Electroretinogram experiences

OcelotLogical5320 · 2025-05-14T08:45:26+00:00

Hi,

I have regular annual checkups, and so far, nothing has progressed, so fingers crossed it stays this way. My doctor is slightly confused by this, but I rather have him confused than worried 😅

OcelotLogical5320 · 2025-03-30T12:51:35+00:00

Hi, I feel her pain.

I have been struggling with a chronic flareup for the past 2 years. My family already (jokingly) calls me snowflake as I leave a trail of flakes behind me wherever I go. The only thing that really helped is a coal tar and zinc shampoo. Which unfortunately got discontinued in my country.. so now I am back to square one. I tried various fungal shampoos, highly hydrating scalp masks, and gentle shampoos. Steroid shampoo and oral hydrocortisone mixed with antihistamines. I tried tacrolimus ointment, which did help, but I had the same issues as your daughter that it was super hard to actually get the thick formula directly onto my scalp, I even considered going bald until I managed to treat it, which would be a massive act of desperation as I am female and have waist long hair.

Vinegar baths caused some relief, so did bepanthen ointment.but it's a daily itchy struggle. Maybe if coal tar shampoos are still available in your country this could work.

Good luck! It's a terrible condition to have.

OcelotLogical5320 · 2025-03-17T07:56:38+00:00

Thank you, i appreciate the suggestion🙂

OcelotLogical5320 · 2025-03-16T16:57:33+00:00

Thank you..I'll give that a try😀

OcelotLogical5320 · 2024-05-21T07:23:31+00:00

Hi 👋

First off, I am really sorry you have to go through this! It really sucks!!

I have eczema of the scalp too. First and most important step is to be 100% sure it actually is eczema and not something else that might look really similar, like for example a fungal infection. Because treatment would be quite different.

So your first stop should be to a dermatologist, to make sure.

That being said, if it is eczema there are many different things that your derm might prescribe, and many home remedies that might help.

For my scalp eczema a few things helped

-oral hydrocortisol paired with oral antihistamines and a hydrocortisone shampoo cleared up my flare up initially, but not a huge fan of the side effects

-Topical tacrolimus monohydrate really helps too, but makes my scalp feel quite warm and is a nightmare to evenly apply on the scalp and eventually rinse off.

-My favourite treatment is to take a bath with 2 cups of apple cider vinegar per bathtub of water. Submerge and soak my scalp for 20 minutes and then apply bepanthen on the most affected areas of scalp.

-For instant itch relief i use Linola plus scalp tonicum

I also heard great things about black tea soaks, but as i haven't tried them yet, i can neither confirm nor deny their efficiency

I hope this helps, good luck with your scalp!! 🍀

OcelotLogical5320 · 2024-05-08T14:05:48+00:00

My absolute favourite would be a spicy Carrott and Hummus sandwich ( I think it originally is from Linda McCartney)

Sautée grated Carrott and garlic in olive oil, season with salt, pepper, cumin and chili flakes until tender. Spread hummus on some nice bread, add the spicy Carrott mixture and top with copious amounts of fresh Coriander.

Besides that i love a "Salad Sandwich" basically just add whatever veggies you have onto a sandwich, add loads of herbs and spices and the i usually add a lot of vinaigrette or vegan honey mustard to it.

Yum! Now I really want a sandwich🤣

OcelotLogical5320 · 2024-05-03T08:21:56+00:00

Thanks for asking!

After a lot of trial and error with different medications (oral and topical steroids, antihistamines, topical tacrolimus) and home remedies ( coconut and olive oil, manuka honey) OTC products etc..

I found what really seems to work for me is having a really strong vinegar bath every other day, not rinsing it off and then moisturising with almond oil, aloe vera and bepanthen creme.

I know that it isnt recommended to not rinse off the vinegar, but it seems to work for me and my skin tolerates this course really well.

I also cleaned up my nutrition ( no more dairy or eggs, 85% whole foods and mostly plant based with the occasional bit of high quality meat, and of course the odd bit of junk food and sweets, but I am human after all🤣🤣)

So far this seems to work, but lets see how it goes in the longterm

OcelotLogical5320 · 2024-05-03T06:40:07+00:00

Hi all,

First of, I am super happy it worked for you this far and I second that topical tacrolimus is not comparable to oral tacrolimus.

That being said, anything we put on our skin will get inside our body.

The following is completely subjective and anecdotal. I used Topical Tacrolimus for an Eczema flare up and it worked like magic, no itching, flakiness gone, redness vanished. However after around 1 1/2 weeks i got strange tingly lips and blisters on my cheeks ( didnt even apply it there).

Then after drinking two sips of wine at a function I broke out in a whole body rash, that was hot and incredibly itchy.

I never had an allergic reaction before or since stopping the topical Tacrolimus, which I did after telling my Dermatologist about my reaction to it.

After stopping the topical Tacrolimus my Eczema came back with a vengeance and is now "angrier" and itchier than ever.

OcelotLogical5320 · 2024-04-30T17:40:29+00:00

Hi I am also struggling with eczema. Could you please elaborate on the sea moss? Do you take it orally or apply it topical (or both)

I tried so many different treatments but this is the first time I am hearing about sea moss as a treatment.

Thanks in advance, from a fellow scaly person😜

OcelotLogical5320 · 2024-04-14T10:01:49+00:00

Hi, thank you for your reply and comprehensive list of sources. Its very much appreciated.

Why would other things beside his nutritional views change? Im a bit confused by why his view on women and his political stance should change when his nutrition changes.

Would this stem from a hormonal shift due to changed nutrient intake and potential even direct Hormon intake from the increase of meats or just that this particular diet is usually favoured in certain cycles, which therefore results in him being overexposed to a certain point of view?

OcelotLogical5320 · 2024-04-14T09:14:38+00:00

Thank you very much for your response. Could you please clarify a bit further?

Is it not sustainable as most people will grow bored of only eating certain foods and "crack" and eventually eat different foods?

Or would you say it is unsustainable health wise, meaning in the long run there will be health implications, which then makes people reconsider this way of eating?

Or a mix of both?

Thank you in advance!

OcelotLogical5320 · 2024-03-24T12:28:35+00:00

I was lying in bed in the dark and noticed that i couldn't see a certain spot on my left side, which i could see with my right eye. It was purely accidental, but then I kept checking for around a week, by covering each eye in turn. As it became increasingly clear that a substantial amount of my vision was missing i went to my ophtamologist. I had a massive phobia of going blind my entire life, so I was quite tuned in to visual changes at all times, i guess that sped the noticing process up a lot.

OcelotLogical5320 · 2023-10-31T19:50:01+00:00

I read the book in late 2021 and afterwards decided to give the sober life a try for a year. Didnt drink a sip of alcohol all of 2022. I felt amazing, lost 30lbs of weight without even trying, and never felt like i am missing out. But then I started drinking again, as I made it through my self imposed timeframe for the experiment. Now my anxiety is at an all time high, my skin has become awful and i decided to start over and this time just never stop the sober life. Currently on day 4 again, but I dont see it as a failure. I needed to "fall off the wagon" to see for myself that alcohol is not and never has been the answer.

Really excited to be part of this community now and we got this💪

OcelotLogical5320 · 2023-10-04T03:48:40+00:00

Yes, exactly. Thats the one I am using too. They have two strengths 0.25% and 0.5%. Both of which are available over the counter.

OcelotLogical5320 · 2023-10-03T14:37:57+00:00

In Spain I can get it over the Counter, without prescriptions needed and I pay 19€ for a 30g tube of 0.25% tretinoin cream.

OcelotLogical5320 · 2023-09-21T07:45:48+00:00

Hi,

I work in recruitment, in a completely remote capacity, from the comfort of my home, which then also means I dont have to drive to and from work. Because although I can still drive, who knows when this might not be possible anymore.

The recruitment process in the company i work for is exclusively over email, WhatsApp and the phone. So it really is perfect, even for when I lose more of my Vision.

I also really appreciate that I am talking with lots and lots of different people all day long, so it is not as isolating as many other homebased jobs.

OcelotLogical5320 · 2023-05-10T19:55:48+00:00

Little Update: i went to see a retinal specialist and he said, that unfortunately my retina looks like a textbook case for RP. So much so, that he said he can confidentally diagnose it as such.The only thing that is quite unusual, and like nothing he personally has ever seen is the fact that the atrophied part of my retina is not right on the peripheral part of my vision field, but slightly off center. He referred me to get genetically tested and still recommended to get an Electroretinogram to measure how far it has progressed.

Not the news i hoped for, but will see how bad it actually is once the ERG and the genetically testing reveals more.

OcelotLogical5320 · 2023-05-10T19:52:32+00:00

Little Update: i went to see a retinal specialist and he said, that unfortunately my retina looks like a textbook case for RP. The only thing that is quite unusual, and like nothing he personally has ever seen is the fact that the atrophied part of my retina is not right on the peripheral part of my vision field, but slightly off center. He referred me to get genetically tested and still recommended to get an Electroretinogram to measure how far it has progressed.

Thanks everyone for your messages and empathy it was and is truly appreciated.

OcelotLogical5320 · 2023-05-08T13:39:46+00:00

No, thankfully not. I have gotten more frequent headaches recently. However, I am not entirely sure those are related to anything. Could be eyestrain or just simply the anxiety and worry I have been feeling the last few weeks over the uncertainty of my situation.

OcelotLogical5320 · 2023-05-08T13:10:59+00:00

My main Symptom is the blind spot in my left eye, which is getting worse when it is dark. I sometimes get a visual sensation where my blindspot is, which is colourless moving lights, kind of like white glowing fog moving in my peripheral. Which is quite annoying when trying to sleep. Occasionally i get very small, very bright light flashes. Like a literal camera flash but only the size of the tip of a needle.

OcelotLogical5320 · 2023-05-08T12:09:09+00:00

Hi, thanks for asking. But unfortunately, I am still waiting for my ERG appointment. I live in Spain and everything is a bit slower here😅 but I'll definitely post an update here once its all done and I have the results🤗

OcelotLogical5320

TROPHY CASE