all the advice I've read (and which I ended up doing) is to go back with some evidence to back up your claim. Do check first with the surgery whether or not you have been referred (you might find that, despite the negative-sounding response you received, your GP did still refer you). If you have, ask the surgery if they've had verification from your local/regional ADHD support clinic that you are now on their waiting list - then ask for a copy. If your GP hasn't referred you, make an appointment to see a different GP (you're perfectly entitled to). Then take an online assessment and print out the results. It would really help you if you could also write down some examples relating to the different inattentive/hyperactive statements (e.g., talkative: at a primary school summer fete, one of my teachers (selling the raffle tickets), simply wrote down 'chatterbox' instead of my real name, on the back of the tickets). When I saw my GP (one of many at my surgery) she seemed initially sceptical (the usual 'all of us feel distracted, forget/lose things, feel restless' etc) but became a little more attentive (hah!) when I got out a sheaf of papers, which were all higgledy-piggledy, and which I managed to drop on the floor (clumsiness is also a symptom). She relented, and said, 'okay, give me some examples that I can write down on the referral form' - and it was obvious that I was intelligent but couldn't remember/find half the examples I'd written on my pieces of papers (evidence of being disorganised/poor memory). She still made it clear that there was no magic pill for adults and mentioned CBT and other therapies as being the way forward. My literal brain thought she meant they wouldn't medicate for adults - which I argued against - but she simply clarified that, even with a diagnosis, I wouldn't necessarily gain any benefit. Like you, I left almost in tears, feeling the usual shame, guilt and sense of helplessness that seem to be our constant companions. I did receive a letter from the Devon Autism and ADHD clinic, confirming they'd now received a referral from my GP, but that I should be prepared for a long wait. That was back in March. This August, getting desperate, I went to contact the clinic for an update - but couldn't find the letter. (Luckily my surgery had a copy on their system they were able to print out for me.) Spoke with a lovely, sympathetic receptionist at the clinic who said she was just about to send out Sept/Oct appointments for those who'd been referred in December 2014. She expected I'd get an appointment for Jan 2016. So - where does that leave you? Check whether or not you have been referred. If you have, you should receive a confirmatory letter - but you can also ask your surgery for the contact details of the clinic you've been referred to, and phone them to find out what the next steps are. It'll at least make you feel you've started the process, and you WILL get seen by somebody who knows far more about ADHD than your GP appears to. If you haven't been referred, then follow my suggestion above. In both cases, ask your surgery for information about some form of counselling for your depression, and say that you need to see somebody NOW. In Devon, we have a Depression and Anxiety Service that is self-referring. Depression (both mild and more severe) are common bedfellows of ADHD. And it should never be ignored. Good luck! We fellow ADHDers are rooting for you!
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Post by gillywilly on Sept 25, 2015 10:07:16 GMT
Hello! Is this support group up-and-running yet? I'd be very interested in coming along
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Post by gillywilly on Feb 24, 2015 8:07:44 GMT
Petra, that sounds great to me. I originally signed up some time ago and found the site both reassuring and helpful - but it does feel a bit of a minefield at times trying to locate things.* I received (I think!) a warm welcome almost straight away when I posted for the first time this weekend, which felt lovely - but to have had a welcome, with relevant info, when I first joined would have really helped, and encouraged me to post earlier.
*If you do set this up, please can you explain how to add your postcode to the members' map? I've seen Random's posting, but cannot find any way to PM her with my details. #feelingstupid
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Post by gillywilly on Feb 22, 2015 0:08:22 GMT
I definitely do have dyspraxia, planetdave, but agree that many with an initial Dx of dyspraxia go on to receive one of ADHD on top. Could be many reasons: a) that the two conditions are commonly co-morbid, and there are many overlaps between the two b) because there's still so much more acceptance within the med profession (it seems) of dyspraxia rather than ADHD c) because having a Dx of dyspraxia probably makes GPs more likely to then agree to an assessment of ADHD (much supposition on my part here, mind!), so that the first Dx leads on to the second, and d) because so many adults receive a dyslexia or dyspraxia Dx only while at uni - where it seems these are your only two options of what might be causing you 'problems'! Another, perhaps the most important, is the lack of understanding of how ADHD presents in adult women. Sigh. One of the theories about a misdiagnosis of dyspraxia (instead of ADHD) is that inattention, added to impulsivity, could be a direct cause of tripping/stumbling/dropping/spilling and/or knocking into things, rather than these being caused by a gross motor co-ordination difficulty. There's certainly logic to that theory - guess it depends on whether the individual has a good selection of other typical dyspraxia symptoms that are not part of the ADHD suite. I do have low self-esteem - but that bears no correlation with my sex drive; I think you're right about high stimulus activities - which is what, I think, my Ed Psych was getting at. But as he came to that conclusion after testing me for over-excitabilities, I suspect it's that, rather than the dyspraxia, that led him to that conclusion. Whether there's a link between over-excitabilities and ADHD - well, that's a whole new conversation! (As is Schubert! Sorry to hear about the broken finger, btw; that'll learn yer!)
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Post by gillywilly on Feb 20, 2015 15:59:55 GMT
I was diagnosed with dyspraxia while at uni, and during my assessment the Ed Psych tested me on Dabrowski's Theory of Positive Disintegration (seriously!). Effectively, it's about 'over-excitabilities': hyper sensitivity to the physical, emotional, intellectual, sensual .. (err... and one other) side of ourselves. Anyway, he looked at me completely straight-faced (having looked at my responses - very high in all areas) and said, 'Do you have a high sex drive?' He was dead serious (this was definitely not a case of him acting unprofessionally - and he did go on to talk about over-eating, too).
And yes - I do have a high sex drive; always have had. Some would call it hedonistic - but I just see it as appreciating the fabulous things in life, with an impulsivity trait that sometimes causes me to act now, think later. Doesn't mean I bed-hop, or am sluttish (I'm monogamous when in a relationship), or anything else that's pejorative. I love stopping to smell the flowers, delight in thunderstorms, cartwheel in the street, am awestruck by sunsets, cry at Schubert's string quintets... and have a high sex drive.
But whether that's my dyspraxia, my (undiagnosed) ADHD, over-excitabilities - or just me being me, I really don't know :/
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Post by gillywilly on Feb 20, 2015 15:37:14 GMT
Interesting thread! Thanks for asking, Bee! I clicked the 'bisexual' button (more for the sake of us being invisible, it's just nice to be asked!); used to identify as 'sexually fluid' (but as with Babble's PanDemi it sounded a little too medical!) - now, I'd go with 'queer'. Only in my second relationship with a woman but have had years of noticing other women without realising what it was. Hah! 'Queer' suits me as 'bi' sounds like you're constantly bed-hopping (nope) - and it's not (for me, anyway) just about sex or body type: I'm either attracted or I'm not; you love who you love: simple. I've always felt like I've never quite 'got' how to do things the right way (whatever that is) - so identifying as queer suits me down to the ground. Of course, I look like an arty femme - so if I told most (straight) folks I was queer, I don't think they'd have a clue what I was going on about. Sigh.
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Post by gillywilly on Feb 20, 2015 15:24:53 GMT
Great article, and seem to recall reading this pretty much word-for-word on an American site called ADDitude. If you haven't come across this site yet, I'd highly recommend it. Made me weep (with relief!), recognising so many of my own symptoms
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