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Post by computermandan on Feb 26, 2016 10:44:51 GMT
*looks over his shoulder... I think I'm being watched... got a call from Maudsley this morning I have a final appointment on 8th March now... *creeps back into shadows I did wonder about the stimulant side of things, but never remember quite which way round what works if you get me. lol.
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Post by annie on Feb 26, 2016 12:32:03 GMT
Good news - lets hope this is the end of the journey!!
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Post by contrarymary on Feb 26, 2016 19:01:08 GMT
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Post by computermandan on Mar 8, 2016 15:47:40 GMT
Twenty minutes early... Bored. Can't work out the flower pond picture on the wall. I swear I nailed that the first time I was here. Is it under water or a reflection??
Bah. Anyway lots of ppl here and so felt typically awkward.
Just waiting now. Knew I shouldn't have looked at the metro on the way here. There's no more pictures to look at lol.
Ramble ramble ramble. I'm a little anxious I think lol.
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Post by contrarymary on Mar 8, 2016 16:59:37 GMT
hope it's gone well xx
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Post by computermandan on Mar 8, 2016 17:09:53 GMT
Well. Someone has just been given a diagnosis of adult adhd. Relief isn't the word. I can't sit here quietly on the train much longer, never mind the random noises of self amusement I'm making already! Letter going to GP, funding related query over who is prescribing - I washed over on the detail to be honest but we talked about 3 times a day immediate release stimulants. I forgot to ask what I've just realised. Find out soon tho eh Is is daft to be happy about being diagnosed with a "disorder" ?
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Post by computermandan on Mar 8, 2016 17:15:56 GMT
Hang on. Random noises of self amusement doesn't sound right. In fact maybe even a bit wrong!! Giggling like a giddy person perhaps is better
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Post by Lesley on Mar 8, 2016 17:22:56 GMT
Wonderful news, Dan. And no, it's not daft to be happy. It means you can stop beating yourself up and start working on a brighter (though admittedly not easy) future.
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Post by contrarymary on Mar 8, 2016 17:33:28 GMT
woop woop bloody woooooop computermandan no, not mad at all to be delighted to be diagnosed, enfin. you must be bloody relieved after all this flaming time, effort etc etc it basically tells you that your brain is wired differently to most people, it's not your fault that you think differently, have different strengths and weaknesses and may struggle with things which other people perceive as being v simple. and conversely, find things simple which other people really struggle with it is simply how you have been made. it is not your fault, you are not less of a person, lazy, crazy, stupid, resistant, uncaring, incompetent, selfish or any of the other labels which may have been thrown at you by colleagues/family/friends/loved ones, or indeed the inner CMD is it any wonder that you are relieved? the national referral centre has told you that you fit a particular pattern, and your brain is wired differently enough to be assessed as adhd AND you have had to persevere for YEARS to get this far, which is no mean feat for a NeuroTypical, and so very much harder for an ADHDer give yourself a pat on the back and dance aroud the train singing your head off, if you want to. well done you xx
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Post by annie on Mar 8, 2016 18:58:43 GMT
Hi computerdan. What can I say - only two and a half years to get the assessment/dx you asked for, all that time ago.
Thank goodness you stuck with this uphill struggle. Maybe you can be an example to others on here who are just beginning this "epic" journey!! Would like to think it wont be as difficult for those who follow?
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Post by computermandan on Apr 18, 2016 13:55:07 GMT
okay so approximately one month (4 weeks ish [cant be bothered to actually count]) since diagnosis appointment... my copy of the report from Maudsley arrived...
explanation behind diagnosis...
Despite lacking childhood evidence in DIVA(?) questionnaire and surrounding evidence, something to do with coping due to high intelligence masking impairment at younger age. suggested diagnosis of Adult ADHD subtype Inattentive 3 point something
suggested starting on 5mg Methylphenidate to be titrated in 2 week periods...
possibility that titration period of 3 months being prescribed by Maudsley depending of what the local people decide regarding funding. (seemingly if they wont fund initially then they need to let Maudsley know so they can apply for funding?)
if it goes down Maudsley 3 month route then after three months they will hand over I assume???
it's all sounding very political now... "ok we've decided what we want to do! Now who's paying???" interesting yet ever so slightly frustrating at the same time....
*goes back to administer further caffeine intake to maintain forward motion*
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Post by computermandan on Apr 22, 2016 11:25:22 GMT
so.. work asked for a copy of my letter. I obliged to see what would follow. They've offered me a lot of support (albeit while suspiciously asking if I can still perform in my "primary" role). so we are enforcing some of the structural changes brought about by recent disciplinary procedures which will basically help me to remember to do stuff. I've also been able to openly express some other grievances that they've acknowledged and understood from my perspective. Maybe they will or won't deal with them who knows. in other news they also encouraged me to contact my GP to find out the next step instead of waiting to hear from them. setup a phone appointment and.... I now have a Tuesday AM visiting appointment where I think I will be getting setup with whatever the first stages of medication will be... unless of course I misunderstood the GP on the phone that is
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Post by contrarymary on Apr 22, 2016 17:57:41 GMT
wow CMD - it's all progress - well done!
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Post by computermandan on Apr 26, 2016 11:08:58 GMT
Ok... so saw the doctor.
he checked weight, blood pressure and height. looked up the local rules and regs on what he should do with methlyphendiate and then prescribed 90 x 5mg medikinet.
for diary purposes...
took the first 5mg dose at 10:40am - now 12pm and feel "awake" not sure if just placebo effect for the moment though. acting a little giddy according to a friend/colleague.
lets see how this progresses.
Pharmacist only had a third of the prescription so I have to go back and collect the rest on Friday. noted mentally I need to budget for the cost of prescriptions somewhere too otherwise I will end up short at some point. do they do a prescription direct debit? lol
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Post by contrarymary on Apr 26, 2016 12:29:15 GMT
woop woop. nearly there, hopefully
you can get a prescription season ticket which may work out cheaper, and means you don't have to remember to budget cos it's all done at once. pharmacist will should have details
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Post by computermandan on Apr 28, 2016 8:52:27 GMT
ok two days in... took todays first dose a little late after working pretty much all night. I think I may be a little more "switched on" than usual but other than that I don't think there is much in the way of noticeable change, again this in itself could be more due to the initial "excitement" of making real progress. will keep posting in a diary fashion
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Post by smogz101 on Apr 28, 2016 17:40:35 GMT
Hi! It's great your seeing some improvement, 5mg is a very low dose so you might find you benefit more from a higher dose. I remember starting and although I did feel calmer and clear headed it didn't do anything for my concentration and it didn't last anywhere near 4 hours! You might find that you need a higher dose Steps in the right direction though!
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ishara
Member's posted somewhat
Posts: 95
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Post by ishara on May 1, 2016 6:29:48 GMT
Hi computer guy,
I just got a diagnosis of ADHD myself (still amused that I didn't notice the H, when everyone else seems to) and you make me feel grateful that I went privately – in my case, because I work in the service that provides the adult ADHD diagnoses - not actually in the clinic (unfortunately - I'd quite like to now), but they are my colleagues…
Anyway, I worried that with three degrees , I would face the " you got through school okay" thing - actually the consultant asked me how I handled exams, and I explained all the mad things I had done to circumvent various deadlines. It was pretty obvious that it wasn't straightforward for me - and, in my opinion, that passing exams somehow someway isn't the same as not struggling.
It's a shame that your initial assessor was so naive. You've done really well to navigate your way around the Nhs to the maudsley. They were the first adult ADHD clinic in the uk I believe. As you now know, a lot of stuff is comorbid with ADHD, which does muddy the waters. My son's got severe dyslexia and all his ADHD, to my mind, symptoms have hitherto been attributed to it. I am far from convinced, especially given my presentation and lack of dyslexia!
Good luck with it all - and well done! I rang an ADHD support line recently and they congratulated me on my diagnosis. I chuckled and sad that I never knew that they completely understood, because that is exactly how I felt. I burst into tears when I got my diagnosis, tears of relief and joy. Suddenly, a whole bunch of things make sense and feel like they are less my fault and I have just been doing my best with a neuro atypical brain .
I look forward to hearing how you get on with meds:-)
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Post by computermandan on May 4, 2016 10:44:08 GMT
Thanks for the support one and all smogz101 yup I think you may be right... guess I've got to tow the line regarding dosage titration but I will be "pestering" the GP to see if we can move it quicker somehow? he mentioned doubling the dose each 2 weeks so I guess we'll see what he says. ishara - I can relate to most of what you say - think my experiences (mostly bad) at A-level and the 5-day without sleep caffeine and pro-plus infused last minute handing in of Uni dissertation still unfinished... I mean who develops an online video rental system without getting round to doing the programming?!?) I did start hallucinating at the time and swear I saw the finished product... it looked surprisingly like Netflix does now lmao. Oh where was I ? Oh yeah those stories in my assessment's I'm sure went some way to explaining the difficulties. Also doing an IT degree - all my lectures were made available online immediately, so all the lectures I'd forgotten to go to, or got distracted during - I had the opportunity to revisit later on. Now my only concern work wise is if my employer's "concern" is genuine or actually just hidden performance monitoring... ah well lets just keep trying to be the best we can.... but these 8am-8pm days in a 9-5 job are getting tiresome considering I'm getting the same productivity levels as someone leaving much earlier every day. .... Anyway it's day like erm.. *counts days* ...8! so like a week in. discussed my inability to do any kind of mental arithmetic with the accounts manager here - he thinks I'm dumb now. I think he's a glorified calculator (at least computers don't think you're dumb) I don't think the 5mg dose is having much of an effect. positives = no side effects either though. missed 2 doses so far (forgetful!)... cheekily took a double dose on Saturday afternoon for the hell of it to use up 1 missed pill. didn't notice any difference then either. remembered to collect the rest of my prescription at the weekend, amused all over again at the multiple signatures and ID I needed to provide because it is "a controlled substance". I wonder if everyone has to do that everytime???
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Post by vagueandrandom on May 4, 2016 12:14:23 GMT
Re: ID for prescriptions. . .you'll always have to sign (at least) twice, but I've found a friendly pharmacy
that I now use every time and they've stopped asking for additional ID.
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ishara
Member's posted somewhat
Posts: 95
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Post by ishara on May 5, 2016 11:45:14 GMT
Lots to comment on – but I'll keep it to this. Oh, by the way, if my post read a bit weird sometimes I am just dictating them - spot of RSI so trying to avoid typing.
With regard to medication impatience, I so get that. See my diary thread for moans about it and really good advice from Smugz and vague and random! I found that the headache I get when the 10 mg wears off in the afternoon was a helpful pointer that I should probably hold fire - along with the great advice from the aforesaid that this may not be about a therapeutic dose, but about getting your body used to taking it at all.
Mind you, it's day 6 for me - and my consultant is reviewing the dose monday so it's not long for me to wait!
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Post by computermandan on May 31, 2016 15:54:40 GMT
ok so it's been a while.. been pretty hectic in that time too. spent over the odds on a BP monitor when I probably didn't need to... so far used it twice.
Got fed up with a GP (not the chap I've seen most of the time) after he dismissed the specialist's titration plan as "ridiculous" and "it's as if these experts think you're our only patient!" before rattling on about the instant release dosage being pointless and asking me why I'm not on the 1 a day form of the medicine. It's kind of lucky it was a telephone appointment because I'd had a run in with this chap before and safe calm distance in a quiet office was much needed to prevent me losing it otherwise.
anyway I just need to request to NOT speak to that GP in future...
so we're up to 20mg three times a day... have noticed initially that I was a bit more on the go than usual for around 3 hours in between doses... still no negative side effects as far as I can tell either. sleeping was affected if I took the last dose too late - been a little forgetful on occasion with that one... and the resulting late nights were interesting to say the least! (painting at 4am when you set off for work at 7am is a bit daft!) it's possible that my attention
Essentially I'm still the same me, ditsy, forgetful, little-bit-empty-promises, late. Which for me just highlights some of the habitual stuff I need to shake off with routine and actually just making an effort. Perhaps recognising where I have just kind of given in to symptoms in the past I can now focus on overcoming.
I think my next steps are to invest some time in planning the "what next" steps of improving life for me and kind of those around me at the same time (as a result of).
The remember the milk to-do's have been updated and so we're coping for now amidst mayhem in the way of "workload" at work and in the way of "we've decided to move house" at home... Am I mad or what??? it's all a little bit go go go on all fronts... I put my back out again this weekend - aggravated the lower back disc injury first suffered this time last year... so there will be a DIY delay that the taskmaster (wife) shall have to get used to for the moment.
so in effect - there's been no lightbulb moment thus far that I've read some people talk about. I do feel positive about the meds, and perhaps there's a little more focus in places I've not noticed... maybe I feel less "distracted" I'm not sure yet lol...
onwards!
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Post by contrarymary on May 31, 2016 18:16:00 GMT
yo computermandanfab to hear from you. and well done it not losing it wtih GP i don't know how it feels but your post is pretty succinct & focused. apart from the bit that tails off into thin keep on keeping on - and keeping us posted, when you've capacity. good to be reminded of possibilities and Life After . are those non-medication gold standards of coaching or specialist CBT possibilities in your neck of the woods? ps that reminds me. i've still not chased slam for the third part of my latest assessment appt either. now scheduled phone call for thursday. thanks.
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Post by computermandan on Jul 20, 2016 10:16:38 GMT
Ok so in going back and forth to GP for what somehow has become nearly 6 weeks... Ive lost my appetite completely and a stone in weight to boot (not such a bad thing) I dont think the Medikinet (methylphenidate) has really helped with my adhd symptoms in the process tho I have been taking 100mg split into 3 doses daily in the form of 30mg, 40mg, 30mg and whilst i've noticed a slight improvement with the 40mg dose in terms of "get up and go" i dont think its really making a difference in the main. The maudsley advice was to titrate up to 100mg a day then review with them. My GP (seen just now {the dismissive one again } ) wasnt keen and tried to tell me they were prescribing me speed and that Maudsley is a research center and adhd diagnosis is complex and maybe they got it wrong and he mentioned it could be psychosis!! I'm not sure if it was just pure BS or if he was just plucking random medical conditions from his (clearly literal rather than practical) knowledge?? In any case he stated that there is now some kind of local provision or "team" for adult adhd and he has asked one of the practice secretaries to refer me there now... My thinking is if it eliminates the need to see him then its likely a good thing. I would have preferred to go direct back to maudsley but he didnt say that wouldnt happen. In other news ive been signed off for the last 6 weeks with a back injury. I can barely walk more than a few yards. Work pushed me down the private insurance route and a new physio has changed the diagnosis from a protruding disc issue to a "sacro-iliac" joint disfunction caused by having one leg 3.5cm shorter than the other! This doesnt bode well for our end of august camping trip as i dont really suit a foreman role in instructibg others in how to put the tent up... i get a littlw short fused shall we say! i've been extra useless at home due to the leg/back too. My wife and my kids are fed up with me being around. Im fed up with the injury and lack of progress with the ADHD so v grumpy to boot. Suspect my wife expected a miracle cure but she insists ive just got worse. In the meantime my father in law came and pretty much finished decorating our house for us and its now on the market but not selling as quick as we'd hoped - adding to stress levels. Oh and my wife also decided to stop taking her anxiety reducing meds (cant remember name) that have helped her so much... because she didnt have time for a gp appointment. So shes especially frantic and apportioning blame in my direction at the moment... We plod onwards without direction. Hoping it will all fix itself without taking casualties. Groooaaannn.
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Post by annie on Jul 20, 2016 19:54:58 GMT
Hi
Sorry to hear your meds aren't giving you the benefits you hoped for. Several people on here have mentioned switching brands (that is moving from Medikinet to Equasym for example) and seeing some benefit. The other option is to switch to Attomoxetine (Straterra)or Dexamphetamine. However, that would be best done under the advice of the Maudsley.
I don't know what your CCG have agreed by way of funding to the Maudsley. The CCG certainly funded your assessment but it sounds as though the cost of your meds are coming out of the Gp budget - is that right? Do you know if they're funding medication reviews at the Maudsley? Your Gp sounds like an absolute pain and is voicing very derogatory remarks about the Maudsley which is really quite inappropriate. Your Gp is not commenting from a position of clinical expertise and I would be very wary of him trying to fit you in to a more local service at this point. Personally, I think that just muddy's the waters. Do you have a contact person at the Maudsley who you can speak to in terms of feeding back your experience of the meds so far?
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Post by computermandan on Jul 25, 2016 18:46:37 GMT
I could try contacting someone at the Maudsley but I've found it hard to persevere with it as they're busy most of the time as far as i can tell. My gp surgery is a nightmare atm as they've switched from appointments to a walk-in system that has already led to a couple of parking fines after long wait times. But the main issue is not seeing the same doctor each time. The doctor i have seen most of the time is very accommodating but the chap i saw last... well you read my last post i know several ppl who have changed surgery because of him too. Considering the same approach but i think better the devil you know and all that! I do think the meds have come straight from the GP budget so far and the review would be funding dependant which may be why this chap had a rethink.
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Post by contrarymary on Jul 28, 2016 17:36:16 GMT
sorry to hear you've been having such a hard time computermandan the combo of injury and medication issues sounds tough - and combined with school holidays must be a mare hope things look brighter soon
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Post by computermandan on Aug 10, 2016 10:06:50 GMT
Hey diddly dee a complicated, bumpy life for me... So spanner in the works time. Tried to be a good employee and pushed my gp for a "fit for work" note as i thought i could cope with going back to work despite ongoing back troubles and pain... Went into work, got called into a meeting after half an hour. Now i have to be careful what I type... but effectively i might be unemployed very soon... And breathe. I am struggling to handle the things that I know I need to handle and I'm laying here in semi shutdown mode secretly hoping its all going to sort itself out... So much for moving house too Groaaaaaaaaaan!
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Post by vagueandrandom on Aug 10, 2016 11:36:47 GMT
. .
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Post by contrarymary on Aug 13, 2016 16:00:51 GMT
w t heck? that's a really hard thing to be handling when you are already struggling physically & mentally, and right in the middle of the holidays i hope you are getting support with the process, and with your health issues. it's not legal to make someone redundant (or sack them) because of a a conditiona affecting physical or mental health keeping fingers crossed for you computermandan
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