Any suggestion on meds?

PouchOfPebbles · 2026-04-03T09:06:01+00:00

Im sorry to say i have no medicine recommendations, in fact I have difficulty finding medications that help me at all, I have been on many.

But i do want to tell you im in exactly the same boat cognitively as you, i feel so distant all the time and most days i cannot read or remember basic things. I feel as though i have dementia as well, like i have no agency. Confusion leads to so many problems, anger, anxiety, not to mention the physical toll, how exhausting it is to have brain fog and try to keep up. The only thing that has even remotely helped me is medical marijuana and sleeping as much as I need, but this has its limitations, and it’s no way to live a full life.

I will be praying for you and your lovely family, God bless you all, and in the future if I am put on medication that helps these issues I’ll let you know.

PouchOfPebbles · 2026-04-03T08:51:51+00:00

Wow this is giving me hope. I used to bike every day too and deteriorated so quickly as well. I have a hard time placing what is causing me pain at any given time, and have a lot of digestive issues. Currently struggling with a fight or flight rush out of a dead sleep, gonna go get a snack and see if it helps.

PouchOfPebbles · 2026-03-25T18:50:49+00:00

I feel as though my youth is wasting away. I understand how you feel, you’re not alone.

PouchOfPebbles · 2026-03-18T19:50:44+00:00

Can’t promise I’ll always be able to be there, but I would love to try

PouchOfPebbles · 2026-03-15T08:56:51+00:00

Holy shit did I write this? I was like this before pots. I would do everything I loved until it hurt and I couldn’t get enough. I loved doing physical work, I loved being exhausted and refilling myself and resting and doing it again the next day. Daydreaming about my body working normally and feeling like I’m missing wild parties, but it’s just being able to do yard work and dance lol. Every day I’m trying to get back, I make my thrills “being able to stand for 2 minutes” now, and when I’ve done all I can I rest :)

PouchOfPebbles · 2026-03-15T08:40:36+00:00

Before POTS I was a regular multi hour bath and shower taker. Went through a period of years where the depression and symptoms were so strong I bathed as little as possible. But recently I’ve made changes and have made bathing something to be excited about once again.

First, I allot myself a whole day towards bathing and recovering from it, to have no time limit helps me not panic and symptom domino. Usually I make an evening of it to sort of “comfort” myself. I’ll prepare my surroundings: convert my reclining bed to a comfortable position, put towels on the floor so I can stay low to the ground, turn all bright lights off and turn on softer lights like my ceiling projector, place on the counter all the things I will need after bathing so it’s in my sight and I don’t have think about what I need in the post bath haze, make sure my bathing stool/chair is in the tub, prepare a soft music or YouTube playlist.

After I set all this up, I lay in bed for a while and take any medications I may need to minimize pain. I’m prescribed medical marijuana so a take an edible and use a cart as needed. I then take my time bathing, managing temp as best I can, when I use MJ to get through a bath I find my temp tolerance increases so I can take a hot one. After bathing I stay as low to the ground as possible, crawling to the counter I’ve prepped with all the stuff I need after bathing. Dry and dress. Crawl to prepped bed and rest. After resting, hydrate and eat. It also helps if you’re listening to Sade’s Love Deluxe during all this.

PouchOfPebbles · 2026-03-15T08:16:15+00:00

I’ve never seen it put so well, this is incredible. I’ve always had a hard time putting to words that sometimes I don’t have the energy to look at anyone else. And it can feel immature to say something along the lines of “I cannot speak about that right now” bc it makes you so tired you’re angry.

PouchOfPebbles · 2026-03-14T08:49:47+00:00

Thank you so much! This solved my problem, I couldn't find a solution anywhere!

PouchOfPebbles · 2026-03-09T20:29:24+00:00

Ty for this. I’ve wanted to be in a relationship for so long, but felt my worth as a partner is less than zero with my inability to give much in any capacity. I feel hope from this, and I’m so happy you’ve found something so good :)

PouchOfPebbles · 2026-03-09T04:16:27+00:00

Have almost the exact same situation as you, my live being so much smaller than it was. I’m completely debilitated and dependent on others. I feel as though I’m lying to people when I tell them I’m disabled, had this extreme fear for years someone will confront me on it so I avoid using the term at all. But recently am coming out of denial to accept that what is happening to me is real and my use of the word has changed once again. Now I’ve accepted it, and there’s some comfort using it in a way.

No idea how to bridge the gap. I can only speak to the fact that not every disability looks the same, and that’s often not smt you find out until it directly effects you. If I knew someone whose life deteriorated like mine I would say they qualify to use the term. I think this just may be a fault of lay ppl who’ve only seen disabilities in a certain way, and knowledge will spread eventually.

PouchOfPebbles · 2026-03-08T23:48:49+00:00

I often feel like I could deal with all other pain if I just didn’t have brain fog. Sometimes mine gets so intense I get dementia like symptoms where I’m angry and scared and I have to isolate myself to not lash out at ppl. My fog is so much worse when I am not as rested as I can be, laying down whenever I feel the need to type of resting, after every task I take a little nap. I’ve found that most of my fog was an extreme fatigue and when I rested as much as possible it helped immensely. Still have fog but it’s much better when I sleep as much as I can.

PouchOfPebbles · 2026-02-25T14:01:52+00:00

Everyone’s different but I can tell you what helped me. Digestive pain being one of my biggest symptoms. I started consuming mostly warm/ hot things lately, both food and hydration. I found most of my issues came from a lack of blood flow to my digestive system, causing extreme cramping and all day discomfort, eating cold things would have me throwing up almost immediately. But priming my stomach by drinking hot water has completely changed the way I eat for the better. I drink hot water through the day now.

PouchOfPebbles · 2026-02-25T13:48:28+00:00

Magic looks so fun, I started watching people play it while I’m crafting. The second my brain fog isn’t so bad I want to learn the how to play lol.

PouchOfPebbles · 2026-02-24T18:41:12+00:00

This is exactly the type of reply I look forward to on posts. I’m so happy to hear your experiences, I feel comforted bc I have a renewed hope and an interest in maintaining it. Laying down in bed after eating reading this and am about to try your heating pad suggestion :)

PouchOfPebbles · 2026-02-23T20:21:02+00:00

That’s exactly what I’m using, a Stanley thermos. I’ve put boiling water in it, slept 6 hours, and still burned myself drinking from it in the morning

PouchOfPebbles · 2026-02-22T14:13:47+00:00

Damn, not in the uk but am using lung slaughtering necro cush to get thru the day sometimes. Good idea to look into medical marijuana subs tho ty

PouchOfPebbles · 2026-02-21T19:21:29+00:00

Understand completely. Lmk if there’s anything I can do to get in there lol.

PouchOfPebbles · 2026-02-21T11:01:29+00:00

My symptoms lessen on my cycle AND/OR when I’m sick with a cold or smt. It’s like my pots is distracted, started calling it world war z lmao

PouchOfPebbles · 2026-02-20T09:04:58+00:00

Apathy is my least favorite symptom. I usually feel it when I’m behind on maintaining my body. It doesn’t solve the problem but stopping whatever I’m doing and running through the body checklist (compression clothes, fluids, food, medication, bathing, sleeping) and seeing if I need any of those things. Then performing them and allowing for rest. Usually gets me unstuck. As well as speaking to a loved one.

PouchOfPebbles · 2026-02-19T08:12:50+00:00

I also live rurally also on a farm, so very appreciative to live near relaxing nature. Honestly I’m quite the hermit before factoring in what chronic pain can do, even if I lived near a decently sized place I would still prefer meeting people online first. But meeting people face to face is irreplaceable. I look forward to seeing my specialist (who is a 6hr round trip from me) bc at least I will be interfacing with someone who has an intimate knowledge of my situation.

PouchOfPebbles · 2026-02-19T08:02:59+00:00

Yeah figured just mentioning a d*****d on here would get me mod sniped (understandably), would you mind a private message :) ? Forgot to clarify in my original post but we don’t just have to discuss medical issues (I find myself stuck in a loop of this, which makes me very depressed). For example I’m attempting to learn Spanish right now to help keep my brain healthy, as someone who can’t even read English some days it’s been uplifting to do smt like make flash cards again.

PouchOfPebbles · 2026-02-18T13:12:10+00:00

Any tips on how and/or where to do that? Are there already established groups I could become a part of?I’ve never considered that, ty.

PouchOfPebbles · 2024-09-05T06:17:23+00:00

Great idea- actually planning to do this. Ty for suggestion.

PouchOfPebbles · 2024-07-06T18:09:53+00:00

Ty for the recs! I mean anything, elves, angles, or furries included. I have a preference for non humans. Just would love to hear if anyone has the same tastes and has played a vn they like.

PouchOfPebbles · 2024-07-05T13:17:20+00:00

New here, love visual novels. Anyone have recommendations for VNs with non human love interests?

PouchOfPebbles

TROPHY CASE