Lucie
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Post by Lucie on Apr 16, 2017 20:38:35 GMT
I'm now into my 3rd week of exploring if nutrition can help any of my symptoms and thought I'd do an update before more time speeds past and I lose the motivation to write. Given the state of my NHS referral and limited finances for continuing private treatment, I've had to put medication on hold for the time being. In the meantime with my GP's support I'm taking the next 2 months (hopefully if I can stick to it) to see if / how a nutritional approach might or might not help with some of my more problematic symptoms e.g. overwhelm, foggyness, restlessness, inability to focus and retain information, severe anxiety) My aim is a low carb, higher protein and fat, nutrient dense diet. Week 1: I removed all grains and starchy foods, so no bread, pasta, rice, potatoes and no GF substitutes. This week as an incentive and to ease myself in without feeling deprived, I allowed myself free reign with things like pork scratchings, nuts, caramelised nuts and loads of cheese (including a raclette with friends where I ate more cheese in one go than I ever have in my life before!!) I also had 3 big ice cream and peanut butter binges, justifying it all as ok for keeping my focus off what I'm giving up. I noticed that I really wasn't hungry between meals but didn't notice much else. Still felt really foggy and tired and struggled with focus. Oh, and I lost 2lb which was a big surprise given what I had eaten. Week 2: I reigned myself in with the excessive compensations and focused more on high nutrition. This was surprisingly easy i.e. I didn't experience it as an effort. I started sprouting (sprouting specific seeds with high nutritional value in jars and eating them when they are ready) and added soaked nuts to my diet (they are seemingly more nutritious, full of enzymes and easier to digest when you do this). I started taking Spirulina, Chlorella and fish oil. I've struggled a bit with keeping my protein up vs not wanting to eat meat all the time so will have to see how this goes longer term. One thing that really surprised me this week was the total absence of sugar cravings and not wanting to snack between meals. I'm a real sugar fiend and a terrible snacker. I survive the day from one snack to the next. I use coffee, tea and sugar to perk me up when I feel foggy and hurtle from one self fix to the next. I'm surprised to notice I haven't felt inclined to do this at all (except a mid morning coffee). Towards the end of the week I notice I have less lethargy and overwhelming fatigue and feel more alert and focused. Week 3: I've carried on much as I did in week 2 paying more attention to keeping carbs under 100g a day so checking everything I eat for content. I'm also trying to drink more water. I use an app on my phone to help me keep up with habits that keep me on track. A typical days diet goes like this: Breakfast: X2 scrambled eggs cooked in butter. Salmon or avocado X10 soaked almonds Sprouted broccoli and alfalfa. Lunch: Smoothie, 50g banana, 50g blueberries, 10g hemp protein, 100g Greek yogurt, 14g chia seeds. Salad with cheese and / or mackerel / chicken. Olive oil. Supper: Fish/ meat with mixed vegetables and salad. Coleslaw. It sounds really boring when I write it out and I imagine if I read someone else writing about it I would think it wasn't my thing at all . but so far I'm really enjoying it and still not hankering for treats or carbs at all. Having spent all my adult life struggling with my weight and overeating I can't emphasise enough what a surprise this is. In the interest of not overwhelming myself I keep it simple and don't fret about having everything different every day. At the moment this is working and I'm really pleased with that. This is a long post. Sorry if it's been hard to get through. I'll try to be back with a shorter update next wknd X
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Lucie
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Post by Lucie on Apr 7, 2017 8:46:35 GMT
Oh! I meant to say . . Have you asked your GP if they'd agree to shared care with your private specialist for medication? I know you've decided to give it a break, but if you decide to continue with meds it would be considerably cheaper to get NHS prescriptions. Hi vagueandrandom Isn't it weird when you take a tablet and the anxiety just stops taking hold!? All those years I have been struggling to find something to make it stop!! Forcing myself to do CBT (which I've always found makes things worse in my case as it causes me to focus more in the 'issues'). In the other hand I must say mindfulness (on the rare occasions I manage to sit still for long enough) . . has sometimes enabled a similar effect to the Elvanse. And psychotherapy has also helped quite a lot with self awareness and identifying triggers. I'm lucky that my GP is really supportive and offered a shared care arrangement, but like you, right now I can't afford the longer term private / monthly reviews etc especially if the medication is going to need a lot of tweaking. Thanks for the Wakefield link. I asked the GP but she says it's unlikely I would get funded there if they can find me something local. I'm sorry your having such a rough time with your CCG. It's appalling.
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Lucie
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Post by Lucie on Apr 7, 2017 8:33:37 GMT
Hi @lucie, It's just over 2 months now, but the benefits kicked in in a matter of days. There's more about it in this thread. (That's how I know it's just over 2 months ;P ) You could be developing tolerance where medication stops having the desired effect, or you might even be becoming addicted/dependant on it. "Tolerance is a person's diminished response to a drug, which occurs when the drug is used repeatedly and the body adapts to the continued presence of the drug." Be careful stopping it, and if you feel even worse off it than you did before you started taking it, cut down very slowly. I have another theory as to why it might have stopped working, but it depends on whether you suffer that 'rebound' or not as to whether it is relevant in your case. I was in the middle of writing a long post on it, when I realised it could simply be tolerance, so started again and wrote this post,but the fact you feel foggi er and more lethargic suggests my take on it could be right. (The word tolerance is often (mis)used on here, to refer to adjusting to the side effects.) marionk's, I only tried the Elvanse for a week and it worked really well, though I didn't enjoy the side effects and on balance that combined with learning that the local adult ADHD service only serves out of area patients unless you also have ASD . . and not being in a position to fund ongoing private treatment have led me to put it all on hold until my GP (who is luckily very supportive) tracks down someone with ADHD experience that she can refer me to. Grrr. After that one week with Elvanse I'm still struggling with fog and lethargy but the last days have been a bit better. In the meantime I'm taking the next few months to fully explore a nutritional approach and seeing if that can make a difference
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Lucie
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Post by Lucie on Apr 2, 2017 17:46:15 GMT
It's really great to read about a high protein diet helping sharper thinking etc. How long have you been doing it for marionk? I started cutting out refined carbs last week and since I decided to put medication on hold (for now), I'm hoping to give 'optimum' low carb nutrition a really good go over the next 6 weeks and see if it makes any improvement at all. The only thing is that after my first week of Elvanse I feel foggier and more lethargic than I have for years . . I hope this improves soon so I can better discern the effects of what I'm eating.
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Lucie
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Post by Lucie on Apr 2, 2017 17:23:40 GMT
Hi and welcome borednotbad. I can totally relate to what you write! It's quite a journey.
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Lucie
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Post by Lucie on Apr 2, 2017 17:16:25 GMT
Gosh, almost a month since I was diagnosed.
I took notes throughout my first day of Elvanse.
I waited until I wasn't working to try out the medication. I'm generally sensitive to substances and have to act quickly and intuitively at work so didn't want to feel out of sorts. I spent the day at home working on a creative projects. My baseline state was blurry, foggy, overwhelmed by bright light and noise (this frequently happens to me) and restless / antsy.
11am ate 2 slices of toast. (Avoided caffeine all day having read that the combination with Elvanse can cause agitation). Put the powder from the tablet into water and drank.
11.35: no notable effect
11.45: sudden sensation of my consciousness becoming clarified, focused. Play Elavate on my iPad for an hour.
1pm: Notable sense of usual anxiety triggers not gripping me. There is the usual physiological presence of anxiety in my body but my mind and emotions feel clear and still. My body feels like Ive drunk a lot of caffeine (I haven't), jittery but i feel calm and un-agitated emotionally. The absence of angst and restlessness is a revelation! Slight numbness in hands and feet and a funny sensation in my throat.
3pm: My body still feel jittery but there is still a total absence of usual stress and restlessness. I sort through paperwork totally focused and then start doing some sewing. Notice I have to consciously think about things as my usual intuitive way of operating is somehow cancelled out. Notice I'm clenching my teeth.
7pm: Spent all afternoon working on a project, very calm and quiet but not myself. Felt withdrawn not at all sociable. My partner commented that I didn't seem my self when he came home. Now watching TV. My body feels still. I even relax watching TV which is unusual.
9pm, I have a headache. and am tired. Have to force myself to eat as I'm not hungry (usually graze all day).
10pm. Go to bed. wake up at 1am and can't sleep. Manage to go back to sleep again at about 3.
The above experience has continued throughout the week although the caffeinated feeling subsided after the first day. The calm stillness was a revelation! I didn't realise how much anxiety I live with until it was absent. The focus and lack of sociability continued. (which is a problem at work as have to interact all day and also makes me feel not myself).
On the second day I took the tablet at 8am and still got the insomnia and headache. I then took the tablet at 6am and then had no problems sleeping at night but got the same unpleasant headache in the evening. I've tried drinking LOTS of water throughout the day but it made no difference.
After my first week I have very mixed feelings about the side effects I'm experiencing with Elvanse and have more or less decided to put it on hold and explore if theres anything I can try nutritionally / self medicatingly, to help a little bit. An added factor in this is that i've discovered that there are issues with my NHS referral to the local specialist service as it transpires it can only be accessed by local people IF they have ASD as well as ADHD. Otherwise its just a general mental health referral / IAPT. Having read horror stories I don't want to see someone who isn't specialised in ADHD. So for the foreseeable future I will have to fund myself privately and I've just taken a cut in hours at work and can't afford £260+ a month to continue privately. GRRRRR.
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Lucie
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Post by Lucie on Mar 24, 2017 20:16:04 GMT
I'm just doing an update incase it's helpful for others in the area or to see if anyone else has other info.
Just to recap:
*In Jan I was referred by my GP (in Sheffield) for an adult ADHD assessment. This was sent to the community mental health service.
*The referral was sent back to the GP suggesting that I be referred to see an IAPT worker (I have previously seen an IAPT worker and was totally!!!!!!! unimpressed)
*I called the community mental health service to find out more and they said they don't deal with ADHD and knew of no adult ADHD service in Sheffield.
*GP referred me again this time directly to Sheffield Adult Autism and Neurodevelopmental Service (SAANS).
Today I phoned SAANS to see where things were with my referral and they told me that it has been sent on to the community mental health team (same place the initial referral was sent to). I explained what happened previously, and the lady told me that for Sheffield patients SAANS only deals with adult ADHD if it is comorbid with ASD and otherwise the pathway is community mental health. She said they do assess people from other areas for ADHD without ASD but not for Sheffield patients She even looked into it further and called me back to confirm what she had first said.
I'm really happy with the private Psychiatrist who assessed and diagnosed me and my preference is to stay with him (and I would definitely rather stay with him than see an unspecialised general psychiatrist through community mental health after things I've read), but I'm also panicking about the cost of continued private medication reviews and prescriptions 😤. It's really frustrating that Sheffield has this specialised service that residents are apparently not able to access!!
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Lucie
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Post by Lucie on Mar 16, 2017 21:27:00 GMT
Yeah, for me it's not only about friendships and relationships and it's often not founded in anything that has actually happened, more my 'perception' or fear of. I appreciate that many people may have this kind of thing to some degree in some situations, but my understanding is that RSD is more than this. For me it's totally disproportionate, not rational and leaves me overcome with dread/anxiety and unable to focus on anything else for days. Actually it's probably worse in situations where I don't know the person well as I can't directly ask to at least try to resolve my anxiety.
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Lucie
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Post by Lucie on Mar 13, 2017 19:52:43 GMT
Ulgh, it's absolutely horrid hey! It is so debilitating and I lose so much time and productivity due to this. Have you found anything that helps vagueandrandom ?
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Lucie
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Post by Lucie on Mar 13, 2017 19:49:25 GMT
Hi George Welcome. I'm pretty new here too. I'm with you re paperwork!
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Lucie
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Post by Lucie on Mar 12, 2017 17:12:38 GMT
I was interested to read what William Dodson writes about RSD and was wondering if others find themselves affected to the degree he describes and if so if anything has worked to ease the impact of this. Has medication made any positive difference? What Dodson says totally describes my experience. It comes from such a visceral place and even though I totally logically get 'it' it doesn't stop it from totally debilitating me if I'm triggered. I assumed this 'theme' was connected to early separation trauma as I was adopted and attachment issues aren't uncommon for adopted people . . so I was interested to look at in a different light.
Any thoughts or reflections on this?
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Lucie
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Post by Lucie on Mar 11, 2017 16:42:00 GMT
Hi All! . . I haven't updated this for a while. . latest in the saga of trying to get an IFR to go out of area to a specialist adult ADHD service an hour's drive away. . . I've had the latest response to my complaint to Hull CCG. They're still insisting that ANYONE with ADHD and wants treatment must prove that they need it more than anyone else with ADHD. . .who are likely not to be dx because they don't routinely commission any adult ADHD services. . . round and round . . . broken record . . and a recommendation from a specialist isn't grounds for exceptional clinical need. They didn't answer my question as to why the NICE Quality Standard didn't seem to have been followed, only that the IFR panel consider all available guidance when making decisions. So this is war!! They're ignoring NICE and it seems they just don't think 'ordinary' adult ADHD needs any treatment at all!! I'm going to take it to the Ombudsman and get round to writing that letter to the Hull MPs. God this is outrageous and absurd!! Bureaucracy gone mad. I'm so sorry your going through such a long drawn out battle to get the support you need. I was just reading back over some of your diary and could highlight huge sections of things I totally relate to. Thank you for sharing. It's nice to not feel so alone x
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Lucie
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Post by Lucie on Mar 11, 2017 15:11:26 GMT
I thought I would challenge myself to writing a diary. About diagnosis and beyond and exploration with treatment. I tend to overanalyse everything I do and say and then feel exposed and become hyper critical of myself especially when it comes to online communities . . which stops me from sharing. I'm trying to work with this and let things be and go . . So I was thinking this might be a step to addressing this. I'll give a little background to my journey so far. I'm in my late 30's and was diagnosed last week. I had significant difficulties from childhood resulting in being excluded from 4 schools and eventually leaving formal education at the age of 16 with no qualifications. My mum destroyed all my school reports except for 2 saying that they were so negative she couldn't bear to keep them, but the 2 that remain are page upon page of "easily distracted" can't concentrate, "is capable of so much more if she only paid attention" "distracts others" etc. fortunately when I left school I found work through family friends that kept me interested and engaged. I thank my lucky stars as this gave me a meaningful focus That kept me from going too far off the rails. My reason for finally deciding to be assessed came through a bit of a metaphorical dark night. Long and likely boring so I won't go into it all . . but basically I experience significant difficulty with focus, restlessness, concentration, retaining dry factual written and spoken information, disorganisation and overwhelmingly strong emotions . . . and all this leads me to feel really frustrated at my limitations and apparent inability to consistently move beyond them and realise my 'potential'. A couple of examples: In my 20's I went back to college to do an entry level course in textiles and art. The tutors were impressed with my work and suggested I apply to uni even though I had no GCSE's. I got 5 unconditional offers at interview based on my portfolio . . . but when I took one of the places, within 2 months I was in a total state of anxiety and had to drop out as I found it impossible to retain information in lectures. More recently, I make things / textile arts and have had significant demand for my work and the possibility to make a decent living from this. However I was totally unable able to manage a productive work rhythm and organise myself. (And then there's the matter of my unattainable perfectionist standards which totally paralyse my creativity, and make finishing things off painfully difficult) and the whole thing became unbearable stressful and I ground to a procrastination standstill utterly frustrated at my own incompetence. And always the comments, your clearly intelligent, articulate skilled . . You just need to focus and try harder. You just need to believe in yourself!!! Say some affirmations!!! Grrrrrrr. I'll stop here for now as this is probably getting a bit long. Thanks if you've managed to bear with me I plan to write again soon and share how I'm finding having a diagnosis after years of suspecting . . which so far I'm finding strangely mixed and emotional. Also I'm picking up my prescription later and plan to keep an update about my experience with medication when I'm brave enough to start it. Bye for now x Read more: aadduk.proboards.com/thread/10912/lucys-diary#ixzz4b2FKPXfp
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Lucie
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Post by Lucie on Mar 6, 2017 22:10:21 GMT
I had my private assessment today. It seemed fairly straight forwards and clear. I managed to find 2 old school reports and the consultant said that the evidence in these was some of the strongest he'd seen.
It seems odd that when I was clearly struggling so much the schools didn't do more to try and help . . but maybe it just wasn't the done thing at the time.
It's a weird experience. On one level I knew so don't feel much but on another there's a kind of shell shock and disbelief that it's actually real and that my struggles are validated officially.
Thanks for all the info to everyone that responded to my initial message.
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Lucie
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Post by Lucie on Feb 19, 2017 16:15:34 GMT
Thank you so much for the replies and information. Endymion, were you referred recently? They told me 10 months when I called in January. I chased up my referral last week and discovered it had been sent to the wrong service. They told me they triaged the referral and sent it back to the GP saying that there was no suitable service!!! When I told the lady on the phone about the Sheffield Adult Autism and neurodevelopmental service she had no idea that it existed My GP has now resent the referral to the correct service but with the added wait my anxiety and impatience have kicked in. After years of speculating now ive finally discussed it with my GP and found that she fully supports me being assessed, I just want to know either way. So I've made a private appointment which is a bit of a stretch but hopefully will be worth it.
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Lucie
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Post by Lucie on Jan 18, 2017 19:46:48 GMT
Thanks for your response vagueandrandom. I'm not quite clear what this means re the CCG. Is it that I would get the diagnostic assessment but that they wouldn't prescribe any meds? Other than the meds issue did the people you know who used the service have a good experience of going through the process? Other than the meds issue. I called today and they said its around a 10 month wait for assessment!! That seems crazy long. im from Sheffield so think it's very unlikely I'd get funded to go elsewhere. L
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Lucie
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Post by Lucie on Jan 17, 2017 21:22:44 GMT
Hi there,
I'm wondering if anyone has any experience of the Sheffield NHS adult assessment service? I don't seem able to find anything much about it online / or forum post from anyone who has used the service.
I've been referred there but after reading things here about difficulties with NHS services I feel a bit daunted and wonder if I should try to go private.
I'm not sure if this is the best board to post this on. If there's a better one please let me know.
Thanks
Lucy
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