raffles
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Post by raffles on Dec 21, 2015 9:30:56 GMT
Hi everyone! I must say, being here is something of a surprise to me; I just turned 51, and after a lifetime of struggling with what I (and everyone around me) assumed was just "the way I was" - distractible, dreamy, never really listening when spoken to, disorganised, etc etc - while looking for something else entirely on Pinterest, I stumbled across the fact that adults could have ADHD. I think it was a pin titled something like "Kids With ADHD - What If Mum Has It Too?" I read the article, and followed link after link, all the while with my jaw hanging open and thinking, "But this is ME! How could I have had such crystal clear symptoms for the last 51 years and never, ever had it suggested that I might be suffering from this?" Of course, I was at school in the sixties and seventies in the UK, when even childhood ADHD was a barely-noticed smudge on the educational horizon, so I suppose it isn't actually that surprising that, as the dreamy, unfocused kid lost in a book at the back of the class, I got overlooked or simply told I must concentrate, try harder, stop daydreaming. I muddled through twelve years of school and left at sixteen with a huge sense of relief. This was tempered pretty quickly by the unwelcome discovery that the world of work expects you to be on time and concentrate and be motivated too! Fat chance, alas. Fast forward through the long and unedifying spectacle of me attempting to be an organised, proactive Mum to three daughters, wife and homemaker... add in the fact that I'm a writer and artist but after my first book was published in 2003, I haven't actually managed to produce another or indeed accomplish anything of note... and here I am, in late middle age, only just finding out that the infuriatingly simple but evidently beyond-me challenges of everyday life need not have been that way. I've been so angry in the week since finding out - what a waste of all those years! Now I'm reading, reading, reading, in a hurry to catch up with what I've missed about my brain, my deficits or difficulties or whatever you want to call them; how it can be moderated or medicated, how I can adapt to gain myself a fighting chance at a productive life. My GP won't refer me to ADHD Services in my area without giving the consultant as much detail as he can. So back on 31st for a second visit to the GP, taking husband and one of the DDs with me to give him their perspective on my behaviours and difficulties. So, hello there all you ADDers - I'm glad I'm not alone in this!
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Post by contrarymary on Dec 21, 2015 9:59:30 GMT
hello raffles and welcome to the forum
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gillian
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Post by gillian on Jan 6, 2016 9:46:39 GMT
Hi, Raffles. I'm a little behind you in that I'm going through the reading stage and thinking, OMG that's me! I'm 45. I've always been naturally academically bright. However, I know I could have achieved so much more if I'd applied myself. I dropped out of uni. A common theme in my life. I've had many, many relationships, putting their ending (always at my behest) down to fickleness or flightiness on my part. I'm now married to a wonderful man and have been for 10 years. I found this letter this morning. It made me cry. And so I've decided to go see my GP. www.additudemag.com/adhd-web/article/11425.htmlI've almost never applied myself at anything. I put any 'success' down to being a warm and engaging person and being incredibly capable and full of ideas and energy. (Hope that doesn't sound conceited!). I have a pretty senior job in a major FTSE 100 company. I feel like I'm not coping though. My attention to detail and ability to focus are now impacting me and and my confidence is low. I'm full of ideas but never complete anything. I've always coped by building a great team around me who complete my gaps but I'm stressed at being exposed in meetings by not being on top of the meticulous detail required. So, lets keep one another posted. Like you, I'm now anxious about two things: 1. What if i DON'T have ADD and am just a bit rubbish at stuff?! 2. What if i DO have it. Can it be helped or am i destined to feel this stressed at work forever?! Good luck to you. Kind regards, Gillian PS I can tick every single item on both these American and NHS lists. aadduk.proboards.com/thread/330 :-(
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Post by annie on Jan 28, 2016 17:45:53 GMT
Hi raffles
Welcome to the forum.
I just noticed your post and gave a long reply as I also live in the N/E... but quess what the reply got "lost"
Good luck with your appointment with your Gp. Have a look at the FAQ's and see what we suggest when you're approaching your Gp. I've been campaigning (8+years) to get a properly resourced Adult ADHD clinic and last year the 6 CCG's agreed to fund the clinic, although obviously not to the level it required, hence the long waiting list!! It also struggles to identify dual dx's such as ASD or co-morbities such as anxiety, depression.
I'm not aware the clinic is asking for specific info before they will accept a referral (ask your Gp if that's the case?) It could be your Gp knows so little about the condition in adulthood, after all it's less than 8 years ago that the condition was officially recognised, that he's struggling to write the letter. I don't feel it's up to him to screen you that is something for the Mental Health trust to do.
Going private is not without some pitfalls, the main one being the Gp may refuse to enter into a "shared care" arrangement with your Consultant re future medication. Once you're on the NHS waiting list, I do know there is the possibility of saying you will be available, if there's a cancellation. However, that's not always satisfactory as the questionnaire for patient and relative cannot be filled in ahead of the appointment and therefore the person who you are going to see does not have time to prepare.
Good luck and let's know how you get on - be bold and don't give up!!
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Post by anopheles on Feb 2, 2016 13:22:07 GMT
I object! 51 is young middle aged!
Hello and welcome. You sound like me;'That's just you being dozy", etc.
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raffles
Member's not posted much yet
Posts: 6
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Post by raffles on Sept 14, 2017 6:46:29 GMT
Hi again!
Can't believe I didn't get back on this forum till now... but yeah, maybe I can believe it...
Anopheles, lol! I stand corrected, you're right - we are but spring chickens yet!
Well, anyway, here we are 18 months plus later on. I got my private assessment and diagnosis in summer of 2016, but then my NHS neurologist (who sees me every year or two because I was diagnosed with narcolepsy in 2003) stuck her oar in and declared that all my symptoms are explainable with HER diagnosis/discipline, and that she wasn't happy with me going on to different stimulant meds when I was already taking a low dose of Modafinil for the narcolepsy. SHE would do proper "gold standard" sleep tests (which admittedly had been neglected in my original diagnosis), and then tinker with my Modafinil dosage to effect improvement. This was in autumn 2016.
Cue a LONG pause while waiting for an appointment for sleep studies to drop on to my mat... finally arrived in January... for April 2017. Oy.
Had the sleep studies. They said they would need "a few days" to sort out the data, then they would send it to my consultant and she would be in touch to make an appointment to discuss the results.
A letter arrived about a month later - hurrah!
Offering me an appointment in September. Wow.
Another month went by, and my GP called to say the neurologist had prescribed me Rewisca, to be started immediately, to treat the restless leg syndrome and try to "consolidate" my sleep. I picked up the scrip and Rewisca turns out to be Pregabalin, a central nervous system depressant primarily used to treat anxiety disorders and epilepsy. It has a fearsome list of common side effects that sound worse than my existing symptoms, so after a bit of research and some thinking, as my RLS had tapered right off after the studies, I sent a message to my GP that I wasn't happy with the drug's side effects and wouldn't be taking it.
And so today I went for my appointment. No change: the neurologist/sleep specialist still doesn't think my symptoms point to ADHD, and gets all twitchy whenever I bring it up. She thinks all my cognitive / executive function deficits are attributable to fatigue caused by restless leg syndrome. This despite the fact that since the sleep study in April, the restless leg thing has been in pretty much total abeyance. Also, remembering that april/may was about when my last period was, I asked if that might be one reason why the RLS had vanished - the neurologist said no, no, nothing to do with it. Actually RLS is known to be made much worse by iron deficiency, and she knew that I had been suffering from iron deficiency in the run-up to the sleep studies, due to heavy and frequent periods during my perimenopause. I also asked if hormones might be part of the RLS puzzle, again to be told an unequivocal "no". Just looked it up on Google and oh, surprise - RLS is also known to be exacerbated by female hormones, particularly during the perimenopause and menopause transition. So basically, the neurologist wants to keep me on Modafinil at the present dosage, and wants to see me in a year's time to see how things are going.
A year! Why do these people work on such a hideously protracted time scale?
I asked if anything could be done in the meantime, as I was really struggling to function and totally fed up with it all, and she got all humphy with me and said perhaps I should take the medications she prescribes for me if I want to see changes-! Then suggested a good sweaty half hour of exercise every day if i wanted to try something "non-medication" in the meantime to improve sleep and cognition.
I told her I am being assessed by Adult ADHD services next month, and that I wanted to keep the appointment despite her disagreement over my diagnosis.
I'm just not that happy with her attitude. Is that unreasonable? I know consultants rarely like being disagreed with, but really? I knew she was being offhand and that she was downright wrong, but I wasn't certain in the moment. It was only when I checked afterwards that it confirmed what I thought.
So now I don't know if I'll be able to get medication for ADHD even if I get a positive diagnosis, because she will disagree with whoever diagnoses me and because she's already treating me for a sleep disorder, they will back off just like the private guy did. I'm SO fed up with this.
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raffles
Member's not posted much yet
Posts: 6
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Post by raffles on Sept 14, 2017 6:51:43 GMT
Hi, Raffles. I'm a little behind you in that I'm going through the reading stage and thinking, OMG that's me! I'm 45. I've always been naturally academically bright. However, I know I could have achieved so much more if I'd applied myself. I dropped out of uni. A common theme in my life. I've had many, many relationships, putting their ending (always at my behest) down to fickleness or flightiness on my part. I'm now married to a wonderful man and have been for 10 years. I found this letter this morning. It made me cry. And so I've decided to go see my GP. www.additudemag.com/adhd-web/article/11425.htmlI've almost never applied myself at anything. I put any 'success' down to being a warm and engaging person and being incredibly capable and full of ideas and energy. (Hope that doesn't sound conceited!). I have a pretty senior job in a major FTSE 100 company. I feel like I'm not coping though. My attention to detail and ability to focus are now impacting me and and my confidence is low. I'm full of ideas but never complete anything. I've always coped by building a great team around me who complete my gaps but I'm stressed at being exposed in meetings by not being on top of the meticulous detail required. So, lets keep one another posted. Like you, I'm now anxious about two things: 1. What if i DON'T have ADD and am just a bit rubbish at stuff?! 2. What if i DO have it. Can it be helped or am i destined to feel this stressed at work forever?! Good luck to you. Kind regards, Gillian PS I can tick every single item on both these American and NHS lists. aadduk.proboards.com/thread/330 :-( Hi Gillian, so what's your story now? I hope you're doing better than me! Sue
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Post by vagueandrandom on Sept 14, 2017 10:07:07 GMT
Hi raffles Discuss this with the consultant at your NHS ADHD appointment. Consultant's don't like to admit mistakes. . .do you agree with their dx of narcolepsy? You know yourself better than anyone else. Modafinil is sometimes used off licence to treat ADHD. If your ADHD dx is confirmed and you feel that treating it would benefit you more than your treatment for narcolepsy, you could always stop taking the modafinil, while you try ADHD meds . .you may find your sleep problems improve anyway and the ADHD Dr would know if you could combine meds. It's not up to the neurologist to decide what medication you can take anyway, you can always discharge yourself. Good luck!
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