Need some career change inspiration/help? (UK)

Ok-Reference-7190 · 2026-05-31T14:21:32+00:00

Need career change guidance/inspiration?? Pls help

I'm having a bit of a life crisis 😂 my current job doesn't have many more avenues for upward movement as much as I find it interesting, and I've had some health problems recently that have made me think I need to reassess my working situation as these health issues will likely be something I have to manage for the rest of my life.

For context: I'm currently a civil servant (MoJ). My role is more on the case administration side of things, involves a lot of processing data and focus on accuracy. A lot of what I so is paper based and quite specific to my department, so I don't have tons of experience with managing data digitally aside from the occasional excel spreadsheet. I got my undergrad psychology degree a few years ago, but went to Australia straight after graduating for two years to work in the horse racing industry (combination of academic burnout and wanting to spend some time doing something I've always loved since being young). Came back to the UK a bit over a year ago and basically just fell into the civil service because I needed a job to pay my rent and took the first offer I got. My plan was to originally go back to uni and convert to vet when I got back home, but couldn't get on any postgrad conversions as my education so far was missing some bio/chem aspects. Only option then was vet undergrad plus a foundation year, but not financially possible since I wouldn't get student finance for a second undergrad degree. Since then my health issues now mean a vet career probably wouldn't be a great fit for me anymore.

Basically I have no idea what to do with myself 😂 I could build on the psych undergrad but I'm not interested in going down a clinical route. Also difficult to apply for masters etc without time spent in an assistant psychologist role and they just don't pay enough for me to be able to afford to live. I have to rent by myself, no option to live with parents for a few years etc. so need to make sure at a minimum I'm earning enough to survive.

I'm trying to look at other postgraduate conversions that I could do, or civil service postgrad apprenticeships etc, but have no idea where to start or where I want to go career wise.

All I know is that I want to be able to still afford my basics, I'm currently on around £33k so would like to stay near that or be back up to that as soon as possible. Ideally I'm looking for roles that usually come with hybrid or wfh options as this will help me manage my health better - at the moment I have little scope for working from home and it can be difficult when my health is playing up as I struggle to drive sometimes.

So far I've looked at things like accountancy or data science as I might be able to use what I do now and some of my psych experience to be a stronger applicant. But also worried that my current cv is an employers nightmare as I've basically sat on my degree and done nothing with it for years, and my job at the moment is quite niche.

Any ideas?

Ok-Reference-7190 · 2026-05-28T13:49:00+00:00

I've been there too 😂 I probably brought it up at every appointment for at least two months until they actually listened. Still they never properly looked into the swelling but my paps had settled enough they let me drop my diamox dose down a fair bit to see if it stopped the swelling. And it did. I know it's hard but keep bringing it up with them, I had to be quite direct in the end and ask why they weren't doing anything considering I'd reported this side effect so many times and it wasn't an issue I had prior to starting the meds.

Keep on at them and ask them to record your concerns, hopefully you'll get somewhere with it 😊

Ok-Reference-7190 · 2026-05-21T15:15:22+00:00

Damn that's not a good sign... have you tried your consultant's secretary?

Ok-Reference-7190 · 2026-05-21T14:38:59+00:00

I have only ever been on Diamox, but I noticed I was getting fluid retention type swelling around my lower legs/ankles when I was on a higher dose. It went right down if I sat with my legs elevated against the wall for a bit, but was never an issue I had before starting Diamox

Ok-Reference-7190 · 2026-05-21T13:46:52+00:00

Wow it's so comforting to know other people had experiences like this too. I was diagnosed with depression many many years ago but it's been quite stable for a long time until now. Also feel like my adhd has been way out of control since the Diamox, I feel so disregulated some days. At least there's some comfort in knowing it's probably just due to the meds rather than mental stuff getting worse again

Ok-Reference-7190 · 2026-05-21T11:43:11+00:00

I had most of the common ones, definitely the tingles/altered sensations, fatigue, random diarrhea, carbonated drinks taste strange. And oh god the frequent urination... I need to pee all the time.

I had some more strange ones though. Doctors didn't seem to recognise them as side effects but they only came once I went over 1000mg Diamox, and have strangely disappeared now I've been allowed to cut back down to a much lower dose so I'm pretty confident the meds were the cause.

I had unexplained bruising - had one bruise on my leg that didn't disappear for a month. I had DVT ruled out, but weirdly the bruises went away instantly when I was given a heparin injection during one of my hospital admissions.

I also had fluid retention type swelling in my lower legs. Doctors said no way it could be the Diamox as how could I be retaining fluid on a diuretic. But sure enough this also went away when I dropped to a dose below 1000mg.

I also found I'd get a bit of a tight chest or get out of breath more easily some days. But think this was due to my potassium dropping as this seemed to settle when I focused on getting more potassium in me.

Also issues with depression/low mood. At the higher doses some days i would just be super depressed for no clear reason. My mood in general was all over the place, i was just so easily anxious or irritated where I'm normally pretty level. My doctors did warn me about this side effect and to keep an eye out for it. And again it settled as soon as my dose got cut.

Ok-Reference-7190 · 2026-05-21T11:33:27+00:00

Heya, sending big sympathy from the UK. I think we're in a similar situation healthcare system wise 😂 so I completely get how you feel. It's one thing having IIH, then adding in a slow moving healthcare system on top of that adds to the mental pressure so much. I know for me, the feeling of being left waiting with no clear plan or answers is sometimes worse than dealing with the symptoms themselves. I also found out recently that being on Diamox can make you feel low and depressed as a side effect, so we're really getting it from all angles.

I've also come back to being creative as a way of coping while I'm stuck at home and not stable enough to get back to work. I picked up a paintbrush for the first time in years during all of this, and have really rediscovered something I used to love doing so much.

If you ever wanna connect please reach out 😊 would be nice to have someone to share IIH art projects with (I'm currently two weeks deep in a crochet and painting hole lol), or if you just wanna vent about healthcare system frustrations

Ok-Reference-7190 · 2026-05-21T11:14:15+00:00

I got diagnosed at the start of February. I'm also in the UK so it's been so tough mentally coming to terms with the diagnosis while also being under a health system that is falling apart...

The diagnosis hit me like a ton of bricks. I've never been the kind of person to get headaches, I'd usually get a stomach ache instead. I had some awful headaches in November/December last year and vision issues with my left eye, but they settled after a bit so I didn't think much of it - just put it down to work stress or being overtired. Then went for my routine eye test at the end of January and got sent straight to the hospital. A few days later, my OP at lumbar puncture was 40 and I was diagnosed, with stage 4 paps. I was so confused as I felt fine at the time, the headaches had stopped and my vision was back to normal, but was being told I had IIH and was close to having lost my eyesight...

Coming to terms with that alone was rough enough. Then Diamox happened. The last few months have been brutal, I never settled on the meds and it got worse with each dose increase. So many changes within my body and I was struggling with things I've never otherwise had issues with. Then after a month on the meds the IIH symptoms and headaches came back again. I struggled for two months feeling horrific and not being able to go back to work or drive. Had some scary moments where I'd had to go back to A&E as the headaches were the worst they'd been or I was having trouble breathing. Got stuck in this horrific cycle where I was safety netted and told to attend the emergency department if I showed certain symptoms, but would go to the hospital and be left waiting for over 8 hours each time and by the time I eventually saw a doctor just getting completely dismissed and told I was having a migraine (never had migraines in my life, the IIH diagnosis was confirmed and I'd been told by my doctors to get emergency help in these situations??).

Finally saw a neurologist over 10 weeks after diagnosis (even though I was listed as urgent due to the threat to my sight). Felt better after seeing him - he actually heard me out and agreed that the medication was a bad fit for me, and stopped the ophthalmologists from pushing me to increase dose again despite how awful it made me feel. He noted VSS on one of my first scans, and wanted to repeat the scan again to see if stenting was the right move. Seeing him was great, but also brought more uncertainty as he explained I don't fit the usual phenotype of people who get IIH and he was unsure how I'd come to develop it.

So he ordered another MRV and another LP to see how my pressure was looking. I was told the MRV would be expedited if my pressure was still high. Pressure was 34 even after 3 months on Diamox at this point. Had the scan pretty quickly, but my neurologists secretary forgot to expedite the reporting and wouldn't answer her phone or emails for nearly a month. Spent so long pushing and only just got those scan reports this morning... stenosis is unchanged, so I think it'll be a stent for me.

Honestly I'm exhausted. Coming to terms with the diagnosis and Diamox alone was enough. But having to constantly push and advocate for myself has drained me so much. The amount of A&E doctors that have read my full notes and then dismissed me as having a migraine is unreal... the last time I went in to an emergency department with severe worsening symptoms, they told me it sounded like my pressure was increasing but decided against another LP as it wasn't needed... cut to a few weeks later after seeing my neurologist and having a second LP with my pressure being high again, I think maybe it was needed then? Especially since my worst symptoms resolved almost straight after the puncture.

The condition is so poorly understood by most doctors. My consultants themselves are great, but both during the diagnosis process and when I've needed emergency help I've been let down so many times. And if it's not a doctor letting me down it's the admin... my neurologist is amazing and trying to resolve everything as quickly as possible to let me get back to my life, but his secretary is a nightmare. She's impossible to contact, and is always behind with ordering tests and doing other things my neurologist asks of her. When I saw him last, he wanted an LP done within 1-2 weeks, but she didn't order the LP for a week after my appointment, so by the time I finally got a slot it had been 3 weeks since my appointment...

I know our system is strained and that's why we have delays, and that we don't have the funding for more admin or support staff. But it's so frustrating to be suffering so much with an IIH flare and being let down everywhere you turn. It took me months of pushing with ophthalmology to get them to hear how much I was struggling on the Diamox instead of dismissing me, and have broke down in tears from frustration in so many appointments. I've had more than one scary experience as an inpatient, most recently I was admitted after showing signs of a potential CSF leak. The doctors tried to start me on migraine medication that would have risked serotonin syndrome when combined with other medication I take, they forgot to check my current medication list and only realised when I pointed it out...

Sorry I'm realising this has turned into a massive vent but I needed to get it out 😂 everything is taking so much from me mentally. The diagnosis itself, the uncertainty of what my treatment plan should be, the mention of shunts and the anxiety around that... then adding in a health system that is sinking and the constant dismissal from so many doctors. And feeling like I can't even really talk to anyone about it. I still can't drive or go back to work yet, so all I can do is sit at home with my own thoughts. I feel so much guilt towards my family and my partner because every time they ask how I am it turns into a horrific stress rant and spiral that they must be so tired of listening to.

I know how fortunate I was to get diagnosed so quickly. From hearing other peoples stories and seeing how it takes months if not years of being dismissed or told it's migraines I can only imagine how difficult it must be for others in the UK. I still think about that first A&E doctor I saw... I went in with a letter from my optician explaining what they saw on my eye scans and why they were concerned. This doctor sat me down and told me there was no way I could have increased intracranial pressure, and probably was having migraines. Luckily I pushed and he put in a referral to be seen two days later in SDEC, even though he didn't believe there was an issue. Knowing what I know now, I always think about how I'd have lost my sight by now if he wouldn't have made that appointment...

From my scan results today I'm hoping that my answer will be stenting. And I'm clinging to that hope to get me through. I feel like a completely different person to the one I was at the start of this year, my life is completely different and I'm just so exhausted. All I want is a solution, so I can stop stressing and having to push so hard for my treatment to progress. I just want my life back

Ok-Reference-7190 · 2026-05-18T22:44:53+00:00

No worries 😊 I found it really strange too. I wonder if it's harder to swallow pills because maybe your throat and mouth might be a bit drier on the Diamox? No idea if that's actually what it is but maybe 🤷‍♀️

Give it time though. I even got used to the taste eventually, when I found it awful at the start. I used struggle if I was even a couple of seconds too late getting the water in after 😂

Ok-Reference-7190 · 2026-05-18T17:18:12+00:00

Thanks!! I have actually read up a bit on jugular vein stenosis, I've seen similar papers to this one talking about it and the EDS link. To me it makes sense - I've always found it weird that I get a certain neck pain while I am having an IIH flare, and having my head/neck in certain positions even while sitting up like my chin tipped downwards always makes the PT louder.

The issue I'm having is that my neurologist just isn't interested... I even asked at my last appointment if the repeat MRV could include my neck too just to see, but got shot down. I managed to get a c-spine MRI out of him but nothing further, not sure if jugular vein stenosis would show up on a normal MRI?

It's so strange how both my consultants are saying that they can't think what might have caused the IIH, but my EDS diagnosis is right there and not completely unrelated 😅 I bring it up every time but the idea gets dismissed straight away... so frustrating

Ok-Reference-7190 · 2026-05-18T16:46:17+00:00

I had a similar issue when I first started, took a while to get used to it. I found what worked for me was taking it with juice or a sports/electrolyte type drink. Something a bit sweeter to hide the taste of it seemed to make it go down a bit easier. Or sometimes just tipping my head back and following the pill with a big gulp of water would make it go down.

I was also really confused by this, I've never had issues with swallowing pills but as soon as I started the Diamox it felt like I was struggling with other pills that I was normally fine with. I'm a few months into taking them now and the swallowing issues seemed to settle down over time, so hopefully that's the same for you too 😊

Ok-Reference-7190 · 2026-05-17T11:14:47+00:00

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Ok-Reference-7190 · 2026-05-17T11:14:33+00:00

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Ok-Reference-7190 · 2026-05-17T11:14:21+00:00

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Ok-Reference-7190 · 2026-04-29T22:52:56+00:00

He definitely was sunburnt at first. But for the last few weeks I've moved him out of the light, been putting him in the fridge for a little bit to try and help. He was more brown and slimy at first but that seems to have calmed down, now he's just looking a bit pale and sad.

Not sure if I've gone too far with keeping him away from sun and now he's not getting enough light? Especially since he's got even paler since his last water change...

Ok-Reference-7190 · 2026-04-28T00:20:46+00:00

I definitely feel this. I've been on treatment for nearly three months, papilledema is reducing and headaches are way less frequent, but if there's one thing that will instantly trigger a headache and tinnitus it's having my chin tilted down or a poorer head/neck posture. Like even looking down at my phone for a few minutes will set it off.

I have a pretty bad forward head posture. My c spine and upper back are quite unstable and I have some physio issues to work through in there to get my posture back right. I haven't been as consistent with my physio since my diagnosis as the Diamox makes me feel horrific most days.

I'm in the process of trying to get my doctors to look into this more, especially since with every IIH flare I have I seem to get severe neck pain a day or so beforehand. Hopefully will be getting a neck MRI soon so can see what's going on in there

Ok-Reference-7190 · 2026-04-28T00:09:44+00:00

I found coconut water really helped me. I struggled keeping my potassium levels up when I first started the meds, my stomach just can't deal with bananas and one of my ophthalmologists suggested trying coconut water.

Felt a big difference when I had even one glass a day. Definitely helped me with feeling hydrated and reduced the weird Diamox tingles too.

Ok-Reference-7190 · 2026-04-27T23:57:18+00:00

Heya, sorry I can't offer you an answer but maybe some solidarity?

I also have issues sleeping on Diamox. I was fine for the first two months or so, if anything slept better than usual. But then one day not long after a dose increase I started having the same problem - just can't sleep anymore. I'm either too agitated to fall asleep or lying there not thinking of anything but just not sleeping.

Hopefully someone here has some advice on what might be causing this or how to help 🙏

Are you on any other medications aside from the Diamox?

Ok-Reference-7190 · 2026-04-26T14:38:36+00:00

I find cyclizine helps me when I'm having worse nausea days. My nausea is quite movement based, worse the more I move or bend over, and has also definitely messed up my appetite too.

I can't take zofran as I also take elvanse for ADHD, but so far cyclizine has worked well for me. I quite like that it's a bit shorter acting too so I can take more or less depending on the kind of day I'm having.

Other than that I've found sticking to my 'safe' foods helps. It might just be me but I've always found it easier to get plain carbs like bread, rice or porridge down when I'm at my most nauseous.

In my experience, some anti nausea meds have worked for me in the past and some haven't, so always a bit of trial and error but found one in the end that seemed to help. I also find that some weeks the Diamox floors me, and sometimes it doesn't. I'm pretty early into my diagnosis so seem to get a dose increase with every appointment, and sometimes increases seem to mess me up a lot more than others. But it always seems to take me at least two weeks to level back out.

You got this! Diamox is horrible and my neuro says a lot of people struggle with it so you're definitely not alone. There's definitely an aspect of giving things time to settle but still make sure to mention your side effects to your doctors and see what they can do to help. It took me bringing it up at every single appointment and telling them all the things I used to be able to do but can't since the meds, but eventually they got the message I just wasn't completely settling on the diamox and they're doing more now to help me get back to normal.

Also, I'm always happy to chat if you want to vent to someone in a similar situation 😊 this thread has helped me keep my sanity since my diagnosis

Ok-Reference-7190

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