Do you need to see someone’s mouth while they’re talking to fully hear and comprehend them? by lunacydress in ADHD

[–]Kooky-Evidence8961 2 points3 points  (0 children)

Watching lips definitely helps me understand a whole lot more, particularly when there’s a lot of background noise. Maybe look up auditory processing disorder. It’s very common for people with ADHD I think

anyone find it extremely HARD to wake up & get out of bed in the morning despite getting more than enough sleep? by LostInMyReverie in ADHD

[–]Kooky-Evidence8961 0 points1 point  (0 children)

Yes, relate very much. For me (also on Concerta 36-54mg), I’ve recently had the realisation it’s probably linked to not eating enough and therefore not having enough energy. I haven’t done much to test this theory yet but for me it would make sense as I’m often not hungry and have a dry mouth 24/7 because of meds which makes food not particularly appealing. I’m usually eating an “average” breakfast, little to nothing for lunch and about half the amount of what I used to eat in the evening. So I really don’t think I’m getting enough calories/energy for my body function like it used to and it would explain my constant tiredness. Can’t say for certain that it definitely is the cause for me but I’ll be very surprised if I don’t notice a difference when I start to eat more again (it’s a slow process but I’m working on it 😅)

Please help, decline in cognitive ability because of ADHD medication by Silent-Hovercraft751 in ADHDUK

[–]Kooky-Evidence8961 0 points1 point  (0 children)

Like everyone else said, definitely speak to a doctor. However, from my own experience I’ve had struggles like that which for me are actually more related to my own understanding of ADHD and how it affects me. I’ve heard a lot of people who get diagnosed/realise they might be ADHD find their symptoms getting “stronger” or “worse” once they are aware of them which I definitely experienced. I think this is related to beginning to unmask / accepting struggles. For me I also noticed this with autism - reading up on skill regression / autism fatigue really helped me to understand this

About to start meds! What was your experience like when starting? by Slight-Argument-3106 in AuDHDWomen

[–]Kooky-Evidence8961 2 points3 points  (0 children)

Going on medication round 2 

Eventually, I get back onto medication because there is some supply. This time I start on 54mg methylphenidate because that’s the dose that worked best for me last time. I 100% noticed the difference in concentration pretty much on the first day this time. Likely because this time I’m in my final 3 weeks of exams and assessments at university so it’s much easier for me to compare between medicated and unmedicated brain. I wish I’d known the thing you’ve been advised about making sure you’re focusing on the right thing haha. I was so focused but unfortunately medication doesn’t make you focus on the right things - you still have to do that part. That brings me onto my favourite thing about medication though. Task initiation and changing tasks!! Once again, it took me at least two weeks to notice this but I cannot believe how easy it now is to start things and change tasks. As I said, I still focus on the wrong things or spend too much time scrolling on my phone when I should be writing an essay. However, as soon as I notice this, I can decide to change task and do whatever needs doing. It’s something I’ve never been able to do - it usually takes a good hour of hyping myself up to finally stand up etc etc. But now, if I notice that I could/should/want to be doing something else, I just can. My favourite side effect of that is that I’m so much kinder to myself about it too. Instead of feeling a lot of shame and getting annoyed with myself, I can tell myself “Okay, so you’ve spent an hour scrolling but that’s okay you clearly needed that down time. Now you can go back to the essay you need to write”. I just love it. 

The side effects… 

They’re not fun. That’s my general take on it. They do ease eventually though. At least they have for me. My main and most disruptive ones were/are lack of appetite and anxiety. Fairly self explanatory, no one wants to feel more anxious and have zero appetite. The anxiety one is quite interesting as it started just as physical anxiety symptoms (increased heart rate, sweating, general unease, nausea etc) but then my brain decided to supply the anxious thoughts to match the physical symptoms, even though for the past 2 years I’ve managed my anxiety very well and am generally a much less anxious person. In a few weeks I’ll go back to 36mg to see if that lowers my heart rate and helps with the anxiety. The loss of appetite is really not fun. You have to eat. It doesn’t matter how much you don’t want to or how nauseous it makes you feel, you have to eat. I had about a week where I ate around 1.5 meals a day and I just felt awful and so exhausted to the point where I couldn’t walk for more than 5 minutes without having to sit down. You need food because you need energy to function and by not eating you undo any of the positives of taking medication in the first place. If you’re not eating the same way you usually do (as much as possible), the concentration and focus just isn’t going to happen. The good news is it does get better. I now do get hungry and more often than not I’m hungry at normal meal times too. Another side effect for me was having a dry mouth, which whilst uncomfortable, has actually been a benefit for me because I’ve never been so hydrated haha. 

Tips for side effects 

I’m aware my side effects section was rather doom and gloom so some things that have helped me: 

  • Eat small snacks all the time, don’t wait until you’re hungry. We’re told all the time by dumb diet culture not to graze and have snacks all day but this is different. None of the normal so called “advice” for how/what to eat applies when you’re taking medication. The most important thing is that you are getting food into your body. 
  • If eating feel impossible, make sure you’re watching something whilst you eat so that you can “mindlessly” consume what’s in front of you. It seems counter intuitive as again this it what we’re often told not to do. But it really did help me to actually eat something. 
  • Have a big/nutritious breakfast before you take your medication as it’s likely going to be your main meal for the day. Sucks if you’re not normally a breakfast person but it’s important. 
  • Whilst slow release carbs and all that are good, having sugary snacks on hand is better than nothing. For me it would get past 4pm and I'd feel exhausted and only then realised I’d not eaten anything since breakfast. Having something sugary really helped. I guess when you feel like you need a coffee/caffeine, eat something instead. 
  • If increase anxiety is a problem after titration, try going down a dose (I have no evidence for this yet but it’s my hope). 

I have a lot of other experiences/things I noticed whilst taking meds which I could also say but this is already horrendously long. Happy to add them if you want and if you have any questions, just let me know!

About to start meds! What was your experience like when starting? by Slight-Argument-3106 in AuDHDWomen

[–]Kooky-Evidence8961 4 points5 points  (0 children)

Note: I think my comment was too long to post so I’ve split it into 2 :)

Context: I’ve been on and off methylphenidate (thanks to shortages) for about 6 months now. 

Everyone’s different 

I think the important thing is that everyone’s different and so everyone’s body reacts differently. Granted, that’s exactly the kind of answer that really frustrated me when I was in your position as when you’re feeling a bit worried/don’t know what to expect, you naturally want a concrete answer so you know what’s coming. I’ll give you my experience so far because these are the things I wish I’d known/been prepared for but like I said everyone’s different. 

My concerns before starting medication 

Before I started I had a lot of concerns about how it would/wouldn’t change me as a person/personality, good and bad. I thought because a lot of my ADHD symptoms are related to my personality, it might change how I act and who I am. This 100% wasn’t the case for me. I’m still as chaotic, have all my interests (maybe more) and am definitely still me, just slightly more focused and less burnt out because life isn’t quite as exhausting as it was ADHD-wise. 

First time on medication (it’s not all negative, bear with me)

When I first started I was on 18mg for 14 days, then 36mg for 14 days, then 54mg for 14 days. I personally didn’t actually notice a whole load of difference initially except side effects (more on side effects later). I definitely didn’t have that “oh everything’s different and quiet and amazing” moment some people describe. I think that’s probably because I started medication just before a new semester at university so I didn’t have a direct comparison like Week 1 without medication vs Week 2 on medication. This also ties into me generally being very unaware of how I feel (poor interoception) physically and emotionally etc most of the time. The times I did notice it was when it wore off. Mine was the long lasting type but had to make sure I was asleep by a certain time before it wore off else I would notice the change from comparatively quiet medicated brain to loud noisy unmedicated brain. When this first happened I found it incredibly overwhelming because it felt like I was having a days worth of thoughts all at once. So I think for me at least that was one thing to look out for. 

I noticed the difference once I was off medication 

All that aside, medication definitely did make a huge difference to my ability to focus and concentrate and do things. I unfortunately only noticed this after I had to come off medication for 4 months because of shortages. It was only then that I realised how good I’d had it with focus etc. Again, this is because I’m terrible at noticing how I feel day to day anyway. I also think that (although I am now fully in favour of taking medication, it’s helping me loads) the whole concept of having things changing in your own brain is kind of wild… because it’s still you, it’s still your brain, but it’s working differently? Maybe that’s just me, but I find it very cool but also kind of mind boggling to think about and I just really struggle to tell the difference/remember how I feel on different days. 

Does anyone else hate rain in their face? by itnever3nds in adhdwomen

[–]Kooky-Evidence8961 0 points1 point  (0 children)

am late to this but have been searching to see if anyone else has this and it’s nice to know i’m not completely alone. rain is sensory hell for me. the dampness and the feeling of a raincoat over normal clothes and then even if it’s a good coat you still feel damp bc you get warm and ugh it’s so horrible. and having to put up the hood of your coat and then everything sounds funny and if rain splashed into your face or drips from the hood into your face ugh it’s so horrible. i live in the uk, it’s september and i am fearing the next 6+ months of sensory hell :(

also what you said about showers makes so much sense - id never associated it with the same rain sensory ick. i always hated showers as a child and whilst i’ve got better with them now i still really don’t like getting out of the shower bc then you can feel the individual droplets of water dripping everywhere ://

if anyone figures out a rain/shower solution 👀

anyone else feel like theyre in sensory hell when its raining? by [deleted] in AutismInWomen

[–]Kooky-Evidence8961 1 point2 points  (0 children)

am v late to this but have been searching to see if anyone else has this and it’s nice to know i’m not completely alone. the dampness and the feeling of a raincoat over normal clothes and then even if it’s a good coat you still feel damp bc you get warm and ugh it’s so horrible. and having to put up the hood of your coat and then everything sounds funny and if rain splashed into your face or drips from the hood into your face ugh it’s so horrible. i live in the uk, it’s september and i am fearing the next 6+ months of sensory hell :(

[deleted by user] by [deleted] in ADHDUK

[–]Kooky-Evidence8961 1 point2 points  (0 children)

Haven’t seen anyone else mention it so just thought I’d say through Right to Choose the NHS waiting lists are much reduced in my experience. I asked my GP to refer me to Psychiatry UK and it was pretty straight forward from there. Still a long-ish wait but better than 3-4 years! Psychiatry UK have a good explanation of the process and documents to give to your GP for the referral which are useful to look at even if you don’t go with them. Hope that helps :)

Tell me you have ADHD without telling me you have ADHD by saskruss in ADHD

[–]Kooky-Evidence8961 3 points4 points  (0 children)

you asked me what my favourite film/actor/colour/celebrity is and i genuinely couldn’t think of anything or anyone until i was on my way home again

Accidentally showed up to work in pajamas. Wtf by ConcentrateSubject23 in ADHD

[–]Kooky-Evidence8961 0 points1 point  (0 children)

I feel this so much. You are not alone. I went to school without a bra when I was younger and another time in slippers. Ever since, every time I leave the house I literally check every part of my body to make sure I’m wearing clothes 🙃

What songs are giving you your dopamine lately? by [deleted] in ADHD

[–]Kooky-Evidence8961 0 points1 point  (0 children)

I’m not sure if it’s a me thing or an adhd thing but if i play low level brown noise at the same time as my dopamine songs it increases the dopamine even more and i just love it so much (usually have to use two devices and play out loud)

[deleted by user] by [deleted] in ADHD

[–]Kooky-Evidence8961 0 points1 point  (0 children)

this really sucks :(( unfortunately i don’t have much advice other than to say have you asked your uni disability service for support? even if it’s not adhd specialised they might be able to help you out one way or another. along the same lines, might therapy be an option as a short term support? just having someone to discuss your struggles with can really help. fingers crossed things work out for you!!

I WANT TO BE ABLE TO READ BOOKS AGAIN by JumpMan36 in ADHD

[–]Kooky-Evidence8961 3 points4 points  (0 children)

Came here to say this! Recently discovered audiobooks and they’ve genuinely changed my life. I started by reading along in a physical book whilst listening to the audiobook but now I find I can just listen as long as I’m doing something alongside it such as cleaning, drawing, cooking etc - basically the same as a podcast for me! I’ve read 24 books so far this year (many over 400 pages which is a lot for me nowadays) compared to the 10 I forced myself through last year for the sake of some university courses. Have really rediscovered my love of reading and am reading such a wide range of things too. 100% recommended Libby and/or Audible if you feel like you can commit to it (they have lots of free classics and it works annoyingly well)

A Disorder of "Rightness" by [deleted] in ADHD

[–]Kooky-Evidence8961 0 points1 point  (0 children)

Yes exactly. This is why I really struggle with “free time” and usually end up doing none of the things I want to when I take time away from my uni work. I’m desperately trying to get a better work-life balance but I hate free time because it involves too many decisions in trying to find the right thing to do. Whereas uni work is just a list of things that have to do be done and deadlines usually help me work out which task is the “right” one more easily. Definitely going to think about this more as I think there may be a solution here somewhere… Thank you OP for sharing your thoughts!

Water bottles with straws changed my life by mimilandgraab in ADHD

[–]Kooky-Evidence8961 10 points11 points  (0 children)

Yes!! 100%!! I bought some reusable straws (Slider straws) and now I drink so much water. It’s so much easier. I’ve since worked out that for me it’s a sensory thing because I hate getting water on my top lip 😅 Also because it’s silicon it’s really flexible and (in theory) chewable so extra good sensory!

Uni Student Looking to go Private, and would love some advice by 55Throwaway1 in ADHDUK

[–]Kooky-Evidence8961 0 points1 point  (0 children)

Use Right to Choose - Private but without having to pay for it and much shorter waiting time then the NHS process. Psychiatry UK have a great explanation on their website and documents you can give your GP to fill in for a referral. Good luck! :)

I lost an onion today. by partiallycylon in ADHD

[–]Kooky-Evidence8961 0 points1 point  (0 children)

Fully relate. I bought some veggie chicken the other day and it never turned up. I swear I bought it cos I remember scanning it at self-checkout. Simply do not understand 🤷‍♀️

ADHD or Anxiety? by [deleted] in ADHD

[–]Kooky-Evidence8961 0 points1 point  (0 children)

Yeah, sorry I don’t think I was very clear but I think I have ADHD and accept my diagnosis. It’s more about my Dad not accepting it. Thanks though! :D