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Post by smogz101 on Sept 1, 2016 19:15:26 GMT
Yeah I think your doing the right thing. You've waited long enough and hopefully this will sort it once and for all! I was gonna say if they do require you to pay for the prescriptions might be worth staying on the 30mg mph because it would just be a 2/3 week titration then wouldn't it rather than him thinking he has to start from scratch? Just a thought
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eli77
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Post by eli77 on Sept 9, 2016 12:38:00 GMT
Hi Vagueandrandom, Sorry I've not been in contact sooner - This is one of my major flaws We spoke about using an adhd coach, if you remember? Well...I did find one and would love to share my experience with you if you'd like. How can I send you a pm on here? I haven't had the chance to read much of your diary, but read that you moved house recently, is it anywhere up north? xx
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Post by vagueandrandom on Sept 19, 2016 16:36:50 GMT
I haven't updated for a while. . so much has happened. . and I've been camping somewhere with no phone signal. . .
OK. . so I saw the private consultant, I was tired, so was finding it quite difficult to get my thoughts from my head and
out of my mouth in any kind of coherent form. . loads of pausing, going blank and losing my thread. . probably not a bad
thing for an ADHD assessment, but I hate myself for it. . he said that it was obvious that I was being distracted by my own
thoughts . . I'd not thought of it like that before. . he said that I came across as vague, which you can understand, I found
funny. . . so he agreed with my previous dx as combined ADHD, although not with a typical presentation. . .
I wish I knew what makes my presentation unusual. . something to ask next time. .
I have started on 30mg Elvanse at eye-watering cost. .and apart from feeling a bit spacey on the first day, I don't feel any
different, which means I'm not having side-effects, but I'm not feeling anything positive either.
The consultant was concerned about my ability to pay as I'm not working and will request shared care during titration with my GP when he sends my dx report (my GP has agreed to shared care after titration is completed)
The report was sent by email within 2 days. Things that pleased me: he said that my mood was euthymic. . which means
normal, not depressed or manic. . I keep telling the Drs/counsellor that I'm not depressed, but they tell me that I am.
He also said that he would suggest that my ADHD "had some causality" in my past depressive episodes, which is what
I tried to tell the general psych at secondary services when he dx me with emotional instability, dysthemia and possible
personality disorder. .
Another letter from the CCG saying they won't fund me for out of area referral unless I am clinically exceptional. . .
Complaint underway. . .
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Post by vagueandrandom on Sept 21, 2016 10:55:59 GMT
Still nothing to report on 30mg Elvanse. . getting quite a crash of exhaustion after about 12 hours, which is too
early to go to bed and a bit of a rebound just in time for bed, which means that I still have problems getting to sleep
But that's nothing new and not nearly as bad as on Concerta.
I spoke to my Advocate for an hour yesterday about my complaint to the CCG. . .
he's never come across a case like this before and is finding it nearly as confusing as I do.
He agrees with me that they shouldn't be asking me to prove clinical exceptionality as they do not have
suitable provision for me to continue the treatment I started last year ie. an ADHD Specilist who is knowledgeable
and trained enough to prescribe and monitor ADHD meds until fully titrated as recommended in the NICE guidelines.
The letter says that Adult ADHD services are not routinely commissioned, but it's not on their own list of
"services not routinely commissioned" on their website, which is a long and detailed list, so either they've
missed it off, or it *is* routinely commissioned.
The complaints system doesn't help. . you can only ask for an apology, an explanation, or a promise to improve services.
So I'm going for an explanation.
The letter is deliberately confusing, using complicated medical/legal wording which somehow, when dissected, is incredibly
vague and ambiguous in meaning. It almost looks like a standard letter. It says that information provided doesn't make it
clear what I'm asking for, or what I need. I know which documents have been sent, including one from me to my GP
explaining exactly where and why I want to be treated. . .apparently the CCG disregards anything from the patient. .
They are using the letters from the local consultant psych who dx me with dysthymia, emotional instability and possible
personality disorder. . .and told me (but didn't put it in his report) that he didn't think it would be of benefit to treat my ADHD. .
although, after I was insistent, he reluctantly put me on a lower dose of mph IR , dismissed my reporting of side-effects
and discharged me to my GP with no further titration, or med review. . .so YES, it's not clear from local services
what treatment I need. . because the psych doesn't know anything about ADHD beyond lack of concentration, particularly
the way that it affects moods and doesn't understand how ADHD meds work.
Rant over!
NB. . .the Elvanse must be doing something. . my typing's gone awful again, like it did on concerta. . .
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Post by vagueandrandom on Sept 22, 2016 11:26:15 GMT
No worries about the long post gc7 . .I've just done the same on yours . . Just something I probably didn't make very clear. . the disregarding of patients is in regard of requesting referral/funding. . not complaints. The GP has to request the referral and give clinical reasons and provide evidence . . I can understand that the CCG can't listen to every patient asking for referrals that they possibly don't need. My concern is that my GP included my letter requesting a specific ADHD service and the reasons why, according to NICE guidelines. . .if they disregard it and my GP hasn't repeated it himself in the request (as it seems) the CCG are saying that no service is specified or reason given. I should have been seeing my GP today, but he cancelled and the next appointment with him is in 3 weeks. . .I'm not convinced that he can do any more for me so I'm going ahead with the complaint.
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curlylucy
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Post by curlylucy on Sept 29, 2016 6:39:08 GMT
Hi vagueandrandom I've have been wondering how you are getting on with with Elvance? I'm currently taking 60mg in the morning, but I'm not convinced that it is actually doing anything, my procrastination, scatterbrain, and motivation don't seem to have improved at all. I do feel a bit less impatient, and a bit more tolerant and generally chilled which is great. I may be expecting to much from it! And I have nothing to compare it to, I remember that you have been taking concerta, how would you compare the two?
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Post by vagueandrandom on Sept 29, 2016 8:06:45 GMT
Hi curlylucy! I'm still on 30mg. .and can't really notice anything, but I think that's good. . I get an early evening tiredness, my appetite's fine . . On mph I felt more calm with fewer mood swings, but I also was more distracted, tired with bad crashes and rebounds . .and headaches, so this is better. . I think that if you don't notice any improvement, it doesn't mean that there aren't things . . on mph, I was convinced it was doing nothing, but my friend said that I was easier to talk to on the phone. . I don't think that many people find that meds alone can get improve motivation, but if you're less distracted you may be able to stick at things for longer. I have been getting more things done, but it could be down to losing the stress associated with my fight with the NHS and having a couple of things decided for me. I don't have my next appointment for just over a week. .let's keep each other updated!
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Post by vagueandrandom on Sept 29, 2016 11:47:15 GMT
Update! I rather dashed off that last post because I had to go out. . I'd like to do a proper update. . .so, I finally got my official complaint sent off to the CCG with the help of my lovely advocate, so that stress is gone. . I'm seeing a private specialist, so I feel like I'm getting some help and support with my ADHD and I'm being taken seriously and he confirmed my dx, which proves that I haven't been making a fuss over nothing . . this, and the complaint being submitted means that there's room in my head for other things . . .like gc7 the struggle has rather taken over my life. . I'd been struggling to apply for several 'ideal' jobs and getting upset when I was rejected, but there's nothing special in the pipeline now, so that's less stress. I was also stressed about getting some work done on the house. . .it's taken me so long to decide . . I was going to get it all done at once, but have decided to do a bit at a time, which has also reduced the stress levels. . . So I don't know if the meds are working, or if I'm just generally happier with less stress. .
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Post by vagueandrandom on Oct 17, 2016 13:38:04 GMT
I've finally got round to updating this, so it may end up being rather long. . . I was on Jury Service for 3 weeks, which took up most of my headspace. . and as it was a non-familiar situation with people who didn't know me, it was difficult to judge whether the elvanse was having any effect. I found the case really interesting, so it wasn't too hard to focus. . it was the social things (as usual) and I'm hyper-aware atm. . I noticed that I *do* move around more in my seat than most people. Being forced into a group meant that I found it really difficult to speak and when I did, it was random thoughts and facts at a million miles an hour. . I found it really hard not to talk about it outside court and was so worried I'd 'blurt' something that I just avoided conversation altogether. Although I did speak to some of the other jurors, I didn't feel like I fitted in and couldn't join in with their smalltalk and jokes. So. . . I went back to see the private specialist and increased the elvanse to 50mg. My BP has increased and, for the first time ever, I was asked how much coffee I drink. . . answer. . A LOT. . . strong black coffee has been my self-medication choice since I was a child. . so he said I should reduce and then, ideally stop. . it's hard. . so I don't know if my headaches are due to caffeine withdrawal or the increase in meds. . . OK. . so there's been a surprising effect from the increase in meds. . .I've spoken before about how I don't consider myself to be particularly anxious, just in certain situations, but have started to realise that I might be more anxious than I thought. . In fact, I must have been in an almost constant state of anxiety because I had a sudden 'lack' of anxiety when I took my first 50mg elvanse. . which was a surprise. . I also think that there are different perceptions of what is 'calm'. . My counsellor and employment advisor both say that I appear more calm. . I don't feel physically calm, like I did on mph, and my brain's just as speedy and random and unfocused as usual. . is lack of anxiety 'calm'? I don't know. . On mph I was often tired and my brain had quite a few days when it wouldn't get itself into gear . . couldn't keep a thought in my head for more than a few seconds. . . on elvanse my brain feels alert and like I've had a good night's sleep, even if I haven't had much sleep and am actually tired. . .but I don't think there's any difference in function. . I had my parents staying for a few days, so it was a good opportunity to see if anything's changed. . I did get tetchy and argumentative and grumpy and irritated and I kept forgetting my words and zoning out, but I didn't lose my temper. . I asked the specialist if he could recommend any therapy/coaching, but he didn't know of anything private. . . they offer it in his NHS clinic . . . so I'm still pushing to get an NHS referral. . there should be a response to my complaint from the CCG by 13th November. . I'm sure there's more to catch up with, but this has taken long enough as it is
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Post by vagueandrandom on Oct 17, 2016 17:43:46 GMT
Ha ha! So much for my supposed calm! My employment advisor wanted me to agree to applying for 3 jobs a week. . . I cried . . . I told him that I apply for every job I find that I can and want to do already. . sometimes it takes me weeks to apply for one job and I don't want to get stuck in a job I hate again! I tried to explain that if I was given a specific target, I would feel so under pressure and scared I would fail that it's likely that I'd be unable to complete ANY applications. . I don't understand his argument that the more jobs I apply for, the more likely I am to be shortlisted. . I haven't managed to get shortlisted when I've spent weeks making my applications as good as they can be for jobs that I'm ideally suited for. . .anyway . .went to the shop on the way back. .there was a long queue, so I went to the self-scan and got 'unidentified item in the bagging area' on the first item, so I shouted and swore out loud in front of children as there was no one to help, threw my shopping back into the basket, joined the queue, huffed, puffed and swore like a mad lady, before throwing the basket down on the floor and storming out! Went to another shop before I got home, then saw that people are putting their bins out. .so thought I should do it before I forget. . .totally forgot my shopping until just now . .I'd bought ice cubes . . . I now have to clean up a big puddle. .
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Post by vagueandrandom on Oct 24, 2016 11:28:42 GMT
I woke up early today then fell asleep again. .
I can't remember if I took my meds . .if I didn't, it's too late in the day now. .
and if I did, I don't want to take another because I don't think I could cope with a double dose. .
I wish I could stop worrying about it.
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Post by vagueandrandom on Oct 24, 2016 14:39:34 GMT
I still don't know if I've taken my meds . . . I don't think I have. .
I've just spoken to one of the few people I will talk to on the phone. .
and who I can also talk to about my ADHD . .
now, I think I'm being really scatty having problems getting my words out and
frequently veering off topic . . I apologised and said that I didn't think I'd taken
my tablet and he said that he thought that I seem calmer, not talking so quickly . .
so I don't know. . I still haven't got out of bed, or dressed or eaten, or done
anything on my many 'to do' lists and I can't believe it's half past 3 . .
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Post by smogz101 on Oct 24, 2016 15:00:15 GMT
Can anything on your to-do list wait until tomorrow?
I've had a similar day, despite taking my meds - I think its because I had a dreadful nights sleep! Horrible feeling of being 'stuck' and really, really slow with everything. Ive highlighted the urgent things on my to do list that are essential to do today - everything else can wait until tomorrow.
Be kind to yourself and don't beat yourself up about the meds- its too late to take one now so try and put it out of your head and tomorrows a new day!
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curlylucy
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Post by curlylucy on Oct 26, 2016 10:22:51 GMT
Hi vagueandrandomI just read your recent post to advertisethis, and had another ‘OMG, that is me’ moment, this is the post… “Empathy's a strange one . . I'm super empathetic and can judge people's moods and I'm also good at identifying other people's relationship problems. .however. . I'm clueless when the emotions are directed at me. .I don't know how other people see me and can't tell if they like me or not. I don't have any close friends and don't really understand why. .I haven't had a serious relationship for over 20 years. . I'm incredibly social and know loads of people who are always pleased to see me and I'm fun at a party. . .but scarily intense and have developed the appearance of independence and having loads of friends and things to do. .I've been pretending to be 'normal' and covering up the truth for so long, I even minimised my difficulties with my specialist. . I need to unlearn habits, be honest with myself and learn healthier habits . .sorry, I'm hijacking your thread. . .there was a point to this. . Oh yes! Please stick with it. . I wish I'd been diagnosed in my 20s as there would have been time to undo my now ingrained bad coping strategies and actually understand and accept who I am.” Just after I was first diagnosed I cried and cried when I thought about all of the opportunities, both personal and professional that I had f*cked up, let drift away or not worked hard enough for. Luckily, I’m on antidepressants and my journey to diagnosis and treatment has been relatively straightforward, so I haven’t let myself wallow too much (or maybe I’m just sweeping it under the table like I normally do!) Anyway, I’m not sure where I’m going with this, but I just wanted to reach out to you with being in the same boat as I’ve felt so alone in feeling like this for so long. I could never understand why I just couldn’t make things work like other people seemed to, relationships especially seem so confusing and I’ve definitely reduced my possibilities for interactions with others as a result, it just feels so hard to know what to do. I also echo your thoughts in feeling that even though I’m now receiving treatment, some of my behaviours are so ingrained that it is going to take a lot of effort to change them. I’m hoping that the meds make it easier to try and make some of these changes, but starting to realise it is going to take a lot of work on my part, and that some bits will probably never change. I do feel a bit more accepting of some of my behaviours and I have stopped giving myself such a hard time ie for getting bored at work, the job probably isn’t that boring and that if I’m getting bored then it is better for me to do something else, even if it is just for 5 mins rather than trying to stick with it and get more frustrated, but I’m still not actually getting more motivated to do certain bits of it, and I’m worried that in being accepting, I am going to just let myself go somehow and then end up losing my job or whatever. Anyway, rambling a bit now, so back to the point, thank you for sharing so much about yourself on here as it definitely helps to know that I’m not the only one who feels like this.
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Post by vagueandrandom on Oct 26, 2016 23:08:36 GMT
Sometimes I read and intellectualise/overthink too much. . I want to deal with life better, but also don't *want* to be 'normal' because that just wouldn't be me. . We can only be the best version of ourselves. . Who knows if I can I can break down some of the walls I've built. . I'm glad that what I've written chimes with you. curlylucyhowever much I resent that much of my personality/creativity is down to a brain-wiring thing . . I'm also so pleased that I've finally found *IT* with enough time to do something positive. . Everything's hard work but some things are worth trying harder. .
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Post by vagueandrandom on Oct 27, 2016 15:03:12 GMT
The latest chapter in the saga of trying to get funding to see a specialist. . .
Just had a letter from the CCG in response to my complaint. . .Except they didn't
answer the question I asked, which was why do I need to prove clinical exceptionality
when they don't provide specialist services for ANY adults with ADHD?
I don't need to be in greater clinical need than other people with the same condition.
What they *did* say is that they only accept referral, appeal or any other correspondence
submitted through clinicians and they'd requested further evidence from my GP. . .
my GP told me that he didn't know what more he could add. . .he told me which copies of
letters he included, but I haven't actually seen what he wrote in the Individual Funding Request. .
My concern is that the letters I wrote to my GP detailing why I need/want to be referred, including
extracts from the NICE guidelines and naming the specialist service I want to be referred to were
included without further comment from my GP. . .and they don't accept correspondence from
non-clinicians. . .round and round we go. . . .
I've emailed my advocate, but he's out of the office until Monday. .
I'm tempted to write another letter for my GP to submit under his name. . .
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Post by vagueandrandom on Nov 2, 2016 17:50:00 GMT
I had a really bad day today. . went to jobclub for the first time after the 3 applications
meeting . .was really stressed out because I haven't applied for any jobs and was
worried that I'd be told off! . .the office was really noisy and it's open plan and I
got it overwhelmed and started to cry. . .which was only made worse when I was
told that my support would be ending on Monday as I hadn't got a job. . I feel abandoned. .
my counselling's finishing soon too . .
Last night I went to the ADHD support group and there was a woman who has a daughter
of 8 who has ADHD and she wanted to know what to do to help her. . I think she was
surprised/disappointed to find that the adults there with ADHD still have the same difficulties
and none of us are currently working. . it made me even more aware of my own issues
and how alien the ADHD brain is to the NTs.
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curlylucy
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Post by curlylucy on Nov 3, 2016 10:19:10 GMT
Quick question, what is an NT?
Thanks :-)
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Post by vagueandrandom on Nov 3, 2016 10:22:01 GMT
Ooohhhh. . .after having a really bad day, I had a bit of a Twitter debate about the local CCG, lack of adult ADHD services and having to demonstrate clinical exceptionality to get funding to see a specialist out of area. . . The CEO of my local MIND has sent me his email address and said that he'd like to talk to me, so he can understand the issues as he often meets with the CCG! He says he can't promise anything, but if he knows the issues, he can campaign/influence/increase awareness.
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Post by vagueandrandom on Nov 3, 2016 10:24:22 GMT
curlylucy NT = neurotypical ie the majority of the population as opposed to ND = neurodiverse ie ADHD, ASD. ..us. .
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curlylucy
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Post by curlylucy on Nov 3, 2016 10:28:51 GMT
Ah, thank you. I have seen it dotted about the site and guessed it meant something like that, but not what the actual letters stood for.
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Post by vagueandrandom on Nov 7, 2016 13:48:28 GMT
I saw my private specialist on Saturday and my BP has gone really high, so I've had to stop meds . . Although I was pleased with the limited effect of lack of general anxiety and feeling like my brain is engaged most days, he thought that it should have had more of an effect on concentration. So I'm to monitor my BP for a week and think about what to do next. He's not ruled out trying 70mg elvanse if my BP stabilises, but I'm having to adjust to the thought that meds meds might not be for me. He's offered to try concerta again properly ie taking IR mph to combat the crash, but it made me really tired and brain foggy . .and atomoxotine. . But I haven't heard many positive things about it and as it takes some time to be effective, I don't want to pay privately over a long time for something that makes me ill. . I was offered atomoxotine by the non specialist psych, so could get it on the NHS. . however, if I did, would the CCG refuse out of area funding because they're able to offer adequate care? The Dr and I agreed that I would benefit from coaching and adapted therapy, but the coach he recommends uses skype and I'm really freaked out by that, and he doesn't know of a private therapist. .although it's offered in his NHS clinic and the one that I'm trying to get referred to. . .that could be something to put in my extra evidence to the CCG. My FB page/group is taking off and I'm finding out some really worrying things about the (non)service for ADHD, including a non specialist psych who 'can' dx and 'can' prescribe meds. . Hmmm. .
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curlylucy
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Post by curlylucy on Nov 7, 2016 16:50:18 GMT
Hello
I just wanted to mention that the consultant I saw didn't seem too concerned that I hadn't noticed a great increase in concentration and not getting distracted, he said something about those areas taking longer to be stimulated, although I can't remember exactly what he said or if he explained why. Anyway, I'm sure that you went on to Elvanse after I did, so it is interesting that your specialist seemed to think the opposite.
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Post by vagueandrandom on Nov 7, 2016 16:55:14 GMT
Hi gc7 don't worry about hijacking my thread. . I do it all the time! I've written a letter as if it's from my GP. .I've even included that I've been seeing a private specialist, that meds had to be discontinued due to high BP and that coaching/therapy/more drug trials were recommended (it's in my Dr's letter) and added that I'm not able to do this as I'm unemployed and not able to pay for long term treatment. . . I'm not sure if it is the end, but they don't need to know this and to include the private Dr's reports can only help my case, particularly as it leaves me unsupported and without meds. I don't want my GP to just sign it and send it. I'm seeing him next week and am going to ask him to re-write it in the way he would normally write these things. . and some of the medical terms might not be right, so he'll need to correct them. He doesn't have the time or knowledge to write something from scratch. I'm also applying for PIP . . .had the forms for a week and haven't started it. . I've run through it with my employment advisor before they cut me off and he photocopied it, so I can do it in pencil first, so I don't panic that I'm doing it wrong in pen on the original. I'm sorry you're not getting responses from MIND and Maudsley.
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Post by vagueandrandom on Nov 7, 2016 17:01:29 GMT
curlylucy the Dr would have continued raising me to 70mg if it wasn't for my blood pressure. The lack of anxiety alone was worth it for me. I bought a blood pressure monitor today in case it was white coat syndrome
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Post by vagueandrandom on Nov 8, 2016 17:01:14 GMT
Update: took my own BP last night for the first time. . .it was at the high end of normal. Today I had a blood test with the nurse and got her to take my BP. .normal!
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Post by marionk on Nov 11, 2016 12:09:57 GMT
lol My Mum's bp is higher when the doc takes it, but fine with the nurse. My bp goes up and down faster than a yo-yo too. One time, the specialist took my bp, and it was slightly high, I knew it would be, my heart was racing, I could practically feel the adrenaline. He said something along those lines, and I guessed my hr to within a couple of beats. He took it again, and I did a bit of zen type stuff, and sure enough bp and hr went back to my usual low end of normal.
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Post by vagueandrandom on Nov 14, 2016 18:27:04 GMT
I had a meeting with the CEO of my local MIND this morning after I’d had a bit of a Twitter debate with him about the lack of ADHD services in the area. He wanted to hear my ADHD story and talk about how the CCG could improve access to assessment and treatment for adults. I also told him about having difficulties getting taken seriously by GPs etc and my problems trying to continue the treatment I started before moving to Hull. I rattled on for over an hour and told him how most adults with undiagnosed ADHD present with anxiety, depression, substance abuse, eating disorders, personality disorders etc which don’t respond well to treatment because the underlying problem (ADHD) isn’t being addressed. I explained how Drs are wary of stimulants because of their class B status and exactly how they work to stimulate the bits of brain that are constantly looking for a dopamine hit, which clears space to think more clearly. I also gave him a research document from the NHS which shows that adults with ADHD are much more likely to be out of work, on benefits and living alone and will have had many years of contact with MH services.
Obviously, he wanted to know how MIND might help. He has a lot of contacts in the medical profession and often meets with the CCG. I suggested that there could be more awareness and education among GPs so that people presenting wanting to be assessed for ADHD are taken seriously and a that there’s a clear and simple referral pathway i.e. not swings and roundabouts and proving ‘clinical exceptionality’ or dumped into Secondary MH services who are likely to misdiagnose with a variety of common mental illnesses. . . Regarding the CCG, as they have no ADHD specialists, they should automatically refer anyone needing assessment or continuation of treatment, meds reviews, adapted therapy etc to specialist services without having to prove clinical exceptionality. We also discussed the NICE guidelines which state that assessment of ADHD and initial prescription of medication until on a therapeutic dose should ONLY be done by a specialist and the specialist can be a psychiatrist or a specialist nurse practitioner (which would be cheaper for the CCG) and he said that he would try to suggest that they at least got a couple of specialist nurses.
I’m sure there was loads of other stuff, but he’s also asked if I might want to speak to some people about ADHD. . GPs and possibly CCG representatives and I said I would. So positive first steps.
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Post by easilydistracted on Nov 14, 2016 18:47:13 GMT
Wow! Look at you :-)
Tell truth to power!
Nice one, that's quite the result :-)
Congratulations!
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Post by vagueandrandom on Nov 23, 2016 11:43:31 GMT
I think I've made a decision After taking my BP nearly every day for 2 weeks and it being in the normal range. . I decided to take one of my remaining elvanse 30mg . . . I didn't feel anything much and got the first very high BP reading . .and it wasn't much improved when did it again later . . . So it looks like it's the meds . . . I could try atomoxotine, but as it takes a while to work, I don't think I can afford to do it privately, especially as there seem to be a lot of issues with side-effects and might end up paying for something that doesn't help, or makes me ill. So that's it then. . . I'm still pushing to get out of area funding, but that will just put me on a waiting list, who knows how long that will be? I'll up my campaigning and try to actually read and implement stuff from the books recommended by the private Dr . . I really wish I could comfortably use the phone or Skype because then I'd use the coach. In the meantime I'm back to self-medicating with caffiene
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