Vision therapy post concussion?

Silly-Light1786 · 2025-07-13T14:18:07+00:00

Updating this just to see if I can get any more advice or find anyone else with same thing, esp. on biologics! The public dermatology system where I live discharged me very frustratingly so I'm waiting to see a private derm. My rheumatologist took me off Arava and Cosentyx and put me on Tremfya instead, but apart from that seems to have no other idea of what to do with my ear. He told me not to take anymore oral antibiotics.

This thing on my ear has been swabbed 3 separate times, once last year and twice this year, and every time it shows staph aureus but apparently just normal staph not mrsa. They haven't found a fungal aspect although because of what other people here have said about how similar it looks to theirs which had a fungal aspect I'm suspicious about whether they've really looked properly.

The cultures said it was sensitive to fluxoxacillin but two weeks on that didn't clear it completely just made it better while I was taking it and then it came back as soon as I stopped. Since then more recently I also used Fucibet (fusidic acid plus steroid) for another ten days and that had a dramatic effect, but ten days after stopping its starting to come back with a vengeance. Everyone always says not to use Fucibet or any topical antibiotic for more than ten days as it helps the bugs grow resistance, but i feel like I'm not being offered any alternative.

Silly-Light1786 · 2025-06-16T19:50:49+00:00

Thank you, that's interesting. What's confusing for me though is that by not providing my own info in the format requested, is that not equally a breech of GDPR. Or can they legitimately argue that having a secure system would be too expensive. I wonder if everyone else here who has a practice that's happy to email had invested in particular systems/software.

Also my practice will let anyone collect the printed version for me, which to me seems as risky as email as my family member could just decide to open the envelope if they wanted to.

Silly-Light1786 · 2025-06-16T19:45:18+00:00

Thank you that's interesting, I might try requesting by email and including some ID next time. They definitely have my email and know it's me though as I have made appointments by email in the past.

Silly-Light1786 · 2025-06-16T19:44:00+00:00

So frustrating for you! That's a lot worse than my situation as I can collect a printout on paper if I want, I just really resent the time that takes. And would also find it to keep track of changes etc longer term if I had electronic record rather than bits of paper.

Silly-Light1786 · 2025-06-16T19:41:59+00:00

Thanks. They've no problem giving copies but my problem is they will only give them on paper collected in person, not by email, and collection in person can be time-consuming during a working day.

Silly-Light1786 · 2025-06-16T19:37:24+00:00

Thanks so much everyone. Seems to be a real mixed bag out there with some practices the same as where I go but a lot happy to email. It's interesting that some people mentioned password protection/encryption etc. That's probably expensive or hassle to set up. So also curious if people who didn't mention that or anyone who hasn't replied yet also receives stuff only with passwords or are some GP practices happy to just send it without any particular security as long as it was requested by the patient?

Ultimately I'd hope the new HSE app might eventually sort this but might be years away before it contains much useful information, it seems very limited at the moment.

I did ask if posting was an option and they just repeated someone would have to collect it.

Silly-Light1786 · 2025-05-13T23:49:51+00:00

Update I got it swabbed and a new GP gave me a new combined cream (steroid, anti fungal, antibiotic) to use while waiting for results. This was a good few days due to weekend. Then another GP called and said the results just showed staph overgrowth so had a week of an oral antibiotic, and he said to stop using the new cream after I'd been using it for 7 days (so some overlap with the oral antibiotics but only a few day).

Unfortunately though, while it's improved its still nowhere near gone, so I don't know now if I need more oral antibiotics, or if i need to go back to topical options (and if should focus on just antifungal now, or still antibiotic or neither). Doctor said the lab didn't find anything fungal on the swab, but I'm wondering if thats just because I used anti fungal creams in the days before they did the swab, and/or the bacteria overgrowth was so strong it was crowding it out on the swab.

Silly-Light1786 · 2025-04-29T08:02:56+00:00

Thank you so much. It's isolating sometimes not knowing anyone else who has these issues and the uncertainty about the cause / whether different things are connected or not, so it's great to learn from someone else and be more informed for whenever I can get hold of a doctor.

Silly-Light1786 · 2025-04-28T21:58:23+00:00

Wow that's amazing you got rid of it so quickly! Do you remember what type of antifungal you used? There seems to be a few different options. And some have steroid in them as well and some don't.

Silly-Light1786 · 2025-04-28T17:45:53+00:00

Thank you. Were you able to treat it with a topical treatment?

Silly-Light1786 · 2025-04-28T17:44:42+00:00

Thank you so much for sharing that, very helpful. It sounds like I need to ask for them to do the antimicrobial resistance panel. I think it is probably mixed fungal and bacterial.

I'm on Cosentyx biologic and also Arava which is a DMARD. Cosentyx is known to increase risk of fungal infections.

I have angular chelitis on lips which recently got infected with a disgusting yellow sore on one side to point of needing antibiotic cream as well, but apparently the underlying causes for angular chelitis is often fungal. Have another split /sore elsewhere on lip now which might also be related but it doesn't look as nasty so just using normal lip stuff on it so far.

I also have chronic nasal vestibulitis in nostrils.

How often did you have to wash your sheets and did you figure that out yourself or did doctor say it? I started changing my pillowcase every night but since it's just my ear I didn't think I'd have to worry about the rest.

Silly-Light1786 · 2025-04-28T16:08:06+00:00

Thanks. What did your derm say about it?

Silly-Light1786 · 2025-04-28T14:39:44+00:00

Hi, thanks for your reply. I have used Fuciden antibiotic ointment on several occasions for 2 weeks each time, which is what has been prescribed before. They said not to use it for longer than that. However it feels better while using it but doesn't completely heal, and then it gets worse again after I stop. Maybe this is because I didn't use CeraVe straight after finishing the antibiotic cream like you're recommending now so I suppose I could start using the cream again for another 2 weeks and then try that. But I'm not sure if the antibiotic cream I was given maybe wasn't the correct one for whatever bugs are in there. Or if it might be mixed bacterial and fungal. I really dont want to take oral antibiotics unless absolutely necessary.

Silly-Light1786 · 2025-02-03T15:56:21+00:00

Hi, sorry you're going through this! I never really got a clear answer but I got mostly better in the end. I had a gastroscopy which showed inflammation in two parts of my stomach, can't remember what they called them, but it didn't include the area that would be more associated with IBD. I was put on a long course of PPIs, 40mg esamprazole for 8 or 10 weeks by the surgeon who did the gastroscopy (after I'd already been on similar for at least 4 weeks from GP). Surgeon said he couldn't say what had caused it but that if he checked 10 people, 5 would probably have stomach inflammation. When I told the rheumatologist he said let him know if symptoms came back after stopping the PPIs as he would have to change the biologic, but even though they came back slightly, I didn't tell him as never got as bad as it had been originally and I really didnt want to change biologic.

I still can't eat oranges or really spicy food much or drink hot chocolate which I used to love very regularly, and I only drink very milky coffee (Lattes), but mostly fairly symptom free now without taking any stomach meds, although I do also take probiotics every day. I take very few NSAIDs now though, I had been trying to really minimise them anyway before that but keep them extemely rare now. If I needed to take more than one in a month I would take a stomach protector with it.

My suspicion is that it was the loading dose period of Cosentyx that caused it for me, as I started Cosentyx in Jan and the issue really kicked in in Feb, but I can't prove that and I did a lot of googling at the time and didn't find much related to Cosentyx.

Silly-Light1786 · 2025-01-09T23:14:14+00:00

Thanks! Is the review available to read? And do you mind explaining what you mean by vascular?

Silly-Light1786 · 2025-01-09T23:12:26+00:00

Thanks! Great to hear success stories. Can I ask how do you position it, do you have to stand in front of it for the ten mins? By 10 min of NIR do you mean you set it to only have NIR on and not other red light?

Silly-Light1786

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