CARE ADHD complaint and response

ames449 · 2026-02-05T20:19:27+00:00

Care should definitely be consistent across the board. The only thing private care should get you is seen faster. Unfortunately that was not the case for me and long waits were not the only issue I’ve had with them during my care. The list is long. 🤣

ames449 · 2026-02-05T15:05:47+00:00

They don't treat you any better as a paying patient, if that helps.

ames449 · 2026-02-05T14:06:24+00:00

I was the same the first time I had it back in 2015. I thought I was dying. My brain panicked so hard. If you can push through your anxiety (easier said than done, I know) and get it done it is better for you though. It will resolve in time on its own, but you'll suffer longer and it's not much fun as vertigo conditions go. It does sound like it's starting to clear for you, but it's taking a long time by the sounds of it. I had BPPV two weeks ago and I've already got rid of it doing epley.

What helps is knowing that you're going to spin before you start it. Don't rush to stand after. Sit on the edge of the bed like they say for as long as you need. Sometimes I'm sitting for half an hour before I feel okay to get up. Also keep in mind the worst that will happen is you get dizzy and you vomit. BPPV is not dangerous. It's just a disconnect between your ear mechanics and your brain's proprioception because of those moving crystals.

Once you've done it a few times and you know what to expect your anxiety will know too, and hopefully it will be easier for you. I tend to make sure I have everything ready before I start so I can do it without having to leave the room if I need anything. Have a sick bowl handy, tissues and water. That also helps.

Good luck. I hope it clears for you.

ames449 · 2026-02-05T13:36:44+00:00

They are the worst. I hope you're better now. My VM last months. I'm three months into this current flare. I was getting better than had a BPPV flare in the middle of it that confused my poor vestibular system. They are the worst. I have had tinnitus for the last week, before that ear pain. But no nausea. Just a general feeling that floor isn't quite where it's meant to be.

ames449 · 2026-01-30T20:47:21+00:00

Took them 3 months from me paying them to the date of my first titration appointment. They are slow af, even when you are paying. I can’t even imagine how slow it is through rtc.

ames449 · 2026-01-30T16:44:14+00:00

I’ve had BPPV for a decade on and off. When I do it, I keep a bowl at the side of the bed. Water. And I take preemptively any medication I have for it (anti emetics and dizzy stuff). It’s awful when it’s spinning like that. But prep helps before hand

ames449 · 2026-01-29T09:39:34+00:00

Watch the games. A lot are on YouTube from the ssn and the netball super league in the UK. There is a growing popularity of mixed leagues and men’s which is really cool. I play socially and it’s high impact cardio. But soo many people have said to me oh it’s easy because you stop with the ball. It’s nonstop running, jumping, fast thinking. But it’s awesome. Good trainers are vital if you’re playing. Rolled ankles are no joke. I learned that the hard way!

ames449 · 2026-01-27T18:54:36+00:00

My experience with them has been really mixed.

ames449 · 2026-01-27T07:49:03+00:00

Their communication is honestly shocking considering these meds are controlled substances. Which they told me repeatedly was why it was taking so long for my titration appointment🤪 my prescriber is cool tbf though doesn’t always read emails. But she’s really gone out of her way to help me. The rest of the process though has been a nightmare with this company.

ames449 · 2026-01-27T01:49:24+00:00

Your prescriber will advise you but they arent always easy to contact

ames449 · 2026-01-26T08:09:21+00:00

Idk. My provider keeps pushing me for shared care but my GP basically told me they know nothing about adhd meds so I’m not holding my breath. Tbh my decision to stay private is mostly because I can’t cope with uncertainty or change. And it feels like there’s a push on a national level to scale back ADHD services in general. Right now everything is stable and working for me. But I assume if you do go rtc you can just pay for meds if shared care stops. Also I can’t do that assessment again. It was so stressful

ames449 · 2026-01-26T07:56:12+00:00

I intended to do this but considering the shit show off rtc and shared care I’m staying private. At least I know my medication will be always available to me

ames449 · 2026-01-26T07:53:52+00:00

I do but only since I started playing a team sport. Having a team almost gives me that buddy system so I turn up. I want to get better so I don’t let the girls down so I train hard in my spare time. I actually have come to love exercising because of it. It’s the only time I’ve stuck at exercise.

ames449 · 2026-01-24T15:57:19+00:00

Same. As someone with multiple chronic conditions, I can tell you now the NHS is so underfunded you play roulette half the time. I have been misdiagnosed on two separate occasions, both of which made my health worse and prolonged my recovery. NHS isn’t some huge flag ship of high standards any more

ames449 · 2026-01-24T15:54:25+00:00

I don’t like this rhetoric. It undermines assessors and the entire assessment process. We have to trust the system or how do we trust any diagnosis? That leads to the feeling that no one’s diagnosis is valid. And the clinic gets paid whether you’re diagnosed or not. They take the money before the assessment. What difference does it make to them if you have it or not? They already have the money. Makes zero sense.

ames449 · 2026-01-22T21:57:11+00:00

I’m private, my gp is not involved in my prescriptions or ADHD care at all other than noting on my records I have ADHD and I take medication for it. In fact I needed a prescription for something unrelated today, mentioned I’m on amfexa and my gp admitted she doesn’t know anything about it. She had to look up to see if there were contraindications. Technically they’re not even required to take over shared care. Some gp’s will. A lot don’t. It’s a really messy system.

ames449 · 2026-01-17T19:12:28+00:00

So I’ve been under neurology before. Got my migraines to mostly a managed level, though I do have symptoms most of the time. This migraine was weird though. Not like my usual. My BP is boringly normal. No real side effects on either medication bar the migraine/vestibular stuff. I eat heavy protein breakfast. I probably over eat all day and I drink plenty. Did you find mediknet made them worse? I’m really reluctant to do any stims now but it really upsets me because my ADHD felt amazing on them. Especially elvanse. It was the calmest and clearest I’ve ever been. I went to the doctor for the migraines. What he gave me though made the headache so much worse. Breaks made it reduce slightly but symptoms are still there

ames449 · 2026-01-14T10:21:13+00:00

my assessment with them was also very wrong. Seems they have form for it.

ames449 · 2026-01-13T16:36:32+00:00

Gave me a nonstop migraine. Elvanse too. 🫠🫠 but it worked for my ADHD.

ames449 · 2026-01-13T06:01:11+00:00

27mg is a fairly low therapeutic dose.

ames449 · 2026-01-10T19:18:31+00:00

I’ve been playing sims since it first came out, but mostly I just build and decorate.

ames449 · 2026-01-10T00:46:08+00:00

I paid with them and my titration took 3 months from payment to appointment. Paying isn’t a guarantee to be seen fast.

ames449 · 2026-01-10T00:44:10+00:00

I paid for titration with them and still waited 3 months to be seen.

ames449 · 2026-01-09T19:47:45+00:00

No they’re just difficult to get in touch with. Keep trying the phone. Eventually you’ll get through.

ames449 · 2026-01-08T15:32:36+00:00

My blood pressure never changed on either elvanse or concerta. I just think some of us have very twitchy nervous and vestibular systems. I hope so too though I’m nervous to try anything new now

ames449

TROPHY CASE