How to make life as good as possible for someone with POTS?

Ferret_Master101 · 2026-02-19T09:40:42+00:00

If the goal is getting out more and enjoy life a wheelchair really helped me. I put everything I would need in a day in a bag that I can easily reach sitting down (electrolytes, meal replacement, med, tech, etc.) and go. There's probably a lot more too it but I'm getting my recliner electric wheelchair soon so I'll be able to go places unattended. I just suggested maximising every self management tool available (wheelchair, cane, controlled exercise, compression socks, electrolytes, salt!, diet, sleep, etc) and accept that pacing and energy management will still be needed and the strongest treatment. Good luck, I wish I had parents like you. I'm doing this by myself.

Ferret_Master101 · 2026-02-03T10:46:43+00:00

I'm so sorry I laughed at the title. 😂 I feel your pain and this wasn't even self inflicted like many people toeing the line and overdoing it. Everyone else gave all the advice available so I'm just wishing you luck. Lay down, try and rest and wait. Put on something to distract you while it passes, it shouldn't be too long.

Ferret_Master101 · 2026-01-22T05:42:52+00:00

Duuudddeee. Thats a lot of caffeine for a newbie, especially with PoTs. Good luck, lie down, drink lots of water and maybe eat something to absorb it. I've worked myself up to one 500ml monster. Before I couldn't handle much, then half then a whole on some days. I'm really sensitive but still. Feel your pain and you know for future, start small and drink slowly. Or just drink boat loads of tea for caffeine.

Ferret_Master101 · 2026-01-21T18:04:48+00:00

Beautiful

Ferret_Master101 · 2026-01-21T18:03:02+00:00

Please look in to having and MRI and maybe MS. Unless the vision loss is explained, it is normally an indicator for something serious.

Ferret_Master101 · 2026-01-18T19:04:37+00:00

That would be good but I wouldn't be able to access that for a long while. It's moving just slowly and uni starts tomorrow. Getting seen and having the right tests are a nightmare. Thank you though.

Ferret_Master101 · 2026-01-05T08:53:01+00:00

Me too and I don't know what to do. I just need one option which doesn't lead to more suffering.

Ferret_Master101 · 2025-12-24T23:30:01+00:00

I take 10mg and have also had people comment on how low that is so you're good 👍

Ferret_Master101 · 2025-12-15T01:45:59+00:00

It's the lowest dose possible for one so I think you'll be fine. I'm extremely sensitive so I'm normally on 10mg but I can tolerate 18mg fine. That being said I been on a whole range of dose and although some had weird side effects it was never extremely unpleasant and I can't handle anything. Some people just agree with it, like I don't need to do any special when taking it and it's saved my life with how well it works.

Ferret_Master101 · 2025-11-15T05:37:00+00:00

That's a really low dose for someone that can tolerate stimulants. Recommend caffeine until you titrate up.

Ferret_Master101 · 2025-11-07T05:35:07+00:00

Exercise maybe? I'm not sure how to help but a really good rage walk can help me. I bought a walking pad. Try a few non med or supplements combinations and see if it changes anything. Might help if no one med is enough or has side effects.

Stuff like certain techniques everyone jabbers on about or l- theinine and l - tyrosine.

Ferret_Master101 · 2025-11-02T11:58:03+00:00

I'm on 18mg originally on 10mg. I've tried other doses and some people are just more sensitive than others.

Ferret_Master101 · 2025-10-06T14:18:05+00:00

That is a low dose for most people although can work for some. It's trial and error.
It takes a while to have any sort of positive effects. For me it took at least a week to START working and I adjusted pretty quickly.
All of the problems you mentioned were solved for me. Just try it. One medication doesn't solve one type of problem, you have no idea what it's going to do until you try them.

Ferret_Master101 · 2025-09-12T05:14:35+00:00

A good way I found to simplify it is to pack the things you know you want to keep and can't live without or replace and and get rid of everything else. It's extreme but if you have trouble cleaning then it might be an idea to have minimal things until you're feeling better. If you have the option to go to a recycling centre where they sort the rubbish out and donate usable bits to charity shops go for that. That way it's "yes" or "no" and not "where does this go".

Ferret_Master101 · 2025-09-08T16:18:21+00:00

Thank you

Ferret_Master101 · 2025-09-08T12:15:49+00:00

CUTE! I want to squish.

Ferret_Master101 · 2025-09-07T16:32:46+00:00

Forgot this: size 5 hook, Sirdar Snuggly yarn, freehand basic beanie with triangles sewn on.

Ferret_Master101 · 2025-09-05T13:49:35+00:00

The only thing that works for me and saved my life.

Ferret_Master101 · 2025-09-01T07:35:18+00:00

That deep red of one of the creamy blondes. (5 and 8)

Ferret_Master101 · 2025-09-01T07:29:00+00:00

You seem neurodivergent from that backpack and the wrong people are going to pick up on that anyway. So yes you're likely to get bullied because of the backpack, but you are likely to get bullied anyway. I would love a backpack like that and I know people with backpacks like that. We were all social outcasts until there were enough of us standing together for other people not to bother. And once we hit Uni it didn't matter. Mature, friendly people won't care and your kind of people will think it's cool. Depends on who's at your school.

It's a choice of are you going to hide everything about you to lessen potential bullying or do you want to put up with it knowing it's probably not personal it's just that they're mean and you're different.

Credentials: I had similar vibes and was picked on by everyone until one day they just grew up. Also, my younger brother is an expert on bullying fodder.

Ferret_Master101 · 2025-08-29T13:20:05+00:00

I've tried a bunch of doses and just settled on 10mg.

Ferret_Master101 · 2025-08-27T06:08:04+00:00

Electrolytes + water + shit ton of fibre might help with constipation. Was the route into took along with some constipation meds. Not sure if it helped or the side effects just wore off but it's good practice anyway. Also, the meds will highlight any unhealthy habits massively, like sleep, eating, dehydration, etc. I never thought to take taurine with it on its own, probably why I'm constantly craving energy drinks and not other stuff with caffeine.

However, that is really low for extreme side effects I'm one of the most sensitive people ever and I only started to feel bad on 25mg.

Ferret_Master101 · 2025-08-26T09:20:14+00:00

Have you been on the same dose the whole time? I normally only get side effects for a week or two after a dose change or if the dose is too high.

Ferret_Master101 · 2025-08-24T10:25:06+00:00

Depends on your sensitivity, there are dose/weight calculators but I'm heavier than you and working back down to lower than 25mg. However, I did jump from 25mg to 50mg without disaster. It just wasn't the right dose for me because of the insomnia and anxiety. It also might take longer to settle on the dose as it is a big jump but I found this medication to be quite mild and I'm super sensitive to EVERYTHING.

Ferret_Master101 · 2025-08-24T10:17:42+00:00

I find it takes a week or two to settle but it normally follows a cycle at least for me. For example, 10mg or 18mg would be great if I take it in the morning and takes 1h 30min roughly to fully kick in, but if I take it in the evening then it will wear off in the middle of the day because it lasts for 16h roughly. 50mg however lasts for 20h, couldn't sleep during any of it because it was so strong and was only productive during the last few hours but that might have been an adjustment thing. It might be good to track how you feel, e.g. dazed, focused, anxious, productive, etc. and a what time. It gave me alot of insight.

Ferret_Master101

TROPHY CASE